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"content": "\u003cp>\u003cstrong>Wednesday, April 1:\u003c/strong> After the trial, a federal jury on Tuesday unanimously returned a $5 million verdict for Joseph Sample Jr. over his allegations of years of harassment at Cemex.\u003c/p>\n\u003cp>“My mom, who has passed away, told me to stand up for myself against these people and I could help change the culture of the company,” Sample said in a statement. “Despite the constant abuse, I always tried to be the best employee I could be.”\u003c/p>\n\u003cp>\u003cem>Original story below:\u003c/em>\u003c/p>\n\u003cp>A disabled Black truck driver who said he was subjected to years of racial slurs, mockery and a hostile work environment at the cement company Cemex’s \u003ca href=\"https://www.kqed.org/news/tag/east-bay\">East Bay\u003c/a> plants — and then fired after he repeatedly raised his concerns — is having his complaint heard in federal court in San Francisco.\u003c/p>\n\u003cp>Opening statements began on Monday before Judge William H. Orrick in the U.S. District Court for the Northern District of California. Joseph Sample Jr., who worked as a ready-mix truck driver at company plants in Antioch and Concord, is \u003ca href=\"https://storage.courtlistener.com/recap/gov.uscourts.cand.407806/gov.uscourts.cand.407806.105.0.pdf\">seeking $15 million in damages\u003c/a> from Cemex, one of the largest cement and building materials companies in the world, with \u003ca href=\"https://www.cemexusa.com/find-your-location\">nine ready-mix concrete plants\u003c/a> in the Bay Area.\u003c/p>\n\u003cp>Sample’s attorney, Adante Pointer, told jurors the evidence would show a pattern of unchecked harassment that lasted more than five years and a company that failed to act on it.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“The evidence will show Cemex Corporation permitted its workers to harass my client because of his disability and race … and did nothing to protect him,” Pointer said in his opening statement. “You are going to hear evidence right here on this witness stand that Mr. Sample’s coworkers called him the N-word, monkey, retarded and other despicable names.”\u003c/p>\n\u003cp>Pointer told jurors that Sample was born with a disability affecting one ear, leaving him hard to understand at times, and that he walked with a limp. Despite that, Pointer said, Sample took tremendous pride in his work — a pride that was eroded as harassment intensified.\u003c/p>\n\u003cp>“His mother asked what was going on,” Pointer said. “You will learn that he told his mom that what was once his dream job had turned into a nightmare.”\u003c/p>\n\u003cfigure id=\"attachment_11999875\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11999875\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1.jpg\" alt=\"\" width=\"2000\" height=\"1335\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1-800x534.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1-1020x681.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1-1536x1025.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/08/Courthouse1-1920x1282.jpg 1920w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">The Phillip Burton Federal Building and United States Courthouse in San Francisco, on March 6, 2018. \u003ccite>(Lauren Hanussak/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Pointer also told jurors that Sample filed his first lawsuit in January 2023 without an attorney — and that even after he did, Cemex’s human resources department never interviewed him or opened an investigation.\u003c/p>\n\u003cp>Cemex’s attorney, Dorothy Liu, disputed the allegations in her own opening statement, arguing that the company’s full record tells a different story.\u003c/p>\n\u003cp>“At no time did Mr. Sample or anyone on his behalf report racial slurs … being used in the workplace,” Liu said, adding that there are three ways employees can formally report such conduct at Cemex and that Sample used none to raise complaints of slurs or derogatory language. “We had no idea before he filed this lawsuit.”\u003c/p>\n\u003cp>Liu walked jurors through a timeline she said shows the conflict at the center of the case stemmed from workplace safety disputes and personality clashes — not racial or disability-based discrimination. She said Cemex granted Sample multiple leaves of absence that were not required to provide, and added that when coworkers raised concerns, it was over safety issues, not harassment.[aside postID=news_12074694 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2026/02/ImmigrantTruckLicensesAP.jpg']Liu pointed to a March 2022 workplace accident in which she said Sample ran a red light with a mixer truck, and she said coworkers reported feeling unsafe around him over on-the-job safety disputes.\u003c/p>\n\u003cp>The first witness to take the stand was Thomas Milano, a former Cemex driver and trainer of 23 years, who said he trained Sample around 2017 and 2018, and later became a close friend. Milano testified that he began hearing coworkers refer to Sample as “the retard” in break rooms at both the Antioch and Concord plants, on multiple occasions, from multiple drivers.\u003c/p>\n\u003cp>“Much of the conversation about Joseph was: ‘Where’s the retard?’” Milano said. “He seemed to be the entertainment.”\u003c/p>\n\u003cp>Milano said he personally reported what he observed to an HR representative and plant supervisor named in the lawsuit, telling them explicitly that Sample was experiencing a hostile work environment and should be transferred to the Concord yard.\u003c/p>\n\u003cp>“I told her this was a hostile work environment for the guy. I said, this is a hostile work environment, he is being harassed,” Milano said, adding that he used those words exactly.\u003c/p>\n\u003cp>When Pointer asked whether anyone from Cemex’s HR department ever followed up or interviewed Milano after his reports, Milano said no.\u003c/p>\n\u003cp>“I did it because I was his friend. I did it because I was his coworker. I did it because I was a shop steward. I did it because it was the right thing to do,” Milano said. “You see harassment, you report it.”\u003c/p>\n\u003cp>The trial is expected to continue in the coming days with additional witness testimony. Cemex disputes that Sample was subjected to unlawful harassment or discrimination.\u003c/p>\n\u003cp>\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Liu pointed to a March 2022 workplace accident in which she said Sample ran a red light with a mixer truck, and she said coworkers reported feeling unsafe around him over on-the-job safety disputes.\u003c/p>\n\u003cp>The first witness to take the stand was Thomas Milano, a former Cemex driver and trainer of 23 years, who said he trained Sample around 2017 and 2018, and later became a close friend. Milano testified that he began hearing coworkers refer to Sample as “the retard” in break rooms at both the Antioch and Concord plants, on multiple occasions, from multiple drivers.\u003c/p>\n\u003cp>“Much of the conversation about Joseph was: ‘Where’s the retard?’” Milano said. “He seemed to be the entertainment.”\u003c/p>\n\u003cp>Milano said he personally reported what he observed to an HR representative and plant supervisor named in the lawsuit, telling them explicitly that Sample was experiencing a hostile work environment and should be transferred to the Concord yard.\u003c/p>\n\u003cp>“I told her this was a hostile work environment for the guy. I said, this is a hostile work environment, he is being harassed,” Milano said, adding that he used those words exactly.\u003c/p>\n\u003cp>When Pointer asked whether anyone from Cemex’s HR department ever followed up or interviewed Milano after his reports, Milano said no.\u003c/p>\n\u003cp>“I did it because I was his friend. I did it because I was his coworker. I did it because I was a shop steward. I did it because it was the right thing to do,” Milano said. “You see harassment, you report it.”\u003c/p>\n\u003cp>The trial is expected to continue in the coming days with additional witness testimony. Cemex disputes that Sample was subjected to unlawful harassment or discrimination.\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>",
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"content": "\u003cp>With a smile, Brittanie Hernandez-Wilson, 38, closes her eyes when she says her friend’s name. She pauses. A tear rolls down her cheek.\u003c/p>\n\u003cp>“There’s a real level of rage that I feel around Alice’s death,” she said.\u003c/p>\n\u003cp>It’s been \u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\"> a month\u003c/a> since disability activist and author \u003ca href=\"https://www.kqed.org/forum/2010101912041/remembering-disability-activist-alice-wong\">Alice Wong\u003c/a> died in San Francisco. Since her passing, KQED has spoken with many of Wong’s friends and collaborators in the Bay Area to better understand what motivated her decades of organizing.\u003c/p>\n\u003cp>In her writings and public appearances, Wong spoke of the need for disabled people to advocate loudly for their health needs. This mission brought together a bold and effective network of advocates living with different disabilities. But now, folks are preparing for the biggest challenge yet: more than a trillion dollars in cuts to Medicaid and other social services in the coming decade, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">slashing a lifeline\u003c/a> for disabled people nationwide.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”\u003c/p>\n\u003cp>Raised in rural Minnesota, Hernandez-Wilson was the only student with a disability in her class and one of the few students of color in her entire school. “I was afraid that if I was labeled as a certain type of disabled person, I would be locked away in a classroom … that deep internalized ableism can really mess with your mind,” she said.\u003c/p>\n\u003cp>As an adult, she picked up \u003ca href=\"https://www.penguinrandomhouse.com/books/617802/disability-visibility-by-alice-wong/\">\u003cem>Disability Visibility: First-Person Stories from the Twenty-First Century\u003c/em>\u003c/a>, an anthology edited by Wong.\u003c/p>\n\u003cfigure id=\"attachment_12065500\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065500\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, left, and Brittanie Hernandez-Wilson, right, hold hands at Lake Merritt in Oakland on Nov. 24, 2025. Hernandez-Wilson and Ho, who both worked closely with disability justice leader Alice Wong, are mourning their loss, yet continuing their fight for disability justice. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It was the first time in my entire life that I really saw disabled people who looked like me embody self-love, embracing their body and mind,” she said. “It was like a hug from the universe.”\u003c/p>\n\u003cp>After Hernandez-Wilson moved to the Bay Area last year, Wong became her mentor and friend. They shared jokes, stories of old crushes and how each managed their health. Born with spinal muscular atrophy, Wong dealt with chronic health issues throughout her life. After a series of medical emergencies in 2022, she began communicating \u003ca href=\"https://www.kqed.org/perspectives/201601143471/alice-wong-i-still-have-a-voice-2\">through text-to-speech technology\u003c/a> and her family confirmed that her death was due to an infection.\u003c/p>\n\u003cp>“If the systems weren’t the way they are, many of our people would still be here,” said Hernandez-Wilson. But even after Wong’s passing, she said, a generation of activists mentored by her is ready to push forward a bolder vision of liberation for all disabled people.\u003c/p>\n\u003ch2>Centering the most marginalized\u003c/h2>\n\u003cp>Gifted with radiant charm and a disarming sense of humor, Wong, who was 51, built coalitions between different disabled communities. Cross-disability solidarity is \u003ca href=\"https://sinsinvalid.org/10-principles-of-disability-justice/\">a core principle of disability justice\u003c/a>, a framework developed over the last decade by queer and trans disabled activists of color in California.\u003c/p>\n\u003cp>In the 20th century, the primary objective for many disabled activists was securing equal employment, political participation and economic self-sufficiency — as outlined in the Americans with Disabilities Act of 1980.\u003c/p>\n\u003cfigure id=\"attachment_12065194\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065194\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong, a disability rights activist and founder of the Disability Visibility Project, sits in the courtyard at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This organizing was rooted in the Bay Area: the independent living movement \u003ca href=\"https://www.kalw.org/news/2017-04-05/berkeley-disability-activists-took-cues-from-the-civil-rights-era-and-sparked-a-national-movement\">took off here in the 1970s\u003c/a>; activists in Berkeley created the state’s \u003ca href=\"https://www.pbs.org/wgbh/americanexperience/features/they-took-sledgehammers-sidewalks-heres-why-curb-cut-effect/\">first sidewalk curb cuts\u003c/a>; and in 1977, \u003ca href=\"https://www.kqed.org/arts/13966861/judith-heumann-disability-rights-uc-berkeley-center-independent-living\">more than 100 disabled protesters\u003c/a> occupied the San Francisco Federal Building to demand implementation of the rule that prohibited discrimination based on disability in federally funded programs.\u003c/p>\n\u003cp>Proponents of disability justice maintain that ableism affects everyone — particularly those living with disabilities — and call for a future free of all systems that oppress disabled people. This fight, Wong said in \u003ca href=\"https://www.buzzsprout.com/2003809/episodes/10799918-making-the-world-brighter-sassier-and-more-colorful-alice-wong-on-disability-justice\">a 2022 podcast\u003c/a>, “must center on the most marginalized.” Nowhere is this more necessary, she added, than in a post-COVID world.\u003c/p>\n\u003cp>While cities and states rushed to loosen pandemic restrictions, Wong pushed back and demanded hospitals — including her own care provider, UCSF — continue \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/\">requiring face masks\u003c/a> and expand \u003ca href=\"https://nursing.ucsf.edu/news/disability-and-health-care-conversation-activist-alice-wong\">research into treatments\u003c/a> for those living with long COVID.[aside postID=news_11984990 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2023/12/Featured-photo-horizontal-Alice-Wong-1020x574.png']That’s how she met Charlie McCone.\u003c/p>\n\u003cp>Before contracting COVID in 2020, McCone, 35, said he had never experienced a serious health problem before.\u003c/p>\n\u003cp>“When you go from biking 10 miles a day to work to being housebound indefinitely, losing your job and not having any answers from the medical system, it is absolutely devastating,” he said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> — a chronic condition that follows many coronavirus infections and still confounds researchers — permanently altered McCone’s life.\u003c/p>\n\u003cp>Searching for answers to his condition, he joined Twitter (now known as X). From his San Francisco home, he shared his experiences online, hoping more people would take long COVID seriously. But after two years, “I came to the realization that otherwise good and reasonable people are still completely unfazed by the fact that their next COVID infection could cause extreme harm to them or their family,” he said.\u003c/p>\n\u003cp>He started to feel rage at the injustices he saw.\u003c/p>\n\u003cp>“People disabled by this virus and those already disabled prior to the pandemic are being completely disregarded and considered disposable by the general public,” he said.\u003c/p>\n\u003ch2>Preparing for cuts\u003c/h2>\n\u003cp>While others recommended he temper his emotions online, Wong encouraged McCone to lean into them. They met in person for the first time in 2023 over tea and soon got to work: over the next year, their online network launched \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/\">a massive social media campaign\u003c/a> to pressure federal lawmakers to address the needs of those with long COVID.\u003c/p>\n\u003cp>Their efforts would bear fruit in January 2024 when Sen. Bernie Sanders (I-Vermont) held the \u003ca href=\"https://www.npr.org/2024/01/20/1225862790/advocates-push-for-greater-investment-in-long-covid-research-at-senate-hearing\">first Congressional hearing\u003c/a> on long COVID. Patients and doctors testified and called for long-term investments in research. Democrats \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">later proposed $10 billion\u003c/a> in funding for research, treatment and education.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052187\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, Director of the Mayor’s Office on Disability, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, Deputy Director of Programmatic Access, at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Alice could make incredibly meaningful change through media,” McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever.\u003c/p>\n\u003cp>Legislation to fund long COVID research has stalled since Republicans took control of Congress, but the Trump administration is moving quickly to implement \u003ca href=\"https://www.kqed.org/science/1997707/how-will-trumps-mega-bill-impact-health-care-in-california\">major health care reforms\u003c/a> outlined in the sweeping legislation known as the One Big Beautiful Bill.\u003c/p>\n\u003cp>The bill establishes \u003ca href=\"https://www.kqed.org/news/12047647/trumps-health-law-spurs-big-medi-cal-changes-what-californians-need-to-know\">new eligibility rules for Medi-Cal\u003c/a>, the state’s Medicaid program that covers over 15 million low-income Californians. State health officials predict that up to 3.4 million Medi-Cal recipients could lose their coverage in the coming years under new rules that include more frequent eligibility screenings and work requirements for certain groups. While the White House \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">insists\u003c/a> that the bill will not take coverage away from Americans with disabilities, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">independent policy experts note\u003c/a> that California will lose matching federal funds as residents lose their Medi-Cal coverage.\u003c/p>\n\u003cp>State lawmakers could respond by \u003ca href=\"https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled\">cutting home and community-based services\u003c/a>, which allow people with disabilities to receive treatment, care and job training in their own communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“If you really want people with disabilities to get jobs, then you don’t cut the health care that allows people to stay well enough to work,” said Silvia Yee, public policy director at the Berkeley-based Disability Rights Education and Defense Fund. “You don’t cut the services that help people with disabilities navigate hiring and settling into a job.”\u003c/p>\n\u003cp>Besides Medicaid changes, Yee noted that the One Big Beautiful Bill also failed to extend subsidies for people who bought health insurance through Affordable Care Act marketplaces like Covered California. Many people with a disability or chronic illness have an ACA insurance plan and will have to pay more to receive necessary care.\u003c/p>\n\u003cp>“These all seem like different cuts, but they affect the same pool of people,” Yee said. “All of this together makes it incredibly hard for people with disabilities to participate and live as part of the community.”\u003c/p>\n\u003ch2>‘The weight of carrying out disability justice’\u003c/h2>\n\u003cp>The future can quite often feel precarious when you’re disabled, said Sandy Ho, one of Wong’s closest friends and executive director of the Disability and Philanthropy Forum. Ho, originally from Boston, met Wong 15 years ago online. They didn’t meet in person until Ho moved to Oakland, but the bond of their friendship endured.\u003c/p>\n\u003cp>“There are always forces trying to take away our health care, and Alice understood that on a level that emboldened her to just say, ‘F— it all, either you’re with me, or you’re not,’” said Ho, who Wong tasked with carrying forward some of her unfinished projects, including her next book.\u003c/p>\n\u003cfigure id=\"attachment_12065498\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065498\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, a disability justice activist, poses for a portrait at Lake Merritt in Oakland on Nov. 24, 2025. Ho worked closely with Alice Wong, a disability justice leader who died in November. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“So many of us got to witness her life and be a part of it on so many different levels,” she said, adding that Wong loved organizing dinner parties for her friends, bringing together artists, organizers, researchers and health care workers. “She is our future — the future looks like getting fed really well because disabled people deserve delicious things. Disabled people deserve joy, to have fun and create.”\u003c/p>\n\u003cp>This year also saw the death of another leader in the disabled community: Patty Berne — co-founder of the Bay Area-based performance group \u003ca href=\"https://sinsinvalid.org/about-sins/\">Sins Invalid\u003c/a> and one of the minds behind the disability justice framework — \u003ca href=\"https://19thnews.org/2025/08/patty-berne-obituary-disability-justice-movement/\">died last May in Berkeley\u003c/a>.\u003c/p>\n\u003cp>“One of the things that I have unfortunately experienced a lot in the disability community is grief,” said Rosemary McDonnell-Horita, a Berkeley-based writer who was a friend to Wong and Berne. “The depths of love also come with the depths of grief.”\u003c/p>\n\u003cp>Campaigns both online and in Sacramento \u003ca href=\"https://dredf.org/oppose-cuts-to-medi-cal/\">are already underway\u003c/a> to protect Medi-Cal funding that serves disabled Californians. Other friends of Wong are \u003ca href=\"https://llps.substack.com/p/alice-wong-was-crips-for-esims-for\">continuing her call\u003c/a> to help provide disabled Palestinians in Gaza with cellular data. And McDonnell-Horita plans to keep working on a project that Wong loudly cheered: a cookbook for disabled people by disabled people.\u003c/p>\n\u003cp>“We all now bear the weight of carrying out disability justice to the best of our ability,” she said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>With a smile, Brittanie Hernandez-Wilson, 38, closes her eyes when she says her friend’s name. She pauses. A tear rolls down her cheek.\u003c/p>\n\u003cp>“There’s a real level of rage that I feel around Alice’s death,” she said.\u003c/p>\n\u003cp>It’s been \u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\"> a month\u003c/a> since disability activist and author \u003ca href=\"https://www.kqed.org/forum/2010101912041/remembering-disability-activist-alice-wong\">Alice Wong\u003c/a> died in San Francisco. Since her passing, KQED has spoken with many of Wong’s friends and collaborators in the Bay Area to better understand what motivated her decades of organizing.\u003c/p>\n\u003cp>In her writings and public appearances, Wong spoke of the need for disabled people to advocate loudly for their health needs. This mission brought together a bold and effective network of advocates living with different disabilities. But now, folks are preparing for the biggest challenge yet: more than a trillion dollars in cuts to Medicaid and other social services in the coming decade, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">slashing a lifeline\u003c/a> for disabled people nationwide.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”\u003c/p>\n\u003cp>Raised in rural Minnesota, Hernandez-Wilson was the only student with a disability in her class and one of the few students of color in her entire school. “I was afraid that if I was labeled as a certain type of disabled person, I would be locked away in a classroom … that deep internalized ableism can really mess with your mind,” she said.\u003c/p>\n\u003cp>As an adult, she picked up \u003ca href=\"https://www.penguinrandomhouse.com/books/617802/disability-visibility-by-alice-wong/\">\u003cem>Disability Visibility: First-Person Stories from the Twenty-First Century\u003c/em>\u003c/a>, an anthology edited by Wong.\u003c/p>\n\u003cfigure id=\"attachment_12065500\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065500\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00424_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, left, and Brittanie Hernandez-Wilson, right, hold hands at Lake Merritt in Oakland on Nov. 24, 2025. Hernandez-Wilson and Ho, who both worked closely with disability justice leader Alice Wong, are mourning their loss, yet continuing their fight for disability justice. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It was the first time in my entire life that I really saw disabled people who looked like me embody self-love, embracing their body and mind,” she said. “It was like a hug from the universe.”\u003c/p>\n\u003cp>After Hernandez-Wilson moved to the Bay Area last year, Wong became her mentor and friend. They shared jokes, stories of old crushes and how each managed their health. Born with spinal muscular atrophy, Wong dealt with chronic health issues throughout her life. After a series of medical emergencies in 2022, she began communicating \u003ca href=\"https://www.kqed.org/perspectives/201601143471/alice-wong-i-still-have-a-voice-2\">through text-to-speech technology\u003c/a> and her family confirmed that her death was due to an infection.\u003c/p>\n\u003cp>“If the systems weren’t the way they are, many of our people would still be here,” said Hernandez-Wilson. But even after Wong’s passing, she said, a generation of activists mentored by her is ready to push forward a bolder vision of liberation for all disabled people.\u003c/p>\n\u003ch2>Centering the most marginalized\u003c/h2>\n\u003cp>Gifted with radiant charm and a disarming sense of humor, Wong, who was 51, built coalitions between different disabled communities. Cross-disability solidarity is \u003ca href=\"https://sinsinvalid.org/10-principles-of-disability-justice/\">a core principle of disability justice\u003c/a>, a framework developed over the last decade by queer and trans disabled activists of color in California.\u003c/p>\n\u003cp>In the 20th century, the primary objective for many disabled activists was securing equal employment, political participation and economic self-sufficiency — as outlined in the Americans with Disabilities Act of 1980.\u003c/p>\n\u003cfigure id=\"attachment_12065194\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065194\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/250813-DisabilityCulturalCenter-10_qed-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Alice Wong, a disability rights activist and founder of the Disability Visibility Project, sits in the courtyard at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>This organizing was rooted in the Bay Area: the independent living movement \u003ca href=\"https://www.kalw.org/news/2017-04-05/berkeley-disability-activists-took-cues-from-the-civil-rights-era-and-sparked-a-national-movement\">took off here in the 1970s\u003c/a>; activists in Berkeley created the state’s \u003ca href=\"https://www.pbs.org/wgbh/americanexperience/features/they-took-sledgehammers-sidewalks-heres-why-curb-cut-effect/\">first sidewalk curb cuts\u003c/a>; and in 1977, \u003ca href=\"https://www.kqed.org/arts/13966861/judith-heumann-disability-rights-uc-berkeley-center-independent-living\">more than 100 disabled protesters\u003c/a> occupied the San Francisco Federal Building to demand implementation of the rule that prohibited discrimination based on disability in federally funded programs.\u003c/p>\n\u003cp>Proponents of disability justice maintain that ableism affects everyone — particularly those living with disabilities — and call for a future free of all systems that oppress disabled people. This fight, Wong said in \u003ca href=\"https://www.buzzsprout.com/2003809/episodes/10799918-making-the-world-brighter-sassier-and-more-colorful-alice-wong-on-disability-justice\">a 2022 podcast\u003c/a>, “must center on the most marginalized.” Nowhere is this more necessary, she added, than in a post-COVID world.\u003c/p>\n\u003cp>While cities and states rushed to loosen pandemic restrictions, Wong pushed back and demanded hospitals — including her own care provider, UCSF — continue \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/\">requiring face masks\u003c/a> and expand \u003ca href=\"https://nursing.ucsf.edu/news/disability-and-health-care-conversation-activist-alice-wong\">research into treatments\u003c/a> for those living with long COVID.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>That’s how she met Charlie McCone.\u003c/p>\n\u003cp>Before contracting COVID in 2020, McCone, 35, said he had never experienced a serious health problem before.\u003c/p>\n\u003cp>“When you go from biking 10 miles a day to work to being housebound indefinitely, losing your job and not having any answers from the medical system, it is absolutely devastating,” he said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> — a chronic condition that follows many coronavirus infections and still confounds researchers — permanently altered McCone’s life.\u003c/p>\n\u003cp>Searching for answers to his condition, he joined Twitter (now known as X). From his San Francisco home, he shared his experiences online, hoping more people would take long COVID seriously. But after two years, “I came to the realization that otherwise good and reasonable people are still completely unfazed by the fact that their next COVID infection could cause extreme harm to them or their family,” he said.\u003c/p>\n\u003cp>He started to feel rage at the injustices he saw.\u003c/p>\n\u003cp>“People disabled by this virus and those already disabled prior to the pandemic are being completely disregarded and considered disposable by the general public,” he said.\u003c/p>\n\u003ch2>Preparing for cuts\u003c/h2>\n\u003cp>While others recommended he temper his emotions online, Wong encouraged McCone to lean into them. They met in person for the first time in 2023 over tea and soon got to work: over the next year, their online network launched \u003ca href=\"https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/\">a massive social media campaign\u003c/a> to pressure federal lawmakers to address the needs of those with long COVID.\u003c/p>\n\u003cp>Their efforts would bear fruit in January 2024 when Sen. Bernie Sanders (I-Vermont) held the \u003ca href=\"https://www.npr.org/2024/01/20/1225862790/advocates-push-for-greater-investment-in-long-covid-research-at-senate-hearing\">first Congressional hearing\u003c/a> on long COVID. Patients and doctors testified and called for long-term investments in research. Democrats \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">later proposed $10 billion\u003c/a> in funding for research, treatment and education.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052187\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, Director of the Mayor’s Office on Disability, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, Deputy Director of Programmatic Access, at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Alice could make incredibly meaningful change through media,” McCone said, adding that folks living with long COVID need to keep sharing their stories — now more than ever.\u003c/p>\n\u003cp>Legislation to fund long COVID research has stalled since Republicans took control of Congress, but the Trump administration is moving quickly to implement \u003ca href=\"https://www.kqed.org/science/1997707/how-will-trumps-mega-bill-impact-health-care-in-california\">major health care reforms\u003c/a> outlined in the sweeping legislation known as the One Big Beautiful Bill.\u003c/p>\n\u003cp>The bill establishes \u003ca href=\"https://www.kqed.org/news/12047647/trumps-health-law-spurs-big-medi-cal-changes-what-californians-need-to-know\">new eligibility rules for Medi-Cal\u003c/a>, the state’s Medicaid program that covers over 15 million low-income Californians. State health officials predict that up to 3.4 million Medi-Cal recipients could lose their coverage in the coming years under new rules that include more frequent eligibility screenings and work requirements for certain groups. While the White House \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">insists\u003c/a> that the bill will not take coverage away from Americans with disabilities, \u003ca href=\"https://www.kqed.org/news/12058930/medicaid-cuts-could-put-services-for-disabled-californians-at-risk\">independent policy experts note\u003c/a> that California will lose matching federal funds as residents lose their Medi-Cal coverage.\u003c/p>\n\u003cp>State lawmakers could respond by \u003ca href=\"https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled\">cutting home and community-based services\u003c/a>, which allow people with disabilities to receive treatment, care and job training in their own communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“If you really want people with disabilities to get jobs, then you don’t cut the health care that allows people to stay well enough to work,” said Silvia Yee, public policy director at the Berkeley-based Disability Rights Education and Defense Fund. “You don’t cut the services that help people with disabilities navigate hiring and settling into a job.”\u003c/p>\n\u003cp>Besides Medicaid changes, Yee noted that the One Big Beautiful Bill also failed to extend subsidies for people who bought health insurance through Affordable Care Act marketplaces like Covered California. Many people with a disability or chronic illness have an ACA insurance plan and will have to pay more to receive necessary care.\u003c/p>\n\u003cp>“These all seem like different cuts, but they affect the same pool of people,” Yee said. “All of this together makes it incredibly hard for people with disabilities to participate and live as part of the community.”\u003c/p>\n\u003ch2>‘The weight of carrying out disability justice’\u003c/h2>\n\u003cp>The future can quite often feel precarious when you’re disabled, said Sandy Ho, one of Wong’s closest friends and executive director of the Disability and Philanthropy Forum. Ho, originally from Boston, met Wong 15 years ago online. They didn’t meet in person until Ho moved to Oakland, but the bond of their friendship endured.\u003c/p>\n\u003cp>“There are always forces trying to take away our health care, and Alice understood that on a level that emboldened her to just say, ‘F— it all, either you’re with me, or you’re not,’” said Ho, who Wong tasked with carrying forward some of her unfinished projects, including her next book.\u003c/p>\n\u003cfigure id=\"attachment_12065498\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12065498\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/11/251124-DISABILITYJUSTICELEADERS00080_TV-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Sandy Ho, a disability justice activist, poses for a portrait at Lake Merritt in Oakland on Nov. 24, 2025. Ho worked closely with Alice Wong, a disability justice leader who died in November. \u003ccite>(Tâm Vũ/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“So many of us got to witness her life and be a part of it on so many different levels,” she said, adding that Wong loved organizing dinner parties for her friends, bringing together artists, organizers, researchers and health care workers. “She is our future — the future looks like getting fed really well because disabled people deserve delicious things. Disabled people deserve joy, to have fun and create.”\u003c/p>\n\u003cp>This year also saw the death of another leader in the disabled community: Patty Berne — co-founder of the Bay Area-based performance group \u003ca href=\"https://sinsinvalid.org/about-sins/\">Sins Invalid\u003c/a> and one of the minds behind the disability justice framework — \u003ca href=\"https://19thnews.org/2025/08/patty-berne-obituary-disability-justice-movement/\">died last May in Berkeley\u003c/a>.\u003c/p>\n\u003cp>“One of the things that I have unfortunately experienced a lot in the disability community is grief,” said Rosemary McDonnell-Horita, a Berkeley-based writer who was a friend to Wong and Berne. “The depths of love also come with the depths of grief.”\u003c/p>\n\u003cp>Campaigns both online and in Sacramento \u003ca href=\"https://dredf.org/oppose-cuts-to-medi-cal/\">are already underway\u003c/a> to protect Medi-Cal funding that serves disabled Californians. Other friends of Wong are \u003ca href=\"https://llps.substack.com/p/alice-wong-was-crips-for-esims-for\">continuing her call\u003c/a> to help provide disabled Palestinians in Gaza with cellular data. And McDonnell-Horita plans to keep working on a project that Wong loudly cheered: a cookbook for disabled people by disabled people.\u003c/p>\n\u003cp>“We all now bear the weight of carrying out disability justice to the best of our ability,” she said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"slug": "california-students-with-disabilities-fear-cuts-after-trumps-policy-changes",
"title": "California Students With Disabilities Fear Cuts After Trump's Policy Changes",
