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"content": "\u003cp>A fall-themed Snoopy jazz playlist hums throughout the art studio, rising just above the soft scratching of brushes on canvas. One person uses purple paint to carefully outline Squidward, his fourth SpongeBob-themed painting. Another artist prefers to paint airplanes, having previously worked at the airport.\u003c/p>\n\u003cp>Ron Ansley’s specialty is abstract paintings, often inspired by Tiggy, his cat who passed away. Today, he’s using oil pastels to outline an illustration of plates and cups sprouting cactuses.\u003c/p>\n\u003cp>“Making art is what I call a relaxation stress breaker,” Ansley said. “Mostly, I just like to express myself in painting.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Ansley, 64, has autism and several physical disabilities, including deep vein thrombosis and cataracts. Since 2019, he’s been attending art classes three days a week at The Arc \u003ca href=\"https://www.kqed.org/news/tag/san-francisco\">San Francisco\u003c/a>. As the local chapter of the national Arc organization, the nonprofit serves about 800 adults with intellectual and developmental disabilities in the \u003ca href=\"https://www.kqed.org/news/tag/bay-area\">Bay Area\u003c/a>. In addition to art, music and cooking classes, The Arc helps clients find jobs, pursue higher education and navigate their health care.\u003c/p>\n\u003cp>Now, programs like these are at risk nationwide. When President Donald Trump signed into law his sweeping policy bill, dubbed the One Big Beautiful Bill, it included roughly $1 trillion in federal Medicaid cuts over the next decade.\u003c/p>\n\u003cfigure id=\"attachment_12057949\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057949\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ronald Albert Ansley, a student in ArtReach, shows his painting of glass vases in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Medicaid, called Medi-Cal in California, is best known for helping low-income people access health care, but it also funds services for people with disabilities.\u003c/p>\n\u003cp>The White House website claims Trump’s megabill \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">won’t impact Americans with disabilities\u003c/a>: “Rest assured, those with disabilities receiving Medicaid will receive no loss or change in coverage.”\u003c/p>\n\u003cp>Policy experts, however, say that while nothing in the bill specifically targets disability services, they’re unlikely to be left unscathed.\u003c/p>\n\u003cp>“Because people with disabilities are more likely to depend on Medi-Cal compared to the general population, we would argue that any cuts to this funding would disproportionately harm folks with a disability,” said Adriana Ramos-Yamamoto, a senior policy analyst at the California Budget and Policy Center. “They’re essentially destabilizing a whole program and system that supports these communities.”[aside postID=news_12058418 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2025/10/250924-ELECTION-SJ-MEASURE-A_00613_TV-KQED.jpg']The California Department of Health Care Services (DHCS) estimates the state could \u003ca href=\"https://ahea.assembly.ca.gov/system/files/2025-08/dhcs-slide-presentation.pdf\">lose $30 billion a year\u003c/a> in federal MediCal funding for the next decade. It falls to state legislators to close that gap when they take on next year’s budget.\u003c/p>\n\u003cp>Ramos-Yamamoto expects the state will drain money from a benefit known as home- and community-based care, which \u003ca href=\"https://www.dhcs.ca.gov/dataandstats/dashboards/Pages/LTSS-Dashboard.aspx\">serves more than 900,000 Californians\u003c/a>, according to 2022 data from DHCS.\u003c/p>\n\u003cp>Home- and community-based services are programs like those provided by The Arc, which allow people to live and work in their homes and communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“During tough budget years, these home- and community-based services are at risk because they’re optional services and when budgets are tight, those are often times on the chopping block,” Ramos-Yamamoto said.\u003c/p>\n\u003cp>Federal law requires states to provide certain benefits, like nursing home services, to receive matching Medicaid dollars. Other benefits, like home- and community-based services, are considered optional. That means states can make changes to them — limiting enrollment, reducing benefits or cutting them entirely — when they face budgetary emergencies.\u003c/p>\n\u003cp>“During the Great Recession, just about every state in the country ended up cutting some of their home- and community-based services,” said William Dow, a professor at the UC Berkeley School of Public Health. “And these account for about half of the Medicaid optional service spending nationwide, and so they’re just ripe for cutting.”\u003c/p>\n\u003cfigure id=\"attachment_12057948\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057948\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Wecley Borges, a student in ArtReach, paints in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In an email to KQED, the White House disputed that Medicaid changes will jeopardize home- and community-based services and pointed to a \u003ca href=\"https://www.kff.org/medicaid/health-provisions-in-the-2025-federal-budget-reconciliation-law/#2ca666ac-5d15-4454-8973-241566e22bb5\">provision in the bill\u003c/a> providing additional funding to expand access to this care.\u003c/p>\n\u003cp>However, Ramos-Yamamoto said it’s unlikely states will spend limited resources to make new investments in these services while facing billions of dollars in cuts elsewhere.\u003c/p>\n\u003cp>“Despite there being some promising revisions related to this HCBS expansion … it is really insignificant compared to the amount that Republicans in Congress and the Trump administration are cutting from Medicaid overall,” Ramos-Yamamoto said.\u003c/p>\n\u003cp>Kristen Pedersen, executive director of The Arc San Francisco, said even before these changes to Medicaid, disability services were underfunded. Most of The Arc’s programs have a 12-month waitlist with over 125 people waiting.[aside postID=news_12048636 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2025/05/npr.brightspotcdn-1020x680.jpg']“What’s really concerning for us is… knowing that funding is going to be sparse for a system that’s already pretty anemic as it is,” Pedersen said.\u003c/p>\n\u003cp>Pederson is most worried about their clients with complex needs, like Ansley.\u003c/p>\n\u003cp>“I think those folks are very much at risk of ending up in institutional settings,” she said. “As the funding depletes and you aren’t able to pay direct service workers for very skilled work that they do to support these individuals, I think that options are going to really decrease.”\u003c/p>\n\u003cp>In addition to attending art classes, Ansley lives at The Arc’s affordable housing project in San Francisco. He receives care from direct support professionals who take him to the grocery store and help him with his laundry, budgeting and medications.\u003c/p>\n\u003cp>For Ansley, the thought of losing his independent living services is terrifying.\u003c/p>\n\u003cp>“I’m an independent man. I just have to stay independent,” Ansley said. “I don’t want to end up in no nursing home. If I end up in a nursing home, I’m a nobody. I am just a number.”\u003c/p>\n\u003cp>Ansley also relies on a health advocate named Arlo Beckman, who takes him to doctor’s appointments and coordinates his health care services like insurance renewal. Beckman said that although home- and community-based care is deemed optional, it’s vital to people’s quality of life.\u003c/p>\n\u003cfigure id=\"attachment_12057950\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057950\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Students Ruth Defoe, left, and Douglas Morales, right, work on art in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“In this world, we all consider in-home supportive services to be critical to our participants’ lives and their well-being,” Beckman said.\u003c/p>\n\u003cp>Many of The Arc’s clients rely on this support to hold jobs, volunteer in their communities and go to school. Any reductions in funding could mean less staff available for individualized services and even longer waitlists.\u003c/p>\n\u003cp>“I find that the clients that are more homebound are sad, more frequently struggle with mental health issues,” Beckman said. “I think we’re at a point where we understand how significantly being social and getting outside and just moving in general impacts both physical and mental health.”\u003c/p>\n\u003cp>Many of the changes to Medicaid don’t go into effect until after the 2026 midterm elections, but advocates are already pushing state leaders to uphold obligations as laid out in the \u003ca href=\"https://www.dds.ca.gov/transparency/laws-regulations/lanterman-act-and-related-laws/\">Lanterman Act\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_12057951\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057951\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Drawers with art students’ names taped in ArtReach Studios at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The landmark law, passed in California in 1969, ensures people with developmental disabilities have the support to live full and inclusive lives.\u003c/p>\n\u003cp>“We just want to make sure that the balancing of the budget isn’t done on the backs of people with disabilities,” Pedersen said.\u003c/p>\n\u003cp>To offset the impending damage of federal cuts, some health care advocates have proposed a \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article311855234.html\">ballot measure to raise taxes on the ultra-rich\u003c/a>.\u003c/p>\n\u003cp>Santa Clara County has already put the question before voters, placing a \u003ca href=\"https://www.kqed.org/news/12058418/santa-clara-county-sales-tax-measure-a-pitched-to-offset-deep-medicaid-cuts-measure-a\">sales tax measure on a November special election ballot\u003c/a> to support the county’s health care system.\u003c/p>\n\u003cfigure id=\"attachment_12057952\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057952\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ronald Albert Ansley poses for a portrait at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Pedersen said her organization is also approaching 2026 gubernatorial candidates, asking them to make a campaign pledge to prioritize disability services.\u003c/p>\n\u003cp>“We don’t really have someone right now who’s taking up that mantle,” Pedersen said. “That’s something we’re really working on at The Arc California level and just educating our new legislators.”\u003c/p>\n\u003cp>For now, as they wait for state lawmakers to unveil their budget plan, the disability community has to sit with uncertainty and the fear of what’s to come.\u003c/p>\n\u003cp>“It’s like you have to choose: medicine or food. Medicine or art supplies. Medicine or laundry money. Medicine or bus rides. Medicine or paying your bills,” Ansley said. “It’s the worst thing that is going to ruin people’s physical health and their mental health. I don’t like it at all.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Ansley, 64, has autism and several physical disabilities, including deep vein thrombosis and cataracts. Since 2019, he’s been attending art classes three days a week at The Arc \u003ca href=\"https://www.kqed.org/news/tag/san-francisco\">San Francisco\u003c/a>. As the local chapter of the national Arc organization, the nonprofit serves about 800 adults with intellectual and developmental disabilities in the \u003ca href=\"https://www.kqed.org/news/tag/bay-area\">Bay Area\u003c/a>. In addition to art, music and cooking classes, The Arc helps clients find jobs, pursue higher education and navigate their health care.\u003c/p>\n\u003cp>Now, programs like these are at risk nationwide. When President Donald Trump signed into law his sweeping policy bill, dubbed the One Big Beautiful Bill, it included roughly $1 trillion in federal Medicaid cuts over the next decade.\u003c/p>\n\u003cfigure id=\"attachment_12057949\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057949\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-2-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ronald Albert Ansley, a student in ArtReach, shows his painting of glass vases in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Medicaid, called Medi-Cal in California, is best known for helping low-income people access health care, but it also funds services for people with disabilities.\u003c/p>\n\u003cp>The White House website claims Trump’s megabill \u003ca href=\"https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/\">won’t impact Americans with disabilities\u003c/a>: “Rest assured, those with disabilities receiving Medicaid will receive no loss or change in coverage.”\u003c/p>\n\u003cp>Policy experts, however, say that while nothing in the bill specifically targets disability services, they’re unlikely to be left unscathed.\u003c/p>\n\u003cp>“Because people with disabilities are more likely to depend on Medi-Cal compared to the general population, we would argue that any cuts to this funding would disproportionately harm folks with a disability,” said Adriana Ramos-Yamamoto, a senior policy analyst at the California Budget and Policy Center. “They’re essentially destabilizing a whole program and system that supports these communities.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>The California Department of Health Care Services (DHCS) estimates the state could \u003ca href=\"https://ahea.assembly.ca.gov/system/files/2025-08/dhcs-slide-presentation.pdf\">lose $30 billion a year\u003c/a> in federal MediCal funding for the next decade. It falls to state legislators to close that gap when they take on next year’s budget.\u003c/p>\n\u003cp>Ramos-Yamamoto expects the state will drain money from a benefit known as home- and community-based care, which \u003ca href=\"https://www.dhcs.ca.gov/dataandstats/dashboards/Pages/LTSS-Dashboard.aspx\">serves more than 900,000 Californians\u003c/a>, according to 2022 data from DHCS.\u003c/p>\n\u003cp>Home- and community-based services are programs like those provided by The Arc, which allow people to live and work in their homes and communities rather than in institutions like nursing homes.\u003c/p>\n\u003cp>“During tough budget years, these home- and community-based services are at risk because they’re optional services and when budgets are tight, those are often times on the chopping block,” Ramos-Yamamoto said.\u003c/p>\n\u003cp>Federal law requires states to provide certain benefits, like nursing home services, to receive matching Medicaid dollars. Other benefits, like home- and community-based services, are considered optional. That means states can make changes to them — limiting enrollment, reducing benefits or cutting them entirely — when they face budgetary emergencies.\u003c/p>\n\u003cp>“During the Great Recession, just about every state in the country ended up cutting some of their home- and community-based services,” said William Dow, a professor at the UC Berkeley School of Public Health. “And these account for about half of the Medicaid optional service spending nationwide, and so they’re just ripe for cutting.”\u003c/p>\n\u003cfigure id=\"attachment_12057948\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057948\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-1-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Wecley Borges, a student in ArtReach, paints in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In an email to KQED, the White House disputed that Medicaid changes will jeopardize home- and community-based services and pointed to a \u003ca href=\"https://www.kff.org/medicaid/health-provisions-in-the-2025-federal-budget-reconciliation-law/#2ca666ac-5d15-4454-8973-241566e22bb5\">provision in the bill\u003c/a> providing additional funding to expand access to this care.\u003c/p>\n\u003cp>However, Ramos-Yamamoto said it’s unlikely states will spend limited resources to make new investments in these services while facing billions of dollars in cuts elsewhere.\u003c/p>\n\u003cp>“Despite there being some promising revisions related to this HCBS expansion … it is really insignificant compared to the amount that Republicans in Congress and the Trump administration are cutting from Medicaid overall,” Ramos-Yamamoto said.\u003c/p>\n\u003cp>Kristen Pedersen, executive director of The Arc San Francisco, said even before these changes to Medicaid, disability services were underfunded. Most of The Arc’s programs have a 12-month waitlist with over 125 people waiting.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>“What’s really concerning for us is… knowing that funding is going to be sparse for a system that’s already pretty anemic as it is,” Pedersen said.\u003c/p>\n\u003cp>Pederson is most worried about their clients with complex needs, like Ansley.\u003c/p>\n\u003cp>“I think those folks are very much at risk of ending up in institutional settings,” she said. “As the funding depletes and you aren’t able to pay direct service workers for very skilled work that they do to support these individuals, I think that options are going to really decrease.”\u003c/p>\n\u003cp>In addition to attending art classes, Ansley lives at The Arc’s affordable housing project in San Francisco. He receives care from direct support professionals who take him to the grocery store and help him with his laundry, budgeting and medications.\u003c/p>\n\u003cp>For Ansley, the thought of losing his independent living services is terrifying.\u003c/p>\n\u003cp>“I’m an independent man. I just have to stay independent,” Ansley said. “I don’t want to end up in no nursing home. If I end up in a nursing home, I’m a nobody. I am just a number.”\u003c/p>\n\u003cp>Ansley also relies on a health advocate named Arlo Beckman, who takes him to doctor’s appointments and coordinates his health care services like insurance renewal. Beckman said that although home- and community-based care is deemed optional, it’s vital to people’s quality of life.