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"content": "\u003cp>Sleep is a rare commodity at Lindsay Crain’s house. Most nights, she and her husband are up dozens of times, tending to their daughter’s seizures. The 16-year-old flails her arms, thrashes and kicks — sometimes for hours.\u003c/p>\n\u003cp>But these days, that’s not the only thing keeping Crain awake. The Culver City mother worries about how President Donald Trump’s myriad budget cuts could strip their daughter of services she needs to go to school, live at home and enjoy a degree of independence that would have been impossible a generation ago.\u003c/p>\n\u003cp>“Every family I know is terrified right now,” Crain said. “We still have to live our everyday lives, which are challenging enough, but now it feels like our kids’ futures are at stake.”\u003c/p>\n\u003cp>Trump’s budget includes \u003ca href=\"https://www.google.com/search?client=safari&rls=en&q=how+much+medicaid+cuts&ie=UTF-8&oe=UTF-8\">nearly $1 trillion in cuts\u003c/a> to Medicaid, which funds a wide swath of services to disabled children, including speech, occupational and physical therapy, wheelchairs, in-home aides and medical care. All children with physical, developmental or cognitive disabilities – in California, nearly 1 million – receive at least some services through Medicaid.\u003c/p>\n\u003cp>Meanwhile, at the U.S. Department of Education, Trump has gutted the Office of Civil Rights, which is among the agencies that enforce the 50-year-old law granting students with disabilities the right to attend school and receive an education appropriate to their needs. Before that law was enacted, students with disabilities often didn’t attend school at all.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“We have a delicate web of services that, combined, support a whole child, a whole family,” said Kristin Wright, executive director of inclusive practices and systems at the Sacramento County Office of Education and the former California state director of special education. “So when the basic foundational structure is upended, like Medicaid, for example, it’s not just one cut from a knife. It’s multiple.”\u003c/p>\n\u003cp>Republicans have also suggested moving the office of special education out of the Department of Education altogether and moving it to the Department of Health and Human Services. Disability rights advocates say that would bring a medical – rather than a social – lens to special education, which they described as a major reversal of progress.\u003c/p>\n\u003cp>Trump has chipped away at other rights protecting people with disabilities, as well. In September, the U.S. Department of Transportation said it \u003ca href=\"https://www.reuters.com/world/usdot-will-not-enforce-biden-wheelchair-passenger-protection-rule-2025-09-29/\">would not enforce a rule\u003c/a> that requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word “\u003ca href=\"https://truthsocial.com/@realDonaldTrump/posts/115625429081411360\">retarded\u003c/a>,” widely considered a slur, \u003ca href=\"https://www.specialolympics.org/stories/news/resurgence-of-r-word-alarms-disability-advocates\">alarming advocates\u003c/a> who say it shows a lack of respect and understanding of the historical discrimination against people with disabilities. It’s all \u003ca href=\"https://www.newyorker.com/news/deep-state-diaries/donald-trumps-assault-on-disability-rights\">left some wondering\u003c/a> if the administration plans more cuts to hard-fought rights protecting people with disabilities.\u003c/p>\n\u003ch2>Fewer therapists, less equipment\u003c/h2>\n\u003cp>The Medicaid cuts may have the most immediate effect. People with developmental disabilities typically receive therapy, home visits from aides, equipment and other services through regional centers, a network of 21 mostly government-funded nonprofits in California that coordinate services for people with disabilities. The goal of regional centers is to help people with disabilities live as independently as possible.\u003cbr>\n[aside postID=\"mindshift_65382,news_12058726\" label=\"Related Stories\"]\u003cbr>\nMore than a third of regional centers’ funding comes from Medicaid, which is facing deep cuts under Trump’s budget. The money runs out at the end of January, and it’s unclear what services will be cut.\u003c/p>\n\u003cp>Schools also rely on Medicaid to pay for therapists, equipment, vision and hearing tests and other services that benefit all students, not just those with disabilities. In light of \u003ca href=\"https://calmatters.org/politics/2025/11/california-budget-lao-forecast/\">state budget uncertainty\u003c/a>, it’s not likely the state could backfill the loss of Medicaid funding, and schools would have to pare down their services.\u003c/p>\n\u003ch2>Uncertain futures\u003c/h2>\n\u003cp>For Lelah Coppedge, whose teenage son has cerebral palsy, the worst part is the uncertainty. She knows cuts are coming, but she doesn’t know when or what they’ll include.\u003c/p>\n\u003cp>“I go down this rabbit hole of worst-case scenarios,” said Coppedge, who lives in the Canoga Park neighborhood in Los Angeles. “Before this happened, I felt there was a clear path for my son. Now that path is going away, and it’s terrifying.”\u003c/p>\n\u003cp>Coppedge’s son, Jack, is a 16-year-old high school student who excels at algebra and physics. He loves video games and has a wide circle of friends at school. He uses a wheelchair and struggles with speech, communicating mostly through eye movements. He’ll look at his mom’s right hand to indicate “yes,” her left hand for “no.”\u003c/p>\n\u003cp>Coppedge and her husband rely on a nurse who comes four days a week to help Jack get dressed, get ready for bed and do other basic activities. Medicaid pays for the nurse, as well as other services like physical therapy. Even though Coppedge and her husband both work and have high-quality private health insurance, they could not afford Jack’s care without help from the government.\u003c/p>\n\u003cp>They also rely on the local regional center, which they assumed would help Jack after he graduates from high school, so he can remain at home, continue to hone his skills and generally live as independently as possible. If that funding vanishes, Coppedage worries Jack will someday end up in a facility where people don’t know him, don’t know how to communicate with him and don’t care about him.\u003c/p>\n\u003cp>“It feels like we’re going backward,” Coppedge said. “Half the time, I put my head in the sand because I’m just trying to manage the day-to-day. The rest of the time I worry that (the federal government) is looking at people like Jack as medical problems, not as unique people who want to have full, happy lives. It feels like that’s getting lost.”\u003c/p>\n\u003cp>The current uncertainty is stressful, but it’s even harder for families who are immigrants, Wright said. Those families are less likely to stand up for services they’re entitled to and are facing the extra fear of deportation. English learners, as well as low-income children, are disproportionately represented among students in special education, \u003ca href=\"https://dq.cde.ca.gov/dataquest/DQCensus/EnrELAS.aspx?cds=00&agglevel=State&year=2024-25\">according to state data\u003c/a>.\u003c/p>\n\u003cp>“That’s the other piece to all this — how it’s affecting immigrant families,” Wright said. “It’s a whole other level of anxiety and fear.”\u003c/p>\n\u003ch2>Decades of progress on the line\u003c/h2>\n\u003cp>Karma Quick-Panwala, an advocate at the nonprofit Disability Rights Education and Defense Fund, said she worries about the rollback of decades’ worth of progress that was hard-won by the disability rights community.\u003c/p>\n\u003cp>The \u003ca href=\"https://sites.ed.gov/idea/\">Individuals with Disabilities Education Act\u003c/a>, the 1975 law that created special education, actually predates the federal Department of Education. In fact, Congress created the department in part to oversee special education. Removing special ed would be a devastating blow to the disability community — not just because services might be curtailed, but philosophically, as well, Quick-Panwala said.\u003c/p>\n\u003cp>In the Department of Education, special education is under the purview of education experts who promote optimal ways to educate students with disabilities, so they can learn, graduate from high school and ideally go on to productive lives. In the Department of Health and Human Services, special education would no longer be overseen by educators but by those in the medical field, where they’re more likely to “look at disability as something to be cured or segregated and set aside,” Quick-Panwala said.\u003c/p>\n\u003cp>“The disability rights community has worked so hard and gave so much to make sure people with disabilities had a right to a meaningful education, so they could have gainful employment opportunities and participate in the world,” Quick-Panwala said. “The idea is that they wouldn’t just be present at school, but they would actually learn and thrive.”\u003c/p>\n\u003cp>For the time being, Wright, Quick-Panwala and other advocates are reminding families that federal funding might be shrinking, but the laws remain unchanged. Students are still entitled under federal law to the services outlined in their individual education plans, regardless of whether there’s money to pay for it. The funding will have to come from somewhere, at least for now, even if that means cutting it from another program. And California is unlikely to roll back its own special education protections, regardless of what happens in Washington, D.C.\u003c/p>\n\u003ch2>An imperfect but successful routine\u003c/h2>\n\u003cp>Those reassurances are scant comfort to Crain, whose daughter Lena will rely on government support her entire life. Born seven weeks prematurely, Lena has cerebral palsy, epilepsy, a cognitive impairment and is on the deaf-blind spectrum. But she has a 100-watt smile and a relentless spirit, Crain said. Even after the whole family has been up all night, Lena insists on going to school and getting the most out of every day.\u003c/p>\n\u003cfigure id=\"attachment_12066343\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12066343\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg\" alt=\"A man and two women stand next to each other on a deck outside a home.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left, Jack Deacy, his daughter Lena Deacy, and Lindsay Crain at their home in Culver City on Dec. 1, 2025. The family fears potential Medicaid cuts because Lena, who has cerebral palsy, epilepsy and other medical conditions, relies on Medicaid-funded services for her daily care and well-being. \u003ccite>(Zaydee Sanchez/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Funny and assertive, she has a few close friends and, like many teenagers, plenty of opinions about her parents. She loves her English teacher and spends most of her day in regular classrooms with help from an aide. Her favorite book is about Malala Yousafzai, the Pakistani activist who won a Nobel Peace Prize for fighting for girls’ right to an education.\u003c/p>\n\u003cp>Between school and home visits from aides and after-school therapists, Crain feels the family has pieced together an imperfect but mostly successful routine for Lena.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“Our entire lives are about teaching her self-advocacy, so she can have the most independent life possible,” Crain said. “Just because you need support doesn’t mean you can’t have a say in your life. There’s been so much work around the culture and the laws and the education system to make sure disabled people can make their own choices in life. We’re absolutely terrified of losing that.”\u003c/p>\n\n",
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"excerpt": "Trump has cut funding to Medicaid, which pays for many services for students with disabilities. He also gutted the Office of Civil Rights, which helps enforce disability law.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Sleep is a rare commodity at Lindsay Crain’s house. Most nights, she and her husband are up dozens of times, tending to their daughter’s seizures. The 16-year-old flails her arms, thrashes and kicks — sometimes for hours.\u003c/p>\n\u003cp>But these days, that’s not the only thing keeping Crain awake. The Culver City mother worries about how President Donald Trump’s myriad budget cuts could strip their daughter of services she needs to go to school, live at home and enjoy a degree of independence that would have been impossible a generation ago.\u003c/p>\n\u003cp>“Every family I know is terrified right now,” Crain said. “We still have to live our everyday lives, which are challenging enough, but now it feels like our kids’ futures are at stake.”\u003c/p>\n\u003cp>Trump’s budget includes \u003ca href=\"https://www.google.com/search?client=safari&rls=en&q=how+much+medicaid+cuts&ie=UTF-8&oe=UTF-8\">nearly $1 trillion in cuts\u003c/a> to Medicaid, which funds a wide swath of services to disabled children, including speech, occupational and physical therapy, wheelchairs, in-home aides and medical care. All children with physical, developmental or cognitive disabilities – in California, nearly 1 million – receive at least some services through Medicaid.\u003c/p>\n\u003cp>Meanwhile, at the U.S. Department of Education, Trump has gutted the Office of Civil Rights, which is among the agencies that enforce the 50-year-old law granting students with disabilities the right to attend school and receive an education appropriate to their needs. Before that law was enacted, students with disabilities often didn’t attend school at all.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“We have a delicate web of services that, combined, support a whole child, a whole family,” said Kristin Wright, executive director of inclusive practices and systems at the Sacramento County Office of Education and the former California state director of special education. “So when the basic foundational structure is upended, like Medicaid, for example, it’s not just one cut from a knife. It’s multiple.”\u003c/p>\n\u003cp>Republicans have also suggested moving the office of special education out of the Department of Education altogether and moving it to the Department of Health and Human Services. Disability rights advocates say that would bring a medical – rather than a social – lens to special education, which they described as a major reversal of progress.\u003c/p>\n\u003cp>Trump has chipped away at other rights protecting people with disabilities, as well. In September, the U.S. Department of Transportation said it \u003ca href=\"https://www.reuters.com/world/usdot-will-not-enforce-biden-wheelchair-passenger-protection-rule-2025-09-29/\">would not enforce a rule\u003c/a> that requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word “\u003ca href=\"https://truthsocial.com/@realDonaldTrump/posts/115625429081411360\">retarded\u003c/a>,” widely considered a slur, \u003ca href=\"https://www.specialolympics.org/stories/news/resurgence-of-r-word-alarms-disability-advocates\">alarming advocates\u003c/a> who say it shows a lack of respect and understanding of the historical discrimination against people with disabilities. It’s all \u003ca href=\"https://www.newyorker.com/news/deep-state-diaries/donald-trumps-assault-on-disability-rights\">left some wondering\u003c/a> if the administration plans more cuts to hard-fought rights protecting people with disabilities.\u003c/p>\n\u003ch2>Fewer therapists, less equipment\u003c/h2>\n\u003cp>The Medicaid cuts may have the most immediate effect. People with developmental disabilities typically receive therapy, home visits from aides, equipment and other services through regional centers, a network of 21 mostly government-funded nonprofits in California that coordinate services for people with disabilities. The goal of regional centers is to help people with disabilities live as independently as possible.\u003cbr>\n\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cbr>\nMore than a third of regional centers’ funding comes from Medicaid, which is facing deep cuts under Trump’s budget. The money runs out at the end of January, and it’s unclear what services will be cut.\u003c/p>\n\u003cp>Schools also rely on Medicaid to pay for therapists, equipment, vision and hearing tests and other services that benefit all students, not just those with disabilities. In light of \u003ca href=\"https://calmatters.org/politics/2025/11/california-budget-lao-forecast/\">state budget uncertainty\u003c/a>, it’s not likely the state could backfill the loss of Medicaid funding, and schools would have to pare down their services.\u003c/p>\n\u003ch2>Uncertain futures\u003c/h2>\n\u003cp>For Lelah Coppedge, whose teenage son has cerebral palsy, the worst part is the uncertainty. She knows cuts are coming, but she doesn’t know when or what they’ll include.\u003c/p>\n\u003cp>“I go down this rabbit hole of worst-case scenarios,” said Coppedge, who lives in the Canoga Park neighborhood in Los Angeles. “Before this happened, I felt there was a clear path for my son. Now that path is going away, and it’s terrifying.”\u003c/p>\n\u003cp>Coppedge’s son, Jack, is a 16-year-old high school student who excels at algebra and physics. He loves video games and has a wide circle of friends at school. He uses a wheelchair and struggles with speech, communicating mostly through eye movements. He’ll look at his mom’s right hand to indicate “yes,” her left hand for “no.”\u003c/p>\n\u003cp>Coppedge and her husband rely on a nurse who comes four days a week to help Jack get dressed, get ready for bed and do other basic activities. Medicaid pays for the nurse, as well as other services like physical therapy. Even though Coppedge and her husband both work and have high-quality private health insurance, they could not afford Jack’s care without help from the government.\u003c/p>\n\u003cp>They also rely on the local regional center, which they assumed would help Jack after he graduates from high school, so he can remain at home, continue to hone his skills and generally live as independently as possible. If that funding vanishes, Coppedage worries Jack will someday end up in a facility where people don’t know him, don’t know how to communicate with him and don’t care about him.\u003c/p>\n\u003cp>“It feels like we’re going backward,” Coppedge said. “Half the time, I put my head in the sand because I’m just trying to manage the day-to-day. The rest of the time I worry that (the federal government) is looking at people like Jack as medical problems, not as unique people who want to have full, happy lives. It feels like that’s getting lost.”\u003c/p>\n\u003cp>The current uncertainty is stressful, but it’s even harder for families who are immigrants, Wright said. Those families are less likely to stand up for services they’re entitled to and are facing the extra fear of deportation. English learners, as well as low-income children, are disproportionately represented among students in special education, \u003ca href=\"https://dq.cde.ca.gov/dataquest/DQCensus/EnrELAS.aspx?cds=00&agglevel=State&year=2024-25\">according to state data\u003c/a>.\u003c/p>\n\u003cp>“That’s the other piece to all this — how it’s affecting immigrant families,” Wright said. “It’s a whole other level of anxiety and fear.”\u003c/p>\n\u003ch2>Decades of progress on the line\u003c/h2>\n\u003cp>Karma Quick-Panwala, an advocate at the nonprofit Disability Rights Education and Defense Fund, said she worries about the rollback of decades’ worth of progress that was hard-won by the disability rights community.\u003c/p>\n\u003cp>The \u003ca href=\"https://sites.ed.gov/idea/\">Individuals with Disabilities Education Act\u003c/a>, the 1975 law that created special education, actually predates the federal Department of Education. In fact, Congress created the department in part to oversee special education. Removing special ed would be a devastating blow to the disability community — not just because services might be curtailed, but philosophically, as well, Quick-Panwala said.\u003c/p>\n\u003cp>In the Department of Education, special education is under the purview of education experts who promote optimal ways to educate students with disabilities, so they can learn, graduate from high school and ideally go on to productive lives. In the Department of Health and Human Services, special education would no longer be overseen by educators but by those in the medical field, where they’re more likely to “look at disability as something to be cured or segregated and set aside,” Quick-Panwala said.\u003c/p>\n\u003cp>“The disability rights community has worked so hard and gave so much to make sure people with disabilities had a right to a meaningful education, so they could have gainful employment opportunities and participate in the world,” Quick-Panwala said. “The idea is that they wouldn’t just be present at school, but they would actually learn and thrive.”\u003c/p>\n\u003cp>For the time being, Wright, Quick-Panwala and other advocates are reminding families that federal funding might be shrinking, but the laws remain unchanged. Students are still entitled under federal law to the services outlined in their individual education plans, regardless of whether there’s money to pay for it. The funding will have to come from somewhere, at least for now, even if that means cutting it from another program. And California is unlikely to roll back its own special education protections, regardless of what happens in Washington, D.C.\u003c/p>\n\u003ch2>An imperfect but successful routine\u003c/h2>\n\u003cp>Those reassurances are scant comfort to Crain, whose daughter Lena will rely on government support her entire life. Born seven weeks prematurely, Lena has cerebral palsy, epilepsy, a cognitive impairment and is on the deaf-blind spectrum. But she has a 100-watt smile and a relentless spirit, Crain said. Even after the whole family has been up all night, Lena insists on going to school and getting the most out of every day.\u003c/p>\n\u003cfigure id=\"attachment_12066343\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12066343\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg\" alt=\"A man and two women stand next to each other on a deck outside a home.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/12/120125-Lena-Deacy-ZS-13-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left, Jack Deacy, his daughter Lena Deacy, and Lindsay Crain at their home in Culver City on Dec. 1, 2025. The family fears potential Medicaid cuts because Lena, who has cerebral palsy, epilepsy and other medical conditions, relies on Medicaid-funded services for her daily care and well-being. \u003ccite>(Zaydee Sanchez/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Funny and assertive, she has a few close friends and, like many teenagers, plenty of opinions about her parents. She loves her English teacher and spends most of her day in regular classrooms with help from an aide. Her favorite book is about Malala Yousafzai, the Pakistani activist who won a Nobel Peace Prize for fighting for girls’ right to an education.\u003c/p>\n\u003cp>Between school and home visits from aides and after-school therapists, Crain feels the family has pieced together an imperfect but mostly successful routine for Lena.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Our entire lives are about teaching her self-advocacy, so she can have the most independent life possible,” Crain said. “Just because you need support doesn’t mean you can’t have a say in your life. There’s been so much work around the culture and the laws and the education system to make sure disabled people can make their own choices in life. We’re absolutely terrified of losing that.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"slug": "i-know-we-can-transform-the-world-remembering-disability-rights-activist-alice-wong",
"title": "‘I Know We Can Transform the World’: Remembering Disability Rights Activist Alice Wong",
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"headTitle": "‘I Know We Can Transform the World’: Remembering Disability Rights Activist Alice Wong | KQED",
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"content": "\u003cp>\u003cspan style=\"font-weight: 400\">Alice Wong, a disability rights activist, writer, and MacArthur Genius award winner based in San Francisco, died last Friday at UCSF at the age of 51. Wong was best known as the founder of the\u003c/span>\u003ca href=\"https://disabilityvisibilityproject.com/\">\u003cspan style=\"font-weight: 400\"> Disability Visibility Project\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> (DVP), a group that highlights disabled people and disability culture through storytelling projects, social media and other channels.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Alice’s friend and fellow activist, Sandy Ho, wrote, “Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized.” Today, we remember Wong by sharing a radio essay she recorded for The California Report Magazine in December 2022.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm?e=KQINC2770679635\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>Links:\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">\u003cspan style=\"font-weight: 400\">Alice’s GoFundMe\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\">\u003cspan style=\"font-weight: 400\">Disability Rights Activist and Author Alice Wong Dies at 51 | KQED\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/forum/2010101908618/bay-area-legends-activist-alice-wong-and-the-power-of-bringing-visibility-to-disability\">\u003cspan style=\"font-weight: 400\">Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability\u003c/span>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>This is a computer-generated transcript. While our team has reviewed it, there may be errors.\u003c/em>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>I’m Ericka Cruz Guevarra and welcome to the bay. Local news to keep you rooted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>In April 2020, just one month after the World Health Organization declared Covid19 a global pandemic, disability rights activist Alice Wong stood out as one of the most outspoken critics of our public response. Social distancing was still this awkward dance that not everyone took seriously. People were still going out. Masks were still an option, not a requirement. And Alice argued that this was putting the most vulnerable at risk:\u003c/p>\n\u003cp>\u003cstrong>Alice Wong: \u003c/strong>It just burns me up. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Wong, a disability rights advocate, author, and MacArthur genius, insisted that the disabled community had a lot of wisdom to share with the rest of us at this strange moment; Wisdom around being nimble, and taking care of each other… How access and accommodations that disabled people often pushed for – like, working from home or live streaming public events and concerts, were suddenly beneficial to \u003ci>everyone.\u003c/i>\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> This wasn’t the first crisis that disabled folks faced. We’ve had to make due with living in a world that’s rather hostile and not designed for us in the first place.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Alice Wong, who lived in San Francisco, died last Friday. She was 51 years old. Wong leaves behind an incredible archive and legacy of disability justice, stories, and community organizing. Today, we’re sharing this essay Alice wrote in 2022: About her vision for a new approach to health care… And how prioritizing the most \u003ci>vulnerable \u003c/i>in our society… lifts us all up. That’s coming up. Right after this break.\u003c/p>\n\u003cp>\u003cstrong><ad break>\u003c/strong>\u003c/p>\n\u003cp>\u003cb>Alice Wong:\u003c/b> I was born with a progressive neuromuscular disability and my life has always been centered on care. Both receiving and giving it.\u003c/p>\n\u003cp>When I could no longer walk and started using a power chair, needed assistance breathing, and experienced difficulty swallowing and eating, I learned how to direct and manage my caregivers like a boss. I’ve done it ever since I was a child. This year, however, presented the greatest challenge in my abilities because the stakes were higher and dire.\u003c/p>\n\u003cp>Over the summer I experienced several medical crises, such as a collapsed lung and an inability to swallow, which resulted in a tracheostomy that’s connected to a ventilator. I also now have a G-J tube that delivers liquid nutrition to my small intestine and stomach.\u003c/p>\n\u003cp>And now I speak through this app.\u003c/p>\n\u003cp>In the span of four weeks, my entire world was turned upside down.\u003c/p>\n\u003cp>One of the biggest stressors upon leaving the hospital was how I would get my intensive medical needs covered at home. The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7.\u003c/p>\n\u003cp>It was the only time I cried in the hospital.\u003c/p>\n\u003cp>\u003ci>[Sound of a hospital bed’s movement]\u003c/i>\u003c/p>\n\u003cp>That sound you just heard is of my hospital bed, one of many types of medical equipment I depend on. Needing total help with my daily activities has cost me greatly. The necessary close contact with your body, the lack of privacy and spontaneity, the presumptions strangers have about your competence. My life is in my caregivers’ hands and this is a cost I must pay because I want to live.\u003c/p>\n\u003cp>Having multiple caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late, sick, or forget to show up has taken a lot out of me as I try to recover and heal.\u003c/p>\n\u003cp>What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.\u003c/p>\n\u003cp>I already receive hours of care through two programs, but it was impossible finding workers because of low wages, worker shortages, and the fluidic nature of the workforce. So I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family. By the way, the \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco, which is not a livable wage in such an expensive city.\u003c/p>\n\u003cp>A generous friend launched a \u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">GoFundMe campaign\u003c/a> to finance the indefinite costs of my private-pay care, which is approximately $600 per day. This is something no disabled person should have to do to live in the community.\u003c/p>\n\u003cp>Knowing how close I was to being institutionalized still haunts me and brings a searing clarity on how our society is focused on capitalism, productivity and independence which are all scams.\u003c/p>\n\u003cp>\u003ci>[Sound of a ventilator]\u003c/i>\u003c/p>\n\u003cp>That’s the alarm from my ventilator, which happens when I am disconnected or something is wrong and my caregivers or family members have to immediately check on me. My caregivers care for me but do they care about me? I believe they do but this is probably an unrealistic expectation because at the end of the day it is a job. And yet, care work is different. We share a mutual vulnerability shaped by structural and institutional inequality.\u003c/p>\n\u003cp>According to the UCLA Labor Center, as of 2019 there were at least \u003ca href=\"https://www.labor.ucla.edu/wp-content/uploads/2022/03/Lives-and-Livelihood-Report-1.pdf\">1.75 million disabled adults under 65\u003c/a> in California who needed home care.\u003c/p>\n\u003cp>I wrote about the future of care infrastructure in my memoir, \u003ci>Year of the Tiger: An Activist’s Life\u003c/i>. They are not unfeasible dreams. Change comes from wild imaginings of what is possible.\u003c/p>\n\u003cp>In the future care infrastructure will be …\u003c/p>\n\u003cp>One that treats care as a normal part of the human lifespan and not a failure or weakness to need help.\u003c/p>\n\u003cp>One led and designed by disabled people and others who need or provide care.\u003c/p>\n\u003cp>One that is free, publicly funded, and not means-tested or linked to employment.\u003c/p>\n\u003cp>One that puts a primacy on self-direction of the individual, bodily autonomy, and dignity of risk rather than a formulaic, medicalized training that dehumanizes disabled, older and chronically ill people.\u003c/p>\n\u003cp>\u003ci>[Sound of suction machine]\u003c/i>\u003c/p>\n\u003cp>And this is the sound of another essential piece of equipment, a suction machine that helps me clear my lungs of secretions that I produce almost every hour. Because of, not despite, the hardships I experienced this year, my life is filled with joy, beauty and gratitude. The cost of care is steep but it doesn’t have to be a burden if people truly believe their security and wellness is tied to their communities, neighbors, friends and family.\u003c/p>\n\u003cp>While I still feel incredibly fragile and scared about what next year holds, I know we can transform the world if we have the political and collective will to do so.\u003c/p>\n\u003cp>Manifesting this dream from San Francisco, for The California Report, I’m Alice Wong.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>That was disability rights activist Alice Wong,for The California Report Magazine back in Dec 2022. There is a GOFUNDME set up to help continue the legacy of Alice’s work. We’ll leave you a link to that in our show notes.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cspan style=\"font-weight: 400\">Alice Wong, a disability rights activist, writer, and MacArthur Genius award winner based in San Francisco, died last Friday at UCSF at the age of 51. Wong was best known as the founder of the\u003c/span>\u003ca href=\"https://disabilityvisibilityproject.com/\">\u003cspan style=\"font-weight: 400\"> Disability Visibility Project\u003c/span>\u003c/a>\u003cspan style=\"font-weight: 400\"> (DVP), a group that highlights disabled people and disability culture through storytelling projects, social media and other channels.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">Alice’s friend and fellow activist, Sandy Ho, wrote, “Alice Wong was a hysterical friend, writer, activist and disability justice luminary whose influence was outsized.” Today, we remember Wong by sharing a radio essay she recorded for The California Report Magazine in December 2022.\u003c/span>\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm?e=KQINC2770679635\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>\u003cstrong>Links:\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">\u003cspan style=\"font-weight: 400\">Alice’s GoFundMe\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/arts/13983848/alice-wong-disability-rights-activist-obituary\">\u003cspan style=\"font-weight: 400\">Disability Rights Activist and Author Alice Wong Dies at 51 | KQED\u003c/span>\u003c/a>\u003c/li>\n\u003cli style=\"font-weight: 400\">\u003ca href=\"https://www.kqed.org/forum/2010101908618/bay-area-legends-activist-alice-wong-and-the-power-of-bringing-visibility-to-disability\">\u003cspan style=\"font-weight: 400\">Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability\u003c/span>\u003c/a>\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>This is a computer-generated transcript. While our team has reviewed it, there may be errors.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>I’m Ericka Cruz Guevarra and welcome to the bay. Local news to keep you rooted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>In April 2020, just one month after the World Health Organization declared Covid19 a global pandemic, disability rights activist Alice Wong stood out as one of the most outspoken critics of our public response. Social distancing was still this awkward dance that not everyone took seriously. People were still going out. Masks were still an option, not a requirement. And Alice argued that this was putting the most vulnerable at risk:\u003c/p>\n\u003cp>\u003cstrong>Alice Wong: \u003c/strong>It just burns me up. I feel like this sets up this very unfair dynamic where the burden of staying safe and healthy falls upon those who are the most marginalized and the most impacted.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Wong, a disability rights advocate, author, and MacArthur genius, insisted that the disabled community had a lot of wisdom to share with the rest of us at this strange moment; Wisdom around being nimble, and taking care of each other… How access and accommodations that disabled people often pushed for – like, working from home or live streaming public events and concerts, were suddenly beneficial to \u003ci>everyone.\u003c/i>\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> This wasn’t the first crisis that disabled folks faced. We’ve had to make due with living in a world that’s rather hostile and not designed for us in the first place.\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>Alice Wong, who lived in San Francisco, died last Friday. She was 51 years old. Wong leaves behind an incredible archive and legacy of disability justice, stories, and community organizing. Today, we’re sharing this essay Alice wrote in 2022: About her vision for a new approach to health care… And how prioritizing the most \u003ci>vulnerable \u003c/i>in our society… lifts us all up. That’s coming up. Right after this break.\u003c/p>\n\u003cp>\u003cstrong><ad break>\u003c/strong>\u003c/p>\n\u003cp>\u003cb>Alice Wong:\u003c/b> I was born with a progressive neuromuscular disability and my life has always been centered on care. Both receiving and giving it.\u003c/p>\n\u003cp>When I could no longer walk and started using a power chair, needed assistance breathing, and experienced difficulty swallowing and eating, I learned how to direct and manage my caregivers like a boss. I’ve done it ever since I was a child. This year, however, presented the greatest challenge in my abilities because the stakes were higher and dire.\u003c/p>\n\u003cp>Over the summer I experienced several medical crises, such as a collapsed lung and an inability to swallow, which resulted in a tracheostomy that’s connected to a ventilator. I also now have a G-J tube that delivers liquid nutrition to my small intestine and stomach.\u003c/p>\n\u003cp>And now I speak through this app.\u003c/p>\n\u003cp>In the span of four weeks, my entire world was turned upside down.\u003c/p>\n\u003cp>One of the biggest stressors upon leaving the hospital was how I would get my intensive medical needs covered at home. The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7.\u003c/p>\n\u003cp>It was the only time I cried in the hospital.\u003c/p>\n\u003cp>\u003ci>[Sound of a hospital bed’s movement]\u003c/i>\u003c/p>\n\u003cp>That sound you just heard is of my hospital bed, one of many types of medical equipment I depend on. Needing total help with my daily activities has cost me greatly. The necessary close contact with your body, the lack of privacy and spontaneity, the presumptions strangers have about your competence. My life is in my caregivers’ hands and this is a cost I must pay because I want to live.\u003c/p>\n\u003cp>Having multiple caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late, sick, or forget to show up has taken a lot out of me as I try to recover and heal.\u003c/p>\n\u003cp>What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.\u003c/p>\n\u003cp>I already receive hours of care through two programs, but it was impossible finding workers because of low wages, worker shortages, and the fluidic nature of the workforce. So I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family. By the way, the \u003ca href=\"https://www.cdss.ca.gov/inforesources/ihss/county-ihss-wage-rates\">wage rate for home care workers\u003c/a> in the programs I am on is a paltry $18.75 per hour in San Francisco, which is not a livable wage in such an expensive city.\u003c/p>\n\u003cp>A generous friend launched a \u003ca href=\"https://www.gofundme.com/f/alice-wong-stay-in-community\">GoFundMe campaign\u003c/a> to finance the indefinite costs of my private-pay care, which is approximately $600 per day. This is something no disabled person should have to do to live in the community.\u003c/p>\n\u003cp>Knowing how close I was to being institutionalized still haunts me and brings a searing clarity on how our society is focused on capitalism, productivity and independence which are all scams.\u003c/p>\n\u003cp>\u003ci>[Sound of a ventilator]\u003c/i>\u003c/p>\n\u003cp>That’s the alarm from my ventilator, which happens when I am disconnected or something is wrong and my caregivers or family members have to immediately check on me. My caregivers care for me but do they care about me? I believe they do but this is probably an unrealistic expectation because at the end of the day it is a job. And yet, care work is different. We share a mutual vulnerability shaped by structural and institutional inequality.\u003c/p>\n\u003cp>According to the UCLA Labor Center, as of 2019 there were at least \u003ca href=\"https://www.labor.ucla.edu/wp-content/uploads/2022/03/Lives-and-Livelihood-Report-1.pdf\">1.75 million disabled adults under 65\u003c/a> in California who needed home care.\u003c/p>\n\u003cp>I wrote about the future of care infrastructure in my memoir, \u003ci>Year of the Tiger: An Activist’s Life\u003c/i>. They are not unfeasible dreams. Change comes from wild imaginings of what is possible.\u003c/p>\n\u003cp>In the future care infrastructure will be …\u003c/p>\n\u003cp>One that treats care as a normal part of the human lifespan and not a failure or weakness to need help.\u003c/p>\n\u003cp>One led and designed by disabled people and others who need or provide care.\u003c/p>\n\u003cp>One that is free, publicly funded, and not means-tested or linked to employment.\u003c/p>\n\u003cp>One that puts a primacy on self-direction of the individual, bodily autonomy, and dignity of risk rather than a formulaic, medicalized training that dehumanizes disabled, older and chronically ill people.\u003c/p>\n\u003cp>\u003ci>[Sound of suction machine]\u003c/i>\u003c/p>\n\u003cp>And this is the sound of another essential piece of equipment, a suction machine that helps me clear my lungs of secretions that I produce almost every hour. Because of, not despite, the hardships I experienced this year, my life is filled with joy, beauty and gratitude. The cost of care is steep but it doesn’t have to be a burden if people truly believe their security and wellness is tied to their communities, neighbors, friends and family.\u003c/p>\n\u003cp>While I still feel incredibly fragile and scared about what next year holds, I know we can transform the world if we have the political and collective will to do so.\u003c/p>\n\u003cp>Manifesting this dream from San Francisco, for The California Report, I’m Alice Wong.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Ericka Cruz Guevarra: \u003c/strong>That was disability rights activist Alice Wong,for The California Report Magazine back in Dec 2022. There is a GOFUNDME set up to help continue the legacy of Alice’s work. We’ll leave you a link to that in our show notes.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"title": "‘A Place for Us, By Us’: San Francisco’s Disability Cultural Center Breaks New Ground",
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"headTitle": "‘A Place for Us, By Us’: San Francisco’s Disability Cultural Center Breaks New Ground | KQED",
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"content": "\u003cp>Nearly five decades ago, frustration over the government’s lack of urgency to make \u003ca href=\"https://www.kqed.org/news/tag/disability-community\">public buildings more accessible\u003c/a> reached a flashpoint. It was April 1977, and more than 100 disabled protesters staged a nearly month-long sit-in at a federal building in San Francisco’s United Nations Plaza.\u003c/p>\n\u003cp>After 26 days, and with support from groups like the Black Panthers and allies including then-Mayor George Moscone, the activists successfully convinced the country’s secretary of health, education and welfare to implement the long-delayed Section 504 of the Rehabilitation Act of 1973. The law prohibits discrimination based on disability in programs that receive federal financial aid.\u003c/p>\n\u003cp>The protest became recognized as the 504 Sit-in, and paved the way for the Americans with Disabilities Act more than a decade later. This summer, the city moved that legacy forward, opening the nation’s first Disability Cultural Center, located directly across from San Francisco City Hall.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“It took a while to start to see things change, but the ADA ushered in new building standards. New buildings had to be accessible in very specific ways,” said Deborah Kaplan, deputy director at San Francisco’s Office on Disability and Accessibility. The 504 Sit-in protests sprouted up in cities across the country in 1977, and Kaplan participated in Washington D.C.\u003c/p>\n\u003cp>“All of a sudden, I could go places and not have to scope it out in advance and worry that there was no way in or worry that I couldn’t use the bathroom for new places,” Kaplan said of progress that has followed in the decades since.\u003c/p>\n\u003cp>https://youtu.be/qKlp89Afp_Y\u003c/p>\n\u003cp>Activists like Kaplan have pushed San Francisco — and the nation — to raise accessibility standards for decades. Those working with the Disability Cultural Center now see the site as another victory in the disability justice movement in San Francisco and beyond.\u003c/p>\n\u003cp>“Having this space of belonging, celebrating disabled joy and having the disability community seen right across from City Hall, it’s just so incredibly unique and powerful,” said Eli Gelardin, director of the city’s Office on Disability and Accessibility. “We have a place to gather and build and further share with the broader community.”\u003c/p>\n\u003cp>After several years of planning and delays from the COVID-19 pandemic, the center first began hosting events online in 2024. As the online community grew, organizers worked with the city to prepare for the center’s \u003ca href=\"https://www.kqed.org/arts/13978766/disability-cultural-center-open-san-francisco\">physical space opening in summer 2025\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_12052185\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052185 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Visitors sit at an outdoor table at the Disability Cultural Center in San Francisco on July 31, 2025, during a plant potting activity at the center. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Today, the center is bustling.\u003c/p>\n\u003cp>With walls lined with paintings by disabled artists and furnished with cafe-style seating and cushioned chairs that can move about, the space offers a flexible gathering space alongside an airy courtyard. Nestled in cubbies along the inner walls are buckets filled with toys, games and medical safety supplies.\u003c/p>\n\u003cp>“We did a dance class yesterday out on the patio that was utilizing the space in new ways,” said Emily Beitiks, one of the center’s three co-directors. “Everything is meant to have multipurpose use so that it maximizes our use of the space.”\u003c/p>\n\u003cfigure id=\"attachment_12052186\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052186\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Volunteer Valentin Davis (left) sits with Masooma at the Disability Cultural Center in San Francisco on July 31, 2025, during a plant potting activity at the center. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Since opening in-person in July, the site has hosted a zine-making class, plant potting workshop, a small film festival and several other events.\u003c/p>\n\u003cp>Community members are keeping the calendar full with upcoming events like a job search session and peer support groups for different disabilities and chronic illnesses.\u003c/p>\n\u003cp>The center is publicly funded and contracting with nonprofit Haven of Hope for the next four years.[aside postID=news_11984990 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2023/12/Featured-photo-horizontal-Alice-Wong-1020x574.png']But the work of making public spaces more accessible is far from over. One frustrating example Kaplan has on her mind is a central elevator at Hallidie Plaza, next to the Powell Street BART station, that has not worked in more than 20 years.\u003c/p>\n\u003cp>For residents like Alice Wong, a disabled writer and activist, the broken elevator is both a symbol of ongoing struggle and a literal barrier to moving through her own neighborhood.\u003c/p>\n\u003cp>“If the Hallidie Plaza elevator was working, it would be the one closest to my home, but instead I have to go an entire block, which is pretty long, to the one on 4th Street,” said Wong, who lives in the South of Market neighborhood. “I look forward to an accessible Hallidie Plaza entry.”\u003c/p>\n\u003cp>Wong moved to San Francisco in 1997 to attend graduate school at UCSF. She was familiar with the city’s history of disability activism and chose the city in part because she wanted to meet more wheelchair users like herself, who understand their disability as a part of their political identity.\u003c/p>\n\u003cp>Despite moving to the city seven years after the ADA passed, Wong found many barriers to getting around her new campus and city.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052187 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, director of the Office on Disability and Accessibility, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, deputy Director of the Office of Disability and Accessibility, at the Disability Cultural Center on Aug. 13, 2025.. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“None of their student housing was accessible, so they had to renovate the basement of a faculty house so I could live there,” Wong said. “Changes by major institutions were very gradual.”\u003c/p>\n\u003cp>At the Disability Cultural Center, accessibility was not an afterthought tacked on to comply with regulations, but rather part of the facility’s design from the start.\u003c/p>\n\u003cp>“The Disability Cultural Center offers a place for us, by us, that isn’t a service or medical provider,” said Wong, who leads the Disability Visibility Project. “It shouldn’t be radical, but it is — to have a space centered on disability culture where it celebrates who we are that’s not centered on any one diagnosis or on fixing us.”\u003c/p>\n\u003cfigure id=\"attachment_12052184\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052184 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">The newly opened Disability Cultural Center in San Francisco on July 25, 2025. The cultural space is dedicated to celebrating disability culture through accessible community events. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Including beautiful, accessible housing was another central part of the design to meet the needs of the disabled community.\u003c/p>\n\u003cp>The center is housed on the ground floor of The Kelsey Civic Center, a 112-unit mixed-income housing development where 25% of units are reserved for people with disabilities.\u003c/p>\n\u003cp>“Many homes have a flight of stairs up to the entrance, such as the charming Victorians San Francisco is famous for. And a lot of apartment buildings that aren’t high-rises don’t have elevators. That makes it difficult to age in place,” Wong said. “Livability and affordability should be part of the same goal when it comes to new housing in San Francisco.”\u003c/p>\n\u003cp>https://youtu.be/2t6Af52rKQ8\u003c/p>\n\u003cp>The center has attracted visitors like San Francisco resident Sophie Mai. She heard about it while visiting a wellness clinic in the city, and dropped in on a recent Friday afternoon to check it out.\u003c/p>\n\u003cp>“Representation is important, also for invisible disabilities, and this is a beautiful space,” Mai said while sitting on one of the lounge chairs in the center’s living room. “I’m looking forward to spending more time here.”\u003c/p>\n\u003cp>Today’s political climate and cuts to Medi-Cal, food stamps and other social safety net programs makes the need for community even greater, according to Wong.[aside postID=news_11989095 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters01-1020x680.jpg']“We need the DCC more than ever. Disabled people are not okay,” Wong said. “We are scared and enraged, and this center will be a place of connection where we can build power and feel less alone.”\u003c/p>\n\u003cp>Unlike many of the city’s other cultural centers, which often focus on heritage and ethnic identity, the Disability Cultural Center aims to bridge race, gender and other identities.\u003c/p>\n\u003cp>It honors the roots of the disability rights movement, including the support from groups like the \u003ca href=\"https://www.kqed.org/bayareabites/29308/lgbt-pride-remembering-the-brick-hut-cafe-part-1\">Brick Hut Cafe\u003c/a>, a queer-run cooperative in Berkeley, as well as \u003ca href=\"https://www.kqed.org/news/12009858/sf-has-ramped-up-homeless-sweeps-this-nonprofit-sees-another-way\">Glide Memorial Church\u003c/a> and \u003ca href=\"https://www.kqed.org/arts/13971589/black-panther-party-survival-programs-exhibit\">the Black Panthers\u003c/a>, who helped feed protesters at the 504 Sit-in in San Francisco.\u003c/p>\n\u003cp>“Disability justice was developed by people of color who felt that the previous movements did not address their lived realities,” Wong said, pointing to leaders like \u003ca href=\"https://www.pbs.org/wnet/americanmasters/brad-lomax-documentary/33589/\">Brad Lomax\u003c/a>, a disabled member of the Black Panther Party, who helped organize the Bay Area protest and later went on to start the East Oakland Center for Independent Living.\u003c/p>\n\u003cfigure id=\"attachment_12052188\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052188 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Debbie Kaplan (center) speaks with Alice Wong (left) disability rights activist and Eli Gelardin at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Movements are successful if they remember the lessons of their elders and appreciate the historical and political context in which they occurred,” Wong said. “One principle of disability justice is a commitment to cross-movement organizing.”\u003c/p>\n\u003cp>The model is already drawing interest from other cities. People in places such as Detroit have reached out asking about what it might take to bring a Disability Cultural Center to their hometown, according to co-director Beitiks.\u003c/p>\n\u003cp>“When countries are upgrading their cities or new cities are getting developed, they’re all accessible, because that’s how a country shows the rest of the world how up to date it is and what a great place it is,” Kaplan said. “That’s remarkable.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"title": "‘A Place for Us, By Us’: San Francisco’s Disability Cultural Center Breaks New Ground | KQED",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Nearly five decades ago, frustration over the government’s lack of urgency to make \u003ca href=\"https://www.kqed.org/news/tag/disability-community\">public buildings more accessible\u003c/a> reached a flashpoint. It was April 1977, and more than 100 disabled protesters staged a nearly month-long sit-in at a federal building in San Francisco’s United Nations Plaza.\u003c/p>\n\u003cp>After 26 days, and with support from groups like the Black Panthers and allies including then-Mayor George Moscone, the activists successfully convinced the country’s secretary of health, education and welfare to implement the long-delayed Section 504 of the Rehabilitation Act of 1973. The law prohibits discrimination based on disability in programs that receive federal financial aid.\u003c/p>\n\u003cp>The protest became recognized as the 504 Sit-in, and paved the way for the Americans with Disabilities Act more than a decade later. This summer, the city moved that legacy forward, opening the nation’s first Disability Cultural Center, located directly across from San Francisco City Hall.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It took a while to start to see things change, but the ADA ushered in new building standards. New buildings had to be accessible in very specific ways,” said Deborah Kaplan, deputy director at San Francisco’s Office on Disability and Accessibility. The 504 Sit-in protests sprouted up in cities across the country in 1977, and Kaplan participated in Washington D.C.\u003c/p>\n\u003cp>“All of a sudden, I could go places and not have to scope it out in advance and worry that there was no way in or worry that I couldn’t use the bathroom for new places,” Kaplan said of progress that has followed in the decades since.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/qKlp89Afp_Y'\n title='//www.youtube.com/embed/qKlp89Afp_Y'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Activists like Kaplan have pushed San Francisco — and the nation — to raise accessibility standards for decades. Those working with the Disability Cultural Center now see the site as another victory in the disability justice movement in San Francisco and beyond.\u003c/p>\n\u003cp>“Having this space of belonging, celebrating disabled joy and having the disability community seen right across from City Hall, it’s just so incredibly unique and powerful,” said Eli Gelardin, director of the city’s Office on Disability and Accessibility. “We have a place to gather and build and further share with the broader community.”\u003c/p>\n\u003cp>After several years of planning and delays from the COVID-19 pandemic, the center first began hosting events online in 2024. As the online community grew, organizers worked with the city to prepare for the center’s \u003ca href=\"https://www.kqed.org/arts/13978766/disability-cultural-center-open-san-francisco\">physical space opening in summer 2025\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_12052185\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052185 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-03-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Visitors sit at an outdoor table at the Disability Cultural Center in San Francisco on July 31, 2025, during a plant potting activity at the center. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Today, the center is bustling.\u003c/p>\n\u003cp>With walls lined with paintings by disabled artists and furnished with cafe-style seating and cushioned chairs that can move about, the space offers a flexible gathering space alongside an airy courtyard. Nestled in cubbies along the inner walls are buckets filled with toys, games and medical safety supplies.\u003c/p>\n\u003cp>“We did a dance class yesterday out on the patio that was utilizing the space in new ways,” said Emily Beitiks, one of the center’s three co-directors. “Everything is meant to have multipurpose use so that it maximizes our use of the space.”\u003c/p>\n\u003cfigure id=\"attachment_12052186\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12052186\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250731-DISABILITYCULTURALCENTER-04-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Volunteer Valentin Davis (left) sits with Masooma at the Disability Cultural Center in San Francisco on July 31, 2025, during a plant potting activity at the center. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Since opening in-person in July, the site has hosted a zine-making class, plant potting workshop, a small film festival and several other events.\u003c/p>\n\u003cp>Community members are keeping the calendar full with upcoming events like a job search session and peer support groups for different disabilities and chronic illnesses.\u003c/p>\n\u003cp>The center is publicly funded and contracting with nonprofit Haven of Hope for the next four years.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>But the work of making public spaces more accessible is far from over. One frustrating example Kaplan has on her mind is a central elevator at Hallidie Plaza, next to the Powell Street BART station, that has not worked in more than 20 years.\u003c/p>\n\u003cp>For residents like Alice Wong, a disabled writer and activist, the broken elevator is both a symbol of ongoing struggle and a literal barrier to moving through her own neighborhood.\u003c/p>\n\u003cp>“If the Hallidie Plaza elevator was working, it would be the one closest to my home, but instead I have to go an entire block, which is pretty long, to the one on 4th Street,” said Wong, who lives in the South of Market neighborhood. “I look forward to an accessible Hallidie Plaza entry.”\u003c/p>\n\u003cp>Wong moved to San Francisco in 1997 to attend graduate school at UCSF. She was familiar with the city’s history of disability activism and chose the city in part because she wanted to meet more wheelchair users like herself, who understand their disability as a part of their political identity.\u003c/p>\n\u003cp>Despite moving to the city seven years after the ADA passed, Wong found many barriers to getting around her new campus and city.\u003c/p>\n\u003cfigure id=\"attachment_12052187\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052187 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-05-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">(From left) Eli Gelardin, director of the Office on Disability and Accessibility, speaks with Alice Wong, a disability rights activist, and Debbie Kaplan, deputy Director of the Office of Disability and Accessibility, at the Disability Cultural Center on Aug. 13, 2025.. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“None of their student housing was accessible, so they had to renovate the basement of a faculty house so I could live there,” Wong said. “Changes by major institutions were very gradual.”\u003c/p>\n\u003cp>At the Disability Cultural Center, accessibility was not an afterthought tacked on to comply with regulations, but rather part of the facility’s design from the start.\u003c/p>\n\u003cp>“The Disability Cultural Center offers a place for us, by us, that isn’t a service or medical provider,” said Wong, who leads the Disability Visibility Project. “It shouldn’t be radical, but it is — to have a space centered on disability culture where it celebrates who we are that’s not centered on any one diagnosis or on fixing us.”\u003c/p>\n\u003cfigure id=\"attachment_12052184\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052184 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250725-DISABILITYCULTURALCENTER-18-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">The newly opened Disability Cultural Center in San Francisco on July 25, 2025. The cultural space is dedicated to celebrating disability culture through accessible community events. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Including beautiful, accessible housing was another central part of the design to meet the needs of the disabled community.\u003c/p>\n\u003cp>The center is housed on the ground floor of The Kelsey Civic Center, a 112-unit mixed-income housing development where 25% of units are reserved for people with disabilities.\u003c/p>\n\u003cp>“Many homes have a flight of stairs up to the entrance, such as the charming Victorians San Francisco is famous for. And a lot of apartment buildings that aren’t high-rises don’t have elevators. That makes it difficult to age in place,” Wong said. “Livability and affordability should be part of the same goal when it comes to new housing in San Francisco.”\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/2t6Af52rKQ8'\n title='//www.youtube.com/embed/2t6Af52rKQ8'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>The center has attracted visitors like San Francisco resident Sophie Mai. She heard about it while visiting a wellness clinic in the city, and dropped in on a recent Friday afternoon to check it out.\u003c/p>\n\u003cp>“Representation is important, also for invisible disabilities, and this is a beautiful space,” Mai said while sitting on one of the lounge chairs in the center’s living room. “I’m looking forward to spending more time here.”\u003c/p>\n\u003cp>Today’s political climate and cuts to Medi-Cal, food stamps and other social safety net programs makes the need for community even greater, according to Wong.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>“We need the DCC more than ever. Disabled people are not okay,” Wong said. “We are scared and enraged, and this center will be a place of connection where we can build power and feel less alone.”\u003c/p>\n\u003cp>Unlike many of the city’s other cultural centers, which often focus on heritage and ethnic identity, the Disability Cultural Center aims to bridge race, gender and other identities.\u003c/p>\n\u003cp>It honors the roots of the disability rights movement, including the support from groups like the \u003ca href=\"https://www.kqed.org/bayareabites/29308/lgbt-pride-remembering-the-brick-hut-cafe-part-1\">Brick Hut Cafe\u003c/a>, a queer-run cooperative in Berkeley, as well as \u003ca href=\"https://www.kqed.org/news/12009858/sf-has-ramped-up-homeless-sweeps-this-nonprofit-sees-another-way\">Glide Memorial Church\u003c/a> and \u003ca href=\"https://www.kqed.org/arts/13971589/black-panther-party-survival-programs-exhibit\">the Black Panthers\u003c/a>, who helped feed protesters at the 504 Sit-in in San Francisco.\u003c/p>\n\u003cp>“Disability justice was developed by people of color who felt that the previous movements did not address their lived realities,” Wong said, pointing to leaders like \u003ca href=\"https://www.pbs.org/wnet/americanmasters/brad-lomax-documentary/33589/\">Brad Lomax\u003c/a>, a disabled member of the Black Panther Party, who helped organize the Bay Area protest and later went on to start the East Oakland Center for Independent Living.\u003c/p>\n\u003cfigure id=\"attachment_12052188\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12052188 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/08/250813-DISABILITYCULTURALCENTER-07-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Debbie Kaplan (center) speaks with Alice Wong (left) disability rights activist and Eli Gelardin at the Disability Cultural Center on Aug. 13, 2025. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Movements are successful if they remember the lessons of their elders and appreciate the historical and political context in which they occurred,” Wong said. “One principle of disability justice is a commitment to cross-movement organizing.”\u003c/p>\n\u003cp>The model is already drawing interest from other cities. People in places such as Detroit have reached out asking about what it might take to bring a Disability Cultural Center to their hometown, according to co-director Beitiks.\u003c/p>\n\u003cp>“When countries are upgrading their cities or new cities are getting developed, they’re all accessible, because that’s how a country shows the rest of the world how up to date it is and what a great place it is,” Kaplan said. “That’s remarkable.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"slug": "californians-with-disabilities-face-barriers-when-voting-even-after-bills-and-lawsuits",
"title": "Californians With Disabilities Face Barriers When Voting, Even After Bills and Lawsuits",
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"content": "\u003cp>Lisamaria Martinez isn’t sure when she last voted in person. But she remembers the boots she wore that day — her “fabulous,” new navy blue boots with chunky heels, which gave her blisters on her milelong walk back home from the polling place.\u003c/p>\n\u003cp>It was part of her “confidence attire” to feel empowered because on most election days, Martinez — a blind voter in Alameda County — said she had to show poll workers how to help her use the voting machine. She needed them to take her seriously.\u003c/p>\n\u003cp>“I shouldn’t have to tell people how to do their jobs, right?” Martinez said in an interview. “That emotional labor shouldn’t always be on the person with the disability.”\u003c/p>\n\u003cp>Martinez lost her sight when she was 5 due to severe allergic reactions but has regained some after surgeries. She needs her ballot read out loud to vote in person.\u003cstrong> \u003c/strong>In November 2012, however, the audio feature on the voting machine broke down, forcing her and others to read out their votes to others. She and others sued \u003ca href=\"https://drive.google.com/file/d/1p672vy2HezfYXEt06Sbpy0H3NGwTiIjB/view\">the county\u003c/a> in 2013.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Martinez’s other option is to fill out her ballot electronically. Visually impaired voters must still \u003ca href=\"https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mail\">print out the ballot\u003c/a>, make sure it’s correct, sign the envelope and return it, requiring help from a sighted person.\u003c/p>\n\u003cp>Others with \u003ca href=\"https://web.archive.org/web/20131024195135/http:/readingrights.org/definition-print-disabled\">print disabilities\u003c/a>, including those who struggle to use printed materials due to conditions such as learning disabilities or dexterity issues, experience similar challenges.\u003c/p>\n\u003cp>California has been hailed\u003cstrong> \u003c/strong>by \u003ca href=\"https://drshirleyweber.com/priorities/#:~:text=Leaders%20like%20Dr.%20Weber%20can%20restore%20trust%20in%20our%20democracy.\">state officials\u003c/a> and \u003ca href=\"https://www.aclu.org/press-releases/california-leads-nation-promoting-voter-access\">some voting rights advocates\u003c/a> as a \u003ca href=\"https://slate.com/news-and-politics/2020/08/2020-voting-guide.html\">national leader\u003c/a> in voting access. But advocates and blind voters, including Martinez, said Californians with disabilities still face unnecessary barriers to voting and lack options that work in other states. In 2022, the state ranked 17th in disability access, according to an election performance index by the \u003ca href=\"https://elections.mit.edu/#/data/indicators\">Massachusetts Institute of Technology\u003c/a>.\u003c/p>\n\u003cp>To comply with \u003ca href=\"https://www.justice.gov/crt/national-voter-registration-act-1993-nvra\">federal law\u003c/a>, the Secretary of State’s office doesn’t collect data on the number of registered voters with disabilities. \u003ca href=\"https://data.census.gov/table/ACSST1Y2022.S1810?q=california%20disability\">Census data shows\u003c/a> about 4.2 million Californians of voting age live with a disability. More than 892,000 Californians have a visual disability, and about 93% of them are 18 or older.\u003c/p>\n\u003cp>Prompted by new laws and court fights, California election officials have, in recent years, established stricter requirements to test how accessible voting machines are and have adopted systems for voters with disabilities to fill out their ballots electronically. However, efforts to allow people to also \u003cem>return\u003c/em> ballots electronically have stalled.\u003c/p>\n\u003cp>Now, disability advocates are going to court: They are asking a federal judge to compel Secretary of State Shirley Weber’s office to allow voters who have difficulty using printed materials to \u003ca href=\"https://dralegal.org/wp-content/uploads/2024/03/12_Ps_Ntc_of_Mtn__Mtn_for_PI__MOL_ISO_PI.pdf'\">return their ballots via fax (PDF)\u003c/a> in the November election — an option already available to \u003ca href=\"https://www.sos.ca.gov/elections/voter-registration/military-overseas-voters\">military and overseas voters\u003c/a>.\u003c/p>\n\u003cp>“The current paper-based ballot return requirements … impose significant, unlawful barriers for voters with print disabilities,” the plaintiffs argue in the case, \u003ca href=\"https://apps.cand.uscourts.gov/CEO/cfd.aspx?71bv\">scheduled to be heard June 24\u003c/a> in U.S. District Court in San Francisco.\u003c/p>\n\u003cp>A dozen states allow voters to return ballots electronically — by email, by fax or through an online portal — to at least some voters with disabilities, according to the \u003ca href=\"https://www.ncsl.org/elections-and-campaigns/electronic-ballot-return-internet-voting\">National Conference of State Legislatures\u003c/a>.\u003c/p>\n\u003cp>A \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220SB1480\">2022 bill\u003c/a> sought to do the same in California. However, Weber \u003ca href=\"https://www.calvoter.org/sites/default/files/sb_1480_glazer-_opp_sos_6.27.22.pdf\">opposed it\u003c/a>, arguing that online voting would be vulnerable to cyberattacks. Some security experts and other election officials across the nation also \u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">raised similar concerns (PDF)\u003c/a>.\u003c/p>\n\u003cp>The secretary of state “of course supports the expansion of the franchise so that more voters can vote with more convenience,” Weber said in her opposition letter. “However, it is also our responsibility to weigh the expansion of the franchise with the security and safety of our existing election methods.”\u003c/p>\n\u003cp>Weber’s office declined to answer CalMatters’ questions for this story last week, citing the agency’s policy not to speak about pending litigation.\u003c/p>\n\u003ch2>How do those with disabilities vote in California?\u003c/h2>\n\u003cp>California’s constitution guarantees every voter\u003cstrong> \u003c/strong>the right to a secret ballot, and its \u003ca href=\"https://www.sos.ca.gov/elections/voter-bill-rights\">voter bill of rights\u003c/a> guarantees any assistance they need.\u003c/p>\n\u003cp>\u003ca href=\"https://calmatters.org/explainers/california-all-mail-election-explained-november-2020/#b0e8ab03-bff3-47d1-8ebe-ab0f8c38e5c3\">Since the 1920s\u003c/a>,\u003cstrong> \u003c/strong>the state has expanded voting rights. California legalized absentee voting for military and overseas voters in 1922 and for \u003ca href=\"https://luskincenter.history.ucla.edu/wp-content/uploads/sites/66/2020/09/Reckoning-with-our-Rights-Report-September-2020.pdf#page=18\">voters with physical disabilities in 1930 (PDF)\u003c/a>. It expanded it to all registered \u003ca href=\"https://luskincenter.history.ucla.edu/wp-content/uploads/sites/66/2020/09/Reckoning-with-our-Rights-Report-September-2020.pdf#page=22\">voters in 1978 (PDF)\u003c/a>, and during the COVID-19 pandemic in 2021, became the \u003ca href=\"https://www.reuters.com/world/california-becomes-8th-us-state-make-universal-mail-in-ballots-permanent-2021-09-28/\">eighth state\u003c/a> to mail every registered voter a ballot.\u003c/p>\n\u003cp>Voters with \u003ca href=\"https://web.archive.org/web/20131024195135/http:/readingrights.org/definition-print-disabled\">print disabilities\u003c/a> have also had their voting access improve through a mix of \u003ca href=\"https://acl.gov/sites/default/files/programs/2016-12/HAVA_factsheet.pdf\">federal (PDF)\u003c/a> and state policies, but that access is still limited, and progress was gained often through court fights, according to blind voters and advocates.\u003c/p>\n\u003cp>In the 2013 lawsuit against Alameda County, Martinez and others argued that faulty machines disenfranchised voters and denied them the right to “vote with full privacy and independence.”\u003c/p>\n\u003cp>A Superior Court judge ruled in their favor in October 2013, and the county promised in May 2015 to test the accessibility of voting machines before every election, better\u003cstrong> \u003c/strong>train poll workers on those machines and establish a hotline for any equipment malfunctions, according to \u003ca href=\"https://dralegal.org/case/california-council-of-the-blind-ccb-et-al-v-county-of-alameda-et-al/\">Disability Rights Advocates\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_11989106\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11989106\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">A voter at a vote center at Santa Ana College in Santa Ana on March 5, 2024. \u003ccite>(Lauren Justice/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In 2015, blind voters and advocates also \u003ca href=\"https://rbgg.wpengine.com/wp-content/uploads/Dkt-1-Complaint-for-Violations-of-the-ADA-RA-GC-12-17-15-1325-1.pdf\">sued San Mateo County (PDF)\u003c/a> after the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201320140AB2028\">county mailed ballots\u003c/a> to all registered voters in 2014 to encourage more participation and reduce election costs.\u003c/p>\n\u003cp>The \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201320140AB2028\">nonpartisan Legislative Analyst’s Office\u003c/a> said all-mail balloting in another county did not significantly boost voter turnout and that some voters with disabilities might prefer in-person voting. And since there was no system to fill out ballots electronically at the time, disability activists argued it \u003ca href=\"https://www.santacruzsentinel.com/2015/12/18/lawsuit-san-mateo-county-absentee-voting-system-excludes-blind-voters/\">excluded some voters\u003c/a> who were unable to use printed ballots on their own.\u003c/p>\n\u003cp>“As a result, blind and visually impaired voters must rely on the assistance of others to read and mark their absentee ballots, thereby sacrificing the confidentiality of their vote, or forgo their right to vote by absentee ballot altogether,” \u003ca href=\"https://rbgg.wpengine.com/wp-content/uploads/Dkt-1-Complaint-for-Violations-of-the-ADA-RA-GC-12-17-15-1325-1.pdf\">the San Mateo lawsuit contended (PDF)\u003c/a>. The court eventually \u003ca href=\"https://rbgg.com/settlement-groundbreaking-lawsuit-paves-way-blind-voters-access-absentee-voting-program/\">sided with the plaintiffs\u003c/a>, ordering the county to better accommodate voters with disabilities.\u003c/p>\n\u003cp>The state Legislature \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201520160AB2252\">passed a law in 2016\u003c/a> to develop \u003ca href=\"https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mail\">a system\u003c/a> allowing eligible voters to fill out ballots electronically and \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201720180AB1013\">another in 2018\u003c/a> to require all counties to offer that system to voters with disabilities and military and overseas voters.\u003c/p>\n\u003cp>\u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201920200AB860\">A 2020 state law\u003c/a> required all counties to offer the system to \u003ca href=\"https://elections.cdn.sos.ca.gov/statewide-elections/2024-primary/trusted-info-ravbm.pdf\">any registered voter who requested it (PDF)\u003c/a> in the 2020 general election,\u003cstrong> \u003c/strong>and in 2021, another law \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=202120220AB37\">made that permanent\u003c/a>.\u003c/p>\n\u003cp>In a video demonstration by \u003ca href=\"https://www.youtube.com/watch?v=54-Xbg5Nbg4\">Disability Rights California\u003c/a>, voters can hear the ballot text, check boxes accordingly and listen to their choices before voting. Voters can also choose bigger fonts or use magnifying lenses to vote. Voter guides are also available in audio and large font forms. Mail-in ballot envelopes have \u003ca href=\"https://www.factcheck.org/2021/08/exposing-the-holes-in-a-california-recall-election-conspiracy-theory/\">punch holes\u003c/a>, in part, to help visually impaired voters find where to sign.\u003c/p>\n\u003cp>Last year, California\u003ca href=\"https://digitaldemocracy.calmatters.org/bills/ca_202320240ab545?slug=CA_202320240AB545\"> passed a law\u003c/a> that allows curbside voting for those with disabilities, regardless of whether the polling place is accessible or not.\u003c/p>\n\u003ch2>What are the hurdles for the visually impaired?\u003c/h2>\n\u003cp>Voters with disabilities who want to mail in their ballot even after filling it out electronically need to find a printer. And without help from sighted people, it is hard for visually impaired voters to ensure their ballot was correctly printed and the envelope was correctly signed, said Jeff Thom, former president of the California Council of the Blind.\u003c/p>\n\u003cp>“Your printer may often be out of ink without you knowing it,” said Thom, who is blind.\u003c/p>\n\u003cp>Voters often seek help from family members and friends but sometimes have to pay others to help.\u003c/p>\n\u003cfigure id=\"attachment_11989108\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11989108\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Jeff Thom shares his experiences and unique challenges as a blind voter in Sacramento on May 14, 2024. \u003ccite>(Fred Greaves/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>To vote in the November 2022 election, Christopher Gray, who is blind, hired a reader to help him mark and return his ballot and had to take time off work to match his reader’s schedule, according to the federal lawsuit against the secretary of state to be heard later this month.\u003c/p>\n\u003cp>Gray said he chose to use a paper ballot instead of an electronic one because he needed help returning his ballot. “Though I trusted my reader, I could not independently confirm they accurately marked my ballot and mailed it on my behalf,” he said.\u003c/p>\n\u003cp>In the March primary, Gray voted in person because his paid assistant was sick for nearly a month, he said.\u003c/p>\n\u003cp>The dependence on others may make some voters feel beholden to their assistants, said Fred Nisen, a disability attorney who has \u003ca href=\"https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999#:~:text=Cerebral%20palsy%20is%20a%20group,palsy%20may%20have%20exaggerated%20reflexes.\">cerebral palsy\u003c/a>. Nisen is co-chairperson of the \u003ca href=\"https://www.sos.ca.gov/elections/vaac\">Voting Accessibility Advisory Committee\u003c/a>, which makes recommendations to the secretary of state’s office and \u003ca href=\"http://www.leginfo.ca.gov/pub/15-16/bill/asm/ab_0651-0700/ab_683_cfa_20150826_161916_sen_floor.html\">whose scope was expanded in 2016\u003c/a> to voters with any disability, not just the visually impaired.\u003c/p>\n\u003cp>If someone’s political beliefs don’t align with their caregiver’s, for example, the caregiver might threaten to quit, Nisen said. “If you are divulging who you want to vote for, it can create conflict,” Nisen told CalMatters.\u003c/p>\n\u003cp>For visually impaired voters who want to cast their ballot in person, the \u003ca href=\"https://www.kqed.org/news/11907125/report-reducing-voting-locations-discouraged-participation-for-californias-black-and-latino-voters-in-2020\">consolidation of voting locations\u003c/a> in some counties forced some to travel farther.\u003c/p>\n\u003cp>“You couldn’t just walk through your neighborhood polling place anymore. You had to likely get in a car or take an Uber or transit to these vote centers, which is just way more inconvenient,” said Tim Elder, a blind voter in Alameda County and a disability attorney.\u003c/p>\n\u003cp>In 2023, the U.S. Department of Justice opened an investigation into \u003ca href=\"https://www.justice.gov/crt/media/1338841/dl\">accessibility at Los Angeles County’s voting locations\u003c/a> during the 2020 and 2022 elections, focused on issues such as ramps and signage for voters with disabilities, including those with vision impairments.\u003c/p>\n\u003cp>Thom said that the audio on some voting machines can be muffled, and increasing the volume sometimes makes it even harder to hear.\u003c/p>\n\u003cp>In Alameda County, in-person voting was difficult even after Martinez’s lawsuit, according to some blind voters. During the June 2016 election, Elder waited as poll workers struggled to turn on the audio feature of voting machines.\u003c/p>\n\u003cp>“I watched just voter after voter finish their ballot and move on,” until it was almost closing time, he said. He had brought his children to teach them about civic duty, but his wife, who had finished voting, had to take them home while he waited.\u003c/p>\n\u003cp>“It’s always an issue,” Martinez said. “It’s never under an hour.”\u003c/p>\n\u003cp>Poll workers receive some training on assisting voters with disabilities, but it’s not in-depth, said Valerie Morishige, a voting rights advocate in Los Angeles County. Workers are trained on how to be respectful to all voters and how to increase font size or turn on audio options.\u003c/p>\n\u003cp>And while she said accessibility has improved over the last three elections, Morishige recalls issues such as power outages that prevented the use of audio or audio not being loaded onto voting machines. In one case, Morishige said she helped a voter by reading the entire ballot to her.\u003c/p>\n\u003cp>“Our system has a long way to go,” she said. “Our entire culture, honestly, has a long way to go to make this accessible for folks.”\u003c/p>\n\u003ch2>Is electronic ballot return too risky?\u003c/h2>\n\u003cp>Some California advocates and lawmakers have tried to improve access for voters with disabilities. In 2022, Sen. \u003ca href=\"https://digitaldemocracy.calmatters.org/legislators/steven-glazer-165414\">Steve Glazer\u003c/a>, an Orinda Democrat who led the Senate Elections Committee at the time, introduced the bill to \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB1480\">allow them to return their ballots electronically\u003c/a>. It died in the Assembly after the secretary of state’s office \u003ca href=\"https://www.calvoter.org/sites/default/files/sb_1480_glazer-_opp_sos_6.27.22.pdf\">opposed it (PDF)\u003c/a> due to security concerns.[aside postID=news_11964884 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2023/09/20230909-DAProtest-37-JY-KQED-1020x680.jpg']Glazer contended that security issues can be easily resolved, arguing people conduct financial transactions online already.\u003c/p>\n\u003cp>“I was disappointed that the secretary opposed my bill, which, all it did was give her the power to ask for\u003cstrong> \u003c/strong>a full assessment of the technology and security matters,” Glazer told CalMatters. “I think we all benefit by having broad accessibility to the ballot box, and that shouldn’t be limited by a disability.”\u003c/p>\n\u003cp>However, California would not be a trailblazer in allowing voters with disabilities to vote electronically.\u003c/p>\n\u003cp>Colorado, for example, \u003ca href=\"https://leg.colorado.gov/bills/sb21-188\">passed such a law\u003c/a> in 2021. Eligible voters must verify their identity by entering their driver’s license number or the last four digits of their Social Security number before marking and downloading their filled-out\u003cstrong> \u003c/strong>ballot. \u003ca href=\"https://myctbl.cde.state.co.us/sites/default/files/pdf/AccessibleVoting.pdf\">To return it (PDF)\u003c/a>, they must upload the electronic ballot, a signed ballot application and a picture of their ID to a secure state-run website.\u003c/p>\n\u003cp>Similarly, \u003ca href=\"https://app.enhancedvoting.com/ebd/voter/Hawaii/vbm\">Hawaii allows for\u003c/a> electronic returns through an online portal, email or fax. Voters can email their ballot to the county elections office along with a signed affidavit or an electronic signature via a secure link, \u003ca href=\"https://elections.hawaii.gov/accessible-electronic-ballot/\">according to the state\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"https://www.ksl.com/article/46600057/want-to-vote-from-your-smartphone-utah-county-to-become-3rd-area-in-us-to-test-mobile-voting\">Some counties\u003c/a> have tested voting with a smartphone app. But that method has sparked some security concerns, \u003ca href=\"https://www.sltrib.com/news/politics/2020/02/14/new-study-raises/\">with experts saying\u003c/a> the app could be hacked.\u003c/p>\n\u003cp>Electronic ballot return, in general, is deemed \u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">“high risk” (PDF)\u003c/a> by the National Institute of Standards and Technology, which recommended paper ballots. The institute said electronic ballots should be “\u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">limited to voters (PDF)\u003c/a> who have no other means to return their ballot and have it counted.”\u003c/p>\n\u003cp>Ryan Ronco, president of the California Association of Clerks and Elections Officials and the registrar of voters for Placer County, said he is concerned about that risk: “Until we can have a provable system that allows for that electronic process, I’d be wary of just allowing it before we know all the safeguards.”\u003c/p>\n\u003cp>But, he said, electronic ballot return is not a “never.”\u003c/p>\n\u003cp>“Technology is scary and amazing.”\u003c/p>\n\u003cp>Nisen acknowledged the security risks with online voting, which he said is why he would never advocate offering the option to all voters.\u003c/p>\n\u003cp>“Everybody in California has the right to vote independently and privately. But for voters with print disabilities, it’s only independent … if they vote in person,” he said. “We need to balance security with accessibility.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"excerpt": "California is hailed as a national leader in voting access. But visually impaired voters and their advocates say they still face unnecessary barriers such as broken voting machines, forcing them to have to read their vote out loud to others.",