\u003c/p>\n\u003cfigure id=\"attachment_12057950\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057950\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-7-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Students Ruth Defoe, left, and Douglas Morales, right, work on art in the art studio at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“In this world, we all consider in-home supportive services to be critical to our participants’ lives and their well-being,” Beckman said.\u003c/p>\n\u003cp>Many of The Arc’s clients rely on this support to hold jobs, volunteer in their communities and go to school. Any reductions in funding could mean less staff available for individualized services and even longer waitlists.\u003c/p>\n\u003cp>“I find that the clients that are more homebound are sad, more frequently struggle with mental health issues,” Beckman said. “I think we’re at a point where we understand how significantly being social and getting outside and just moving in general impacts both physical and mental health.”\u003c/p>\n\u003cp>Many of the changes to Medicaid don’t go into effect until after the 2026 midterm elections, but advocates are already pushing state leaders to uphold obligations as laid out in the \u003ca href=\"https://www.dds.ca.gov/transparency/laws-regulations/lanterman-act-and-related-laws/\">Lanterman Act\u003c/a>.\u003c/p>\n\u003cfigure id=\"attachment_12057951\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057951\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-9-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Drawers with art students’ names taped in ArtReach Studios at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The landmark law, passed in California in 1969, ensures people with developmental disabilities have the support to live full and inclusive lives.\u003c/p>\n\u003cp>“We just want to make sure that the balancing of the budget isn’t done on the backs of people with disabilities,” Pedersen said.\u003c/p>\n\u003cp>To offset the impending damage of federal cuts, some health care advocates have proposed a \u003ca href=\"https://www.sacbee.com/news/politics-government/capitol-alert/article311855234.html\">ballot measure to raise taxes on the ultra-rich\u003c/a>.\u003c/p>\n\u003cp>Santa Clara County has already put the question before voters, placing a \u003ca href=\"https://www.kqed.org/news/12058418/santa-clara-county-sales-tax-measure-a-pitched-to-offset-deep-medicaid-cuts-measure-a\">sales tax measure on a November special election ballot\u003c/a> to support the county’s health care system.\u003c/p>\n\u003cfigure id=\"attachment_12057952\" class=\"wp-caption aligncenter\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12057952\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED.jpg\" alt=\"\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2025/09/20250923_MEDICAIDDISABILITY_GC-11-KQED-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Ronald Albert Ansley poses for a portrait at the Arc in San Francisco on Sept. 23, 2025. \u003ccite>(Gina Castro/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Pedersen said her organization is also approaching 2026 gubernatorial candidates, asking them to make a campaign pledge to prioritize disability services.\u003c/p>\n\u003cp>“We don’t really have someone right now who’s taking up that mantle,” Pedersen said. “That’s something we’re really working on at The Arc California level and just educating our new legislators.”\u003c/p>\n\u003cp>For now, as they wait for state lawmakers to unveil their budget plan, the disability community has to sit with uncertainty and the fear of what’s to come.\u003c/p>\n\u003cp>“It’s like you have to choose: medicine or food. Medicine or art supplies. Medicine or laundry money. Medicine or bus rides. Medicine or paying your bills,” Ansley said. “It’s the worst thing that is going to ruin people’s physical health and their mental health. I don’t like it at all.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"slug": "a-place-for-us-by-us-san-franciscos-disability-cultural-center-breaks-new-ground",
"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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"title": "Despite Overhaul, California's Unemployment System Still Plagued With Fraud, Debt",
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"headTitle": "Despite Overhaul, California’s Unemployment System Still Plagued With Fraud, Debt | KQED",
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"content": "\u003cp>Kim Tanner didn’t expect to become a fraud detective when she filed for disability with the California Employment Development Department.\u003c/p>\n\u003cp>But in mid-July, $3,161 vanished from her online account with the state’s new debit card contractor, Money Network, according to Tanner’s complaints to government regulators. Someone had gotten access to her online debit card account, added a new bank account and transferred out her money, all without any notifications, she wrote in the complaints.\u003c/p>\n\u003cp>Tanner said Money Network told her it could take 90 days to investigate and that she may or may not get a full refund, leaving her short on rent money. She turned to social media and saw similar horror stories on Reddit and Facebook. “My head exploded,” Tanner said. “This was happening to tons of people.”\u003c/p>\n\u003cp>So, she started filing complaints. First, with Money Network, its parent company Fiserv, and the EDD. Then, with a state senator and a half-dozen financial regulators.\u003c/p>\n\u003cp>“It just went on and on and on,” said Tanner, who got her money back via paper check about a month and a half later after a federal agency intervened. “This needs to be investigated.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[aside label='Related Coverage' tag='unemployment-fraud']\u003c/p>\n\u003cp>A CalMatters investigation a year ago exposed how the EDD’s unemployment system crashed during the pandemic, the result of historic job losses, years of missed warning signs and poor contractor performance. As a result, the system at first failed to stop widespread fraud, then cut off access to millions of real people who used it as a crucial lifeline.\u003c/p>\n\u003cp>Now, even with a new payment contractor in place, concerns about fraud linger for people who rely on unemployment and disability programs run by the EDD. Multiple lawsuits and 74 federal consumer complaints about government debit cards have been filed by Californians against Money Network this year alone. The EDD and the company say the debit card fraud is smaller scale than the varied forms of fraud during the pandemic.\u003c/p>\n\u003cp>On top of the fraud complaints, a report released Monday by the Legislative Analyst’s Office warns that lawmakers are failing to address a bigger unemployment problem: a “broken” financial model, one that threatens the whole system.\u003c/p>\n\u003cp>California’s unemployment fund is still $20 billion in debt to the federal government after the state took out loans to cover pandemic benefits, costing taxpayers $1 billion in annual interest — more than the state spends on child welfare. Now, after years of ignoring calls to modernize the state’s 1980s-era unemployment tax code, the system is on track to lose $2 billion a year as it fails to bring in enough revenue to cover unemployment expenses, according to the report.\u003c/p>\n\u003cp>The Legislative Analyst’s Office, which provides fiscal and policy advice to state lawmakers, says the state needs to bring unemployment taxes in line with other states to cover the deficit.\u003c/p>\n\u003cp>“This is entirely avoidable,” said LAO policy analyst Chas Alamo.\u003c/p>\n\u003cfigure id=\"attachment_12016645\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016645 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg\" alt=\"\" width=\"1200\" height=\"1500\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-800x1000.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-1020x1275.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-160x200.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kim Tanner at her home in Carlsbad. \u003ccite>( Adriana Heldiz/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The recommendations could force a reckoning for lawmakers caught between business and labor advocates. Business groups have fought tax increases, favoring California’s current lowest-in-the-nation unemployment tax base. Labor groups argue that taxes must go up to stabilize the system. Then, they say, lawmakers should evaluate measures to expand which workers are eligible for unemployment or raise California’s $450-a-week maximum payment, which is also lower than many other states.\u003c/p>\n\u003cp>What happens next will be one test of how legislative leaders respond to voters’ rebuke of Democratic leadership nationwide, with the Legislature’s Democratic leadership pledging to do more to make California a less expensive place to live.\u003c/p>\n\u003cp>Meanwhile, the EDD has already secured funding for an unprecedented five-year, $1.2 billion effort called EDDNext to finally modernize the call centers, software and websites that power the state’s job safety net — a more ambitious version of past modernization efforts that crumbled during the pandemic.\u003c/p>\n\u003cp>Whether or not history will repeat itself is complicated by unanswered questions about what went wrong at the EDD during the pandemic and how the state scrambled to recover.