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"title": "Californians With Disabilities Face Barriers When Voting, Even After Bills and Lawsuits | KQED",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Lisamaria Martinez isn’t sure when she last voted in person. But she remembers the boots she wore that day — her “fabulous,” new navy blue boots with chunky heels, which gave her blisters on her milelong walk back home from the polling place.\u003c/p>\n\u003cp>It was part of her “confidence attire” to feel empowered because on most election days, Martinez — a blind voter in Alameda County — said she had to show poll workers how to help her use the voting machine. She needed them to take her seriously.\u003c/p>\n\u003cp>“I shouldn’t have to tell people how to do their jobs, right?” Martinez said in an interview. “That emotional labor shouldn’t always be on the person with the disability.”\u003c/p>\n\u003cp>Martinez lost her sight when she was 5 due to severe allergic reactions but has regained some after surgeries. She needs her ballot read out loud to vote in person.\u003cstrong> \u003c/strong>In November 2012, however, the audio feature on the voting machine broke down, forcing her and others to read out their votes to others. She and others sued \u003ca href=\"https://drive.google.com/file/d/1p672vy2HezfYXEt06Sbpy0H3NGwTiIjB/view\">the county\u003c/a> in 2013.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Martinez’s other option is to fill out her ballot electronically. Visually impaired voters must still \u003ca href=\"https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mail\">print out the ballot\u003c/a>, make sure it’s correct, sign the envelope and return it, requiring help from a sighted person.\u003c/p>\n\u003cp>Others with \u003ca href=\"https://web.archive.org/web/20131024195135/http:/readingrights.org/definition-print-disabled\">print disabilities\u003c/a>, including those who struggle to use printed materials due to conditions such as learning disabilities or dexterity issues, experience similar challenges.\u003c/p>\n\u003cp>California has been hailed\u003cstrong> \u003c/strong>by \u003ca href=\"https://drshirleyweber.com/priorities/#:~:text=Leaders%20like%20Dr.%20Weber%20can%20restore%20trust%20in%20our%20democracy.\">state officials\u003c/a> and \u003ca href=\"https://www.aclu.org/press-releases/california-leads-nation-promoting-voter-access\">some voting rights advocates\u003c/a> as a \u003ca href=\"https://slate.com/news-and-politics/2020/08/2020-voting-guide.html\">national leader\u003c/a> in voting access. But advocates and blind voters, including Martinez, said Californians with disabilities still face unnecessary barriers to voting and lack options that work in other states. In 2022, the state ranked 17th in disability access, according to an election performance index by the \u003ca href=\"https://elections.mit.edu/#/data/indicators\">Massachusetts Institute of Technology\u003c/a>.\u003c/p>\n\u003cp>To comply with \u003ca href=\"https://www.justice.gov/crt/national-voter-registration-act-1993-nvra\">federal law\u003c/a>, the Secretary of State’s office doesn’t collect data on the number of registered voters with disabilities. \u003ca href=\"https://data.census.gov/table/ACSST1Y2022.S1810?q=california%20disability\">Census data shows\u003c/a> about 4.2 million Californians of voting age live with a disability. More than 892,000 Californians have a visual disability, and about 93% of them are 18 or older.\u003c/p>\n\u003cp>Prompted by new laws and court fights, California election officials have, in recent years, established stricter requirements to test how accessible voting machines are and have adopted systems for voters with disabilities to fill out their ballots electronically. However, efforts to allow people to also \u003cem>return\u003c/em> ballots electronically have stalled.\u003c/p>\n\u003cp>Now, disability advocates are going to court: They are asking a federal judge to compel Secretary of State Shirley Weber’s office to allow voters who have difficulty using printed materials to \u003ca href=\"https://dralegal.org/wp-content/uploads/2024/03/12_Ps_Ntc_of_Mtn__Mtn_for_PI__MOL_ISO_PI.pdf'\">return their ballots via fax (PDF)\u003c/a> in the November election — an option already available to \u003ca href=\"https://www.sos.ca.gov/elections/voter-registration/military-overseas-voters\">military and overseas voters\u003c/a>.\u003c/p>\n\u003cp>“The current paper-based ballot return requirements … impose significant, unlawful barriers for voters with print disabilities,” the plaintiffs argue in the case, \u003ca href=\"https://apps.cand.uscourts.gov/CEO/cfd.aspx?71bv\">scheduled to be heard June 24\u003c/a> in U.S. District Court in San Francisco.\u003c/p>\n\u003cp>A dozen states allow voters to return ballots electronically — by email, by fax or through an online portal — to at least some voters with disabilities, according to the \u003ca href=\"https://www.ncsl.org/elections-and-campaigns/electronic-ballot-return-internet-voting\">National Conference of State Legislatures\u003c/a>.\u003c/p>\n\u003cp>A \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220SB1480\">2022 bill\u003c/a> sought to do the same in California. However, Weber \u003ca href=\"https://www.calvoter.org/sites/default/files/sb_1480_glazer-_opp_sos_6.27.22.pdf\">opposed it\u003c/a>, arguing that online voting would be vulnerable to cyberattacks. Some security experts and other election officials across the nation also \u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">raised similar concerns (PDF)\u003c/a>.\u003c/p>\n\u003cp>The secretary of state “of course supports the expansion of the franchise so that more voters can vote with more convenience,” Weber said in her opposition letter. “However, it is also our responsibility to weigh the expansion of the franchise with the security and safety of our existing election methods.”\u003c/p>\n\u003cp>Weber’s office declined to answer CalMatters’ questions for this story last week, citing the agency’s policy not to speak about pending litigation.\u003c/p>\n\u003ch2>How do those with disabilities vote in California?\u003c/h2>\n\u003cp>California’s constitution guarantees every voter\u003cstrong> \u003c/strong>the right to a secret ballot, and its \u003ca href=\"https://www.sos.ca.gov/elections/voter-bill-rights\">voter bill of rights\u003c/a> guarantees any assistance they need.\u003c/p>\n\u003cp>\u003ca href=\"https://calmatters.org/explainers/california-all-mail-election-explained-november-2020/#b0e8ab03-bff3-47d1-8ebe-ab0f8c38e5c3\">Since the 1920s\u003c/a>,\u003cstrong> \u003c/strong>the state has expanded voting rights. California legalized absentee voting for military and overseas voters in 1922 and for \u003ca href=\"https://luskincenter.history.ucla.edu/wp-content/uploads/sites/66/2020/09/Reckoning-with-our-Rights-Report-September-2020.pdf#page=18\">voters with physical disabilities in 1930 (PDF)\u003c/a>. It expanded it to all registered \u003ca href=\"https://luskincenter.history.ucla.edu/wp-content/uploads/sites/66/2020/09/Reckoning-with-our-Rights-Report-September-2020.pdf#page=22\">voters in 1978 (PDF)\u003c/a>, and during the COVID-19 pandemic in 2021, became the \u003ca href=\"https://www.reuters.com/world/california-becomes-8th-us-state-make-universal-mail-in-ballots-permanent-2021-09-28/\">eighth state\u003c/a> to mail every registered voter a ballot.\u003c/p>\n\u003cp>Voters with \u003ca href=\"https://web.archive.org/web/20131024195135/http:/readingrights.org/definition-print-disabled\">print disabilities\u003c/a> have also had their voting access improve through a mix of \u003ca href=\"https://acl.gov/sites/default/files/programs/2016-12/HAVA_factsheet.pdf\">federal (PDF)\u003c/a> and state policies, but that access is still limited, and progress was gained often through court fights, according to blind voters and advocates.\u003c/p>\n\u003cp>In the 2013 lawsuit against Alameda County, Martinez and others argued that faulty machines disenfranchised voters and denied them the right to “vote with full privacy and independence.”\u003c/p>\n\u003cp>A Superior Court judge ruled in their favor in October 2013, and the county promised in May 2015 to test the accessibility of voting machines before every election, better\u003cstrong> \u003c/strong>train poll workers on those machines and establish a hotline for any equipment malfunctions, according to \u003ca href=\"https://dralegal.org/case/california-council-of-the-blind-ccb-et-al-v-county-of-alameda-et-al/\">Disability Rights Advocates\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_11989106\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11989106\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters02-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">A voter at a vote center at Santa Ana College in Santa Ana on March 5, 2024. \u003ccite>(Lauren Justice/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In 2015, blind voters and advocates also \u003ca href=\"https://rbgg.wpengine.com/wp-content/uploads/Dkt-1-Complaint-for-Violations-of-the-ADA-RA-GC-12-17-15-1325-1.pdf\">sued San Mateo County (PDF)\u003c/a> after the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201320140AB2028\">county mailed ballots\u003c/a> to all registered voters in 2014 to encourage more participation and reduce election costs.\u003c/p>\n\u003cp>The \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201320140AB2028\">nonpartisan Legislative Analyst’s Office\u003c/a> said all-mail balloting in another county did not significantly boost voter turnout and that some voters with disabilities might prefer in-person voting. And since there was no system to fill out ballots electronically at the time, disability activists argued it \u003ca href=\"https://www.santacruzsentinel.com/2015/12/18/lawsuit-san-mateo-county-absentee-voting-system-excludes-blind-voters/\">excluded some voters\u003c/a> who were unable to use printed ballots on their own.\u003c/p>\n\u003cp>“As a result, blind and visually impaired voters must rely on the assistance of others to read and mark their absentee ballots, thereby sacrificing the confidentiality of their vote, or forgo their right to vote by absentee ballot altogether,” \u003ca href=\"https://rbgg.wpengine.com/wp-content/uploads/Dkt-1-Complaint-for-Violations-of-the-ADA-RA-GC-12-17-15-1325-1.pdf\">the San Mateo lawsuit contended (PDF)\u003c/a>. The court eventually \u003ca href=\"https://rbgg.com/settlement-groundbreaking-lawsuit-paves-way-blind-voters-access-absentee-voting-program/\">sided with the plaintiffs\u003c/a>, ordering the county to better accommodate voters with disabilities.\u003c/p>\n\u003cp>The state Legislature \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201520160AB2252\">passed a law in 2016\u003c/a> to develop \u003ca href=\"https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mail\">a system\u003c/a> allowing eligible voters to fill out ballots electronically and \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201720180AB1013\">another in 2018\u003c/a> to require all counties to offer that system to voters with disabilities and military and overseas voters.\u003c/p>\n\u003cp>\u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201920200AB860\">A 2020 state law\u003c/a> required all counties to offer the system to \u003ca href=\"https://elections.cdn.sos.ca.gov/statewide-elections/2024-primary/trusted-info-ravbm.pdf\">any registered voter who requested it (PDF)\u003c/a> in the 2020 general election,\u003cstrong> \u003c/strong>and in 2021, another law \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=202120220AB37\">made that permanent\u003c/a>.\u003c/p>\n\u003cp>In a video demonstration by \u003ca href=\"https://www.youtube.com/watch?v=54-Xbg5Nbg4\">Disability Rights California\u003c/a>, voters can hear the ballot text, check boxes accordingly and listen to their choices before voting. Voters can also choose bigger fonts or use magnifying lenses to vote. Voter guides are also available in audio and large font forms. Mail-in ballot envelopes have \u003ca href=\"https://www.factcheck.org/2021/08/exposing-the-holes-in-a-california-recall-election-conspiracy-theory/\">punch holes\u003c/a>, in part, to help visually impaired voters find where to sign.\u003c/p>\n\u003cp>Last year, California\u003ca href=\"https://digitaldemocracy.calmatters.org/bills/ca_202320240ab545?slug=CA_202320240AB545\"> passed a law\u003c/a> that allows curbside voting for those with disabilities, regardless of whether the polling place is accessible or not.\u003c/p>\n\u003ch2>What are the hurdles for the visually impaired?\u003c/h2>\n\u003cp>Voters with disabilities who want to mail in their ballot even after filling it out electronically need to find a printer. And without help from sighted people, it is hard for visually impaired voters to ensure their ballot was correctly printed and the envelope was correctly signed, said Jeff Thom, former president of the California Council of the Blind.\u003c/p>\n\u003cp>“Your printer may often be out of ink without you knowing it,” said Thom, who is blind.\u003c/p>\n\u003cp>Voters often seek help from family members and friends but sometimes have to pay others to help.\u003c/p>\n\u003cfigure id=\"attachment_11989108\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11989108\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/06/CMVoters03-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Jeff Thom shares his experiences and unique challenges as a blind voter in Sacramento on May 14, 2024. \u003ccite>(Fred Greaves/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>To vote in the November 2022 election, Christopher Gray, who is blind, hired a reader to help him mark and return his ballot and had to take time off work to match his reader’s schedule, according to the federal lawsuit against the secretary of state to be heard later this month.\u003c/p>\n\u003cp>Gray said he chose to use a paper ballot instead of an electronic one because he needed help returning his ballot. “Though I trusted my reader, I could not independently confirm they accurately marked my ballot and mailed it on my behalf,” he said.\u003c/p>\n\u003cp>In the March primary, Gray voted in person because his paid assistant was sick for nearly a month, he said.\u003c/p>\n\u003cp>The dependence on others may make some voters feel beholden to their assistants, said Fred Nisen, a disability attorney who has \u003ca href=\"https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999#:~:text=Cerebral%20palsy%20is%20a%20group,palsy%20may%20have%20exaggerated%20reflexes.\">cerebral palsy\u003c/a>. Nisen is co-chairperson of the \u003ca href=\"https://www.sos.ca.gov/elections/vaac\">Voting Accessibility Advisory Committee\u003c/a>, which makes recommendations to the secretary of state’s office and \u003ca href=\"http://www.leginfo.ca.gov/pub/15-16/bill/asm/ab_0651-0700/ab_683_cfa_20150826_161916_sen_floor.html\">whose scope was expanded in 2016\u003c/a> to voters with any disability, not just the visually impaired.\u003c/p>\n\u003cp>If someone’s political beliefs don’t align with their caregiver’s, for example, the caregiver might threaten to quit, Nisen said. “If you are divulging who you want to vote for, it can create conflict,” Nisen told CalMatters.\u003c/p>\n\u003cp>For visually impaired voters who want to cast their ballot in person, the \u003ca href=\"https://www.kqed.org/news/11907125/report-reducing-voting-locations-discouraged-participation-for-californias-black-and-latino-voters-in-2020\">consolidation of voting locations\u003c/a> in some counties forced some to travel farther.\u003c/p>\n\u003cp>“You couldn’t just walk through your neighborhood polling place anymore. You had to likely get in a car or take an Uber or transit to these vote centers, which is just way more inconvenient,” said Tim Elder, a blind voter in Alameda County and a disability attorney.\u003c/p>\n\u003cp>In 2023, the U.S. Department of Justice opened an investigation into \u003ca href=\"https://www.justice.gov/crt/media/1338841/dl\">accessibility at Los Angeles County’s voting locations\u003c/a> during the 2020 and 2022 elections, focused on issues such as ramps and signage for voters with disabilities, including those with vision impairments.\u003c/p>\n\u003cp>Thom said that the audio on some voting machines can be muffled, and increasing the volume sometimes makes it even harder to hear.\u003c/p>\n\u003cp>In Alameda County, in-person voting was difficult even after Martinez’s lawsuit, according to some blind voters. During the June 2016 election, Elder waited as poll workers struggled to turn on the audio feature of voting machines.\u003c/p>\n\u003cp>“I watched just voter after voter finish their ballot and move on,” until it was almost closing time, he said. He had brought his children to teach them about civic duty, but his wife, who had finished voting, had to take them home while he waited.\u003c/p>\n\u003cp>“It’s always an issue,” Martinez said. “It’s never under an hour.”\u003c/p>\n\u003cp>Poll workers receive some training on assisting voters with disabilities, but it’s not in-depth, said Valerie Morishige, a voting rights advocate in Los Angeles County. Workers are trained on how to be respectful to all voters and how to increase font size or turn on audio options.\u003c/p>\n\u003cp>And while she said accessibility has improved over the last three elections, Morishige recalls issues such as power outages that prevented the use of audio or audio not being loaded onto voting machines. In one case, Morishige said she helped a voter by reading the entire ballot to her.\u003c/p>\n\u003cp>“Our system has a long way to go,” she said. “Our entire culture, honestly, has a long way to go to make this accessible for folks.”\u003c/p>\n\u003ch2>Is electronic ballot return too risky?\u003c/h2>\n\u003cp>Some California advocates and lawmakers have tried to improve access for voters with disabilities. In 2022, Sen. \u003ca href=\"https://digitaldemocracy.calmatters.org/legislators/steven-glazer-165414\">Steve Glazer\u003c/a>, an Orinda Democrat who led the Senate Elections Committee at the time, introduced the bill to \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB1480\">allow them to return their ballots electronically\u003c/a>. It died in the Assembly after the secretary of state’s office \u003ca href=\"https://www.calvoter.org/sites/default/files/sb_1480_glazer-_opp_sos_6.27.22.pdf\">opposed it (PDF)\u003c/a> due to security concerns.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Glazer contended that security issues can be easily resolved, arguing people conduct financial transactions online already.\u003c/p>\n\u003cp>“I was disappointed that the secretary opposed my bill, which, all it did was give her the power to ask for\u003cstrong> \u003c/strong>a full assessment of the technology and security matters,” Glazer told CalMatters. “I think we all benefit by having broad accessibility to the ballot box, and that shouldn’t be limited by a disability.”\u003c/p>\n\u003cp>However, California would not be a trailblazer in allowing voters with disabilities to vote electronically.\u003c/p>\n\u003cp>Colorado, for example, \u003ca href=\"https://leg.colorado.gov/bills/sb21-188\">passed such a law\u003c/a> in 2021. Eligible voters must verify their identity by entering their driver’s license number or the last four digits of their Social Security number before marking and downloading their filled-out\u003cstrong> \u003c/strong>ballot. \u003ca href=\"https://myctbl.cde.state.co.us/sites/default/files/pdf/AccessibleVoting.pdf\">To return it (PDF)\u003c/a>, they must upload the electronic ballot, a signed ballot application and a picture of their ID to a secure state-run website.\u003c/p>\n\u003cp>Similarly, \u003ca href=\"https://app.enhancedvoting.com/ebd/voter/Hawaii/vbm\">Hawaii allows for\u003c/a> electronic returns through an online portal, email or fax. Voters can email their ballot to the county elections office along with a signed affidavit or an electronic signature via a secure link, \u003ca href=\"https://elections.hawaii.gov/accessible-electronic-ballot/\">according to the state\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"https://www.ksl.com/article/46600057/want-to-vote-from-your-smartphone-utah-county-to-become-3rd-area-in-us-to-test-mobile-voting\">Some counties\u003c/a> have tested voting with a smartphone app. But that method has sparked some security concerns, \u003ca href=\"https://www.sltrib.com/news/politics/2020/02/14/new-study-raises/\">with experts saying\u003c/a> the app could be hacked.\u003c/p>\n\u003cp>Electronic ballot return, in general, is deemed \u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">“high risk” (PDF)\u003c/a> by the National Institute of Standards and Technology, which recommended paper ballots. The institute said electronic ballots should be “\u003ca href=\"https://www.ic3.gov/Media/News/2024/240214.pdf\">limited to voters (PDF)\u003c/a> who have no other means to return their ballot and have it counted.”\u003c/p>\n\u003cp>Ryan Ronco, president of the California Association of Clerks and Elections Officials and the registrar of voters for Placer County, said he is concerned about that risk: “Until we can have a provable system that allows for that electronic process, I’d be wary of just allowing it before we know all the safeguards.”\u003c/p>\n\u003cp>But, he said, electronic ballot return is not a “never.”\u003c/p>\n\u003cp>“Technology is scary and amazing.”\u003c/p>\n\u003cp>Nisen acknowledged the security risks with online voting, which he said is why he would never advocate offering the option to all voters.\u003c/p>\n\u003cp>“Everybody in California has the right to vote independently and privately. But for voters with print disabilities, it’s only independent … if they vote in person,” he said. “We need to balance security with accessibility.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>When Alice Wong — activist and founding director of the \u003ca href=\"https://disabilityvisibilityproject.com/about/\">Disability Visibility Project \u003c/a>— began conceptualizing the new anthology, \u003cem>Disability Intimacy\u003c/em>, she Googled what would become its title.\u003c/p>\n\u003cp>What she found was “basic AF” and made her go, “Ewwwwww.” So, she commissioned and collected writing from disabled people about what intimacy meant to them for the anthology published this week.\u003c/p>\n\u003cp>Shortly after Wong received the green light for this anthology in 2022, she developed aspiration pneumonia compounded by a collapsed lung. She was hospitalized for a month and emerged from the intensive care unit profoundly changed.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Wong — who has edited multiple anthologies, including \u003cem>Disability Visibility\u003c/em> and \u003cem>Low and Slow\u003c/em>, a series of food writing by disabled people — described working on this anthology in the aftermath of that hospitalization as a “critical lifeline just like the breaths of air from my ventilator and liquid nutrition flowing into my feeding tube.”\u003c/p>\n\u003cp>The anthology’s first-person essays and poems reflect on friendships, parent-child bonds, romantic and sexual relationships and disability communities. They cherish the love and care their authors give to others and themselves. They consider the sensation of touch from loved ones and health care workers alike. They bask in what it means to feel truly seen and celebrate the personal and collective change that intimacy creates.\u003c/p>\n\u003cp>Wong dedicates the anthology to herself, writing, “I love you very much. You deserve everything you desire.”\u003c/p>\n\u003cp>Wong spoke with KQED Forum’s Mina Kim about her hospitalization and why she focused this collection on intimacy. Wong describes disabled persons’ stories of “love, care and desire” as necessary for combatting long-oversimplified narratives — and for expanding our collective understanding of what intimacy really means.\u003c/p>\n\u003cp>\u003cem>This interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>Mina Kim: \u003c/strong>What did it mean to you to edit this anthology in the aftermath of hospitalization?\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> I turned 50 last month, and I’ve been reflecting a lot about the past. It’s amazing how much I have changed in the last 10 years and even in the last two years when \u003cem>Disability Intimacy\u003c/em> first came about. My memories of what happened two years ago have been very hazy; time folded like a piece of origami into an abstract alien shape. The book proposal for \u003cem>Disability Intimacy\u003c/em> was accepted in early 2022 before I was hospitalized that summer, which turned out to be the most horrific and traumatic time of my life. …\u003c/p>\n\u003cp>When I became seriously sick that summer, almost dying multiple times, I ended up with a radically different body. I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friendships became more intimate and that deepened my understanding of intimacy. …\u003c/p>\n\u003cp>Working on this book was such a joy and a part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. Editing this collection and the “Low and Slow” series for Eater.com gave me something to focus on; it was a lifeline in the midst of pain and suffering. Overall, it’s brought me a sense of gratitude that I’m still alive and have the privilege to work with so many talented people.\u003c/p>\n\u003cp>\u003cstrong>What did you find when you Googled ‘disability intimacy’?\u003c/strong>\u003c/p>\n\u003cp>The Google search, if that is a barometer of mainstream social attitudes and values, turned up articles on stereotypes, stigmas, sexuality, sexual abuse and sexual dysfunction. Stories about and by disabled people on “what it’s like” to date, have sex or be in a relationship abounded. I rolled my eyes so hard at them because it’s so basic, ableist, and vanilla, if you know what I mean.\u003c/p>\n\u003cp>Disabled people are so innovative and creative in the ways they express intimacy because we live in an ableist world with such narrow, conventional ideas of intimacy. To me, intimacy is more than sex or romantic love. Intimacy is about relationships within a person’s self, with others, with communities, with nature and beyond. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. It’s my hope that readers of my anthology will question their own ideas of intimacy and their relationships with it.\u003c/p>\n\u003cp>\u003cstrong>What’s your relationship with your voice today?\u003c/strong>\u003c/p>\n\u003cp>So there’s the physical voice, speech and sounds we make with our body, and voice in the broader sense, about your perspective on the world. I detest advocates who say they are “a voice for the voiceless” because everyone has a voice; it just might be in a different medium, and it’s our responsibility, if we actually care about diversity, to make an effort to listen and meet people where they are. And this is especially true for radio. I continue a voice through my writing as a columnist for \u003cem>Teen Vogue\u003c/em> and other projects, but my physical voice no longer exists since I now have a tracheostomy in my throat that is connected to a ventilator that I am dependent on 24/7.\u003c/p>\n\u003cp>I miss my physical voice. I was a really funny, witty speaking person. I wish you could have known me a few years ago, Mina, but I can’t go back; I can only go forward in this disabled cyborg body that is still alive and kicking butt. The way I express myself will never be the same. …\u003c/p>\n\u003cp>I would characterize my relationship to voice as fraught. I’m thankful to live in an era where I have an array of assistive technologies I can choose from — and at the same time, I struggle being heard, seen, and respected in my new non-speaking corporeal form. In one-on-one conversations, there is so much I want to say, and most of my friends are patient with me when I type a response, but there are times it takes minutes. I worry about them losing interest while they wait for me as I frantically type. My conversations have fundamentally changed. I find myself saying less, skipping certain parts of what I want to say, and becoming more succinct. …\u003c/p>\n\u003cp>I have lots of hot wisdom to drop, and I am determined to express myself fully without pressure. I still have a voice; I still have my words, but I have to undo the feeling of resentment of my present state at the way I present myself to the world that is shaped by forces beyond my control.\u003c/p>\n\u003cp>\u003cstrong>On her book’s dedication to herself.\u003c/strong>\u003c/p>\n\u003cp>I have a gigantic ego and am full of confidence about a lot of things, but I am also a puddle of insecurities, loneliness and self-doubt. Growing up disabled, I was made to feel a lot of shame and marginalized to the point where I questioned whether I belonged in many spaces. I think a lot of people feel that way whether they are disabled or not. It’s easier for me to love others than myself, so I just wanted to declare how much I love me and how I want all of my dreams to come true. Because let me tell you, Mina, I have plans to conquer the world. Insert evil laugh, ha ha ha.\u003c/p>\n\u003cp>\u003cstrong>On her ‘intimate partnership’ with death.\u003c/strong>\u003c/p>\n\u003cp>I turned 50 recently, and it was a real head trip. For \u003cem>Time\u003c/em> magazine, I \u003ca href=\"https://time.com/6960765/alice-wong-muscular-dystrophy-essay/\">wrote a piece \u003c/a>reflecting on all I have gone through and what my uncertain future holds. Doctors told my parents I wouldn’t live past 18, so I grew up without any dreams or images of a grown-up Alice. I could not see a future for myself, so I had to make one on my own. I had to will a pathway into existence.[aside label='Related Coverage' tag='disability-community']In my memoir, \u003cem>Year of the Tiger\u003c/em>, I wrote an essay about my first-grade teacher, Mrs. Shrock. In a note to me several years ago, she remembered one day in class, I asked her if I was going to die. And she said no, not now. I had no memory of that, but as I am typing this answer, I am tearing up thinking about it. Such heavy existential questions and fears preoccupied little 6-year-old Alice’s head. Death has always been a shadowy presence as someone with a progressive neuromuscular disability.\u003c/p>\n\u003cp>I have gone through lots of scary medical moments in my life, most recently this past January when I went to the ER. I was shocked to see so many health care providers without a mask or only wearing a blue surgical one that does not protect from airborne pathogens as effectively as an N95 mask. … It’s exhausting to be sick or disabled and drives me wild that many health care settings do not have mask mandates even though immunocompromised and high-risk patients have to go in for treatment. We’re still in a pandemic, even though our elected leaders would like us to forget that. No one should risk their lives when seeking health care.\u003c/p>\n\u003cp>The ER visit resulted in a one-day stay in the ICU, where I did not receive adequate pain relief during a procedure, and my communication device was not allowed in the room. I was powerless, crying nonstop, and unable to tell the nurses and technicians what was wrong. It was terrifying, and moments like these, where I am vulnerable and treated less than human, I wonder if I will die.\u003c/p>\n\u003cp>Not to be a downer for your listeners, but I think about death a lot, and it’s a constant in my life, a dance partner that takes me on a few too many dips and twirls for my liking. Death is an intimate partner of mine, and it makes me appreciate life. I make the most out of every day, celebrating, loving, and caring for my friends, family, and two cats, Bert and Ernie. Even though I am in a race against time, I am having as much fun as I can every single day, such as this conversation with you.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>When Alice Wong — activist and founding director of the \u003ca href=\"https://disabilityvisibilityproject.com/about/\">Disability Visibility Project \u003c/a>— began conceptualizing the new anthology, \u003cem>Disability Intimacy\u003c/em>, she Googled what would become its title.\u003c/p>\n\u003cp>What she found was “basic AF” and made her go, “Ewwwwww.” So, she commissioned and collected writing from disabled people about what intimacy meant to them for the anthology published this week.\u003c/p>\n\u003cp>Shortly after Wong received the green light for this anthology in 2022, she developed aspiration pneumonia compounded by a collapsed lung. She was hospitalized for a month and emerged from the intensive care unit profoundly changed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Wong — who has edited multiple anthologies, including \u003cem>Disability Visibility\u003c/em> and \u003cem>Low and Slow\u003c/em>, a series of food writing by disabled people — described working on this anthology in the aftermath of that hospitalization as a “critical lifeline just like the breaths of air from my ventilator and liquid nutrition flowing into my feeding tube.”\u003c/p>\n\u003cp>The anthology’s first-person essays and poems reflect on friendships, parent-child bonds, romantic and sexual relationships and disability communities. They cherish the love and care their authors give to others and themselves. They consider the sensation of touch from loved ones and health care workers alike. They bask in what it means to feel truly seen and celebrate the personal and collective change that intimacy creates.\u003c/p>\n\u003cp>Wong dedicates the anthology to herself, writing, “I love you very much. You deserve everything you desire.”\u003c/p>\n\u003cp>Wong spoke with KQED Forum’s Mina Kim about her hospitalization and why she focused this collection on intimacy. Wong describes disabled persons’ stories of “love, care and desire” as necessary for combatting long-oversimplified narratives — and for expanding our collective understanding of what intimacy really means.\u003c/p>\n\u003cp>\u003cem>This interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003cp>\u003cstrong>Mina Kim: \u003c/strong>What did it mean to you to edit this anthology in the aftermath of hospitalization?\u003c/p>\n\u003cp>\u003cstrong>Alice Wong:\u003c/strong> I turned 50 last month, and I’ve been reflecting a lot about the past. It’s amazing how much I have changed in the last 10 years and even in the last two years when \u003cem>Disability Intimacy\u003c/em> first came about. My memories of what happened two years ago have been very hazy; time folded like a piece of origami into an abstract alien shape. The book proposal for \u003cem>Disability Intimacy\u003c/em> was accepted in early 2022 before I was hospitalized that summer, which turned out to be the most horrific and traumatic time of my life. …\u003c/p>\n\u003cp>When I became seriously sick that summer, almost dying multiple times, I ended up with a radically different body. I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friendships became more intimate and that deepened my understanding of intimacy. …\u003c/p>\n\u003cp>Working on this book was such a joy and a part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. Editing this collection and the “Low and Slow” series for Eater.com gave me something to focus on; it was a lifeline in the midst of pain and suffering. Overall, it’s brought me a sense of gratitude that I’m still alive and have the privilege to work with so many talented people.\u003c/p>\n\u003cp>\u003cstrong>What did you find when you Googled ‘disability intimacy’?\u003c/strong>\u003c/p>\n\u003cp>The Google search, if that is a barometer of mainstream social attitudes and values, turned up articles on stereotypes, stigmas, sexuality, sexual abuse and sexual dysfunction. Stories about and by disabled people on “what it’s like” to date, have sex or be in a relationship abounded. I rolled my eyes so hard at them because it’s so basic, ableist, and vanilla, if you know what I mean.\u003c/p>\n\u003cp>Disabled people are so innovative and creative in the ways they express intimacy because we live in an ableist world with such narrow, conventional ideas of intimacy. To me, intimacy is more than sex or romantic love. Intimacy is about relationships within a person’s self, with others, with communities, with nature and beyond. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. It’s my hope that readers of my anthology will question their own ideas of intimacy and their relationships with it.\u003c/p>\n\u003cp>\u003cstrong>What’s your relationship with your voice today?\u003c/strong>\u003c/p>\n\u003cp>So there’s the physical voice, speech and sounds we make with our body, and voice in the broader sense, about your perspective on the world. I detest advocates who say they are “a voice for the voiceless” because everyone has a voice; it just might be in a different medium, and it’s our responsibility, if we actually care about diversity, to make an effort to listen and meet people where they are. And this is especially true for radio. I continue a voice through my writing as a columnist for \u003cem>Teen Vogue\u003c/em> and other projects, but my physical voice no longer exists since I now have a tracheostomy in my throat that is connected to a ventilator that I am dependent on 24/7.\u003c/p>\n\u003cp>I miss my physical voice. I was a really funny, witty speaking person. I wish you could have known me a few years ago, Mina, but I can’t go back; I can only go forward in this disabled cyborg body that is still alive and kicking butt. The way I express myself will never be the same. …\u003c/p>\n\u003cp>I would characterize my relationship to voice as fraught. I’m thankful to live in an era where I have an array of assistive technologies I can choose from — and at the same time, I struggle being heard, seen, and respected in my new non-speaking corporeal form. In one-on-one conversations, there is so much I want to say, and most of my friends are patient with me when I type a response, but there are times it takes minutes. I worry about them losing interest while they wait for me as I frantically type. My conversations have fundamentally changed. I find myself saying less, skipping certain parts of what I want to say, and becoming more succinct. …\u003c/p>\n\u003cp>I have lots of hot wisdom to drop, and I am determined to express myself fully without pressure. I still have a voice; I still have my words, but I have to undo the feeling of resentment of my present state at the way I present myself to the world that is shaped by forces beyond my control.\u003c/p>\n\u003cp>\u003cstrong>On her book’s dedication to herself.\u003c/strong>\u003c/p>\n\u003cp>I have a gigantic ego and am full of confidence about a lot of things, but I am also a puddle of insecurities, loneliness and self-doubt. Growing up disabled, I was made to feel a lot of shame and marginalized to the point where I questioned whether I belonged in many spaces. I think a lot of people feel that way whether they are disabled or not. It’s easier for me to love others than myself, so I just wanted to declare how much I love me and how I want all of my dreams to come true. Because let me tell you, Mina, I have plans to conquer the world. Insert evil laugh, ha ha ha.\u003c/p>\n\u003cp>\u003cstrong>On her ‘intimate partnership’ with death.\u003c/strong>\u003c/p>\n\u003cp>I turned 50 recently, and it was a real head trip. For \u003cem>Time\u003c/em> magazine, I \u003ca href=\"https://time.com/6960765/alice-wong-muscular-dystrophy-essay/\">wrote a piece \u003c/a>reflecting on all I have gone through and what my uncertain future holds. Doctors told my parents I wouldn’t live past 18, so I grew up without any dreams or images of a grown-up Alice. I could not see a future for myself, so I had to make one on my own. I had to will a pathway into existence.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>In my memoir, \u003cem>Year of the Tiger\u003c/em>, I wrote an essay about my first-grade teacher, Mrs. Shrock. In a note to me several years ago, she remembered one day in class, I asked her if I was going to die. And she said no, not now. I had no memory of that, but as I am typing this answer, I am tearing up thinking about it. Such heavy existential questions and fears preoccupied little 6-year-old Alice’s head. Death has always been a shadowy presence as someone with a progressive neuromuscular disability.\u003c/p>\n\u003cp>I have gone through lots of scary medical moments in my life, most recently this past January when I went to the ER. I was shocked to see so many health care providers without a mask or only wearing a blue surgical one that does not protect from airborne pathogens as effectively as an N95 mask. … It’s exhausting to be sick or disabled and drives me wild that many health care settings do not have mask mandates even though immunocompromised and high-risk patients have to go in for treatment. We’re still in a pandemic, even though our elected leaders would like us to forget that. No one should risk their lives when seeking health care.\u003c/p>\n\u003cp>The ER visit resulted in a one-day stay in the ICU, where I did not receive adequate pain relief during a procedure, and my communication device was not allowed in the room. I was powerless, crying nonstop, and unable to tell the nurses and technicians what was wrong. It was terrifying, and moments like these, where I am vulnerable and treated less than human, I wonder if I will die.\u003c/p>\n\u003cp>Not to be a downer for your listeners, but I think about death a lot, and it’s a constant in my life, a dance partner that takes me on a few too many dips and twirls for my liking. Death is an intimate partner of mine, and it makes me appreciate life. I make the most out of every day, celebrating, loving, and caring for my friends, family, and two cats, Bert and Ernie. Even though I am in a race against time, I am having as much fun as I can every single day, such as this conversation with you.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>Bonnie Lewkowicz recalls her first time ever trying a motorized beach wheelchair on the sands of Mission Beach down in San Diego — over 15 years ago.\u003c/p>\n\u003cp>“It kind of was like I was riding my chariot. It was bright yellow, so it really stood out,” said Lewkowicz, program manager at Bay Area Outreach and Recreation Program. “But people weren’t staring at me.”\u003c/p>\n\u003cp>The feeling of being “just another person on the beach,” she said, was “really kind of revelatory for me.”