\u003c/p>\n\u003cp>Former California labor chief Julie Su went on to become acting U.S. labor secretary and one of the longest-unconfirmed presidential nominees in history, thanks in part to criticism over unemployment fraud.\u003c/p>\n\u003cp>Gov. Gavin Newsom’s administration has denied CalMatters’ repeated requests for internal records from this period, citing an exemption that allows the governor to keep his communications secret if he chooses.\u003c/p>\n\u003ch2>The fraud factor\u003c/h2>\n\u003cp>During the pandemic, a wide range of fraud schemes hit the unemployment system at once. Global hackers used large-scale identity theft. Low-level social media scammers and prison inmates adopted fake names to file for benefits under emergency federal programs that waived normal identity checks. Debit card scammers cloned insecure EDD cards then run by Bank of America and drained the accounts.\u003c/p>\n\u003cp>Millions of real California workers got caught up in the mess, state audits found. Some saw their EDD accounts flagged as suspicious due to clerical errors, communication failures or faulty fraud software. Laid-off workers saw EDD debit cards overdrawn by thousands of dollars or cut off as the bank and the state scrambled to rein in fraud.\u003c/p>\n\u003cp>California and other states were partially let off the hook when the federal government agreed to absorb the bulk of the billions lost to fraud in emergency programs. After Bank of America pulled out of the unemployment business last year, the EDD tried to turn the page on debit card fraud by hiring Georgia finance tech company Money Network to take over.\u003c/p>\n\u003cp>The scope and details of the current fraud that workers allege isn’t clear. State auditors and financial regulators haven’t analyzed it; lawsuits and regulatory complaints only show that money disappeared from workers’ accounts, not how it was taken.\u003c/p>\n\u003cp>The Consumer Financial Protection Bureau, which previously fined Bank of America $100 million over what it called “botched” pandemic unemployment payments, declined to answer questions about new complaints. The bureau’s public records show that Californians have filed 149 complaints against Money Network since 2022, when the company first started running a different state debit card program, with 101 complaints mentioning government cards.\u003c/p>\n\u003cp>Money Network said in a statement that “only a small percentage of EDD recipients have reported suspected fraud” and that anyone concerned should “call the number listed on the back of their card.”\u003c/p>\n\u003cp>The EDD and Money Network also now allow direct deposit, giving people the option of skipping debit cards altogether. Since direct deposit launched in June, about 15% of new applicants have opted for debit cards, the EDD said in a statement. The agency could not immediately say how many of its hundreds of thousands of existing customers still use debit cards.\u003c/p>\n\u003cp>“Anyone who suspects they are a victim of fraud should take steps to protect themselves and file a fraud report,” the EDD said in a statement.\u003c/p>\n\u003cfigure id=\"attachment_12016647\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016647 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg\" alt=\"\" width=\"1200\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-160x107.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A flyer for identity theft resources and information sits on top of other documentation related to Kim Tanner’s financial fraud case on her desk at her home in Carlsbad on Oct. 11, 2024. \u003ccite>( Adriana Heldiz/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Lea Bitton was still reeling from a high-risk pregnancy when it happened to her.\u003c/p>\n\u003cp>One evening in June, the Orange County resident logged into her Money Network disability account and realized that $4,000 was missing. She relied on the EDD money to cover her family’s costs during parental leave.\u003c/p>\n\u003cp>Someone Bitton didn’t know had hacked into her account, according to a lawsuit she filed against Money Network. Similar to Tanner’s case in Carlsbad, a new electronic transfer was set up for someone with a different name and bank account, and Bitton was never asked to authorize the change before the money disappeared.\u003c/p>\n\u003cp>Matthew Loker, Bitton’s attorney, said the fraud appears similar to some EDD debit card fraud cases that he handled during the pandemic.\u003c/p>\n\u003cp>“It’s deja vu a little bit,” Loker said. “It’s a difficult problem, but it shouldn’t be the consumers who are left holding the bag.”\u003c/p>\n\u003cp>If fraud occurs once unemployment or disability money has already been transferred from the EDD to Money Network, the state’s contract says that Money Network is responsible for investigating and reimbursing clients if necessary. However, some people with EDD Money Network debit cards say that it isn’t always easy to figure out how to start that process.\u003c/p>\n\u003cp>In Los Angeles, Greg Zekowski filed for unemployment while in between film projects. He hadn’t even used his EDD Money Network debit card yet, he said, when he logged into the online account and saw several unfamiliar charges to Uber and other retailers.\u003c/p>\n\u003cp>He called Money Network. “Their response was, ‘The problem is EDD,’” Zekowski said.\u003c/p>\n\u003cp>So he called the EDD: “Their response was, ‘It’s all them.’”\u003c/p>\n\u003cp>The EDD and its contractors aren’t alone. The state’s food assistance and college financial aid programs are also among the many financial systems facing mounting fraud risks.\u003c/p>\n\u003cp>One broader challenge is how few financial institutions bid on government benefit projects. The lack of options puts more pressure on agencies working to secure debit cards and other payments, according to a 2023 report by the Consumer Financial Protection Bureau.\u003c/p>\n\u003cp>“Providers may face minimal competitive pressure from program innovation, new entrants, or customer choice,” the report authors wrote, “which may exacerbate or cause the issues with fees and customer service that benefits recipients face.”\u003c/p>\n\u003cp>A financial cliff\u003cbr>\nWhile the EDD and the people who rely on it play whack-a-mole with fraud, California has big decisions to make about the future of the state’s job safety net.\u003c/p>\n\u003cp>If the state continues to do nothing, the LAO projected this week, it will have no unemployment reserves and become even more reliant on loans from the federal government to weather future recessions, likely costing taxpayers billions more in interest.\u003c/p>\n\u003cp>Or the state can bite the bullet, as many others have, and change the way it pays for unemployment.\u003c/p>\n\u003cfigure id=\"attachment_12016648\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016648 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg\" alt=\"\" width=\"1200\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-160x107.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The offices of the Employment Development Department in Sacramento. \u003ccite>(Miguel Gutierrez Jr./CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>First, the LAO recommends that businesses pay a flat 1.9% unemployment tax while digging out of debt. California companies also currently only pay unemployment taxes on the first $7,000 a worker earns each year. Instead, the LAO recommends taxing employers on workers’ first $46,800 in earnings — higher than some neighbors like Nevada but lower than Washington, Idaho and Oregon.\u003c/p>\n\u003cp>“We understand that the scope of the recommendations that we’re putting forward in this report are significant,” said LAO analyst Ann Hollingshead. “This is just an honest reflection of the severity of the underlying problems in the system.”\u003c/p>\n\u003cp>State lawmakers last revamped unemployment taxes in 1984. And businesses are already voicing opposition to temporary tax hikes to pay down California’s deep federal debt. One bill to recalibrate how the system is paid for — raising unemployment taxes to eventually increase weekly benefits — died in committee this year.\u003c/p>\n\u003cp>Robert Moutrie, a policy advocate for the California Chamber of Commerce, said that the business group is still reviewing the details of the LAO proposal. In the past, the Chamber has favored tightening unemployment eligibility to reduce benefit payments, labeling any form of tax increases and proposals to expand the unemployment system “job killers.”\u003c/p>\n\u003cp>Daniela Urban, executive director of the Sacramento Center for Workers’ Rights, said there is broad agreement on how unstable the current situation is but discord on where to go from here. She and other labor advocates say that unemployment is one area where California businesses have long underpaid compared to other states and that the system has not kept up with non-traditional jobs and increasing costs of living.\u003c/p>\n\u003cp>“We’re in a huge hole, and that’s not financially acceptable,” Urban said. “But how and when to make those changes, I think, is what the contention is.”