\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>Jump straight to: \u003ca href=\"#wheelchairrentalsbayareabeach\">Where to rent a beach wheelchair in the Bay Area\u003c/a>\u003c/strong>\u003c/li>\n\u003c/ul>\n\u003cp>Lewkowicz has worked for more than forty years advocating for accessibility in sports and outdoor recreation for people with disabilities and is the creator of \u003ca href=\"https://accessnca.org/\">Access Northern California\u003c/a>, a site that promotes accessible trails in the region. And motorized beach wheelchairs like the one Lewkowicz describes are an example of an all-terrain wheelchair designed for disabled people to use out in nature.\u003c/p>\n\u003cp>Some of these all-terrain wheelchairs are highly sophisticated and use the same type of technology that tanks use in their designs. “You have chairs that climb mountains,” Lewkowicz said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Recently, she tested an all-terrain \u003ca href=\"https://freedomtrax.com/\">Freedom Trax\u003c/a> wheelchair, which enabled her to take the stairs directly down to the beach for the first time in over 50 years. “It didn’t prevent me from getting onto the beach — and then going wherever I wanted to, and just be[ing] on the beach like everyone else, and under my own power,” she said. “It was indescribable.”\u003c/p>\n\u003ch2>What to bear in mind when looking for a beach wheelchair rental\u003c/h2>\n\u003cp>Beaches can be challenging to make accessible, Lewkowicz said. Designing a wheelchair for the beach is not an easy task, which makes the resulting equipment very expensive to own as an individual — and even more so for a motorized one. “But they sure offer a greater amount of independence,” Lewkowicz said.\u003c/p>\n\u003cp>By contrast, manual — non-motorized — wheelchairs can be more affordable but bring drawbacks. They’re not always easy to push on the beach, Lewkowicz said, and require a second person to assist with pushing the chair. For example, “Two elderly people that have mobility disabilities … might not be able to push one another,” Lewkowicz said.\u003c/p>\n\u003cp>Still, manual beach wheelchairs can offer large wheels meant to tackle the sandy terrain and specialized handles to make this pushing easier. While beaches in the Bay Area do not yet offer motorized beach wheelchairs for rent, you can still find many areas where manual wheelchairs are available — usually for free.\u003c/p>\n\u003cp>Lewkowicz said that this kind of adaptive equipment “doesn’t have to be so narrowly thought of that it’s just for someone that has a permanent disability.”\u003c/p>\n\u003cp>“Maybe you’re recovering from hip surgery or something, and you’re an avid beachgoer [who wants] to get on the beach while you’re recovering,” she said.\u003c/p>\n\u003ch2>Exploring the Golden Gate with a wheelchair rental\u003c/h2>\n\u003cp>At Golden Gate National Recreation Area (GGNRA), \u003ca href=\"https://www.coastal.ca.gov/access/beach-wheelchairs.html\">the beach wheelchair program began thanks to a donation from the California Coastal Commission\u003c/a>. “The donation was to purchase a beach wheelchair and make it free to individuals visiting the park. And after 15 years, our program has grown over time, and it’s a very popular program,” said Richard De La O, accessibility program manager at GGNRA, Muir Woods National Monument and Fort Point National Historic Site.\u003c/p>\n\u003cp>\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">GGNRA offers beach wheelchairs as a free service to visitors throughout the park\u003c/a>. Wheelchairs are kept in lockers on-site at Stinson Beach, Muir Beach, Rodeo Beach, Baker Beach and Crissy Field’s East Beach. They can also be picked up from the GGNRA headquarters building at Fort Mason for use elsewhere in the park.\u003c/p>\n\u003cp>To reserve a wheelchair, you can email the accessibility team at goga_accessibility@nps.gov with your name, phone number and the location within the park that you’ll be visiting.\u003c/p>\n\u003cp>Additionally, seasonal beach mats are available at Rodeo Beach and Crissy Field’s East Beach — to provide a surface that’s easier for a wheelchair to navigate at the entrance of each beach. (\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Read more information about wheelchairs and beach mats at GGNRA\u003c/a>.)\u003c/p>\n\u003ch2>\u003ca id=\"wheelchairrentalsbayareabeach\">\u003c/a>Where can I rent or borrow a beach wheelchair in the Bay Area?\u003c/h2>\n\u003cp>Here’s a list of beaches that offer beach wheelchair reservations in the Bay Area, according to the \u003ca href=\"https://www.coastal.ca.gov/access/beach-wheelchairs.html\">California Coastal Commission.\u003c/a> Ways to reserve a wheelchair can greatly differ from place to place, so be sure you’ve made the right arrangements for the spot you’re heading to.\u003c/p>\n\u003cp>\u003cstrong>City and County of San Francisco\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Baker Beach, San Francisco.\u003c/li>\n\u003cli>Ocean Beach, San Francisco\u003c/li>\n\u003cli>East Beach, Crissy Field, San Francisco\u003c/li>\n\u003cli>Fort Mason, San Francisco\u003c/li>\n\u003c/ul>\n\u003cp>\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Reserve a chair ahead of time\u003c/a> to pick up from Fort Mason and drive to other San Francisco beaches. Email goga_accessibility@nps.gov or call 415-561-4700.\u003c/p>\n\u003cp>\u003cstrong>San Mateo County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Francis Beach\u003c/li>\n\u003cli>Half Moon Bay State Beach\u003c/li>\n\u003c/ul>\n\u003cp>Two manual wheelchairs are available free of charge from the entrance kiosk upon request. Call 650-726-8821 or \u003ca href=\"https://access.parks.ca.gov/parkinfo.asp?park=100&type=0\">find more information online\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Alameda County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Crown Memorial State Beach, Alameda\u003c/li>\n\u003c/ul>\n\u003cp>Wheelchairs are available on a first-come, first-served basis. They require an assistant to push and are not intended to enter the water. To arrange for the use of a chair, call the Crab Cove Visitors Center at 510-544-3187 or the Crown Beach park office at 888-27-2757, option 3, ext. 4522. Arrangements will be made to bring the chair out to the beach. It takes approximately 15 minutes to prepare the chair. Staff will give a brief orientation to the chair and arrange a time for the chair to be returned. For more information, call 510-544-3187 or \u003ca href=\"https://www.ebparks.org/parks/crown-beach\">find more details online\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Marin County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>\u003ca href=\"https://www.nps.gov/pore/planyourvisit/beach-wheelchairs.htm\">Drakes Beach, Point Reyes National Seashore\u003c/a>\u003c/li>\n\u003cli>Schoonmaker Point Marina, Sausalito. Contact Environmental Traveling Companions to reserve a chair: 415-474-7662 x13 or email kayak@etctrips.org\u003c/li>\n\u003cli>Rodeo Beach, Headlands Visitor Center, Ft. Barry: The chair must be reserved ahead of time. To reserve and find more information, call 415-331-1540 or 415-561-4700 or email goga_accessibility@nps.gov.\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\"> Read more information online.\u003c/a>\u003c/li>\n\u003cli>Muir Beach: The chair must be reserved ahead of time. To reserve and find more information, call 415-331-1540 or 415-561-4700 or email goga_accessibility@nps.gov. \u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Read more information online.\u003c/a>\u003c/li>\n\u003cli>China Camp State Park, San Rafael: Two beach wheelchairs are available on a first-come, first-served basis. They can be checked out from the China Camp Village cafe at 100 China Camp Village Road, San Rafael, open Saturday and Sunday except during winter months. For further information, contact Friends of China Camp at info@friendsofchinacamp.org or 415-456-0766.\u003c/li>\n\u003cli>Heart’s Desire Beach, Tomales Bay: A wheelchair is available year-round and is secured in the parking area at Heart’s Desire Beach. Visitors need to contact staff in advance to request the wheelchair and complete the waiver form. Call the Tomales Bay office at 415-669-1140 and leave a message regarding the chair, or email Nicholas Turner at Nicholas.Turner@parks.ca.gov or Michael Stockinger at Michael.Stockinger@parks.ca.gov.\u003c/li>\n\u003cli>Stinson Beach: For more information, call 415-561-4700 or \u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">find more details online.\u003c/a> To reserve a chair ahead of time, email goga_accessibility@nps.gov.\u003c/li>\n\u003c/ul>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>Sonoma County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Doran Beach Regional Park, Bodega Bay: All-terrain wheelchairs are available for free use on a first-come, first-served basis. Parks staff will assist with the check-out/check-in process. Please inquire with park staff at the entry station. \u003ca href=\"https://parks.sonomacounty.ca.gov/visit/find-a-park/doran-regional-park\">Find more information online\u003c/a> or contact Sonoma County Regional Park’s Accessibility and Inclusivity Manager Nubia Padilla, at nubia.padilla@sonoma-county.org.\u003c/li>\n\u003cli>Bodega Dunes Campground: For availability, call 707-875-3483 and\u003ca href=\"http://access.parks.ca.gov/parkinfo.asp?park=65&type=0\"> find more details online.\u003c/a>\u003c/li>\n\u003cli>Wright’s Beach Campground, Sonoma: A beach wheelchair is available on a first-come, first-serve basis. For more information, call 707-875-3483 or \u003ca href=\"https://wheelingcalscoast.org/site.php?site=94\">find details online.\u003c/a>\u003c/li>\n\u003cli>Fort Ross State Historic Park, Jenner: A beach wheelchair is available from the visitor center. \u003ca href=\"https://access.parks.ca.gov/parkinfo.asp?park=63&type=4\">Find more information online\u003c/a> or call 707-847-3437.\u003c/li>\n\u003cli>Gualala Point Regional Park, Sonoma: At the visitor center, available on a first-come, first-served basis. On-site park staff will assist with the check-out/check-in process. \u003ca href=\"https://parks.sonomacounty.ca.gov/visit/find-a-park/gualala-point-regional-park\">Find more information online\u003c/a> or call 707-785-2377.\u003c/li>\n\u003c/ul>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Bonnie Lewkowicz recalls her first time ever trying a motorized beach wheelchair on the sands of Mission Beach down in San Diego — over 15 years ago.\u003c/p>\n\u003cp>“It kind of was like I was riding my chariot. It was bright yellow, so it really stood out,” said Lewkowicz, program manager at Bay Area Outreach and Recreation Program. “But people weren’t staring at me.”\u003c/p>\n\u003cp>The feeling of being “just another person on the beach,” she said, was “really kind of revelatory for me.”\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>Jump straight to: \u003ca href=\"#wheelchairrentalsbayareabeach\">Where to rent a beach wheelchair in the Bay Area\u003c/a>\u003c/strong>\u003c/li>\n\u003c/ul>\n\u003cp>Lewkowicz has worked for more than forty years advocating for accessibility in sports and outdoor recreation for people with disabilities and is the creator of \u003ca href=\"https://accessnca.org/\">Access Northern California\u003c/a>, a site that promotes accessible trails in the region. And motorized beach wheelchairs like the one Lewkowicz describes are an example of an all-terrain wheelchair designed for disabled people to use out in nature.\u003c/p>\n\u003cp>Some of these all-terrain wheelchairs are highly sophisticated and use the same type of technology that tanks use in their designs. “You have chairs that climb mountains,” Lewkowicz said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Recently, she tested an all-terrain \u003ca href=\"https://freedomtrax.com/\">Freedom Trax\u003c/a> wheelchair, which enabled her to take the stairs directly down to the beach for the first time in over 50 years. “It didn’t prevent me from getting onto the beach — and then going wherever I wanted to, and just be[ing] on the beach like everyone else, and under my own power,” she said. “It was indescribable.”\u003c/p>\n\u003ch2>What to bear in mind when looking for a beach wheelchair rental\u003c/h2>\n\u003cp>Beaches can be challenging to make accessible, Lewkowicz said. Designing a wheelchair for the beach is not an easy task, which makes the resulting equipment very expensive to own as an individual — and even more so for a motorized one. “But they sure offer a greater amount of independence,” Lewkowicz said.\u003c/p>\n\u003cp>By contrast, manual — non-motorized — wheelchairs can be more affordable but bring drawbacks. They’re not always easy to push on the beach, Lewkowicz said, and require a second person to assist with pushing the chair. For example, “Two elderly people that have mobility disabilities … might not be able to push one another,” Lewkowicz said.\u003c/p>\n\u003cp>Still, manual beach wheelchairs can offer large wheels meant to tackle the sandy terrain and specialized handles to make this pushing easier. While beaches in the Bay Area do not yet offer motorized beach wheelchairs for rent, you can still find many areas where manual wheelchairs are available — usually for free.\u003c/p>\n\u003cp>Lewkowicz said that this kind of adaptive equipment “doesn’t have to be so narrowly thought of that it’s just for someone that has a permanent disability.”\u003c/p>\n\u003cp>“Maybe you’re recovering from hip surgery or something, and you’re an avid beachgoer [who wants] to get on the beach while you’re recovering,” she said.\u003c/p>\n\u003ch2>Exploring the Golden Gate with a wheelchair rental\u003c/h2>\n\u003cp>At Golden Gate National Recreation Area (GGNRA), \u003ca href=\"https://www.coastal.ca.gov/access/beach-wheelchairs.html\">the beach wheelchair program began thanks to a donation from the California Coastal Commission\u003c/a>. “The donation was to purchase a beach wheelchair and make it free to individuals visiting the park. And after 15 years, our program has grown over time, and it’s a very popular program,” said Richard De La O, accessibility program manager at GGNRA, Muir Woods National Monument and Fort Point National Historic Site.\u003c/p>\n\u003cp>\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">GGNRA offers beach wheelchairs as a free service to visitors throughout the park\u003c/a>. Wheelchairs are kept in lockers on-site at Stinson Beach, Muir Beach, Rodeo Beach, Baker Beach and Crissy Field’s East Beach. They can also be picked up from the GGNRA headquarters building at Fort Mason for use elsewhere in the park.\u003c/p>\n\u003cp>To reserve a wheelchair, you can email the accessibility team at goga_accessibility@nps.gov with your name, phone number and the location within the park that you’ll be visiting.\u003c/p>\n\u003cp>Additionally, seasonal beach mats are available at Rodeo Beach and Crissy Field’s East Beach — to provide a surface that’s easier for a wheelchair to navigate at the entrance of each beach. (\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Read more information about wheelchairs and beach mats at GGNRA\u003c/a>.)\u003c/p>\n\u003ch2>\u003ca id=\"wheelchairrentalsbayareabeach\">\u003c/a>Where can I rent or borrow a beach wheelchair in the Bay Area?\u003c/h2>\n\u003cp>Here’s a list of beaches that offer beach wheelchair reservations in the Bay Area, according to the \u003ca href=\"https://www.coastal.ca.gov/access/beach-wheelchairs.html\">California Coastal Commission.\u003c/a> Ways to reserve a wheelchair can greatly differ from place to place, so be sure you’ve made the right arrangements for the spot you’re heading to.\u003c/p>\n\u003cp>\u003cstrong>City and County of San Francisco\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Baker Beach, San Francisco.\u003c/li>\n\u003cli>Ocean Beach, San Francisco\u003c/li>\n\u003cli>East Beach, Crissy Field, San Francisco\u003c/li>\n\u003cli>Fort Mason, San Francisco\u003c/li>\n\u003c/ul>\n\u003cp>\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Reserve a chair ahead of time\u003c/a> to pick up from Fort Mason and drive to other San Francisco beaches. Email goga_accessibility@nps.gov or call 415-561-4700.\u003c/p>\n\u003cp>\u003cstrong>San Mateo County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Francis Beach\u003c/li>\n\u003cli>Half Moon Bay State Beach\u003c/li>\n\u003c/ul>\n\u003cp>Two manual wheelchairs are available free of charge from the entrance kiosk upon request. Call 650-726-8821 or \u003ca href=\"https://access.parks.ca.gov/parkinfo.asp?park=100&type=0\">find more information online\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Alameda County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Crown Memorial State Beach, Alameda\u003c/li>\n\u003c/ul>\n\u003cp>Wheelchairs are available on a first-come, first-served basis. They require an assistant to push and are not intended to enter the water. To arrange for the use of a chair, call the Crab Cove Visitors Center at 510-544-3187 or the Crown Beach park office at 888-27-2757, option 3, ext. 4522. Arrangements will be made to bring the chair out to the beach. It takes approximately 15 minutes to prepare the chair. Staff will give a brief orientation to the chair and arrange a time for the chair to be returned. For more information, call 510-544-3187 or \u003ca href=\"https://www.ebparks.org/parks/crown-beach\">find more details online\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Marin County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>\u003ca href=\"https://www.nps.gov/pore/planyourvisit/beach-wheelchairs.htm\">Drakes Beach, Point Reyes National Seashore\u003c/a>\u003c/li>\n\u003cli>Schoonmaker Point Marina, Sausalito. Contact Environmental Traveling Companions to reserve a chair: 415-474-7662 x13 or email kayak@etctrips.org\u003c/li>\n\u003cli>Rodeo Beach, Headlands Visitor Center, Ft. Barry: The chair must be reserved ahead of time. To reserve and find more information, call 415-331-1540 or 415-561-4700 or email goga_accessibility@nps.gov.\u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\"> Read more information online.\u003c/a>\u003c/li>\n\u003cli>Muir Beach: The chair must be reserved ahead of time. To reserve and find more information, call 415-331-1540 or 415-561-4700 or email goga_accessibility@nps.gov. \u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">Read more information online.\u003c/a>\u003c/li>\n\u003cli>China Camp State Park, San Rafael: Two beach wheelchairs are available on a first-come, first-served basis. They can be checked out from the China Camp Village cafe at 100 China Camp Village Road, San Rafael, open Saturday and Sunday except during winter months. For further information, contact Friends of China Camp at info@friendsofchinacamp.org or 415-456-0766.\u003c/li>\n\u003cli>Heart’s Desire Beach, Tomales Bay: A wheelchair is available year-round and is secured in the parking area at Heart’s Desire Beach. Visitors need to contact staff in advance to request the wheelchair and complete the waiver form. Call the Tomales Bay office at 415-669-1140 and leave a message regarding the chair, or email Nicholas Turner at Nicholas.Turner@parks.ca.gov or Michael Stockinger at Michael.Stockinger@parks.ca.gov.\u003c/li>\n\u003cli>Stinson Beach: For more information, call 415-561-4700 or \u003ca href=\"https://www.nps.gov/goga/planyourvisit/beach-wheelchairs.htm\">find more details online.\u003c/a> To reserve a chair ahead of time, email goga_accessibility@nps.gov.\u003c/li>\n\u003c/ul>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Sonoma County\u003c/strong>\u003c/p>\n\u003cul>\n\u003cli>Doran Beach Regional Park, Bodega Bay: All-terrain wheelchairs are available for free use on a first-come, first-served basis. Parks staff will assist with the check-out/check-in process. Please inquire with park staff at the entry station. \u003ca href=\"https://parks.sonomacounty.ca.gov/visit/find-a-park/doran-regional-park\">Find more information online\u003c/a> or contact Sonoma County Regional Park’s Accessibility and Inclusivity Manager Nubia Padilla, at nubia.padilla@sonoma-county.org.\u003c/li>\n\u003cli>Bodega Dunes Campground: For availability, call 707-875-3483 and\u003ca href=\"http://access.parks.ca.gov/parkinfo.asp?park=65&type=0\"> find more details online.\u003c/a>\u003c/li>\n\u003cli>Wright’s Beach Campground, Sonoma: A beach wheelchair is available on a first-come, first-serve basis. For more information, call 707-875-3483 or \u003ca href=\"https://wheelingcalscoast.org/site.php?site=94\">find details online.\u003c/a>\u003c/li>\n\u003cli>Fort Ross State Historic Park, Jenner: A beach wheelchair is available from the visitor center. \u003ca href=\"https://access.parks.ca.gov/parkinfo.asp?park=63&type=4\">Find more information online\u003c/a> or call 707-847-3437.\u003c/li>\n\u003cli>Gualala Point Regional Park, Sonoma: At the visitor center, available on a first-come, first-served basis. On-site park staff will assist with the check-out/check-in process. \u003ca href=\"https://parks.sonomacounty.ca.gov/visit/find-a-park/gualala-point-regional-park\">Find more information online\u003c/a> or call 707-785-2377.\u003c/li>\n\u003c/ul>\n\n\u003c/div>\u003c/p>",
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"slug": "whistleblowers-call-out-california-group-home-for-abuse-against-disabled-residents",
"title": "Whistleblowers Call Out California Group Home for Abuse Against Disabled Residents",
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"headTitle": "Whistleblowers Call Out California Group Home for Abuse Against Disabled Residents | KQED",
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"content": "\u003cp>[dropcap]K[/dropcap]atrina Turner’s eyes lit up when her father, Pat Turner, and his fiancée, Elaine Sheffer, walked through the door of the beige stucco house in the Sacramento County community of Fair Oaks, where she lives. She made soft moaning sounds as her parents embraced her. Katrina is 43 years old, developmentally disabled and nonverbal, but she has her own ways of communicating.\u003c/p>\n\u003cp>Katrina’s family has been worried about her. Just a few months after she moved to this group home for people with disabilities who need 24-hour care, known as an Enhanced Behavioral Supports Home (EBSH), mysterious injuries started appearing on her body. There were holes in her walls, and Katrina had become less responsive.\u003c/p>\n\u003cp>Turner and Sheffer were used to facilities letting Katrina down. Children with disabilities are \u003ca href=\"https://www.npr.org/sections/goatsandsoda/2022/04/12/1091679303/a-report-on-violence-against-kids-with-disabilities-is-sobering-if-not-surprisin\">far more likely to experience abuse\u003c/a>, and they said Katrina is no exception. Scars from past placements mark her skin, they said, and although she’s barely middle-aged, Katrina walks with the stooped shuffle of someone much older. But her family had hoped that here, at the Illinois Home — an EBSH named for the street where it’s located — Katrina had finally found a place where she’d get the 24\u003cspan style=\"font-weight: 400;\">– \u003c/span>7 care she needed.\u003c/p>\n\u003cp>Instead, Turner and Sheffer’s concerns have turned into a full-fledged investigation of the management and practices at the Illinois Home.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>EBSHs are supposed to be more tightly regulated than any other type of group home in the state. However, a KQED investigation into the Illinois Home and the company that operated it until June 2023 has revealed that staff were not meeting even minimum standards of care. Allegations of mistreatment are difficult to prove because the main victim, Katrina, is nonverbal. However, investigation records, state reports, and testimony from whistleblowers suggest that she suffered abuse and neglect for months at the hands of staffers, and state regulators failed to act promptly.\u003c/p>\n\u003ch2>As small group homes proliferate, so do oversight concerns\u003c/h2>\n\u003cp>The Department of Developmental Services (DDS) is the state agency charged with supporting the roughly 400,000 people in California who live with developmental disabilities like autism, cerebral palsy, or Down syndrome. DDS \u003ca href=\"https://www.dds.ca.gov/wp-content/uploads/2023/05/2023-May-Revision-Master-for-Internet-Linked.pdf\">oversees a budget of more than $14 billion\u003c/a>, nearly as much as the state’s correctional system. The agency funds thousands of organizations that provide services — like day programs, behavioral therapy, and group homes like the Illinois Home, where Katrina lives. Only four residents live in each home, a system designed to meet the high needs of the residents. These homes, often just converted houses in residential neighborhoods, replaced the large state-run institutions that state lawmakers voted to move away from in 2012. Advocates had high hopes that in these smaller settings, disabled Californians like Katrina would finally get the care promised to them by law.\u003c/p>\n\u003cp>“We’re concerned that in practice, some of these homes are at risk of turning into the very types of institutional placements they’ve been designed to prevent, just on a smaller scale,” said Will Leiner, managing attorney at \u003ca href=\"https://www.disabilityrightsca.org/\">Disability Rights California\u003c/a>, a nonprofit that advocates for the rights of disabled Californians.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Elaine Sheffer\"]‘We were hopeful because an EBSH home is overseen by the state. We were hopeful that this would mean there wouldn’t be such an opportunity for neglect or abuse… We thought everything was gonna be OK. But it’s not. It’s horrible.’[/pullquote]Leiner is also concerned by what he said is a staggering growth in the number of EBSHs.The first one opened in 2017, and now, just six years later, nearly 70 licensed EBSHs operate in California. And while they are smaller than the institutions that came before, they aren’t always well regulated. In 2022, the \u003ca href=\"https://www.auditor.ca.gov/pdfs/reports/2021-107.pdf\">California State Auditor found that DDS had failed to ensure residential facilities like EBSHs received the inspections and oversight\u003c/a> that state law requires. Furthermore, the State Auditor noted the same issue in a 2016 audit and “recommended then that DDS require the regional centers to address the issue. However, DDS has yet to take adequate action to ensure that the regional centers perform these reviews.”\u003c/p>\n\u003ch2>Katrina’s life in group home care\u003c/h2>\n\u003cp>Since she was a child, Katrina Turner has lived in group care facilities. She was often destructive, sometimes hurting herself or others, which made finding a stable living situation difficult. She bounced from one home to another, frequently experiencing mistreatment, according to her family. At one point, she spent over six months in a hospital room because the state wasn’t able to find a suitable placement for her.\u003c/p>\n\u003cp>Her family was determined to get her somewhere safe. So when they heard about an opening at an EBSH near their home in Sacramento, they were excited.\u003c/p>\n\u003cp>“We were hopeful because an EBSH home is overseen by the state,” Sheffer said. “We were hopeful that this would mean there wouldn’t be such an opportunity for neglect or abuse. She moved to the home, and we thought everything was gonna be OK. But it’s not. It’s horrible.”\u003c/p>\n\u003cfigure id=\"attachment_11965507\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965507\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED.jpg\" alt=\"A person with long hair looks through stacks of paperwork.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Elaine Sheffer goes through paperwork related to her stepdaughter Katrina Turner at home in Sacramento. Investigation records, state reports and testimony from whistleblowers suggest that Turner suffered abuse and neglect for months at the hands of staffers at the Illinois Home. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Katrina moved into the Illinois Home in March 2021. The facility was under investigation by the state at the time, something Turner said they knew nothing about.\u003c/p>\n\u003cp>Just a few months into her stay, a new company, Sevita Health, took over its operation. Sevita is one of the country’s largest operators of group homes and care facilities. Turner and Sheffer didn’t question the acquisition at the time, but about a year into Katrina’s residency there, her family began to suspect something wasn’t right.\u003c/p>\n\u003ch2>Abuse and mistreatment\u003c/h2>\n\u003cp>In February 2022, Elaine Sheffer received a surprising text and then an email from a Sevita staff member, Kylie LeBlanc.\u003c/p>\n\u003cp>A copy of the email obtained by KQED described a series of abusive incidents involving Katrina. Attached photos showed Katrina looking mournfully at the camera, with a deep, raised purple blotch spreading below her eye.\u003c/p>\n\u003cp>“When I walked in, Katrina had a black eye, and I was like, ‘Oh my God,’” LeBlanc said. “And my coworker said, ‘Kylie, it’s not even the worst part.’”\u003c/p>\n\u003cp>Along the walls of Katrina’s room, exactly at the height of her head, was a row of holes. LeBlanc believed they were caused by Katrina banging her head against the wall.\u003c/p>\n\u003cp>According to LeBlanc, the coworker told her, “‘I know people are locking her in the room. They’re closing the door and holding it shut while sitting in a chair.’”\u003c/p>\n\u003cp>Because of her history of self-injury, Katrina is supposed to be monitored at all times. Being locked in her room would have been confusing and frightening for her, LeBlanc said, and she may have resorted to self-injury.\u003c/p>\n\u003cp>\u003ca href=\"https://s3.documentcloud.org/documents/24214201/katrina-turner-combined-shift-notes_redacted.pdf\">Shift notes\u003c/a> provided by \u003cspan style=\"font-weight: 400;\">Katrina’s family and \u003c/span>another former Sevita employee showed that Katrina had repeatedly suffered injuries during night shifts in the weeks leading up to the black eye, including bruises.\u003c/p>\n\u003cp>Turner and Sheffer said they weren’t notified about the black eye by Sevita Health, as is required. They believed that, had LeBlanc not reached out, the family would have been kept in the dark. They also believed Katrina had suffered a concussion from the incident.\u003c/p>\n\u003cp>“She was also at that point having issues with throwing up and losing control of her bowels,” LeBlanc said. “Which is another sign of some kind of head injury or a concussion.”\u003c/p>\n\u003ch2>Inaction from regulators and Sevita Health\u003c/h2>\n\u003cp>LeBlanc said that she submitted complaints about the treatment of residents to Sevita Health’s HR department but that the company did not take action. So, she took her concerns directly to \u003ca href=\"https://www.altaregional.org/\">Alta Regional Center\u003c/a>, a state-funded nonprofit conducting safety checks, and \u003ca href=\"https://www.cdss.ca.gov/inforesources/community-care-licensing\">Community Care Licensing\u003c/a>, a state regulator investigating complaints. She sent documents describing the concussion incident, as well as evidence that staff had been mismanaging residents’ medications. \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p25\">Documents KQED obtained from Community Care Licensing\u003c/a> corroborate LeBlanc’s claims.\u003c/p>\n\u003cp>Additional shift notes show Katrina was repeatedly \u003ca href=\"https://s3.documentcloud.org/documents/24214201/katrina-turner-combined-shift-notes_redacted.pdf\">found drinking from a toilet\u003c/a> and a sprinkler head outside. These reports suggested to Katrina’s family that she was not receiving enough water, indicating serious neglect.\u003c/p>\n\u003cp>After an initial meeting with representatives from the regulating agencies, LeBlanc was hopeful that change was coming to the Illinois Home.\u003c/p>\n\u003cp>“They said they were gonna do things to fix it,” she said. “And absolutely nothing happened.”\u003c/p>\n\u003cp>Alta Regional Center \u003ca href=\"https://s3.documentcloud.org/documents/24214342/acrcs-kqed-response-7-28-23.pdf\">said it did take action\u003c/a>. In response to KQED’s questions, Alta wrote that between March 2022 and June 2023, the Illinois Home was “required to develop a corrective action plan and the Regional Center stopped referring new individuals for placement there.” This practice is known as “sanctioning” and is a way to blacklist a facility. But, though the Illinois Home was prevented from taking in new clients, Katrina and the other residents remained.\u003c/p>\n\u003ch2>‘Absolutely no oversight’\u003c/h2>\n\u003cp>Around the same time LeBlanc was blowing the whistle on practices at the Illinois Home, Sevita hired a new administrator named Ileya Silva to oversee it. She’d worked in group homes for 20 years and had developed a reputation for doing things by the book.\u003c/p>\n\u003cp>Silva was shocked by what she found at the Illinois Home. It appeared to her that during the eight months between Sevita’s acquisition of the home in July 2021 and her hiring, there had been “absolutely no oversight.” A \u003ca href=\"https://s3.documentcloud.org/documents/24214200/acrc-faclity-action-report-tech-log_redacted.pdf\">facility report from Alta Regional Center\u003c/a> reinforces Silva’s account.\u003c/p>\n\u003cp>That means Sevita was not doing the \u003ca href=\"https://www.cdss.ca.gov/portals/9/regs/ebshman2.pdf?ver=2017-03-22-093058-240\">typical things required to operate an EBSH\u003c/a>, including internal audits, check-ins and inspections. Silva said employees were severely undertrained and lacked even the most basic knowledge of the regulations.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Ileya Silva\"]‘I don’t want this to be the situation where I turn on the news one day and one of the clients has died. I just can’t have that on my conscience — that I didn’t say something, I didn’t do something.’[/pullquote]The Alta Regional facility report shows that staff members at all levels were behind on training and missing certifications. Some staff didn’t even have the required experience to work at an EBSH.\u003c/p>\n\u003cp>To compound the problems, the home was chronically under-staffed and employees worked long hours — sometimes 16 or even 24-hour shifts, according to Silva and LeBlanc.\u003c/p>\n\u003cp>And the Illinois Home wasn’t an isolated case, Silva said. Sevita operated two other group homes nearby and at least 20 other homes throughout California.\u003c/p>\n\u003cp>“It was very systemic,” Silva said. “They would send staff from other facilities, and they were at the same deficit. They didn’t have the understanding. They didn’t know the [regulations].”\u003c/p>\n\u003cfigure id=\"attachment_11965511\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965511\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED.jpg\" alt=\"A person with long hair stands beside a tree outside and looks at the camera.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ileya Silva, a former group home administrator at the home where Katrina Turner lived, stands outside her home in Sacramento. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>KQED provided Sevita Health with a detailed list of allegations and questions. The company declined to comment on specifics, citing the privacy of their residents, \u003ca href=\"https://s3.documentcloud.org/documents/24214218/sevita-statement_california-mentor_kalw.pdf\">but did provide a general statement\u003c/a>: “Sevita promotes ethical practices at all levels of the organization, and we remain committed to our core values of integrity, respect, inclusion, and growth.”\u003c/p>\n\u003ch2>Medication mismanagement\u003c/h2>\n\u003cp>One of the clearest examples of just how bad things were at the Illinois Home was how staff handled medications. Every dose of every medication in an EBSH is supposed to be documented, both for the safety of residents and to prevent misuse.\u003c/p>\n\u003cp>“In this field, staff do steal medications,” Silva said. “It’s why there are so many checks and balances.”\u003c/p>\n\u003cp>Silva said the standard protocol was to destroy unused medications at the end of each month. At the Illinois Home, however, “they had a year’s worth of backed-up meds that had not been destroyed.\u003c/p>\n\u003cp>“I have photos of a giant, gallon freezer bag that had maybe 150 pills in it,” Silva said. “Didn’t state what the medications were, didn’t state who the medications belonged to.”\u003c/p>\n\u003cp>Silva also noticed that all of the residents were on multiple strong medications at extremely high dosages. Katrina, for example, was on anti-psychotics, sedatives, and other powerful medications.\u003c/p>\n\u003cp>“It’s not very often that you’re gonna see all of the meds, and so many of them, prescribed at the maxed-out level,” she said.\u003c/p>\n\u003cfigure id=\"attachment_11965510\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965510\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED.jpg\" alt=\"A sheet of paper with sections crossed out.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ileya Silva goes through paperwork related to Katrina Turner’s treatment at the Illinois Home. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>California welfare code \u003ca href=\"https://codes.findlaw.com/ca/welfare-and-institutions-code/wic-sect-4502.html\">says that people with developmental disabilities have a right to be free from harm\u003c/a>, including “excessive medication.” When medications are used to sedate a resident or make them more compliant, that’s \u003ca href=\"https://www.law.cornell.edu/regulations/california/22-CCR-72018#:~:text=Chemical%20restraint%20means%20a%20drug,treat%20the%20patient%27s%20medical%20symptoms\">considered chemical restraint by the state\u003c/a> and is only permitted in very limited circumstances. Silva was concerned that all the residents in the home were being chemically restrained. It was a concern shared by Katrina’s family.\u003c/p>\n\u003cp>“She’s walking hunched over, and she walks like a little old lady,” Sheffer said. “And her mouth is open, and she’s drooling. And we’re like, this is not Katrina.”\u003c/p>\n\u003ch2>Van ride violence\u003c/h2>\n\u003cp>One of the most shocking instances of abuse came in June 2022. Illinois Home staff often transported residents to appointments and activities in a van. Katrina sometimes took her seatbelt off and attempted to stand up while the van was moving. Reports show that several staff members would slam on the brakes rather than gently helping her back to her seat, causing her to fly across the van.\u003c/p>\n\u003cp>“So that explains a lot of the bruises that she had on her lower back and the front of her legs,” Sheffer said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p19\">Reports from a Community Care Licensing investigation\u003c/a> indicate that three different staff members were “brake checking” residents over several months. One staffer \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p65\">is quoted as saying\u003c/a> that the driver of the van “Will brake check two to three times. Then she was laughing like it’s a joke. Happens all the time.”\u003c/p>\n\u003cp>Silva suspended the three employees accused of brake-checking Katrina and the other residents. Shortly after that, one of the employees quit, and \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p81\">the other two were terminated\u003c/a>.\u003c/p>\n\u003cp>“I don’t want this to be the situation where I turn on the news one day, and one of the clients has died,” Silva said. “And I just can’t have that on my conscience — that I didn’t say something, I didn’t do something.”\u003c/p>\n\u003cp>In response to the incidents, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">regulators increased pressure on Sevita to improve conditions\u003c/a>, but the company would continue operating the home for another year. Community Care Licensing issued citations, but documents show the penalties were relatively low. As of August 2023, The Illinois Home had been fined just over $1,500. That’s in contrast to the home’s \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">yearly revenue of over $1.5 million\u003c/a>.\u003c/p>\n\u003cp>In response to KQED’s questions about the Illinois Home and the abuse Katrina Turner suffered, Community Care Licensing wrote, “The Department licenses facilities in accordance with state law.”\u003c/p>\n\u003cp>In a separate response, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">DDS wrote\u003c/a>, “The actions described in these claims are inexcusable. They not only are inconsistent with the Department of Developmental Services’ (DDS’) expectations for care, but they also are entirely counter to what we stand for and what we expect in the care and support for the individuals who receive regional center services.”\u003c/p>\n\u003ch2>Private equity firms reap profits amid a track record of abuse\u003c/h2>\n\u003cp>Regulators may have responded slowly and with too little force, but Illeya Silva reserves the bulk of her anger for Sevita Health management, who she said could have taken it upon themselves to respond to allegations of abuse and mismanagement. Instead, she said management ignored regulations, failed to follow up on complaints, and fostered a culture of negligence.\u003c/p>\n\u003cp>Again, Sevita would not respond to specific allegations.\u003c/p>\n\u003cp>Sevita Health is part of a growing trend of private equity investment in the health care industry. The company is owned by two private equity firms: \u003ca href=\"https://www.centerbridge.com/\">Centerbridge Partners\u003c/a> and \u003ca href=\"https://vistria.com/\">The Vistria Group\u003c/a>. Private equity firms use money from investors to purchase private companies and then seek to increase their profitability, often by cutting costs. In health care fields, this can include reducing expenditures on staffing, training, and overhead.\u003c/p>\n\u003cp>In fact, the name Sevita Health only goes back to 2021, \u003ca href=\"https://www.prnewswire.com/news-releases/nations-leader-in-specialized-health-care-moves-forward-under-a-new-brand-301381984.html\">when the company rebranded itself\u003c/a>. The company’s previous name, The Mentor Network, had developed a strong negative reputation.\u003c/p>\n\u003cp>“It has had a host of allegations of abuse, neglect, mistreatment of people under Mentor Network’s care,” said Eileen O’Grady, a lead researcher at the \u003ca href=\"https://pestakeholder.org/\">Private Equity Stakeholder Project\u003c/a>, a nonprofit that researches private equity’s impact on communities and industries, including group homes. In 2022, she \u003ca href=\"https://pestakeholder.org/wp-content/uploads/2022/02/PESP_Youth_BH_Report_2022.pdf\">authored a report\u003c/a> that digs into the allegations that have swirled around the company.\u003c/p>\n\u003cp>[aside label='Related Coverage' tag='disability-community']One of The Mentor Network/Sevita’s major lines of business is running youth foster homes. In 2017, \u003ca href=\"https://www.documentcloud.org/documents/4111642-An-Examination-of-Foster-Care-in-the-United.html#document/p10/a382165\">a U.S. Senate investigation found that, over a decade, at least 86 children died at homes run by the company\u003c/a>, many more than the national average. And the committee found that the company only conducted internal investigations in 13 of those deaths.\u003c/p>\n\u003cp>That Senate investigation was partly prompted by a sweeping \u003ca href=\"https://www.buzzfeednews.com/article/aramroston/fostering-profits\">2015 investigation by Buzzfeed News\u003c/a>. In one article, Buzzfeed “identified deaths, sex abuse, and blunders in screening, training, and overseeing foster parents at the nation’s largest for-profit foster care company.”\u003c/p>\n\u003cp>In 2020, the U.S. Senate investigated Sevita subsidiaries in Oregon and Iowa that ran homes for disabled adults. \u003ca href=\"https://www.finance.senate.gov/imo/media/doc/120220%20Life%20at%20Cypress%20House%20-%20An%20Examination%20of%20Care%20Provided%20by%20MENTOR%20Oregon.pdf\">It found residents were subjected to abuse\u003c/a>, including sexual abuse, substandard care, lack of training, and extreme neglect. In one 2017 case in Oregon, a resident’s bed sores became so severe after months of neglect they had to be relocated to a hospital over 200 miles away for treatment.\u003c/p>\n\u003cp>In 2018, a Sevita program supervisor in Iowa \u003ca href=\"https://www.finance.senate.gov/imo/media/doc/2020-12-03%20FINAL%20Investigative%20Report%20(REM%20Iowa).pdf\">groomed a developmentally disabled resident for months\u003c/a> before sexually abusing them. The supervisor was eventually arrested and pleaded guilty.\u003c/p>\n\u003cp>Throughout that time, The Mentor Network/Sevita was also highly profitable.\u003c/p>\n\u003cp>“The last two private equity firms that bought it in March 2019, CenterBridge Partners and the Vistria Group, have piled debt onto [Sevita Health] and used the proceeds of that debt to pay themselves hundreds of millions of dollars,” O’Grady said. “It’s unconscionable that they should be making profits hand over fist while the company is continuing to mistreat the people under its care.”\u003c/p>\n\u003ch2>A dysfunctional cycle\u003c/h2>\n\u003cp>Through the fall of 2022, Ileya Silva continued to push for more transparency and accountability within the company, which she said strained her relationships with her superiors.\u003c/p>\n\u003cp>“I was seen as a problem because I wasn’t moving in the manner of ‘we’re protecting company over all else,’” she said.\u003c/p>\n\u003cp>Eventually, Silva was suspended from her job.\u003c/p>\n\u003cp>On June 30, 2023, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">Sevita Health voluntarily gave up the operation of the Illinois Home\u003c/a> after increased pressure from regulators — nearly a year and a half after Katrina’s black eye and concussion incident. According to the Department of Developmental Services, Sevita Health no longer operates any EBSHs in California. However, it continues to run 24 residential facilities and a number of day programs for adults with developmental disabilities in California.\u003c/p>\n\u003cfigure id=\"attachment_11965505\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965505\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED.jpg\" alt=\"Three people sit at a picnic table in a park.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Elaine Sheffer and Pat Turner spend time with Katrina Turner at Miller Park in the suburbs of Sacramento on Oct. 23. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Katrina Turner’s family said they’ve met with the new home operators, and their impressions were positive. But, due to the trauma of the past year and a half, they remain unconvinced that the system will protect Katrina if things go south again.\u003c/p>\n\u003cp>One potential bright spot for Katrina’s family is a bill slowly making its way through the state Legislature over the past year. \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240AB1147\">Assembly Bill 1147\u003c/a>, or The Disability Equity and Accountability Act, aims to address some of the systemic issues facing California’s developmental disability system. Among other changes, the bill would force regional centers and private nonprofits that contract with DDS, such as Alta Regional, to be more transparent by subjecting them to the state’s Public Records Act. It would also strengthen DDS’s ability to hold regional centers and service providers like Sevita accountable for failing to meet standards of care. However, regional centers have succeeded in removing key components of the bill and \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article278312728.html\">remain strongly opposed\u003c/a>.\u003c/p>\n\u003cp>\u003cem>This story was produced as a part of the USC Annenberg Center for Health Journalism’s 2022 Data Journalism Fellowship.\u003c/em>\u003c/p>\n\u003cp>\u003cem>A \u003ca href=\"https://www.kalw.org/withoutavoice\">series of stories\u003c/a> about this investigation first aired on KALW.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"excerpt": "Investigation records, state reports, family and whistleblower testimony suggest Katrina Turner suffered abuse and neglect for months at a group home near Sacramento — and state regulators failed to act promptly.",