\u003c/p>\n\u003cp>In addition to the funding hole, the pandemic revealed other problems at EDD. Tech systems buckled: jammed call centers, spotty online accounts and a patchwork behind-the-scenes process for tracking unemployment claims. The agency is currently overhauling these systems with EDDNext.\u003c/p>\n\u003cp>Last year, the agency hired Salesforce to remake the MyEDD online system that workers use to manage their accounts. It brought in Amazon Web Services to update and integrate EDD phone systems that left as many as 40 million calls a month unanswered during the pandemic.\u003c/p>\n\u003cp>Early next year, the state will award a contract for the biggest chunk of the project — a new central system for EDD personnel to manage claims, which comes with more than 600 pages of specifications.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“We are making tremendous investments in modernizing EDD, and the work is going well,” the agency said in a statement.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Kim Tanner didn’t expect to become a fraud detective when she filed for disability with the California Employment Development Department.\u003c/p>\n\u003cp>But in mid-July, $3,161 vanished from her online account with the state’s new debit card contractor, Money Network, according to Tanner’s complaints to government regulators. Someone had gotten access to her online debit card account, added a new bank account and transferred out her money, all without any notifications, she wrote in the complaints.\u003c/p>\n\u003cp>Tanner said Money Network told her it could take 90 days to investigate and that she may or may not get a full refund, leaving her short on rent money. She turned to social media and saw similar horror stories on Reddit and Facebook. “My head exploded,” Tanner said. “This was happening to tons of people.”\u003c/p>\n\u003cp>So, she started filing complaints. First, with Money Network, its parent company Fiserv, and the EDD. Then, with a state senator and a half-dozen financial regulators.\u003c/p>\n\u003cp>“It just went on and on and on,” said Tanner, who got her money back via paper check about a month and a half later after a federal agency intervened. “This needs to be investigated.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>A CalMatters investigation a year ago exposed how the EDD’s unemployment system crashed during the pandemic, the result of historic job losses, years of missed warning signs and poor contractor performance. As a result, the system at first failed to stop widespread fraud, then cut off access to millions of real people who used it as a crucial lifeline.\u003c/p>\n\u003cp>Now, even with a new payment contractor in place, concerns about fraud linger for people who rely on unemployment and disability programs run by the EDD. Multiple lawsuits and 74 federal consumer complaints about government debit cards have been filed by Californians against Money Network this year alone. The EDD and the company say the debit card fraud is smaller scale than the varied forms of fraud during the pandemic.\u003c/p>\n\u003cp>On top of the fraud complaints, a report released Monday by the Legislative Analyst’s Office warns that lawmakers are failing to address a bigger unemployment problem: a “broken” financial model, one that threatens the whole system.\u003c/p>\n\u003cp>California’s unemployment fund is still $20 billion in debt to the federal government after the state took out loans to cover pandemic benefits, costing taxpayers $1 billion in annual interest — more than the state spends on child welfare. Now, after years of ignoring calls to modernize the state’s 1980s-era unemployment tax code, the system is on track to lose $2 billion a year as it fails to bring in enough revenue to cover unemployment expenses, according to the report.\u003c/p>\n\u003cp>The Legislative Analyst’s Office, which provides fiscal and policy advice to state lawmakers, says the state needs to bring unemployment taxes in line with other states to cover the deficit.\u003c/p>\n\u003cp>“This is entirely avoidable,” said LAO policy analyst Chas Alamo.\u003c/p>\n\u003cfigure id=\"attachment_12016645\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016645 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg\" alt=\"\" width=\"1200\" height=\"1500\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-800x1000.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-1020x1275.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_04-160x200.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Kim Tanner at her home in Carlsbad. \u003ccite>( Adriana Heldiz/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The recommendations could force a reckoning for lawmakers caught between business and labor advocates. Business groups have fought tax increases, favoring California’s current lowest-in-the-nation unemployment tax base. Labor groups argue that taxes must go up to stabilize the system. Then, they say, lawmakers should evaluate measures to expand which workers are eligible for unemployment or raise California’s $450-a-week maximum payment, which is also lower than many other states.\u003c/p>\n\u003cp>What happens next will be one test of how legislative leaders respond to voters’ rebuke of Democratic leadership nationwide, with the Legislature’s Democratic leadership pledging to do more to make California a less expensive place to live.\u003c/p>\n\u003cp>Meanwhile, the EDD has already secured funding for an unprecedented five-year, $1.2 billion effort called EDDNext to finally modernize the call centers, software and websites that power the state’s job safety net — a more ambitious version of past modernization efforts that crumbled during the pandemic.\u003c/p>\n\u003cp>Whether or not history will repeat itself is complicated by unanswered questions about what went wrong at the EDD during the pandemic and how the state scrambled to recover.\u003c/p>\n\u003cp>Former California labor chief Julie Su went on to become acting U.S. labor secretary and one of the longest-unconfirmed presidential nominees in history, thanks in part to criticism over unemployment fraud.\u003c/p>\n\u003cp>Gov. Gavin Newsom’s administration has denied CalMatters’ repeated requests for internal records from this period, citing an exemption that allows the governor to keep his communications secret if he chooses.\u003c/p>\n\u003ch2>The fraud factor\u003c/h2>\n\u003cp>During the pandemic, a wide range of fraud schemes hit the unemployment system at once. Global hackers used large-scale identity theft. Low-level social media scammers and prison inmates adopted fake names to file for benefits under emergency federal programs that waived normal identity checks. Debit card scammers cloned insecure EDD cards then run by Bank of America and drained the accounts.\u003c/p>\n\u003cp>Millions of real California workers got caught up in the mess, state audits found. Some saw their EDD accounts flagged as suspicious due to clerical errors, communication failures or faulty fraud software. Laid-off workers saw EDD debit cards overdrawn by thousands of dollars or cut off as the bank and the state scrambled to rein in fraud.\u003c/p>\n\u003cp>California and other states were partially let off the hook when the federal government agreed to absorb the bulk of the billions lost to fraud in emergency programs. After Bank of America pulled out of the unemployment business last year, the EDD tried to turn the page on debit card fraud by hiring Georgia finance tech company Money Network to take over.\u003c/p>\n\u003cp>The scope and details of the current fraud that workers allege isn’t clear. State auditors and financial regulators haven’t analyzed it; lawsuits and regulatory complaints only show that money disappeared from workers’ accounts, not how it was taken.\u003c/p>\n\u003cp>The Consumer Financial Protection Bureau, which previously fined Bank of America $100 million over what it called “botched” pandemic unemployment payments, declined to answer questions about new complaints. The bureau’s public records show that Californians have filed 149 complaints against Money Network since 2022, when the company first started running a different state debit card program, with 101 complaints mentioning government cards.\u003c/p>\n\u003cp>Money Network said in a statement that “only a small percentage of EDD recipients have reported suspected fraud” and that anyone concerned should “call the number listed on the back of their card.”\u003c/p>\n\u003cp>The EDD and Money Network also now allow direct deposit, giving people the option of skipping debit cards altogether. Since direct deposit launched in June, about 15% of new applicants have opted for debit cards, the EDD said in a statement. The agency could not immediately say how many of its hundreds of thousands of existing customers still use debit cards.\u003c/p>\n\u003cp>“Anyone who suspects they are a victim of fraud should take steps to protect themselves and file a fraud report,” the EDD said in a statement.\u003c/p>\n\u003cfigure id=\"attachment_12016647\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016647 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg\" alt=\"\" width=\"1200\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/101124_Kim-Tanner-EDD_AH_CM_17-160x107.