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"title": "Whistleblowers Call Out California Group Home for Abuse Against Disabled Residents | KQED",
"description": "Investigation records, state reports, family and whistleblower testimony suggest Katrina Turner suffered abuse and neglect for months at a group home near Sacramento — and state regulators failed to act promptly.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003c/p>\u003cp>\u003cspan class=\"utils-parseShortcode-shortcodes-__dropcapShortcode__dropcap\">K\u003c/span>\u003c/p>\u003cp>atrina Turner’s eyes lit up when her father, Pat Turner, and his fiancée, Elaine Sheffer, walked through the door of the beige stucco house in the Sacramento County community of Fair Oaks, where she lives. She made soft moaning sounds as her parents embraced her. Katrina is 43 years old, developmentally disabled and nonverbal, but she has her own ways of communicating.\u003c/p>\n\u003cp>Katrina’s family has been worried about her. Just a few months after she moved to this group home for people with disabilities who need 24-hour care, known as an Enhanced Behavioral Supports Home (EBSH), mysterious injuries started appearing on her body. There were holes in her walls, and Katrina had become less responsive.\u003c/p>\n\u003cp>Turner and Sheffer were used to facilities letting Katrina down. Children with disabilities are \u003ca href=\"https://www.npr.org/sections/goatsandsoda/2022/04/12/1091679303/a-report-on-violence-against-kids-with-disabilities-is-sobering-if-not-surprisin\">far more likely to experience abuse\u003c/a>, and they said Katrina is no exception. Scars from past placements mark her skin, they said, and although she’s barely middle-aged, Katrina walks with the stooped shuffle of someone much older. But her family had hoped that here, at the Illinois Home — an EBSH named for the street where it’s located — Katrina had finally found a place where she’d get the 24\u003cspan style=\"font-weight: 400;\">– \u003c/span>7 care she needed.\u003c/p>\n\u003cp>Instead, Turner and Sheffer’s concerns have turned into a full-fledged investigation of the management and practices at the Illinois Home.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>EBSHs are supposed to be more tightly regulated than any other type of group home in the state. However, a KQED investigation into the Illinois Home and the company that operated it until June 2023 has revealed that staff were not meeting even minimum standards of care. Allegations of mistreatment are difficult to prove because the main victim, Katrina, is nonverbal. However, investigation records, state reports, and testimony from whistleblowers suggest that she suffered abuse and neglect for months at the hands of staffers, and state regulators failed to act promptly.\u003c/p>\n\u003ch2>As small group homes proliferate, so do oversight concerns\u003c/h2>\n\u003cp>The Department of Developmental Services (DDS) is the state agency charged with supporting the roughly 400,000 people in California who live with developmental disabilities like autism, cerebral palsy, or Down syndrome. DDS \u003ca href=\"https://www.dds.ca.gov/wp-content/uploads/2023/05/2023-May-Revision-Master-for-Internet-Linked.pdf\">oversees a budget of more than $14 billion\u003c/a>, nearly as much as the state’s correctional system. The agency funds thousands of organizations that provide services — like day programs, behavioral therapy, and group homes like the Illinois Home, where Katrina lives. Only four residents live in each home, a system designed to meet the high needs of the residents. These homes, often just converted houses in residential neighborhoods, replaced the large state-run institutions that state lawmakers voted to move away from in 2012. Advocates had high hopes that in these smaller settings, disabled Californians like Katrina would finally get the care promised to them by law.\u003c/p>\n\u003cp>“We’re concerned that in practice, some of these homes are at risk of turning into the very types of institutional placements they’ve been designed to prevent, just on a smaller scale,” said Will Leiner, managing attorney at \u003ca href=\"https://www.disabilityrightsca.org/\">Disability Rights California\u003c/a>, a nonprofit that advocates for the rights of disabled Californians.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘We were hopeful because an EBSH home is overseen by the state. We were hopeful that this would mean there wouldn’t be such an opportunity for neglect or abuse… We thought everything was gonna be OK. But it’s not. It’s horrible.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Leiner is also concerned by what he said is a staggering growth in the number of EBSHs.The first one opened in 2017, and now, just six years later, nearly 70 licensed EBSHs operate in California. And while they are smaller than the institutions that came before, they aren’t always well regulated. In 2022, the \u003ca href=\"https://www.auditor.ca.gov/pdfs/reports/2021-107.pdf\">California State Auditor found that DDS had failed to ensure residential facilities like EBSHs received the inspections and oversight\u003c/a> that state law requires. Furthermore, the State Auditor noted the same issue in a 2016 audit and “recommended then that DDS require the regional centers to address the issue. However, DDS has yet to take adequate action to ensure that the regional centers perform these reviews.”\u003c/p>\n\u003ch2>Katrina’s life in group home care\u003c/h2>\n\u003cp>Since she was a child, Katrina Turner has lived in group care facilities. She was often destructive, sometimes hurting herself or others, which made finding a stable living situation difficult. She bounced from one home to another, frequently experiencing mistreatment, according to her family. At one point, she spent over six months in a hospital room because the state wasn’t able to find a suitable placement for her.\u003c/p>\n\u003cp>Her family was determined to get her somewhere safe. So when they heard about an opening at an EBSH near their home in Sacramento, they were excited.\u003c/p>\n\u003cp>“We were hopeful because an EBSH home is overseen by the state,” Sheffer said. “We were hopeful that this would mean there wouldn’t be such an opportunity for neglect or abuse. She moved to the home, and we thought everything was gonna be OK. But it’s not. It’s horrible.”\u003c/p>\n\u003cfigure id=\"attachment_11965507\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965507\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED.jpg\" alt=\"A person with long hair looks through stacks of paperwork.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-030-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Elaine Sheffer goes through paperwork related to her stepdaughter Katrina Turner at home in Sacramento. Investigation records, state reports and testimony from whistleblowers suggest that Turner suffered abuse and neglect for months at the hands of staffers at the Illinois Home. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Katrina moved into the Illinois Home in March 2021. The facility was under investigation by the state at the time, something Turner said they knew nothing about.\u003c/p>\n\u003cp>Just a few months into her stay, a new company, Sevita Health, took over its operation. Sevita is one of the country’s largest operators of group homes and care facilities. Turner and Sheffer didn’t question the acquisition at the time, but about a year into Katrina’s residency there, her family began to suspect something wasn’t right.\u003c/p>\n\u003ch2>Abuse and mistreatment\u003c/h2>\n\u003cp>In February 2022, Elaine Sheffer received a surprising text and then an email from a Sevita staff member, Kylie LeBlanc.\u003c/p>\n\u003cp>A copy of the email obtained by KQED described a series of abusive incidents involving Katrina. Attached photos showed Katrina looking mournfully at the camera, with a deep, raised purple blotch spreading below her eye.\u003c/p>\n\u003cp>“When I walked in, Katrina had a black eye, and I was like, ‘Oh my God,’” LeBlanc said. “And my coworker said, ‘Kylie, it’s not even the worst part.’”\u003c/p>\n\u003cp>Along the walls of Katrina’s room, exactly at the height of her head, was a row of holes. LeBlanc believed they were caused by Katrina banging her head against the wall.\u003c/p>\n\u003cp>According to LeBlanc, the coworker told her, “‘I know people are locking her in the room. They’re closing the door and holding it shut while sitting in a chair.’”\u003c/p>\n\u003cp>Because of her history of self-injury, Katrina is supposed to be monitored at all times. Being locked in her room would have been confusing and frightening for her, LeBlanc said, and she may have resorted to self-injury.\u003c/p>\n\u003cp>\u003ca href=\"https://s3.documentcloud.org/documents/24214201/katrina-turner-combined-shift-notes_redacted.pdf\">Shift notes\u003c/a> provided by \u003cspan style=\"font-weight: 400;\">Katrina’s family and \u003c/span>another former Sevita employee showed that Katrina had repeatedly suffered injuries during night shifts in the weeks leading up to the black eye, including bruises.\u003c/p>\n\u003cp>Turner and Sheffer said they weren’t notified about the black eye by Sevita Health, as is required. They believed that, had LeBlanc not reached out, the family would have been kept in the dark. They also believed Katrina had suffered a concussion from the incident.\u003c/p>\n\u003cp>“She was also at that point having issues with throwing up and losing control of her bowels,” LeBlanc said. “Which is another sign of some kind of head injury or a concussion.”\u003c/p>\n\u003ch2>Inaction from regulators and Sevita Health\u003c/h2>\n\u003cp>LeBlanc said that she submitted complaints about the treatment of residents to Sevita Health’s HR department but that the company did not take action. So, she took her concerns directly to \u003ca href=\"https://www.altaregional.org/\">Alta Regional Center\u003c/a>, a state-funded nonprofit conducting safety checks, and \u003ca href=\"https://www.cdss.ca.gov/inforesources/community-care-licensing\">Community Care Licensing\u003c/a>, a state regulator investigating complaints. She sent documents describing the concussion incident, as well as evidence that staff had been mismanaging residents’ medications. \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p25\">Documents KQED obtained from Community Care Licensing\u003c/a> corroborate LeBlanc’s claims.\u003c/p>\n\u003cp>Additional shift notes show Katrina was repeatedly \u003ca href=\"https://s3.documentcloud.org/documents/24214201/katrina-turner-combined-shift-notes_redacted.pdf\">found drinking from a toilet\u003c/a> and a sprinkler head outside. These reports suggested to Katrina’s family that she was not receiving enough water, indicating serious neglect.\u003c/p>\n\u003cp>After an initial meeting with representatives from the regulating agencies, LeBlanc was hopeful that change was coming to the Illinois Home.\u003c/p>\n\u003cp>“They said they were gonna do things to fix it,” she said. “And absolutely nothing happened.”\u003c/p>\n\u003cp>Alta Regional Center \u003ca href=\"https://s3.documentcloud.org/documents/24214342/acrcs-kqed-response-7-28-23.pdf\">said it did take action\u003c/a>. In response to KQED’s questions, Alta wrote that between March 2022 and June 2023, the Illinois Home was “required to develop a corrective action plan and the Regional Center stopped referring new individuals for placement there.” This practice is known as “sanctioning” and is a way to blacklist a facility. But, though the Illinois Home was prevented from taking in new clients, Katrina and the other residents remained.\u003c/p>\n\u003ch2>‘Absolutely no oversight’\u003c/h2>\n\u003cp>Around the same time LeBlanc was blowing the whistle on practices at the Illinois Home, Sevita hired a new administrator named Ileya Silva to oversee it. She’d worked in group homes for 20 years and had developed a reputation for doing things by the book.\u003c/p>\n\u003cp>Silva was shocked by what she found at the Illinois Home. It appeared to her that during the eight months between Sevita’s acquisition of the home in July 2021 and her hiring, there had been “absolutely no oversight.” A \u003ca href=\"https://s3.documentcloud.org/documents/24214200/acrc-faclity-action-report-tech-log_redacted.pdf\">facility report from Alta Regional Center\u003c/a> reinforces Silva’s account.\u003c/p>\n\u003cp>That means Sevita was not doing the \u003ca href=\"https://www.cdss.ca.gov/portals/9/regs/ebshman2.pdf?ver=2017-03-22-093058-240\">typical things required to operate an EBSH\u003c/a>, including internal audits, check-ins and inspections. Silva said employees were severely undertrained and lacked even the most basic knowledge of the regulations.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘I don’t want this to be the situation where I turn on the news one day and one of the clients has died. I just can’t have that on my conscience — that I didn’t say something, I didn’t do something.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>The Alta Regional facility report shows that staff members at all levels were behind on training and missing certifications. Some staff didn’t even have the required experience to work at an EBSH.\u003c/p>\n\u003cp>To compound the problems, the home was chronically under-staffed and employees worked long hours — sometimes 16 or even 24-hour shifts, according to Silva and LeBlanc.\u003c/p>\n\u003cp>And the Illinois Home wasn’t an isolated case, Silva said. Sevita operated two other group homes nearby and at least 20 other homes throughout California.\u003c/p>\n\u003cp>“It was very systemic,” Silva said. “They would send staff from other facilities, and they were at the same deficit. They didn’t have the understanding. They didn’t know the [regulations].”\u003c/p>\n\u003cfigure id=\"attachment_11965511\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965511\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED.jpg\" alt=\"A person with long hair stands beside a tree outside and looks at the camera.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-050-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ileya Silva, a former group home administrator at the home where Katrina Turner lived, stands outside her home in Sacramento. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>KQED provided Sevita Health with a detailed list of allegations and questions. The company declined to comment on specifics, citing the privacy of their residents, \u003ca href=\"https://s3.documentcloud.org/documents/24214218/sevita-statement_california-mentor_kalw.pdf\">but did provide a general statement\u003c/a>: “Sevita promotes ethical practices at all levels of the organization, and we remain committed to our core values of integrity, respect, inclusion, and growth.”\u003c/p>\n\u003ch2>Medication mismanagement\u003c/h2>\n\u003cp>One of the clearest examples of just how bad things were at the Illinois Home was how staff handled medications. Every dose of every medication in an EBSH is supposed to be documented, both for the safety of residents and to prevent misuse.\u003c/p>\n\u003cp>“In this field, staff do steal medications,” Silva said. “It’s why there are so many checks and balances.”\u003c/p>\n\u003cp>Silva said the standard protocol was to destroy unused medications at the end of each month. At the Illinois Home, however, “they had a year’s worth of backed-up meds that had not been destroyed.\u003c/p>\n\u003cp>“I have photos of a giant, gallon freezer bag that had maybe 150 pills in it,” Silva said. “Didn’t state what the medications were, didn’t state who the medications belonged to.”\u003c/p>\n\u003cp>Silva also noticed that all of the residents were on multiple strong medications at extremely high dosages. Katrina, for example, was on anti-psychotics, sedatives, and other powerful medications.\u003c/p>\n\u003cp>“It’s not very often that you’re gonna see all of the meds, and so many of them, prescribed at the maxed-out level,” she said.\u003c/p>\n\u003cfigure id=\"attachment_11965510\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965510\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED.jpg\" alt=\"A sheet of paper with sections crossed out.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-043-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ileya Silva goes through paperwork related to Katrina Turner’s treatment at the Illinois Home. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>California welfare code \u003ca href=\"https://codes.findlaw.com/ca/welfare-and-institutions-code/wic-sect-4502.html\">says that people with developmental disabilities have a right to be free from harm\u003c/a>, including “excessive medication.” When medications are used to sedate a resident or make them more compliant, that’s \u003ca href=\"https://www.law.cornell.edu/regulations/california/22-CCR-72018#:~:text=Chemical%20restraint%20means%20a%20drug,treat%20the%20patient%27s%20medical%20symptoms\">considered chemical restraint by the state\u003c/a> and is only permitted in very limited circumstances. Silva was concerned that all the residents in the home were being chemically restrained. It was a concern shared by Katrina’s family.\u003c/p>\n\u003cp>“She’s walking hunched over, and she walks like a little old lady,” Sheffer said. “And her mouth is open, and she’s drooling. And we’re like, this is not Katrina.”\u003c/p>\n\u003ch2>Van ride violence\u003c/h2>\n\u003cp>One of the most shocking instances of abuse came in June 2022. Illinois Home staff often transported residents to appointments and activities in a van. Katrina sometimes took her seatbelt off and attempted to stand up while the van was moving. Reports show that several staff members would slam on the brakes rather than gently helping her back to her seat, causing her to fly across the van.\u003c/p>\n\u003cp>“So that explains a lot of the bruises that she had on her lower back and the front of her legs,” Sheffer said.\u003c/p>\n\u003cp>\u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p19\">Reports from a Community Care Licensing investigation\u003c/a> indicate that three different staff members were “brake checking” residents over several months. One staffer \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p65\">is quoted as saying\u003c/a> that the driver of the van “Will brake check two to three times. Then she was laughing like it’s a joke. Happens all the time.”\u003c/p>\n\u003cp>Silva suspended the three employees accused of brake-checking Katrina and the other residents. Shortly after that, one of the employees quit, and \u003ca href=\"https://www.documentcloud.org/documents/24214193-pra-rem-ca-consolidated_redacted_v3#document/p81\">the other two were terminated\u003c/a>.\u003c/p>\n\u003cp>“I don’t want this to be the situation where I turn on the news one day, and one of the clients has died,” Silva said. “And I just can’t have that on my conscience — that I didn’t say something, I didn’t do something.”\u003c/p>\n\u003cp>In response to the incidents, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">regulators increased pressure on Sevita to improve conditions\u003c/a>, but the company would continue operating the home for another year. Community Care Licensing issued citations, but documents show the penalties were relatively low. As of August 2023, The Illinois Home had been fined just over $1,500. That’s in contrast to the home’s \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">yearly revenue of over $1.5 million\u003c/a>.\u003c/p>\n\u003cp>In response to KQED’s questions about the Illinois Home and the abuse Katrina Turner suffered, Community Care Licensing wrote, “The Department licenses facilities in accordance with state law.”\u003c/p>\n\u003cp>In a separate response, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">DDS wrote\u003c/a>, “The actions described in these claims are inexcusable. They not only are inconsistent with the Department of Developmental Services’ (DDS’) expectations for care, but they also are entirely counter to what we stand for and what we expect in the care and support for the individuals who receive regional center services.”\u003c/p>\n\u003ch2>Private equity firms reap profits amid a track record of abuse\u003c/h2>\n\u003cp>Regulators may have responded slowly and with too little force, but Illeya Silva reserves the bulk of her anger for Sevita Health management, who she said could have taken it upon themselves to respond to allegations of abuse and mismanagement. Instead, she said management ignored regulations, failed to follow up on complaints, and fostered a culture of negligence.\u003c/p>\n\u003cp>Again, Sevita would not respond to specific allegations.\u003c/p>\n\u003cp>Sevita Health is part of a growing trend of private equity investment in the health care industry. The company is owned by two private equity firms: \u003ca href=\"https://www.centerbridge.com/\">Centerbridge Partners\u003c/a> and \u003ca href=\"https://vistria.com/\">The Vistria Group\u003c/a>. Private equity firms use money from investors to purchase private companies and then seek to increase their profitability, often by cutting costs. In health care fields, this can include reducing expenditures on staffing, training, and overhead.\u003c/p>\n\u003cp>In fact, the name Sevita Health only goes back to 2021, \u003ca href=\"https://www.prnewswire.com/news-releases/nations-leader-in-specialized-health-care-moves-forward-under-a-new-brand-301381984.html\">when the company rebranded itself\u003c/a>. The company’s previous name, The Mentor Network, had developed a strong negative reputation.\u003c/p>\n\u003cp>“It has had a host of allegations of abuse, neglect, mistreatment of people under Mentor Network’s care,” said Eileen O’Grady, a lead researcher at the \u003ca href=\"https://pestakeholder.org/\">Private Equity Stakeholder Project\u003c/a>, a nonprofit that researches private equity’s impact on communities and industries, including group homes. In 2022, she \u003ca href=\"https://pestakeholder.org/wp-content/uploads/2022/02/PESP_Youth_BH_Report_2022.pdf\">authored a report\u003c/a> that digs into the allegations that have swirled around the company.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>One of The Mentor Network/Sevita’s major lines of business is running youth foster homes. In 2017, \u003ca href=\"https://www.documentcloud.org/documents/4111642-An-Examination-of-Foster-Care-in-the-United.html#document/p10/a382165\">a U.S. Senate investigation found that, over a decade, at least 86 children died at homes run by the company\u003c/a>, many more than the national average. And the committee found that the company only conducted internal investigations in 13 of those deaths.\u003c/p>\n\u003cp>That Senate investigation was partly prompted by a sweeping \u003ca href=\"https://www.buzzfeednews.com/article/aramroston/fostering-profits\">2015 investigation by Buzzfeed News\u003c/a>. In one article, Buzzfeed “identified deaths, sex abuse, and blunders in screening, training, and overseeing foster parents at the nation’s largest for-profit foster care company.”\u003c/p>\n\u003cp>In 2020, the U.S. Senate investigated Sevita subsidiaries in Oregon and Iowa that ran homes for disabled adults. \u003ca href=\"https://www.finance.senate.gov/imo/media/doc/120220%20Life%20at%20Cypress%20House%20-%20An%20Examination%20of%20Care%20Provided%20by%20MENTOR%20Oregon.pdf\">It found residents were subjected to abuse\u003c/a>, including sexual abuse, substandard care, lack of training, and extreme neglect. In one 2017 case in Oregon, a resident’s bed sores became so severe after months of neglect they had to be relocated to a hospital over 200 miles away for treatment.\u003c/p>\n\u003cp>In 2018, a Sevita program supervisor in Iowa \u003ca href=\"https://www.finance.senate.gov/imo/media/doc/2020-12-03%20FINAL%20Investigative%20Report%20(REM%20Iowa).pdf\">groomed a developmentally disabled resident for months\u003c/a> before sexually abusing them. The supervisor was eventually arrested and pleaded guilty.\u003c/p>\n\u003cp>Throughout that time, The Mentor Network/Sevita was also highly profitable.\u003c/p>\n\u003cp>“The last two private equity firms that bought it in March 2019, CenterBridge Partners and the Vistria Group, have piled debt onto [Sevita Health] and used the proceeds of that debt to pay themselves hundreds of millions of dollars,” O’Grady said. “It’s unconscionable that they should be making profits hand over fist while the company is continuing to mistreat the people under its care.”\u003c/p>\n\u003ch2>A dysfunctional cycle\u003c/h2>\n\u003cp>Through the fall of 2022, Ileya Silva continued to push for more transparency and accountability within the company, which she said strained her relationships with her superiors.\u003c/p>\n\u003cp>“I was seen as a problem because I wasn’t moving in the manner of ‘we’re protecting company over all else,’” she said.\u003c/p>\n\u003cp>Eventually, Silva was suspended from her job.\u003c/p>\n\u003cp>On June 30, 2023, \u003ca href=\"https://s3.documentcloud.org/documents/24214344/dds-kqed-response-7-28-23.pdf\">Sevita Health voluntarily gave up the operation of the Illinois Home\u003c/a> after increased pressure from regulators — nearly a year and a half after Katrina’s black eye and concussion incident. According to the Department of Developmental Services, Sevita Health no longer operates any EBSHs in California. However, it continues to run 24 residential facilities and a number of day programs for adults with developmental disabilities in California.\u003c/p>\n\u003cfigure id=\"attachment_11965505\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11965505\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED.jpg\" alt=\"Three people sit at a picnic table in a park.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/231023-DisabilityCareHomes-020-BL-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Elaine Sheffer and Pat Turner spend time with Katrina Turner at Miller Park in the suburbs of Sacramento on Oct. 23. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Katrina Turner’s family said they’ve met with the new home operators, and their impressions were positive. But, due to the trauma of the past year and a half, they remain unconvinced that the system will protect Katrina if things go south again.\u003c/p>\n\u003cp>One potential bright spot for Katrina’s family is a bill slowly making its way through the state Legislature over the past year. \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240AB1147\">Assembly Bill 1147\u003c/a>, or The Disability Equity and Accountability Act, aims to address some of the systemic issues facing California’s developmental disability system. Among other changes, the bill would force regional centers and private nonprofits that contract with DDS, such as Alta Regional, to be more transparent by subjecting them to the state’s Public Records Act. It would also strengthen DDS’s ability to hold regional centers and service providers like Sevita accountable for failing to meet standards of care. However, regional centers have succeeded in removing key components of the bill and \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article278312728.html\">remain strongly opposed\u003c/a>.\u003c/p>\n\u003cp>\u003cem>This story was produced as a part of the USC Annenberg Center for Health Journalism’s 2022 Data Journalism Fellowship.\u003c/em>\u003c/p>\n\u003cp>\u003cem>A \u003ca href=\"https://www.kalw.org/withoutavoice\">series of stories\u003c/a> about this investigation first aired on KALW.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"title": "Californians With Developmental Disabilities Must Soon Be Paid Minimum Wage. Can the State Find Enough Good Jobs?",
"headTitle": "Californians With Developmental Disabilities Must Soon Be Paid Minimum Wage. Can the State Find Enough Good Jobs? | KQED",
"content": "\u003cp>At a warehouse tucked into a suburban Bay Area office park, along white folding tables lined up like an assembly line, about 50 people on a March morning snapped together plastic pieces of bicycle safety mirrors or stuffed envelopes with a nonprofit’s donor letters.\u003c/p>\n\u003cp>The tasks were simple, but it’s work.\u003c/p>\n\u003cp>The laborers are all adults who have intellectual or developmental disabilities, performing jobs under contract for local businesses and nonprofits. \u003ca href=\"http://www.vistability.us/aboutus/\">VistAbility\u003c/a>, the nonprofit employment services provider that runs the shop, pays them each $3 to $14 an hour, depending on their speed.\u003c/p>\n\u003cp>The arrangement is legal — for now.\u003c/p>\n\u003cp>Thanks to \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article254509782.html\">a 2021 law change\u003c/a>, California will soon ban paying subminimum wages to people with disabilities, a decades-old practice originating from the Great Depression.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>By 2025 “sheltered” disability programs like the one at VistAbility — which together employ about 5,000 Californians statewide — must begin paying the state’s $15.50-an-hour minimum wage or shut down.\u003c/p>\n\u003cp>The transition toward better pay has exposed a bitter debate within the state’s disability services community: Can everyone with a disability get a job in the broader labor market — and should that be the goal? And for a group of people largely receiving public assistance, what’s the role of a job in their lives?\u003c/p>\n\u003cp>John Bolle, VistAbility’s executive director, said when his workshop is required to pay minimum wage, some of the faster workers may be able to keep working. But he doubts local businesses and nonprofits will pay more expensive contracts to accommodate higher wages, and he predicted that the people with the most significant disabilities likely will lose their jobs.\u003c/p>\n\u003cp>“The state is essentially ignoring those people,” he said.\u003c/p>\n\u003ch2>Better jobs ‘within my reach’\u003c/h2>\n\u003cp>At VistAbility some workers said they liked the company of co-workers, the steady tasks and guaranteed weekday hours. They said it would be harder to find an “outside job.” John Shillick, 61, said he used to clean motel rooms with the help of a job coach, but he found it difficult to keep pace.\u003c/p>\n\u003cp>“I would like to get a better job with a decent salary,” Shillick said. “I don’t know exactly what, but something within my reach.”\u003c/p>\n\u003cp>Opponents of subminimum wage programs like VistAbility’s say they segregate people who have disabilities, keeping them from obtaining better paying work and greater independence — which they could achieve with the right services to assist them.\u003c/p>\n\u003cfigure id=\"attachment_11949069\" class=\"wp-caption aligncenter\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/news/2023/05/10/californians-with-developmental-disabilities-must-now-be-paid-minimum-wage-can-the-state-find-enough-good-jobs/042723-visitability-calmatters-skn-img_3743-02-cm/\" rel=\"attachment wp-att-11949069\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11949069\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM.jpg\" alt=\"people sit space out at a long folding table in a warehouse, with stacks of envelopes and bins in front of them\" width=\"1568\" height=\"1045\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM.jpg 1568w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-1536x1024.jpg 1536w\" sizes=\"(max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">VistAbility workers pack envelopes with BART Clipper card information and assemble mirrors for bicycle helmets. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>On the other side, program operators and some workers’ families defend the current arrangements, saying these workers would not otherwise have job opportunities. \u003ca href=\"https://www.dds.ca.gov/rc/dashboard/employment/\">About 20% of people who have developmental disabilities in California are employed\u003c/a>, the state’s Department of Developmental Services says.\u003c/p>\n\u003cp>Chris Bowers’ 42-year-old son, Cory, was one. He worked for nearly 20 years for less than minimum wage at an Orange County retail store, where an employment services provider placed him. Recently that provider shut down its subminimum wage programs, ending his job.\u003c/p>\n\u003cp>Now Bowers can’t imagine his son, who has Down syndrome, finding a job like that one, which provided transportation and a job coach.\u003c/p>\n\u003cp>“There’s no avenue for our kids to go to a job site, other than somebody’s going to have to pay them $16 an hour,” Bowers said. “He can’t do the job of somebody that’s earning $16 an hour. It’s just not going to happen.”\u003c/p>\n\u003ch2>State resources for workers with disabilities\u003c/h2>\n\u003cp>The new law requires that all subminimum wage workshops phase out. Whether their participants end up in better jobs, or with little to occupy their days, in large part depends on how California’s disability services system responds.\u003c/p>\n\u003cp>The Department of Developmental Services, which pays for these services, says it is ramping up funding so providers of job placement services can get those currently working for less than minimum wage into “competitive integrated employment” — that is, working for at least minimum wage alongside coworkers who don’t have disabilities.\u003c/p>\n\u003cp>But if the past is prologue, the Legislative Analyst’s Office notes such resources are under-utilized.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Brian Winfield, director of programs, California Department of Developmental Services\"]‘We have to set a new direction for our entire system, where employment is the expectation for everyone.’[/pullquote]\u003c/p>\n\u003cp>The office analyzed state-funded competitive integrated employment programs for workers with disabilities — including paid internships — and found that service providers used only 60% of the funds allocated in the 2021-2022 fiscal year. And that was \u003ca href=\"https://abgt.assembly.ca.gov/sites/abgt.assembly.ca.gov/files/Feb%2022%202023%20-%20Asm%20Sub.%201%20Agenda%20-%20DDS%2C%20SCDD%2C%20and%20DOR%202.22.pdf\">the most spent in each of the last five years (PDF)\u003c/a>.\u003c/p>\n\u003cp>The developmental services department gave out $10 million in grants from last year’s budget to boost employment services and is developing another program this year to pay for placing workers with disabilities into competitive employment.\u003c/p>\n\u003cp>“We have to set a new direction for our entire system, where employment is the expectation for everyone,” said Brian Winfield, its director of programs.\u003c/p>\n\u003cp>But many worry that when workshops go away, there won’t be enough job placement services to go around. The disability services system is underfunded and understaffed, said Barry Jardini, director of the California Disability Services Association.\u003c/p>\n\u003cp>“A lot of the challenge is around whether or not we have the policies in place in California today to make it possible on a broad scale to provide the intensive (worker) supports and job discovery, job exploration,” Jardini said. “Right now all of this policy change is being overlaid on a very stressed system.”\u003c/p>\n\u003ch2>The first workshops\u003c/h2>\n\u003cp>There also is a lack of data. The state tracks the kinds of employment services these workers get, but not the kinds of jobs, so it’s unclear where people exiting workshops are landing.\u003c/p>\n\u003cp>Paying people with disabilities less than the minimum wage is legal because of a New Deal-era section of federal labor law called “14c,” designed to help wounded World War I veterans get limited access to jobs.\u003c/p>\n\u003cp>Employers registered with the federal government to hire these workers at a fraction of the pay of other workers. The employers assessed their productivity every six months, comparing them to non-disabled workers making market wages.\u003c/p>\n\u003cp>Now the vast majority of 14c employers in California are vocational rehabilitation providers — job training services for people who have intellectual or developmental disabilities, including autism, Down syndrome and cerebral palsy.\u003c/p>\n\u003cp>Californians with disabilities have a constitutional right to services that allow them to live as independently as possible. If they seek employment help, state regional disabilities centers can refer them to 14c programs or to other employment options.\u003c/p>\n\u003cp>Employers in 14c programs can pay workers less than not only the California minimum wage, but also the federal $7.25-an-hour minimum wage, in two types of settings: At congregate, factory-like worksites sometimes called “sheltered workshops,” or in small work groups that are assisted by a job coach. In the groups, three or four workers split a single minimum-wage position, typically mopping floors or stocking shelves at a local business.\u003c/p>\n\u003cp>Subminimum wage positions are most suitable for those with the most significant disabilities, program operators said.\u003c/p>\n\u003ch2>A national shift\u003c/h2>\n\u003cp>As part of the national shift toward integrating people with disabilities into communities, the U.S. Commission on Civil Rights in 2020 \u003ca href=\"https://www.usccr.gov/files/2020/2020-09-17-Subminimum-Wages-Report.pdf\">called for subminimum wage programs to end (PDF)\u003c/a>, saying the programs trap people in “exploitative and discriminatory” situations.\u003c/p>\n\u003cp>Michael Pugliese, who has autism, worked in a video rental store after high school but lost that job when the industry crashed.\u003c/p>\n\u003cp>When he was 21, a state regional center referred him to a sheltered workshop in the Sacramento area for employment training. At the workshop Pugliese assembled electronics alongside other workers with disabilities, cordoned off from other workers.\u003c/p>\n\u003cp>The job paid him about $225 a month, included little useful training for other work and made him feel like “a cog in a machine,” said Pugliese, now 37.\u003c/p>\n\u003cp>“I didn’t know at that point in time that was nickels and dimes,” he said of his pay, compared to co-workers’.[pullquote size=\"medium\" align=\"right\" citation=\"Carole Watilo, director, Progressive Employment Concepts\"]‘When you start from the premise that there are going to be people that you can’t find a job for, then that is going to be a self-fulfilling prophecy.’[/pullquote]A dozen states besides California have passed laws banning below-minimum-wage programs. Also a federal rule in effect this year requires disability services to be more integrated with the community.\u003c/p>\n\u003cp>These kinds of jobs have already declined in California. In 2009, as many as 16,000 people with disabilities worked in the workshops or the small groups that split a minimum wage. By 2021, employment in those programs had fallen to about 6,000, state officials said.\u003c/p>\n\u003cp>Now that the phaseout deadline approaches, it’s up to the state and a network of disability service providers to help transition workshop employees into other jobs, if they want them.\u003c/p>\n\u003ch2>Fitting each worker’s need\u003c/h2>\n\u003cp>The gold standard, according to the independent State Council on Developmental Disabilities, would be a job placement and coaching service that’s highly tailored to fit each worker’s needs and abilities.\u003c/p>\n\u003cp>Carole Watilo directs the Sacramento-area Progressive Employment Concepts, which provides job coaching and placement.\u003c/p>\n\u003cp>She said a client who uses a wheelchair and communicates using a tablet device handles code enforcement for a small police department in Sacramento County, including spotting such violations as people parking illegally in disabled spaces. A support worker drives him.\u003c/p>\n\u003cp>Progressive initially placed him there as a volunteer, she said, then it received grants to cover his work. She hopes to find him ongoing paid employment.\u003c/p>\n\u003cp>“When you start from the premise that there are going to be people that you can’t find a job for, then that is going to be a self-fulfilling prophecy,” Watilo said.\u003c/p>\n\u003cp>Pugliese also sought job services at Progressive after leaving the workshop. When he told them of his affinity for pets, a job coach found him a state-funded internship grooming dogs. They tried him at several pet groomers until they found a good fit.\u003c/p>\n\u003cp>He’s on a health leave now but normally earns $16 an hour.\u003c/p>\n\u003cp>“I’ve had more general impact on the actual shop than ever before,” he said. “My actual work effort was reflected in the shop’s progress. I mattered as a person and as an employee.”\u003c/p>\n\u003cfigure id=\"attachment_11949071\" class=\"wp-caption aligncenter\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/news/2023/05/10/californians-with-developmental-disabilities-must-now-be-paid-minimum-wage-can-the-state-find-enough-good-jobs/042723-visitability-calmatters-skn-img_3760-04-cm/\" rel=\"attachment wp-att-11949071\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11949071\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM.jpg\" alt=\"we look over the shoulder of an older woman with white hair as she works through a stack of plastic envelopes in front of her\" width=\"1568\" height=\"1045\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM.jpg 1568w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-1536x1024.jpg 1536w\" sizes=\"(max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">VistAbility worker Jennifer Painter assembles mirrors for bicycle helmets into plastic packaging. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>What’s realistic?\u003c/h2>\n\u003cp>Chris Bowers, Cory’s father, said he doubts his son will work the same jobs as everybody else. That’s just the reality of the job market, he said.\u003c/p>\n\u003cp>In high school Cory Bowers went to classes with a group of other students with disabilities. After they graduated, Goodwill of Orange County placed him, with two or three others, at a clothing company’s warehouse and later at a local retailer. They hung clothes on racks, splitting one minimum-wage job.\u003c/p>\n\u003cp>Corey took home $2.50 an hour, his father said. He loved his job and came home feeling accomplished and eager to spend his paycheck, taking his parents out to dinner, Chris Bowers said.\u003c/p>\n\u003cp>Goodwill of Orange County closed its subminimum wage program during the pandemic and never reopened it.\u003c/p>\n\u003cp>Before the pandemic, the nonprofit had placed as many as 700 workers in its stores or in local businesses, paying them less than minimum wage. Rick Adams, its vice president of mission services, said the “vast majority” of businesses were not interested in taking the workers back at higher wages.\u003c/p>\n\u003cp>Now about 100 people with disabilities work for Goodwill stores and 50 have jobs in the community, he said.\u003c/p>\n\u003cp>Instead of working, Cory now participates in a day services program that drives him and others to visit the library, coffee shops and stores. Chris Bowers described it as “glorified babysitting” and says his son is “different mentally.”\u003c/p>\n\u003cp>To Chris Bowers it was never about the money; his son lives with him and receives Social Security benefits.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“As parents, especially in my circle, we sure didn’t care what our kids made,” he said. “We just wanted our kids to be out in a job site, learning.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>At a warehouse tucked into a suburban Bay Area office park, along white folding tables lined up like an assembly line, about 50 people on a March morning snapped together plastic pieces of bicycle safety mirrors or stuffed envelopes with a nonprofit’s donor letters.\u003c/p>\n\u003cp>The tasks were simple, but it’s work.\u003c/p>\n\u003cp>The laborers are all adults who have intellectual or developmental disabilities, performing jobs under contract for local businesses and nonprofits. \u003ca href=\"http://www.vistability.us/aboutus/\">VistAbility\u003c/a>, the nonprofit employment services provider that runs the shop, pays them each $3 to $14 an hour, depending on their speed.\u003c/p>\n\u003cp>The arrangement is legal — for now.\u003c/p>\n\u003cp>Thanks to \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article254509782.html\">a 2021 law change\u003c/a>, California will soon ban paying subminimum wages to people with disabilities, a decades-old practice originating from the Great Depression.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>By 2025 “sheltered” disability programs like the one at VistAbility — which together employ about 5,000 Californians statewide — must begin paying the state’s $15.50-an-hour minimum wage or shut down.\u003c/p>\n\u003cp>The transition toward better pay has exposed a bitter debate within the state’s disability services community: Can everyone with a disability get a job in the broader labor market — and should that be the goal? And for a group of people largely receiving public assistance, what’s the role of a job in their lives?\u003c/p>\n\u003cp>John Bolle, VistAbility’s executive director, said when his workshop is required to pay minimum wage, some of the faster workers may be able to keep working. But he doubts local businesses and nonprofits will pay more expensive contracts to accommodate higher wages, and he predicted that the people with the most significant disabilities likely will lose their jobs.\u003c/p>\n\u003cp>“The state is essentially ignoring those people,” he said.\u003c/p>\n\u003ch2>Better jobs ‘within my reach’\u003c/h2>\n\u003cp>At VistAbility some workers said they liked the company of co-workers, the steady tasks and guaranteed weekday hours. They said it would be harder to find an “outside job.” John Shillick, 61, said he used to clean motel rooms with the help of a job coach, but he found it difficult to keep pace.\u003c/p>\n\u003cp>“I would like to get a better job with a decent salary,” Shillick said. “I don’t know exactly what, but something within my reach.”\u003c/p>\n\u003cp>Opponents of subminimum wage programs like VistAbility’s say they segregate people who have disabilities, keeping them from obtaining better paying work and greater independence — which they could achieve with the right services to assist them.\u003c/p>\n\u003cfigure id=\"attachment_11949069\" class=\"wp-caption aligncenter\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/news/2023/05/10/californians-with-developmental-disabilities-must-now-be-paid-minimum-wage-can-the-state-find-enough-good-jobs/042723-visitability-calmatters-skn-img_3743-02-cm/\" rel=\"attachment wp-att-11949069\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11949069\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM.jpg\" alt=\"people sit space out at a long folding table in a warehouse, with stacks of envelopes and bins in front of them\" width=\"1568\" height=\"1045\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM.jpg 1568w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3743-02-CM-1536x1024.jpg 1536w\" sizes=\"(max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">VistAbility workers pack envelopes with BART Clipper card information and assemble mirrors for bicycle helmets. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>On the other side, program operators and some workers’ families defend the current arrangements, saying these workers would not otherwise have job opportunities. \u003ca href=\"https://www.dds.ca.gov/rc/dashboard/employment/\">About 20% of people who have developmental disabilities in California are employed\u003c/a>, the state’s Department of Developmental Services says.\u003c/p>\n\u003cp>Chris Bowers’ 42-year-old son, Cory, was one. He worked for nearly 20 years for less than minimum wage at an Orange County retail store, where an employment services provider placed him. Recently that provider shut down its subminimum wage programs, ending his job.\u003c/p>\n\u003cp>Now Bowers can’t imagine his son, who has Down syndrome, finding a job like that one, which provided transportation and a job coach.\u003c/p>\n\u003cp>“There’s no avenue for our kids to go to a job site, other than somebody’s going to have to pay them $16 an hour,” Bowers said. “He can’t do the job of somebody that’s earning $16 an hour. It’s just not going to happen.”\u003c/p>\n\u003ch2>State resources for workers with disabilities\u003c/h2>\n\u003cp>The new law requires that all subminimum wage workshops phase out. Whether their participants end up in better jobs, or with little to occupy their days, in large part depends on how California’s disability services system responds.\u003c/p>\n\u003cp>The Department of Developmental Services, which pays for these services, says it is ramping up funding so providers of job placement services can get those currently working for less than minimum wage into “competitive integrated employment” — that is, working for at least minimum wage alongside coworkers who don’t have disabilities.\u003c/p>\n\u003cp>But if the past is prologue, the Legislative Analyst’s Office notes such resources are under-utilized.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘We have to set a new direction for our entire system, where employment is the expectation for everyone.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The office analyzed state-funded competitive integrated employment programs for workers with disabilities — including paid internships — and found that service providers used only 60% of the funds allocated in the 2021-2022 fiscal year. And that was \u003ca href=\"https://abgt.assembly.ca.gov/sites/abgt.assembly.ca.gov/files/Feb%2022%202023%20-%20Asm%20Sub.%201%20Agenda%20-%20DDS%2C%20SCDD%2C%20and%20DOR%202.22.pdf\">the most spent in each of the last five years (PDF)\u003c/a>.\u003c/p>\n\u003cp>The developmental services department gave out $10 million in grants from last year’s budget to boost employment services and is developing another program this year to pay for placing workers with disabilities into competitive employment.\u003c/p>\n\u003cp>“We have to set a new direction for our entire system, where employment is the expectation for everyone,” said Brian Winfield, its director of programs.\u003c/p>\n\u003cp>But many worry that when workshops go away, there won’t be enough job placement services to go around. The disability services system is underfunded and understaffed, said Barry Jardini, director of the California Disability Services Association.\u003c/p>\n\u003cp>“A lot of the challenge is around whether or not we have the policies in place in California today to make it possible on a broad scale to provide the intensive (worker) supports and job discovery, job exploration,” Jardini said. “Right now all of this policy change is being overlaid on a very stressed system.”\u003c/p>\n\u003ch2>The first workshops\u003c/h2>\n\u003cp>There also is a lack of data. The state tracks the kinds of employment services these workers get, but not the kinds of jobs, so it’s unclear where people exiting workshops are landing.\u003c/p>\n\u003cp>Paying people with disabilities less than the minimum wage is legal because of a New Deal-era section of federal labor law called “14c,” designed to help wounded World War I veterans get limited access to jobs.\u003c/p>\n\u003cp>Employers registered with the federal government to hire these workers at a fraction of the pay of other workers. The employers assessed their productivity every six months, comparing them to non-disabled workers making market wages.\u003c/p>\n\u003cp>Now the vast majority of 14c employers in California are vocational rehabilitation providers — job training services for people who have intellectual or developmental disabilities, including autism, Down syndrome and cerebral palsy.\u003c/p>\n\u003cp>Californians with disabilities have a constitutional right to services that allow them to live as independently as possible. If they seek employment help, state regional disabilities centers can refer them to 14c programs or to other employment options.\u003c/p>\n\u003cp>Employers in 14c programs can pay workers less than not only the California minimum wage, but also the federal $7.25-an-hour minimum wage, in two types of settings: At congregate, factory-like worksites sometimes called “sheltered workshops,” or in small work groups that are assisted by a job coach. In the groups, three or four workers split a single minimum-wage position, typically mopping floors or stocking shelves at a local business.\u003c/p>\n\u003cp>Subminimum wage positions are most suitable for those with the most significant disabilities, program operators said.\u003c/p>\n\u003ch2>A national shift\u003c/h2>\n\u003cp>As part of the national shift toward integrating people with disabilities into communities, the U.S. Commission on Civil Rights in 2020 \u003ca href=\"https://www.usccr.gov/files/2020/2020-09-17-Subminimum-Wages-Report.pdf\">called for subminimum wage programs to end (PDF)\u003c/a>, saying the programs trap people in “exploitative and discriminatory” situations.\u003c/p>\n\u003cp>Michael Pugliese, who has autism, worked in a video rental store after high school but lost that job when the industry crashed.\u003c/p>\n\u003cp>When he was 21, a state regional center referred him to a sheltered workshop in the Sacramento area for employment training. At the workshop Pugliese assembled electronics alongside other workers with disabilities, cordoned off from other workers.\u003c/p>\n\u003cp>The job paid him about $225 a month, included little useful training for other work and made him feel like “a cog in a machine,” said Pugliese, now 37.\u003c/p>\n\u003cp>“I didn’t know at that point in time that was nickels and dimes,” he said of his pay, compared to co-workers’.\u003c/p>\u003c/div>",
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"content": "‘When you start from the premise that there are going to be people that you can’t find a job for, then that is going to be a self-fulfilling prophecy.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>A dozen states besides California have passed laws banning below-minimum-wage programs. Also a federal rule in effect this year requires disability services to be more integrated with the community.\u003c/p>\n\u003cp>These kinds of jobs have already declined in California. In 2009, as many as 16,000 people with disabilities worked in the workshops or the small groups that split a minimum wage. By 2021, employment in those programs had fallen to about 6,000, state officials said.\u003c/p>\n\u003cp>Now that the phaseout deadline approaches, it’s up to the state and a network of disability service providers to help transition workshop employees into other jobs, if they want them.\u003c/p>\n\u003ch2>Fitting each worker’s need\u003c/h2>\n\u003cp>The gold standard, according to the independent State Council on Developmental Disabilities, would be a job placement and coaching service that’s highly tailored to fit each worker’s needs and abilities.\u003c/p>\n\u003cp>Carole Watilo directs the Sacramento-area Progressive Employment Concepts, which provides job coaching and placement.\u003c/p>\n\u003cp>She said a client who uses a wheelchair and communicates using a tablet device handles code enforcement for a small police department in Sacramento County, including spotting such violations as people parking illegally in disabled spaces. A support worker drives him.\u003c/p>\n\u003cp>Progressive initially placed him there as a volunteer, she said, then it received grants to cover his work. She hopes to find him ongoing paid employment.\u003c/p>\n\u003cp>“When you start from the premise that there are going to be people that you can’t find a job for, then that is going to be a self-fulfilling prophecy,” Watilo said.\u003c/p>\n\u003cp>Pugliese also sought job services at Progressive after leaving the workshop. When he told them of his affinity for pets, a job coach found him a state-funded internship grooming dogs. They tried him at several pet groomers until they found a good fit.\u003c/p>\n\u003cp>He’s on a health leave now but normally earns $16 an hour.\u003c/p>\n\u003cp>“I’ve had more general impact on the actual shop than ever before,” he said. “My actual work effort was reflected in the shop’s progress. I mattered as a person and as an employee.”\u003c/p>\n\u003cfigure id=\"attachment_11949071\" class=\"wp-caption aligncenter\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/news/2023/05/10/californians-with-developmental-disabilities-must-now-be-paid-minimum-wage-can-the-state-find-enough-good-jobs/042723-visitability-calmatters-skn-img_3760-04-cm/\" rel=\"attachment wp-att-11949071\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11949071\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM.jpg\" alt=\"we look over the shoulder of an older woman with white hair as she works through a stack of plastic envelopes in front of her\" width=\"1568\" height=\"1045\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM.jpg 1568w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/042723-VisitAbility-CalMatters-SKN-IMG_3760-04-CM-1536x1024.jpg 1536w\" sizes=\"(max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">VistAbility worker Jennifer Painter assembles mirrors for bicycle helmets into plastic packaging. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>What’s realistic?\u003c/h2>\n\u003cp>Chris Bowers, Cory’s father, said he doubts his son will work the same jobs as everybody else. That’s just the reality of the job market, he said.\u003c/p>\n\u003cp>In high school Cory Bowers went to classes with a group of other students with disabilities. After they graduated, Goodwill of Orange County placed him, with two or three others, at a clothing company’s warehouse and later at a local retailer. They hung clothes on racks, splitting one minimum-wage job.\u003c/p>\n\u003cp>Corey took home $2.50 an hour, his father said. He loved his job and came home feeling accomplished and eager to spend his paycheck, taking his parents out to dinner, Chris Bowers said.\u003c/p>\n\u003cp>Goodwill of Orange County closed its subminimum wage program during the pandemic and never reopened it.\u003c/p>\n\u003cp>Before the pandemic, the nonprofit had placed as many as 700 workers in its stores or in local businesses, paying them less than minimum wage. Rick Adams, its vice president of mission services, said the “vast majority” of businesses were not interested in taking the workers back at higher wages.\u003c/p>\n\u003cp>Now about 100 people with disabilities work for Goodwill stores and 50 have jobs in the community, he said.\u003c/p>\n\u003cp>Instead of working, Cory now participates in a day services program that drives him and others to visit the library, coffee shops and stores. Chris Bowers described it as “glorified babysitting” and says his son is “different mentally.”\u003c/p>\n\u003cp>To Chris Bowers it was never about the money; his son lives with him and receives Social Security benefits.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“As parents, especially in my circle, we sure didn’t care what our kids made,” he said. “We just wanted our kids to be out in a job site, learning.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"slug": "disability-groups-claim-californias-assisted-suicide-law-discriminates-against-them",
"title": "Disability Groups Claim California's Assisted Suicide Law Discriminates Against Them",
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"headTitle": "Disability Groups Claim California’s Assisted Suicide Law Discriminates Against Them | KQED",
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"content": "\u003cp>A group of people with disabilities is suing to upend California’s assisted suicide law, saying the bias they faced trying to get health care during the pandemic shows the system is too quick to offer death as an appropriate outcome.\u003c/p>\n\u003cp>The \u003ca href=\"https://endassistedsuicide.org/wp-content/uploads/2023/04/Complaint_Accessible.pdf\">lawsuit, filed against state officials and agencies (PDF)\u003c/a>, argues that California’s 7-year-old law that allows terminally ill people to choose to get lethal drugs to end their life — the \u003ca href=\"https://www.cdph.ca.gov/programs/chsi/pages/end-of-life-option-act-.aspx#:~:text=The%20End%20of%20Life%20Option,of%20Public%20Health%20(CDPH).\">End of Life Option Act\u003c/a> — puts disabled people at greater risk of being coerced into seeking assisted suicide.\u003c/p>\n\u003cp>The lawsuit says people with disabilities often face a denial of the medical care they need and, as a result, may be quick to seek assisted suicide as an option.\u003c/p>\n\u003cp>Ingrid Tischer, who is one of the plaintiffs in the lawsuit, says she experienced that.\u003c/p>\n\u003cp>Tischer, who lives with a form of muscular dystrophy, has been around doctors her entire life. In 2021, in the middle of the pandemic, Tischer was hospitalized for pneumonia. When she asked for therapy to regain her strength, the doctor said she didn’t qualify.\u003c/p>\n\u003cp>“He kind of looked at me and said, ‘Well, I mean, look at you, there’s nothing we can do for you. And you’ve known this is coming for a long time. So why are you surprised?'” Tischer says.\u003c/p>\n\u003cp>Tischer, who was 55 then, says she was devastated. She thought she was facing the end of her life. “For me, it was a very solid gut punch,” she says.\u003c/p>\n\u003cp>If a doctor had told her she should apply for California’s assisted suicide law, she says she might well have said yes.[pullquote align=\"right\" size=\"medium\" citation=\"Michael Bien, constitutional and civil rights attorney\"]‘Is it really a choice when society makes it very difficult to access home health care support?’[/pullquote]No doctor ever suggested that to Tischer. The lawsuit doesn’t mention any cases of that kind of coercion.\u003c/p>\n\u003cp>Tischer, instead, got another doctor, who gave her a different diagnosis. She left the hospital and recovered.\u003c/p>\n\u003cp>Tischer and the other plaintiffs raise fears of a subtle kind of discrimination — what Michael Bien, the lawyer who filed the challenge, calls “steering.” Bien says people who have difficulty getting the care they need may feel compelled, instead, to see assisted suicide as their best option.\u003c/p>\n\u003cp>The End of Life Option Act requires people to make a clear choice to end their lives. But, Bien argues, the choice of people with disabilities gets clouded by whether they get the medical care and support that helps them live.\u003c/p>\n\u003cp>“Is it really a choice,” Bien asks, “when society makes it very difficult to access home health care support?”\u003c/p>\n\u003cp>For many people in California with disabilities, there are long waits — often months long — to get a direct support professional to provide the in-home support that allows them to live independently. California is known to have a generous program. But a \u003ca href=\"https://www.auditor.ca.gov/pdfs/reports/2020-109.pdf\">report by the state auditor (PDF)\u003c/a> in 2021 found that even when people get into the In-Home Supportive Services Program, some 40,000 a month don’t get all the care they require. For someone with quadriplegia, getting an attendant to help them get in and out of bed may determine whether they can go to school or work, and stay out of a nursing home.\u003c/p>\n\u003cp>Lonnie VanHook, another individual plaintiff in the lawsuit, has quadriplegia and needs round-the-clock assistance, including people who can move him in his bed or wheelchair to prevent him from getting painful bedsores. But when he couldn’t get enough hours of care, he became depressed and considered assisted suicide.\u003c/p>\n\u003cp>Jules Steimnitz, a rehabilitation doctor, calls this “attendant deficiency diagnosis, that you can’t get attendants.” Steimnitz, who first treated VanHook more than three decades ago, kept in touch and helped talk him through that desperation. “This is his main problem. This is what’s causing his depression. He doesn’t need suicide. He needs attendants.”\u003c/p>\n\u003cp>“Over the years, it has been a continuous uphill battle” to get that assistance, VanHook told NPR. “It’s a mental drain. It’s debilitating.”\u003c/p>\n\u003cp>The lawsuit says VanHook, as a Black man with little income, is at an increased risk because of racial disparities in health care.\u003c/p>\n\u003cp>The limits of health care systems became more clear early in the pandemic. When health care providers feared possible shortages of ventilators and other treatments, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8957387/\">states issued guidelines\u003c/a> — called “crisis standards of care” — that sometimes gave doctors and hospitals permission to put disabled and elderly people at the back of the line if care got scarce.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The U.S. Department of Health and Human Services stepped in and stopped it.\u003c/p>\n\u003cp>Among several states that agreed to rewrite their triage guidelines: \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/06/26/ocr-resolves-complaint-tennessee-after-it-revises-its-triage-plans-protect-against-disability.html\">Tennessee\u003c/a> revised rules that let care be denied to people who already use a ventilator, those with advanced neuromuscular conditions like ALS, and some people with dementia and traumatic brain injuries. Officials in \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/04/16/ocr-resolves-civil-rights-complaint-against-pennsylvania-after-it-revises-its-pandemic-health-care.html\">Pennsylvania\u003c/a> changed standards that told hospitals it was OK to cut off care to some people with chronic lung disease or cancer. \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/04/08/ocr-reaches-early-case-resolution-alabama-after-it-removes-discriminatory-ventilator-triaging.html\">Alabama\u003c/a> rewrote rules that allowed the denial of ventilators to people with “moderate to severe dementia.”\u003c/p>\n\u003cp>People who work with California’s assisted suicide law acknowledge that disabled people often struggle to get adequate medical care, but they say the state’s end-of-life law is set up to avoid precisely that kind of discrimination.\u003c/p>\n\u003cp>“Having a disability would not qualify someone for aid-in-dying,” says Nathan Fairman, a psychiatrist and palliative care doctor who oversees cases at UC Davis Health in Sacramento. “Someone who’s disabled and has end-stage cancer would potentially qualify. And they would have to step through all of the safeguards that are set out in the law.”\u003c/p>\n\u003cp>Two doctors, he notes, need to confirm that someone is terminally ill and mentally competent to choose to die. Health care systems like his, Fairman says, add psychological and other evaluations that go beyond the state law to further protect against abuse.\u003c/p>\n\u003ch2>Oregon went first and other states followed\u003c/h2>\n\u003cp>The lawsuit was filed by four disability rights groups — United Spinal Association, which advocates for veterans and others with spinal cord injuries; Not Dead Yet and the Institute for Patients’ Rights, two groups that oppose assisted suicide laws; and CALIF, a Los Angeles nonprofit run by people with disabilities.\u003c/p>\n\u003cp>A spokesperson for the California Department of Public Health, the agency that keeps the statistics on who uses the assisted suicide law, said it “does not comment on litigation.”\u003c/p>\n\u003cp>Oregon was the first state to implement a right-to-die law, in 1997. Washington state was next, in 2009. Since then, such laws have spread quickly. Now, 10 states and the District of Columbia allow assisted suicide for terminally ill people who are competent to make that choice.\u003c/p>\n\u003cp>In California, between 2016, when the law took effect, and the end of 2021, 3,766 people got prescriptions for the medications and 64.3% of them are known to have taken those pills, according to the most recent \u003ca href=\"https://www.cdph.ca.gov/Programs/CHSI/CDPH%20Document%20Library/CDPH_End_of_Life%20_Option_Act_Report_2021_FINAL.pdf\">annual report (PDF)\u003c/a> by the California Department of Public Health.\u003c/p>\n\u003cp>The lawsuit, filed in the U.S. District Court for the Central District of California, argues that the state’s assisted suicide law violates due process protections guaranteed by the U.S. Constitution and violates the anti-discrimination provisions of the Americans with Disabilities Act.\u003c/p>\n\u003ch2>Some want to use the law to end their lives — but can’t\u003c/h2>\n\u003cp>But that’s not the only challenge to the law under the ADA. Dr. Lonny Shavelson, a proponent of assisted suicide laws, recently sued California on behalf of \u003ca href=\"https://www.bloomberg.com/news/features/2021-12-17/death-with-dignity-right-to-die-laws-leave-patients-with-impossible-choice\">disabled people who want to use the law to end their lives but can’t\u003c/a>.\u003c/p>\n\u003cp>The End of Life Option Act says that a person who gets lethal medications must be able to take those pills themselves. That’s a common safeguard in assisted suicide laws, to prevent coercion by family members or others.\u003c/p>\n\u003cp>But Shavelson, a co-founder of the American Clinicians Academy on Medical Aid in Dying, says it ends up discriminating against some of the people who most clearly want to use the law — but can’t take the pills themselves because of the progression of their disease, such as people with ALS and Parkinson’s.\u003c/p>\n\u003cp>They are denied “the same access to the law that able-bodied people receive because they’re unable to self-administer the medications, ” he says. “We’ve denied them assistance to a legal medical procedure.”\u003c/p>\n\u003cp>Shavelson’s lawsuit was rejected by one U.S. District Court in California and is now on appeal.\u003c/p>\n\u003cp>Today, Ingrid Tischer is working again, helping nonprofits do fundraising. She looks back at the time two years ago when she was hospitalized, having difficulty breathing and ready to give up. She says she was driven then by fear — of dying or moving to a nursing home and of a “mass of misplaced guilt” that she’d become a burden to her husband. “I just wanted out,” she says. “I don’t think I was thinking very clearly.”\u003c/p>\n\u003cp>But Tischer had resources that turned her around — that supportive spouse, a solid family income, a house, reliable health insurance and her long personal experience navigating the medical system.\u003c/p>\n\u003cp>“There are many people in this world who are a lot more vulnerable than I,” she says, and — as a result — more likely, she believes, to seek assisted suicide.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"excerpt": "They say the bias they faced trying to get health care during the pandemic shows the system is too quick to offer death as an appropriate outcome.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A group of people with disabilities is suing to upend California’s assisted suicide law, saying the bias they faced trying to get health care during the pandemic shows the system is too quick to offer death as an appropriate outcome.\u003c/p>\n\u003cp>The \u003ca href=\"https://endassistedsuicide.org/wp-content/uploads/2023/04/Complaint_Accessible.pdf\">lawsuit, filed against state officials and agencies (PDF)\u003c/a>, argues that California’s 7-year-old law that allows terminally ill people to choose to get lethal drugs to end their life — the \u003ca href=\"https://www.cdph.ca.gov/programs/chsi/pages/end-of-life-option-act-.aspx#:~:text=The%20End%20of%20Life%20Option,of%20Public%20Health%20(CDPH).\">End of Life Option Act\u003c/a> — puts disabled people at greater risk of being coerced into seeking assisted suicide.\u003c/p>\n\u003cp>The lawsuit says people with disabilities often face a denial of the medical care they need and, as a result, may be quick to seek assisted suicide as an option.\u003c/p>\n\u003cp>Ingrid Tischer, who is one of the plaintiffs in the lawsuit, says she experienced that.\u003c/p>\n\u003cp>Tischer, who lives with a form of muscular dystrophy, has been around doctors her entire life. In 2021, in the middle of the pandemic, Tischer was hospitalized for pneumonia. When she asked for therapy to regain her strength, the doctor said she didn’t qualify.\u003c/p>\n\u003cp>“He kind of looked at me and said, ‘Well, I mean, look at you, there’s nothing we can do for you. And you’ve known this is coming for a long time. So why are you surprised?'” Tischer says.\u003c/p>\n\u003cp>Tischer, who was 55 then, says she was devastated. She thought she was facing the end of her life. “For me, it was a very solid gut punch,” she says.\u003c/p>\n\u003cp>If a doctor had told her she should apply for California’s assisted suicide law, she says she might well have said yes.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>No doctor ever suggested that to Tischer. The lawsuit doesn’t mention any cases of that kind of coercion.\u003c/p>\n\u003cp>Tischer, instead, got another doctor, who gave her a different diagnosis. She left the hospital and recovered.\u003c/p>\n\u003cp>Tischer and the other plaintiffs raise fears of a subtle kind of discrimination — what Michael Bien, the lawyer who filed the challenge, calls “steering.” Bien says people who have difficulty getting the care they need may feel compelled, instead, to see assisted suicide as their best option.\u003c/p>\n\u003cp>The End of Life Option Act requires people to make a clear choice to end their lives. But, Bien argues, the choice of people with disabilities gets clouded by whether they get the medical care and support that helps them live.\u003c/p>\n\u003cp>“Is it really a choice,” Bien asks, “when society makes it very difficult to access home health care support?”\u003c/p>\n\u003cp>For many people in California with disabilities, there are long waits — often months long — to get a direct support professional to provide the in-home support that allows them to live independently. California is known to have a generous program. But a \u003ca href=\"https://www.auditor.ca.gov/pdfs/reports/2020-109.pdf\">report by the state auditor (PDF)\u003c/a> in 2021 found that even when people get into the In-Home Supportive Services Program, some 40,000 a month don’t get all the care they require. For someone with quadriplegia, getting an attendant to help them get in and out of bed may determine whether they can go to school or work, and stay out of a nursing home.\u003c/p>\n\u003cp>Lonnie VanHook, another individual plaintiff in the lawsuit, has quadriplegia and needs round-the-clock assistance, including people who can move him in his bed or wheelchair to prevent him from getting painful bedsores. But when he couldn’t get enough hours of care, he became depressed and considered assisted suicide.\u003c/p>\n\u003cp>Jules Steimnitz, a rehabilitation doctor, calls this “attendant deficiency diagnosis, that you can’t get attendants.” Steimnitz, who first treated VanHook more than three decades ago, kept in touch and helped talk him through that desperation. “This is his main problem. This is what’s causing his depression. He doesn’t need suicide. He needs attendants.”\u003c/p>\n\u003cp>“Over the years, it has been a continuous uphill battle” to get that assistance, VanHook told NPR. “It’s a mental drain. It’s debilitating.”\u003c/p>\n\u003cp>The lawsuit says VanHook, as a Black man with little income, is at an increased risk because of racial disparities in health care.\u003c/p>\n\u003cp>The limits of health care systems became more clear early in the pandemic. When health care providers feared possible shortages of ventilators and other treatments, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8957387/\">states issued guidelines\u003c/a> — called “crisis standards of care” — that sometimes gave doctors and hospitals permission to put disabled and elderly people at the back of the line if care got scarce.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The U.S. Department of Health and Human Services stepped in and stopped it.\u003c/p>\n\u003cp>Among several states that agreed to rewrite their triage guidelines: \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/06/26/ocr-resolves-complaint-tennessee-after-it-revises-its-triage-plans-protect-against-disability.html\">Tennessee\u003c/a> revised rules that let care be denied to people who already use a ventilator, those with advanced neuromuscular conditions like ALS, and some people with dementia and traumatic brain injuries. Officials in \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/04/16/ocr-resolves-civil-rights-complaint-against-pennsylvania-after-it-revises-its-pandemic-health-care.html\">Pennsylvania\u003c/a> changed standards that told hospitals it was OK to cut off care to some people with chronic lung disease or cancer. \u003ca href=\"https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https:/www.hhs.gov/about/news/2020/04/08/ocr-reaches-early-case-resolution-alabama-after-it-removes-discriminatory-ventilator-triaging.html\">Alabama\u003c/a> rewrote rules that allowed the denial of ventilators to people with “moderate to severe dementia.”\u003c/p>\n\u003cp>People who work with California’s assisted suicide law acknowledge that disabled people often struggle to get adequate medical care, but they say the state’s end-of-life law is set up to avoid precisely that kind of discrimination.\u003c/p>\n\u003cp>“Having a disability would not qualify someone for aid-in-dying,” says Nathan Fairman, a psychiatrist and palliative care doctor who oversees cases at UC Davis Health in Sacramento. “Someone who’s disabled and has end-stage cancer would potentially qualify. And they would have to step through all of the safeguards that are set out in the law.”\u003c/p>\n\u003cp>Two doctors, he notes, need to confirm that someone is terminally ill and mentally competent to choose to die. Health care systems like his, Fairman says, add psychological and other evaluations that go beyond the state law to further protect against abuse.\u003c/p>\n\u003ch2>Oregon went first and other states followed\u003c/h2>\n\u003cp>The lawsuit was filed by four disability rights groups — United Spinal Association, which advocates for veterans and others with spinal cord injuries; Not Dead Yet and the Institute for Patients’ Rights, two groups that oppose assisted suicide laws; and CALIF, a Los Angeles nonprofit run by people with disabilities.\u003c/p>\n\u003cp>A spokesperson for the California Department of Public Health, the agency that keeps the statistics on who uses the assisted suicide law, said it “does not comment on litigation.”\u003c/p>\n\u003cp>Oregon was the first state to implement a right-to-die law, in 1997. Washington state was next, in 2009. Since then, such laws have spread quickly. Now, 10 states and the District of Columbia allow assisted suicide for terminally ill people who are competent to make that choice.\u003c/p>\n\u003cp>In California, between 2016, when the law took effect, and the end of 2021, 3,766 people got prescriptions for the medications and 64.3% of them are known to have taken those pills, according to the most recent \u003ca href=\"https://www.cdph.ca.gov/Programs/CHSI/CDPH%20Document%20Library/CDPH_End_of_Life%20_Option_Act_Report_2021_FINAL.pdf\">annual report (PDF)\u003c/a> by the California Department of Public Health.\u003c/p>\n\u003cp>The lawsuit, filed in the U.S. District Court for the Central District of California, argues that the state’s assisted suicide law violates due process protections guaranteed by the U.S. Constitution and violates the anti-discrimination provisions of the Americans with Disabilities Act.\u003c/p>\n\u003ch2>Some want to use the law to end their lives — but can’t\u003c/h2>\n\u003cp>But that’s not the only challenge to the law under the ADA. Dr. Lonny Shavelson, a proponent of assisted suicide laws, recently sued California on behalf of \u003ca href=\"https://www.bloomberg.com/news/features/2021-12-17/death-with-dignity-right-to-die-laws-leave-patients-with-impossible-choice\">disabled people who want to use the law to end their lives but can’t\u003c/a>.\u003c/p>\n\u003cp>The End of Life Option Act says that a person who gets lethal medications must be able to take those pills themselves. That’s a common safeguard in assisted suicide laws, to prevent coercion by family members or others.\u003c/p>\n\u003cp>But Shavelson, a co-founder of the American Clinicians Academy on Medical Aid in Dying, says it ends up discriminating against some of the people who most clearly want to use the law — but can’t take the pills themselves because of the progression of their disease, such as people with ALS and Parkinson’s.\u003c/p>\n\u003cp>They are denied “the same access to the law that able-bodied people receive because they’re unable to self-administer the medications, ” he says. “We’ve denied them assistance to a legal medical procedure.”\u003c/p>\n\u003cp>Shavelson’s lawsuit was rejected by one U.S. District Court in California and is now on appeal.\u003c/p>\n\u003cp>Today, Ingrid Tischer is working again, helping nonprofits do fundraising. She looks back at the time two years ago when she was hospitalized, having difficulty breathing and ready to give up. She says she was driven then by fear — of dying or moving to a nursing home and of a “mass of misplaced guilt” that she’d become a burden to her husband. “I just wanted out,” she says. “I don’t think I was thinking very clearly.”\u003c/p>\n\u003cp>But Tischer had resources that turned her around — that supportive spouse, a solid family income, a house, reliable health insurance and her long personal experience navigating the medical system.\u003c/p>\n\u003cp>“There are many people in this world who are a lot more vulnerable than I,” she says, and — as a result — more likely, she believes, to seek assisted suicide.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"slug": "hes-filed-over-2000-disability-lawsuits-in-california-his-latest-may-mean-more-cases-nationwide",