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A flyer for identity theft resources and information sits on top of other documentation related to Kim Tanner’s financial fraud case on her desk at her home in Carlsbad on Oct. 11, 2024. \u003ccite>( Adriana Heldiz/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Lea Bitton was still reeling from a high-risk pregnancy when it happened to her.\u003c/p>\n\u003cp>One evening in June, the Orange County resident logged into her Money Network disability account and realized that $4,000 was missing. She relied on the EDD money to cover her family’s costs during parental leave.\u003c/p>\n\u003cp>Someone Bitton didn’t know had hacked into her account, according to a lawsuit she filed against Money Network. Similar to Tanner’s case in Carlsbad, a new electronic transfer was set up for someone with a different name and bank account, and Bitton was never asked to authorize the change before the money disappeared.\u003c/p>\n\u003cp>Matthew Loker, Bitton’s attorney, said the fraud appears similar to some EDD debit card fraud cases that he handled during the pandemic.\u003c/p>\n\u003cp>“It’s deja vu a little bit,” Loker said. “It’s a difficult problem, but it shouldn’t be the consumers who are left holding the bag.”\u003c/p>\n\u003cp>If fraud occurs once unemployment or disability money has already been transferred from the EDD to Money Network, the state’s contract says that Money Network is responsible for investigating and reimbursing clients if necessary. However, some people with EDD Money Network debit cards say that it isn’t always easy to figure out how to start that process.\u003c/p>\n\u003cp>In Los Angeles, Greg Zekowski filed for unemployment while in between film projects. He hadn’t even used his EDD Money Network debit card yet, he said, when he logged into the online account and saw several unfamiliar charges to Uber and other retailers.\u003c/p>\n\u003cp>He called Money Network. “Their response was, ‘The problem is EDD,’” Zekowski said.\u003c/p>\n\u003cp>So he called the EDD: “Their response was, ‘It’s all them.’”\u003c/p>\n\u003cp>The EDD and its contractors aren’t alone. The state’s food assistance and college financial aid programs are also among the many financial systems facing mounting fraud risks.\u003c/p>\n\u003cp>One broader challenge is how few financial institutions bid on government benefit projects. The lack of options puts more pressure on agencies working to secure debit cards and other payments, according to a 2023 report by the Consumer Financial Protection Bureau.\u003c/p>\n\u003cp>“Providers may face minimal competitive pressure from program innovation, new entrants, or customer choice,” the report authors wrote, “which may exacerbate or cause the issues with fees and customer service that benefits recipients face.”\u003c/p>\n\u003cp>A financial cliff\u003cbr>\nWhile the EDD and the people who rely on it play whack-a-mole with fraud, California has big decisions to make about the future of the state’s job safety net.\u003c/p>\n\u003cp>If the state continues to do nothing, the LAO projected this week, it will have no unemployment reserves and become even more reliant on loans from the federal government to weather future recessions, likely costing taxpayers billions more in interest.\u003c/p>\n\u003cp>Or the state can bite the bullet, as many others have, and change the way it pays for unemployment.\u003c/p>\n\u003cfigure id=\"attachment_12016648\" class=\"wp-caption alignnone\" style=\"max-width: 1200px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-12016648 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg\" alt=\"\" width=\"1200\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03.jpg 1200w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/12/011022-EDD-Sacramento-MG-CM-03-160x107.jpg 160w\" sizes=\"(max-width: 1200px) 100vw, 1200px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The offices of the Employment Development Department in Sacramento. \u003ccite>(Miguel Gutierrez Jr./CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>First, the LAO recommends that businesses pay a flat 1.9% unemployment tax while digging out of debt. California companies also currently only pay unemployment taxes on the first $7,000 a worker earns each year. Instead, the LAO recommends taxing employers on workers’ first $46,800 in earnings — higher than some neighbors like Nevada but lower than Washington, Idaho and Oregon.\u003c/p>\n\u003cp>“We understand that the scope of the recommendations that we’re putting forward in this report are significant,” said LAO analyst Ann Hollingshead. “This is just an honest reflection of the severity of the underlying problems in the system.”\u003c/p>\n\u003cp>State lawmakers last revamped unemployment taxes in 1984. And businesses are already voicing opposition to temporary tax hikes to pay down California’s deep federal debt. One bill to recalibrate how the system is paid for — raising unemployment taxes to eventually increase weekly benefits — died in committee this year.\u003c/p>\n\u003cp>Robert Moutrie, a policy advocate for the California Chamber of Commerce, said that the business group is still reviewing the details of the LAO proposal. In the past, the Chamber has favored tightening unemployment eligibility to reduce benefit payments, labeling any form of tax increases and proposals to expand the unemployment system “job killers.”\u003c/p>\n\u003cp>Daniela Urban, executive director of the Sacramento Center for Workers’ Rights, said there is broad agreement on how unstable the current situation is but discord on where to go from here. She and other labor advocates say that unemployment is one area where California businesses have long underpaid compared to other states and that the system has not kept up with non-traditional jobs and increasing costs of living.\u003c/p>\n\u003cp>“We’re in a huge hole, and that’s not financially acceptable,” Urban said. “But how and when to make those changes, I think, is what the contention is.”\u003c/p>\n\u003cp>In addition to the funding hole, the pandemic revealed other problems at EDD. Tech systems buckled: jammed call centers, spotty online accounts and a patchwork behind-the-scenes process for tracking unemployment claims. The agency is currently overhauling these systems with EDDNext.\u003c/p>\n\u003cp>Last year, the agency hired Salesforce to remake the MyEDD online system that workers use to manage their accounts. It brought in Amazon Web Services to update and integrate EDD phone systems that left as many as 40 million calls a month unanswered during the pandemic.\u003c/p>\n\u003cp>Early next year, the state will award a contract for the biggest chunk of the project — a new central system for EDD personnel to manage claims, which comes with more than 600 pages of specifications.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“We are making tremendous investments in modernizing EDD, and the work is going well,” the agency said in a statement.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"slug": "newsom-faces-backlash-for-plan-to-cut-in-home-care-for-undocumented-disabled-adults",
"title": "Newsom Faces Backlash for Plan to Cut In-Home Care for Undocumented Disabled Adults",
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"headTitle": "Newsom Faces Backlash for Plan to Cut In-Home Care for Undocumented Disabled Adults | KQED",
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"content": "\u003cp>Gov. Gavin Newsom vowed he would not fix the state’s budget deficit by removing health insurance from low-income adults living in the country without legal permission, calling the state’s policy “something I believe in.”\u003c/p>\n\u003cp>But Newsom would eliminate an important health benefit for some low-income immigrants with disabilities, angering his allies who are now accusing the second-term governor of breaking his word.\u003c/p>\n\u003cp>California was one of the first states to give free health insurance to all low-income adults \u003ca href=\"https://apnews.com/article/california-medicaid-expansion-undocumented-immigrants-34d8deb2186e9195b253f499e81a3d77\">regardless of their immigration status\u003c/a>. The multibillion-dollar project, completed in January, made more than 1 million people eligible for California’s Medicaid program, including many people who had never before had health insurance.\u003c/p>\n\u003cp>Now, just five months later and with California facing an estimated \u003ca href=\"https://apnews.com/article/california-budget-deficit-gov-gavin-newsom-8f502d57d00d551c0b6b6331367f7a25#:~:text=Officially%2C%20Newsom%20said%20the%20state's,Legislature%20agreed%20to%20in%20March.\">$45 billion deficit\u003c/a>, Newsom wants the state to stop paying for caregivers to come to the homes of some disabled people — who are living in the country without legal permission — to help them with cooking, cleaning and other tasks so they can stay out of nursing homes. Everyone else would keep that benefit.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The Newsom administration said this would save about $94 million and impact fewer than 3,000 people out of the more than 15 million enrolled in the state’s Medicaid program, known as Medi-Cal. However, eliminating the benefit would also prevent thousands more from becoming eligible in the future.\u003c/p>\n\u003cp>Newom’s proposal “is a betrayal,” said David Kane, an attorney with the Western Center on Law and Poverty. Ronald Coleman Baeza, managing policy director for California Pan-Ethnic Health Network, called it “indefensible” and compared the proposal to a notorious ballot proposition from the 1990s that sought to bar immigrants from accessing government assistance programs.\u003c/p>\n\u003cfigure id=\"attachment_11988527\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11988527 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1707\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-scaled.jpg 2560w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-2048x1365.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1920x1280.jpg 1920w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Marvin Estela Pineda poses for a photo at her home in Madera, Madera County, on Thursday, May 30, 2024. \u003ccite>(Gary Kazanjian/AP Photo)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“I think it could move us back in the sense of treating undocumented as different,” said state Sen. Maria Elena Durazo, a Democrat from Los Angeles who has pushed for the Medicaid expansion for years.\u003c/p>\n\u003cp>Newsom’s proposal for immigrants would impact a benefit known as in-home supportive services, which are becoming more expensive for the state to provide. The average hourly wage for caregivers has gone up 6% since 2014. And starting this year, with some emergency federal funding provided during the pandemic expiring, there have been cost increases of about $200 million.\u003c/p>\n\u003cp>Once people qualify for the program, they get to hire their own caregiver. It’s often a relative, meaning the program often acts as financial assistance for families.\u003c/p>\n\u003cp>Marvin Estela Pineda, a 42-year-old woman originally from El Salvador who now lives in California’s Central Valley, lost her eyesight at 30 because of glaucoma. She started getting in-home supportive services earlier this year.\u003c/p>\n\u003cp>Her daughter, Mayde Pineda, said the government has been paying her $16.50 per hour for a total of 84 hours a month to care for her mother, which includes things like cooking, cleaning and laundry. Mayde Pineda, 22, said the money helped stabilize the family financially while she finished college.\u003c/p>\n\u003cfigure id=\"attachment_11988531\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11988531 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1707\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-scaled.jpg 2560w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-2048x1365.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1920x1280.jpg 1920w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Marvin Estela Pineda, holding a mirror, gets makeup applied by her daughter Mayde at their home in Madera, on Thursday, May 30, 2024. \u003ccite>(Gary Kazanjian/AP Photo)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Without (this program), I won’t be able to care for her without significant hardships,” Mayde Pineda said.\u003c/p>\n\u003cp>The California Department of Social Services, which administers the program, said it would work “to mitigate any negative impact to currently assisted individuals,” including helping them find other government-funded programs that could provide similar services. One option would be Medi-Cal’s community-based adult services program, which pays for things like personal care, food and professional nursing services.\u003c/p>\n\u003cp>Asked for comment on his proposal, the governor’s office pointed to remarks Newsom made earlier this month when he announced his budget plan that included an array of painful cuts.\u003c/p>\n\u003cp>“We don’t find any joy in this — but we’ve got to do it, we have to be responsible. We have to be accountable. We have to balance the budget,” Newsom said.[aside postID=news_11979626 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2024/03/SAUL-PEDROZA-26-KQED-1020x680.jpg']Newsom for much of his tenure has basked in the praises of progressives as he used a string of \u003ca href=\"https://apnews.com/article/immigration-california-gavin-newsom-5aa5ab19800a5e91c209ff1268ac40bc\">historic surpluses\u003c/a> to expand government services. However, back-to-back multibillion-dollar deficits are forcing Newsom to make some hard choices that have put him on a collision course with some of his most vocal supporters.\u003c/p>\n\u003cp>Navigating these conflicts will be critical for Newsom, who has been building his national profile ahead of a potential presidential campaign. So far, Newsom has been moving quickly to address them. When the state’s largest teachers union ran ads \u003ca href=\"https://apnews.com/article/california-budget-deficit-schools-newsom-teachers-union-e8de3476bfdec82f916b54223d9bf061\">criticizing him\u003c/a> for his proposed cuts to education, Newsom struck a deal with them that resolved much of their concerns. That deal still must be approved by the state Legislature.\u003c/p>\n\u003cp>Other negotiations will be more difficult. Newsom’s health care proposal for immigrants is just one of many proposed cuts across the state’s wide array of social services programs.\u003c/p>\n\u003cp>The state Legislature, which is controlled by Democrats, plans to pass its version of the budget by June 15. This plan would restore nearly all of those cuts, including the health care cuts for some immigrants. It does this by increasing a temporary tax hike on businesses while also slashing about $1 billion from the state’s prison budget.\u003c/p>\n\u003cp>“We have ensured that the budget is not balanced on our most vulnerable populations,” said Assemblymember Corey Jackson, a Democrat from Moreno Valley.\u003c/p>\n\u003cp>Newsom and legislative leaders will negotiate over the next few weeks on a final spending plan, with the goal of passing a budget around the start of the new fiscal year on July 1. While the Legislature votes on the budget, Newsom has a lot of influence. He decides whether to sign the budget into law. California lawmakers have rarely ever overturned a governor’s veto.\u003c/p>\n\u003cp>\u003c/p>\n",
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"excerpt": "Gov. Gavin Newsom faces criticism for proposing to cut a Medicaid benefit that provides in-home caregivers for some disabled immigrants. Advocates feel betrayed, but Newsom argues the budget requires difficult decisions.",
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"title": "Newsom Faces Backlash for Plan to Cut In-Home Care for Undocumented Disabled Adults | KQED",
"description": "Gov. Gavin Newsom faces criticism for proposing to cut a Medicaid benefit that provides in-home caregivers for some disabled immigrants. Advocates feel betrayed, but Newsom argues the budget requires difficult decisions.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Gov. Gavin Newsom vowed he would not fix the state’s budget deficit by removing health insurance from low-income adults living in the country without legal permission, calling the state’s policy “something I believe in.”\u003c/p>\n\u003cp>But Newsom would eliminate an important health benefit for some low-income immigrants with disabilities, angering his allies who are now accusing the second-term governor of breaking his word.\u003c/p>\n\u003cp>California was one of the first states to give free health insurance to all low-income adults \u003ca href=\"https://apnews.com/article/california-medicaid-expansion-undocumented-immigrants-34d8deb2186e9195b253f499e81a3d77\">regardless of their immigration status\u003c/a>. The multibillion-dollar project, completed in January, made more than 1 million people eligible for California’s Medicaid program, including many people who had never before had health insurance.\u003c/p>\n\u003cp>Now, just five months later and with California facing an estimated \u003ca href=\"https://apnews.com/article/california-budget-deficit-gov-gavin-newsom-8f502d57d00d551c0b6b6331367f7a25#:~:text=Officially%2C%20Newsom%20said%20the%20state's,Legislature%20agreed%20to%20in%20March.\">$45 billion deficit\u003c/a>, Newsom wants the state to stop paying for caregivers to come to the homes of some disabled people — who are living in the country without legal permission — to help them with cooking, cleaning and other tasks so they can stay out of nursing homes. Everyone else would keep that benefit.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The Newsom administration said this would save about $94 million and impact fewer than 3,000 people out of the more than 15 million enrolled in the state’s Medicaid program, known as Medi-Cal. However, eliminating the benefit would also prevent thousands more from becoming eligible in the future.\u003c/p>\n\u003cp>Newom’s proposal “is a betrayal,” said David Kane, an attorney with the Western Center on Law and Poverty. Ronald Coleman Baeza, managing policy director for California Pan-Ethnic Health Network, called it “indefensible” and compared the proposal to a notorious ballot proposition from the 1990s that sought to bar immigrants from accessing government assistance programs.