"title": "He's Filed Over 2,000 Disability Lawsuits in California. His Latest May Mean More Cases Nationwide",
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"headTitle": "He’s Filed Over 2,000 Disability Lawsuits in California. His Latest May Mean More Cases Nationwide | KQED",
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"content": "\u003cp>It all started with a parking spot.\u003c/p>\n\u003cp>On a breezy afternoon in September 2017, Chris Langer couldn’t find one that would accommodate his van and the ramp he uses for his wheelchair behind a San Diego lobster shop.\u003c/p>\n\u003cp>What transpired next has been the subject of arguments before two federal courts and opened a wide door to more federal disability lawsuits in California, home to more of these lawsuits in the last litigious decade than any other state.\u003c/p>\n\u003cp>Four months after that fall day, Langer filed a disability access lawsuit in federal court against the lobster shop, a smoke shop in the same building and the building’s owners, Milan and Diana Kiser, claiming a violation of his rights.\u003c/p>\n\u003cp>Langer has filed more than 2,000 claims like those over the past decade or so. For the last two years, his case against the Kisers was headed to defeat, with a federal judge ruling against him and questioning his motivation.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But last month, Langer prevailed before a three-judge panel on the 9th U.S. Circuit Court of Appeals. Attorneys who argue federal disability cases say that victory, which itself is being appealed, could open the floodgates to more federal disability rights lawsuits after a brief slowdown last year.\u003c/p>\n\u003cp>If Langer wins the next round, attorneys who represent businesses sued in disability cases worry that the case would set a precedent for a broader claim of “standing” to sue among plaintiffs in California disabled access lawsuits.\u003c/p>\n\u003cp>Typically, these cases are settled — out of tens of thousands of federal disability rights lawsuits filed nationally, only a couple dozen have ever gone to trial, according to a review of federal appellate court decisions by Texas attorney Richard Hunt, who defends businesses sued for disability rights claims.\u003c/p>\n\u003cp>In most other states, any awards won in federal disability rights cases can only be used to pay legal fees.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Dennis Price, attorney for Chris Langer\"]‘What my clients are doing is basic code enforcement, and that’s what California law specifically encourages.’[/pullquote]\u003c/p>\n\u003cp>California law allows for extra compensation that can benefit plaintiffs in those cases. The \u003ca href=\"https://leginfo.legislature.ca.gov/faces/codes_displaySection.xhtml?lawCode=CIV§ionNum=51\">Unruh Civil Rights Act\u003c/a> provides an additional award to plaintiffs themselves, which begins at a minimum of $4,000.\u003c/p>\n\u003cp>And that’s a major reason why California has had \u003ca href=\"https://www.adatitleiii.com/2023/02/ada-title-iii-federal-lawsuits-numbers-are-down-but-likely-to-rebound-in-2023/\">more than 30,000 federal disability rights lawsuits\u003c/a> in the last decade, far outpacing the rest of the country.\u003c/p>\n\u003cp>Langer declined to be interviewed, according to his attorney, who said people like Langer are forcing businesses to comply with a law they should already be following.\u003c/p>\n\u003cp>“There’s no three-letter agency that’s going around and enforcing these laws,” said Langer’s attorney, Dennis Price. “What my clients are doing is basic code enforcement, and that’s what California law specifically encourages.”\u003c/p>\n\u003cp>The Americans with Disabilities Act is one of a few federal laws that operate by turning their enforcement over to the people, with \u003ca href=\"https://www.justice.gov/crt/disability-rights-cases\">occasional interventions\u003c/a> by the U.S. Department of Justice.\u003c/p>\n\u003cp>Among the courts, the academics who study this issue and the lawyers who argue the cases, there are three interpretations of the actions of Langer, who has acknowledged in court proceedings that he is a “serial litigator.”\u003c/p>\n\u003cp>In one, serial litigants are warriors for disability access, literally opening doors for other people by identifying obstacles and suing to fix them.\u003c/p>\n\u003cp>In the second, they are simply pawns of avaricious law firms who have created a cottage industry out of disability rights lawsuits. According to filings in a tax case, \u003ca href=\"https://www.sacbee.com/news/local/article269332397.html\">one serial litigant\u003c/a> in Sacramento accumulated more than $1 million in settlements in 2014 alone. The firm representing him kept more than half the money and he kept the rest.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"U.S. District Court Judge Roger Benitez\"]‘On the day he filed this lawsuit, he also filed six other lawsuits. Yet, [Langer] was unfamiliar with those suits as well as the businesses involved.’[/pullquote]The third perspective, and one evidently held by the original judge deciding Langer’s case, is the least generous, handed down when Langer attempted to exclude his history as a serial litigator from trial. Several times in his April 5, 2021, opinion, U.S. District Court Judge Robert Benitez questioned Langer’s credibility.\u003c/p>\n\u003cp>“The court finds it doubtful that [Langer] would frequently travel to the property to purchase lobster, as he testified,” Benitez wrote. “This is bolstered by the fact [Langer] has filed previous lawsuits in which he admits he never intended to return to the premises.\u003c/p>\n\u003cp>“On the day he filed this lawsuit, he also filed six other lawsuits. Yet, [Langer] was unfamiliar with those suits as well as the businesses involved.”\u003c/p>\n\u003cfigure id=\"attachment_11942995\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11942995\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/03/CalMattersIngest02-800x533.jpg\" alt=\"A woman with short black hair and a baseball cap walks by a business with a blue accessibility sign displayed next to a ramp.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02.jpg 1200w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">An accessibility sign at the entrance of a business in Chinatown, San Francisco, on Feb. 18, 2023. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>Thousands of disability claims every year\u003c/h2>\n\u003cp>The Americans with Disabilities Act was signed into law in 1990, but the volume of lawsuits picked up in 2013, according to Seyfarth Shaw, the law firm that \u003ca href=\"https://www.adatitleiii.com/2023/02/ada-title-iii-federal-lawsuits-numbers-are-down-but-likely-to-rebound-in-2023/\">tracks federal disability lawsuits\u003c/a>. Since then, 33,100 claims were filed in federal courts in California. New York had 15,427, and Florida had 14,296 in the last decade. The next seven states barely topped 1,000 cases combined.\u003c/p>\n\u003cp>That initial ruling in the Langer case, coupled with high-profile moves by liberal district attorneys in San Francisco and Los Angeles against a firm known for representing serial filers, appeared to chill the number of disability claims filed against California businesses last year, according to data collected by Seyfarth Shaw. Last year, 2,519 cases were filed in California.\u003c/p>\n\u003cp>In one of the most publicized California cases, an attorney who used a wheelchair \u003ca href=\"https://www.sandiegouniontribune.com/sdut-exclusive-disabled-access-attorney-to-be-2012sep12-story.html\">filed 67 lawsuits against businesses\u003c/a> in 2005 in the tiny San Diego County mountain town of Julian, home of the Apple Days Festival, alleging that he could not access them. The attorney was later disbarred, in part because he pleaded no contest to filing federal disability lawsuits on behalf of a disabled client who had no idea the cases had been filed.\u003c/p>\n\u003cp>But businesses in the town of Julian did indeed improve their disability access. In the words of a \u003ca href=\"https://www.sandiegouniontribune.com/sdut-julian-working-toward-more-access-for-disabled-2007jun11-story.html\">\u003cem>North County Times\u003c/em> story from 2007\u003c/a>: “wider doors, lower counters, repaved parking lots, more disabled parking and signs, signs, signs.”[aside postID=news_11934545 hero='https://ww2.kqed.org/app/uploads/sites/10/2023/12/Featured-photo-horizontal-Alice-Wong-1020x574.png']The question in many of these cases comes down to the legal concept of “standing,” which asks whether the plaintiffs have actually suffered a consequence because of their disability, and whether they ever intended to return to the place where they encountered a problem. Benitez ruled that Langer did have standing, but his rights weren’t violated, in part because the parking spot in question wasn’t supposed to be publicly accessible.\u003c/p>\n\u003cp>On appeal — and this is the other big reason plaintiffs file so often in California — the standing claim was received much more warmly, as it has been in other disability cases filed in the 9th U.S. Circuit Court of Appeals. “The attempted use of past litigation to prevent a litigant from pursuing a valid claim in federal court warrants our most careful scrutiny,” the court, known as one of the country’s most liberal federal appeals courts, had written in a 2008 opinion cited in the Langer appellate decision.\u003c/p>\n\u003cp>Last month, Langer’s arguments won over two judges on a three-judge panel. They reversed the Benitez decision and found that the lobster shop’s penchant for letting customers park in the tenant space made it, effectively, a public lot.\u003c/p>\n\u003cp>“A business cannot offer parking to customers without disabilities while not offering that same benefit to customers with disabilities,” the two judges wrote. “That discrimination goes to the heart of the ADA.”\u003c/p>\n\u003cp>The Kisers have asked for a rehearing before all nine appellate court judges.\u003c/p>\n\u003ch2>A service for disabled Californians\u003c/h2>\n\u003cp>Serial filers are the targets of misdirected anger, said Evelyn Clark, a Washington, D.C., attorney who uses a wheelchair and authored \u003ca href=\"https://heinonline.org/HOL/LandingPage?handle=hein.journals/walee26&div=22&id=&page=\">a much-cited paper\u003c/a> in law school on serial litigants.\u003c/p>\n\u003cp>“Something that’s really small for you that just looks like, oh, it’s just one little step, could be a total barrier for someone like me trying to get in,” Clark said. “But nobody’s going to be 100% compliant with every tiny regulation under the ADA. So I can understand the frustration of business owners.\u003c/p>\n\u003cp>“But I’ve heard people in California talk about how they go out in a wheelchair and it’s almost kind of a reverse discrimination, where people just assume you’re there to sue them,” Clark said.\u003c/p>\n\u003cp>On the defense’s side, there’s another perception: that these lawsuits find the poorest store owners least able to defend themselves in a country where they may not speak the language or understand the legal system, with offers to settle that just so happen to be a little cheaper than mounting a defense.\u003c/p>\n\u003ch2>Business owners on edge\u003c/h2>\n\u003cp>Business owners with a direct interest in the Langer case are hoping the Kisers get a rehearing before the full appeals court. Late last month, they filed a friend-of-the-court brief arguing against the decision by the three-judge panel.\u003c/p>\n\u003cp>“Make no mistake, these ADA lawsuits are not about promoting the ideals of the ADA,” they wrote, “but rather, they are about the illegitimate transfer of wealth from historically marginalized communities and into the pockets of ADA plaintiff’s lawyers.”\u003c/p>\n\u003cp>It was a federal disability lawsuit that led Moji Saniefar, one of the authors of that brief, from white-collar securities litigation to defending businesses from federal disability rights lawsuits. Like an action movie sequel, this time it was personal: A serial litigant sued Saniefar’s father’s restaurant.\u003c/p>\n\u003cp>Reza Saniefar was the owner of Zlfred’s, a well-loved Fresno cafe that closed during the coronavirus pandemic. An Iranian immigrant who fled the revolution in 1979, Reza Saniefar operated a small, family business. Locals evidently miss his restaurant enough to \u003ca href=\"http://whatmomscooking.com/2021/09/27/zlfreds/\">post and share copycat recipes\u003c/a>.\u003c/p>\n\u003cp>The cafe was named Zlfred’s because its former name was shared with another restaurant, called Alfred’s. When the other Alfred’s sued, Saniefar said, the previous owner simply stuck a Z where the A was. Thus, Zlfred’s.\u003c/p>\n\u003cp>The Saniefar family adopted the same defiant attitude when the restaurant was sued over disability access in 2014. Moji was their attorney. They won, and then went on the offensive, taking the law firm that represented the plaintiff to court, claiming they used fraud and deception to coerce small businesses into settling the cases.\u003c/p>\n\u003cp>The firm \u003ca href=\"https://www.abajournal.com/news/article/law-firms-settle-suit-accusing-them-of-civil-rico-conspiracy-to-collect-ada-settlements\">settled the case and shut down\u003c/a>, but it wasn’t the only firm that represents serial litigants.\u003c/p>\n\u003cfigure id=\"attachment_11942993\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11942993\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/03/CalMatterIngest01.jpg\" alt=\"A blue accessibility sign hangs in the window of a building's entrance next to a variety of colorful, stuffed animals on display.\" width=\"2000\" height=\"1334\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-800x534.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1536x1025.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1920x1281.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">An accessibility sign hangs at the entrance of a Chinatown business in San Francisco on Feb. 18, 2023. A recent court ruling could set a new precedent in regards to ADA violations in California. Yet, some believe these complaints are targeting immigrant communities. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>A much larger one, called Potter Handy, was accused by the liberal district attorneys in Los Angeles and San Francisco counties of “bombarding California’s small businesses with abusive boilerplate lawsuits,” and instructing serial litigants to pretend to have encountered barriers at a business they never visited. They further accused Potter Handy of having its clients file fake disability claims that led to settlements.\u003c/p>\n\u003cp>“Each year Potter Handy uses ADA/Unruh lawsuits to shake down hundreds or even thousands of small businesses to pay it cash settlements, regardless of whether the businesses actually violate the ADA,” wrote Los Angeles County District Attorney George Gascón and former San Francisco City and County District Attorney Chesa Boudin in an April 2022 state court filing.\u003c/p>\n\u003cp>They said the lawsuits not only threaten small businesses, but also “unfairly taint the reputation of other innocent disabled consumers.”\u003c/p>\n\u003cp>Potter Handy, which also does business as the Center for Disability Access, did not return calls seeking comment. Neither did Gascón. Boudin and Gascón wrote in their complaint that Potter Handy was particularly active in San Francisco’s Chinatown during the pandemic.\u003c/p>\n\u003cp>“Multiple Chinatown businesses were sued for allegedly having inaccessible outdoor dining tables during the early months of 2021,” they wrote, but “those businesses were open for takeout only during that time and had no dining tables at all — indoor or outdoor.”\u003c/p>\n\u003cp>Potter Handy responded in court that Boudin and Gascón were making the accusations for political reasons. San Francisco Superior Court Judge Curtis Karnow \u003ca href=\"https://www.sfgate.com/news/bayarea/article/Da-s-Lawsuit-Against-Potter-Handy-Law-Firm-17408200.php\">dismissed the case\u003c/a>, and ruled that Potter Handy’s attorneys were covered by California’s “litigation privilege.”\u003c/p>\n\u003ch2 id=\"h-a-client-who-wanted-to-fight\">A client who wanted to fight\u003c/h2>\n\u003cp>In the Langer case, Moji Saniefar is representing a handful of Bay Area merchant associations, including the Chinatown Merchants United Association of San Francisco, who are panicked about the appellate court ruling in Langer’s favor.\u003c/p>\n\u003cp>“Serial ADA plaintiff’s lawyers recognize that the justice gap makes [small businesses] far more likely to settle cases quickly and without prolonged litigation,” according to the Feb. 16 friend-of-the-court brief.\u003c/p>\n\u003cp>Hunt, the Texas attorney who defends businesses in disability rights cases, said it’s unusual for his clients to take a case to court, much less all the way up to federal appeals court.\u003c/p>\n\u003cp>“You have to have a particularly angry, rich, stubborn client to not settle the case,” Hunt said. “I’m looking for angry, rich, stubborn clients. I would love to have some, but so far, when I tell my clients that they can get out of it by settling it for cheaper than the cost of defense, then they’re like, you know, let’s just settle it.”\u003c/p>\n\u003cp>The attorney for the Kisers, whom Langer is suing, said the Legislature needs to step in. He agrees that his clients may fit Hunt’s description.\u003c/p>\n\u003cp>“Mr. Kiser’s perspective is, hey, we did nothing wrong and we don’t think we should have to pay this guy,” said Sam Henein, a San Diego lawyer. “He says if the judge tells me I did something wrong, I guess then I have to pay, but I don’t think I did.”\u003c/p>\n\u003cp>The solution, said Clark, the D.C. attorney, is to amend the ADA’s enforcement mechanism from its current iteration to a “notice and cure” standard, which would give businesses 60 or 90 days to fix the accessibility issue without money changing hands.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"excerpt": "Chris Langer couldn't find a parking spot for his specialized van at a San Diego lobster shop. The lawsuit that followed is a test of how California upholds disability rights.",
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"title": "He's Filed Over 2,000 Disability Lawsuits in California. His Latest May Mean More Cases Nationwide | KQED",
"description": "Chris Langer couldn't find a parking spot for his specialized van at a San Diego lobster shop. The lawsuit that followed is a test of how California upholds disability rights.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>It all started with a parking spot.\u003c/p>\n\u003cp>On a breezy afternoon in September 2017, Chris Langer couldn’t find one that would accommodate his van and the ramp he uses for his wheelchair behind a San Diego lobster shop.\u003c/p>\n\u003cp>What transpired next has been the subject of arguments before two federal courts and opened a wide door to more federal disability lawsuits in California, home to more of these lawsuits in the last litigious decade than any other state.\u003c/p>\n\u003cp>Four months after that fall day, Langer filed a disability access lawsuit in federal court against the lobster shop, a smoke shop in the same building and the building’s owners, Milan and Diana Kiser, claiming a violation of his rights.\u003c/p>\n\u003cp>Langer has filed more than 2,000 claims like those over the past decade or so. For the last two years, his case against the Kisers was headed to defeat, with a federal judge ruling against him and questioning his motivation.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But last month, Langer prevailed before a three-judge panel on the 9th U.S. Circuit Court of Appeals. Attorneys who argue federal disability cases say that victory, which itself is being appealed, could open the floodgates to more federal disability rights lawsuits after a brief slowdown last year.\u003c/p>\n\u003cp>If Langer wins the next round, attorneys who represent businesses sued in disability cases worry that the case would set a precedent for a broader claim of “standing” to sue among plaintiffs in California disabled access lawsuits.\u003c/p>\n\u003cp>Typically, these cases are settled — out of tens of thousands of federal disability rights lawsuits filed nationally, only a couple dozen have ever gone to trial, according to a review of federal appellate court decisions by Texas attorney Richard Hunt, who defends businesses sued for disability rights claims.\u003c/p>\n\u003cp>In most other states, any awards won in federal disability rights cases can only be used to pay legal fees.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘What my clients are doing is basic code enforcement, and that’s what California law specifically encourages.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>California law allows for extra compensation that can benefit plaintiffs in those cases. The \u003ca href=\"https://leginfo.legislature.ca.gov/faces/codes_displaySection.xhtml?lawCode=CIV§ionNum=51\">Unruh Civil Rights Act\u003c/a> provides an additional award to plaintiffs themselves, which begins at a minimum of $4,000.\u003c/p>\n\u003cp>And that’s a major reason why California has had \u003ca href=\"https://www.adatitleiii.com/2023/02/ada-title-iii-federal-lawsuits-numbers-are-down-but-likely-to-rebound-in-2023/\">more than 30,000 federal disability rights lawsuits\u003c/a> in the last decade, far outpacing the rest of the country.\u003c/p>\n\u003cp>Langer declined to be interviewed, according to his attorney, who said people like Langer are forcing businesses to comply with a law they should already be following.\u003c/p>\n\u003cp>“There’s no three-letter agency that’s going around and enforcing these laws,” said Langer’s attorney, Dennis Price. “What my clients are doing is basic code enforcement, and that’s what California law specifically encourages.”\u003c/p>\n\u003cp>The Americans with Disabilities Act is one of a few federal laws that operate by turning their enforcement over to the people, with \u003ca href=\"https://www.justice.gov/crt/disability-rights-cases\">occasional interventions\u003c/a> by the U.S. Department of Justice.\u003c/p>\n\u003cp>Among the courts, the academics who study this issue and the lawyers who argue the cases, there are three interpretations of the actions of Langer, who has acknowledged in court proceedings that he is a “serial litigator.”\u003c/p>\n\u003cp>In one, serial litigants are warriors for disability access, literally opening doors for other people by identifying obstacles and suing to fix them.\u003c/p>\n\u003cp>In the second, they are simply pawns of avaricious law firms who have created a cottage industry out of disability rights lawsuits. According to filings in a tax case, \u003ca href=\"https://www.sacbee.com/news/local/article269332397.html\">one serial litigant\u003c/a> in Sacramento accumulated more than $1 million in settlements in 2014 alone. The firm representing him kept more than half the money and he kept the rest.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘On the day he filed this lawsuit, he also filed six other lawsuits. Yet, [Langer] was unfamiliar with those suits as well as the businesses involved.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>The third perspective, and one evidently held by the original judge deciding Langer’s case, is the least generous, handed down when Langer attempted to exclude his history as a serial litigator from trial. Several times in his April 5, 2021, opinion, U.S. District Court Judge Robert Benitez questioned Langer’s credibility.\u003c/p>\n\u003cp>“The court finds it doubtful that [Langer] would frequently travel to the property to purchase lobster, as he testified,” Benitez wrote. “This is bolstered by the fact [Langer] has filed previous lawsuits in which he admits he never intended to return to the premises.\u003c/p>\n\u003cp>“On the day he filed this lawsuit, he also filed six other lawsuits. Yet, [Langer] was unfamiliar with those suits as well as the businesses involved.”\u003c/p>\n\u003cfigure id=\"attachment_11942995\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11942995\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/03/CalMattersIngest02-800x533.jpg\" alt=\"A woman with short black hair and a baseball cap walks by a business with a blue accessibility sign displayed next to a ramp.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMattersIngest02.jpg 1200w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">An accessibility sign at the entrance of a business in Chinatown, San Francisco, on Feb. 18, 2023. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>Thousands of disability claims every year\u003c/h2>\n\u003cp>The Americans with Disabilities Act was signed into law in 1990, but the volume of lawsuits picked up in 2013, according to Seyfarth Shaw, the law firm that \u003ca href=\"https://www.adatitleiii.com/2023/02/ada-title-iii-federal-lawsuits-numbers-are-down-but-likely-to-rebound-in-2023/\">tracks federal disability lawsuits\u003c/a>. Since then, 33,100 claims were filed in federal courts in California. New York had 15,427, and Florida had 14,296 in the last decade. The next seven states barely topped 1,000 cases combined.\u003c/p>\n\u003cp>That initial ruling in the Langer case, coupled with high-profile moves by liberal district attorneys in San Francisco and Los Angeles against a firm known for representing serial filers, appeared to chill the number of disability claims filed against California businesses last year, according to data collected by Seyfarth Shaw. Last year, 2,519 cases were filed in California.\u003c/p>\n\u003cp>In one of the most publicized California cases, an attorney who used a wheelchair \u003ca href=\"https://www.sandiegouniontribune.com/sdut-exclusive-disabled-access-attorney-to-be-2012sep12-story.html\">filed 67 lawsuits against businesses\u003c/a> in 2005 in the tiny San Diego County mountain town of Julian, home of the Apple Days Festival, alleging that he could not access them. The attorney was later disbarred, in part because he pleaded no contest to filing federal disability lawsuits on behalf of a disabled client who had no idea the cases had been filed.\u003c/p>\n\u003cp>But businesses in the town of Julian did indeed improve their disability access. In the words of a \u003ca href=\"https://www.sandiegouniontribune.com/sdut-julian-working-toward-more-access-for-disabled-2007jun11-story.html\">\u003cem>North County Times\u003c/em> story from 2007\u003c/a>: “wider doors, lower counters, repaved parking lots, more disabled parking and signs, signs, signs.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>The question in many of these cases comes down to the legal concept of “standing,” which asks whether the plaintiffs have actually suffered a consequence because of their disability, and whether they ever intended to return to the place where they encountered a problem. Benitez ruled that Langer did have standing, but his rights weren’t violated, in part because the parking spot in question wasn’t supposed to be publicly accessible.\u003c/p>\n\u003cp>On appeal — and this is the other big reason plaintiffs file so often in California — the standing claim was received much more warmly, as it has been in other disability cases filed in the 9th U.S. Circuit Court of Appeals. “The attempted use of past litigation to prevent a litigant from pursuing a valid claim in federal court warrants our most careful scrutiny,” the court, known as one of the country’s most liberal federal appeals courts, had written in a 2008 opinion cited in the Langer appellate decision.\u003c/p>\n\u003cp>Last month, Langer’s arguments won over two judges on a three-judge panel. They reversed the Benitez decision and found that the lobster shop’s penchant for letting customers park in the tenant space made it, effectively, a public lot.\u003c/p>\n\u003cp>“A business cannot offer parking to customers without disabilities while not offering that same benefit to customers with disabilities,” the two judges wrote. “That discrimination goes to the heart of the ADA.”\u003c/p>\n\u003cp>The Kisers have asked for a rehearing before all nine appellate court judges.\u003c/p>\n\u003ch2>A service for disabled Californians\u003c/h2>\n\u003cp>Serial filers are the targets of misdirected anger, said Evelyn Clark, a Washington, D.C., attorney who uses a wheelchair and authored \u003ca href=\"https://heinonline.org/HOL/LandingPage?handle=hein.journals/walee26&div=22&id=&page=\">a much-cited paper\u003c/a> in law school on serial litigants.\u003c/p>\n\u003cp>“Something that’s really small for you that just looks like, oh, it’s just one little step, could be a total barrier for someone like me trying to get in,” Clark said. “But nobody’s going to be 100% compliant with every tiny regulation under the ADA. So I can understand the frustration of business owners.\u003c/p>\n\u003cp>“But I’ve heard people in California talk about how they go out in a wheelchair and it’s almost kind of a reverse discrimination, where people just assume you’re there to sue them,” Clark said.\u003c/p>\n\u003cp>On the defense’s side, there’s another perception: that these lawsuits find the poorest store owners least able to defend themselves in a country where they may not speak the language or understand the legal system, with offers to settle that just so happen to be a little cheaper than mounting a defense.\u003c/p>\n\u003ch2>Business owners on edge\u003c/h2>\n\u003cp>Business owners with a direct interest in the Langer case are hoping the Kisers get a rehearing before the full appeals court. Late last month, they filed a friend-of-the-court brief arguing against the decision by the three-judge panel.\u003c/p>\n\u003cp>“Make no mistake, these ADA lawsuits are not about promoting the ideals of the ADA,” they wrote, “but rather, they are about the illegitimate transfer of wealth from historically marginalized communities and into the pockets of ADA plaintiff’s lawyers.”\u003c/p>\n\u003cp>It was a federal disability lawsuit that led Moji Saniefar, one of the authors of that brief, from white-collar securities litigation to defending businesses from federal disability rights lawsuits. Like an action movie sequel, this time it was personal: A serial litigant sued Saniefar’s father’s restaurant.\u003c/p>\n\u003cp>Reza Saniefar was the owner of Zlfred’s, a well-loved Fresno cafe that closed during the coronavirus pandemic. An Iranian immigrant who fled the revolution in 1979, Reza Saniefar operated a small, family business. Locals evidently miss his restaurant enough to \u003ca href=\"http://whatmomscooking.com/2021/09/27/zlfreds/\">post and share copycat recipes\u003c/a>.\u003c/p>\n\u003cp>The cafe was named Zlfred’s because its former name was shared with another restaurant, called Alfred’s. When the other Alfred’s sued, Saniefar said, the previous owner simply stuck a Z where the A was. Thus, Zlfred’s.\u003c/p>\n\u003cp>The Saniefar family adopted the same defiant attitude when the restaurant was sued over disability access in 2014. Moji was their attorney. They won, and then went on the offensive, taking the law firm that represented the plaintiff to court, claiming they used fraud and deception to coerce small businesses into settling the cases.\u003c/p>\n\u003cp>The firm \u003ca href=\"https://www.abajournal.com/news/article/law-firms-settle-suit-accusing-them-of-civil-rico-conspiracy-to-collect-ada-settlements\">settled the case and shut down\u003c/a>, but it wasn’t the only firm that represents serial litigants.\u003c/p>\n\u003cfigure id=\"attachment_11942993\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11942993\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/03/CalMatterIngest01.jpg\" alt=\"A blue accessibility sign hangs in the window of a building's entrance next to a variety of colorful, stuffed animals on display.\" width=\"2000\" height=\"1334\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-800x534.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1536x1025.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/03/CalMatterIngest01-1920x1281.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">An accessibility sign hangs at the entrance of a Chinatown business in San Francisco on Feb. 18, 2023. A recent court ruling could set a new precedent in regards to ADA violations in California. Yet, some believe these complaints are targeting immigrant communities. \u003ccite>(Shelby Knowles/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>A much larger one, called Potter Handy, was accused by the liberal district attorneys in Los Angeles and San Francisco counties of “bombarding California’s small businesses with abusive boilerplate lawsuits,” and instructing serial litigants to pretend to have encountered barriers at a business they never visited. They further accused Potter Handy of having its clients file fake disability claims that led to settlements.\u003c/p>\n\u003cp>“Each year Potter Handy uses ADA/Unruh lawsuits to shake down hundreds or even thousands of small businesses to pay it cash settlements, regardless of whether the businesses actually violate the ADA,” wrote Los Angeles County District Attorney George Gascón and former San Francisco City and County District Attorney Chesa Boudin in an April 2022 state court filing.\u003c/p>\n\u003cp>They said the lawsuits not only threaten small businesses, but also “unfairly taint the reputation of other innocent disabled consumers.”\u003c/p>\n\u003cp>Potter Handy, which also does business as the Center for Disability Access, did not return calls seeking comment. Neither did Gascón. Boudin and Gascón wrote in their complaint that Potter Handy was particularly active in San Francisco’s Chinatown during the pandemic.\u003c/p>\n\u003cp>“Multiple Chinatown businesses were sued for allegedly having inaccessible outdoor dining tables during the early months of 2021,” they wrote, but “those businesses were open for takeout only during that time and had no dining tables at all — indoor or outdoor.”\u003c/p>\n\u003cp>Potter Handy responded in court that Boudin and Gascón were making the accusations for political reasons. San Francisco Superior Court Judge Curtis Karnow \u003ca href=\"https://www.sfgate.com/news/bayarea/article/Da-s-Lawsuit-Against-Potter-Handy-Law-Firm-17408200.php\">dismissed the case\u003c/a>, and ruled that Potter Handy’s attorneys were covered by California’s “litigation privilege.”\u003c/p>\n\u003ch2 id=\"h-a-client-who-wanted-to-fight\">A client who wanted to fight\u003c/h2>\n\u003cp>In the Langer case, Moji Saniefar is representing a handful of Bay Area merchant associations, including the Chinatown Merchants United Association of San Francisco, who are panicked about the appellate court ruling in Langer’s favor.\u003c/p>\n\u003cp>“Serial ADA plaintiff’s lawyers recognize that the justice gap makes [small businesses] far more likely to settle cases quickly and without prolonged litigation,” according to the Feb. 16 friend-of-the-court brief.\u003c/p>\n\u003cp>Hunt, the Texas attorney who defends businesses in disability rights cases, said it’s unusual for his clients to take a case to court, much less all the way up to federal appeals court.\u003c/p>\n\u003cp>“You have to have a particularly angry, rich, stubborn client to not settle the case,” Hunt said. “I’m looking for angry, rich, stubborn clients. I would love to have some, but so far, when I tell my clients that they can get out of it by settling it for cheaper than the cost of defense, then they’re like, you know, let’s just settle it.”\u003c/p>\n\u003cp>The attorney for the Kisers, whom Langer is suing, said the Legislature needs to step in. He agrees that his clients may fit Hunt’s description.\u003c/p>\n\u003cp>“Mr. Kiser’s perspective is, hey, we did nothing wrong and we don’t think we should have to pay this guy,” said Sam Henein, a San Diego lawyer. “He says if the judge tells me I did something wrong, I guess then I have to pay, but I don’t think I did.”\u003c/p>\n\u003cp>The solution, said Clark, the D.C. attorney, is to amend the ADA’s enforcement mechanism from its current iteration to a “notice and cure” standard, which would give businesses 60 or 90 days to fix the accessibility issue without money changing hands.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
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"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
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"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
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"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
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"possible": {
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"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
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"pri-the-world": {
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"radiolab": {
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"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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"reveal": {
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"info": "Created by The Center for Investigative Reporting and PRX, Reveal is public radios first one-hour weekly radio show and podcast dedicated to investigative reporting. Credible, fact based and without a partisan agenda, Reveal combines the power and artistry of driveway moment storytelling with data-rich reporting on critically important issues. The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.",
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},
"rightnowish": {
"id": "rightnowish",
"title": "Rightnowish",
"tagline": "Art is where you find it",
"info": "Rightnowish digs into life in the Bay Area right now… ish. Journalist Pendarvis Harshaw takes us to galleries painted on the sides of liquor stores in West Oakland. We'll dance in warehouses in the Bayview, make smoothies with kids in South Berkeley, and listen to classical music in a 1984 Cutlass Supreme in Richmond. Every week, Pen talks to movers and shakers about how the Bay Area shapes what they create, and how they shape the place we call home.",
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"order": 16
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},
"science-friday": {
"id": "science-friday",
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"info": "Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide. Each week, the show focuses on science topics that are in the news and tries to bring an educated, balanced discussion to bear on the scientific issues at hand. Panels of expert guests join host Ira Flatow, a veteran science journalist, to discuss science and to take questions from listeners during the call-in portion of the program.",
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"snap-judgment": {
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