\u003c/p>\n\u003cfigure id=\"attachment_11988527\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11988527 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1707\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-scaled.jpg 2560w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-2048x1365.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173581917-1920x1280.jpg 1920w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Marvin Estela Pineda poses for a photo at her home in Madera, Madera County, on Thursday, May 30, 2024. \u003ccite>(Gary Kazanjian/AP Photo)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“I think it could move us back in the sense of treating undocumented as different,” said state Sen. Maria Elena Durazo, a Democrat from Los Angeles who has pushed for the Medicaid expansion for years.\u003c/p>\n\u003cp>Newsom’s proposal for immigrants would impact a benefit known as in-home supportive services, which are becoming more expensive for the state to provide. The average hourly wage for caregivers has gone up 6% since 2014. And starting this year, with some emergency federal funding provided during the pandemic expiring, there have been cost increases of about $200 million.\u003c/p>\n\u003cp>Once people qualify for the program, they get to hire their own caregiver. It’s often a relative, meaning the program often acts as financial assistance for families.\u003c/p>\n\u003cp>Marvin Estela Pineda, a 42-year-old woman originally from El Salvador who now lives in California’s Central Valley, lost her eyesight at 30 because of glaucoma. She started getting in-home supportive services earlier this year.\u003c/p>\n\u003cp>Her daughter, Mayde Pineda, said the government has been paying her $16.50 per hour for a total of 84 hours a month to care for her mother, which includes things like cooking, cleaning and laundry. Mayde Pineda, 22, said the money helped stabilize the family financially while she finished college.\u003c/p>\n\u003cfigure id=\"attachment_11988531\" class=\"wp-caption aligncenter\" style=\"max-width: 2560px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11988531 size-full\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1707\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-scaled.jpg 2560w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-2048x1365.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/AP24152173841689-1920x1280.jpg 1920w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\">\u003cfigcaption class=\"wp-caption-text\">Marvin Estela Pineda, holding a mirror, gets makeup applied by her daughter Mayde at their home in Madera, on Thursday, May 30, 2024. \u003ccite>(Gary Kazanjian/AP Photo)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Without (this program), I won’t be able to care for her without significant hardships,” Mayde Pineda said.\u003c/p>\n\u003cp>The California Department of Social Services, which administers the program, said it would work “to mitigate any negative impact to currently assisted individuals,” including helping them find other government-funded programs that could provide similar services. One option would be Medi-Cal’s community-based adult services program, which pays for things like personal care, food and professional nursing services.\u003c/p>\n\u003cp>Asked for comment on his proposal, the governor’s office pointed to remarks Newsom made earlier this month when he announced his budget plan that included an array of painful cuts.\u003c/p>\n\u003cp>“We don’t find any joy in this — but we’ve got to do it, we have to be responsible. We have to be accountable. We have to balance the budget,” Newsom said.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Newsom for much of his tenure has basked in the praises of progressives as he used a string of \u003ca href=\"https://apnews.com/article/immigration-california-gavin-newsom-5aa5ab19800a5e91c209ff1268ac40bc\">historic surpluses\u003c/a> to expand government services. However, back-to-back multibillion-dollar deficits are forcing Newsom to make some hard choices that have put him on a collision course with some of his most vocal supporters.\u003c/p>\n\u003cp>Navigating these conflicts will be critical for Newsom, who has been building his national profile ahead of a potential presidential campaign. So far, Newsom has been moving quickly to address them. When the state’s largest teachers union ran ads \u003ca href=\"https://apnews.com/article/california-budget-deficit-schools-newsom-teachers-union-e8de3476bfdec82f916b54223d9bf061\">criticizing him\u003c/a> for his proposed cuts to education, Newsom struck a deal with them that resolved much of their concerns. That deal still must be approved by the state Legislature.\u003c/p>\n\u003cp>Other negotiations will be more difficult. Newsom’s health care proposal for immigrants is just one of many proposed cuts across the state’s wide array of social services programs.\u003c/p>\n\u003cp>The state Legislature, which is controlled by Democrats, plans to pass its version of the budget by June 15. This plan would restore nearly all of those cuts, including the health care cuts for some immigrants. It does this by increasing a temporary tax hike on businesses while also slashing about $1 billion from the state’s prison budget.\u003c/p>\n\u003cp>“We have ensured that the budget is not balanced on our most vulnerable populations,” said Assemblymember Corey Jackson, a Democrat from Moreno Valley.\u003c/p>\n\u003cp>Newsom and legislative leaders will negotiate over the next few weeks on a final spending plan, with the goal of passing a budget around the start of the new fiscal year on July 1. While the Legislature votes on the budget, Newsom has a lot of influence. He decides whether to sign the budget into law. California lawmakers have rarely ever overturned a governor’s veto.\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>",
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"slug": "california-disability-workers-raises-at-risk-as-gov-newsom-faces-deficit",
"title": "California Disability Workers’ Raises at Risk as Gov. Newsom Faces Deficit",
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"headTitle": "California Disability Workers’ Raises at Risk as Gov. Newsom Faces Deficit | KQED",
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"content": "\u003cp>Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.\u003c/p>\n\u003cp>Citing California’s budget deficit, the Democratic governor wants to save around \u003ca href=\"https://abgt.assembly.ca.gov/system/files/2024-02/asm-budget-sub-2-agenda-feb-28-2024-dds-and-dor.pdf#page=20\">$613 million\u003c/a> in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.\u003c/p>\n\u003cp>Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the \u003ca href=\"https://www.dds.ca.gov/transparency/laws-regulations/lanterman-act-and-related-laws/\">Lanterman Act\u003c/a>, California’s landmark law that says the state must provide services and resources to people with disabilities and their families.\u003c/p>\n\u003cp>Newsom is “breaking a promise,” says Felisa Strickland, 60, who has been searching for more than a year for a day program for her 23-year-old daughter, Lily, who has autism and cerebral palsy. “It’s creating a lot of physical and mental health problems for people, and it’s a lot of undue stress on aging parent caregivers like myself.”\u003c/p>\n\u003cp>Disability care workers, known as direct support professionals, provide daily, hands-on caregiving to help children and adults with intellectual and developmental disabilities, such as autism, cerebral palsy, and epilepsy, remain independent and integrated into their communities.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In California, \u003ca href=\"https://www.gov.ca.gov/2024/03/01/governor-newsom-proclaims-developmental-disabilities-awareness-month/\">more than 400,000 people\u003c/a> with disabilities need accommodation, and this population, along with seniors, is increasing. It’s unclear how big the worker shortage is because the state hasn’t released workforce data. As the demand for these workers grows generally, \u003ca href=\"https://www.chcf.org/wp-content/uploads/2022/12/CaliforniaDirectCareWorkforce.pdf\">experts predict\u003c/a> a shortage of between 600,000 and 3.2 million direct care workers by 2030.\u003c/p>\n\u003cp>Advocates say California pays most providers from \u003ca href=\"https://thearcca.org/direct-support-professionals-overlooked-for-wage-increases-by-governor-and-legislature/#:~:text=Meanwhile%2C%20California's%20100%2C000%20direct%20support,without%20any%20guarantee%20of%20increases\">$16 to $20 an hour\u003c/a>, which meets the state’s minimum wage but falls short of what some economists consider a \u003ca href=\"https://livingwage.mit.edu/states/06\">living wage\u003c/a>. In 2021, the state committed to raising wages after identifying a \u003ca href=\"https://www.burnshealthpolicy.com/wp-content/uploads/2019/03/DDS-Vendor-Rate-Study-Report.pdf#=page8\">$1.8 billion gap\u003c/a> between the rates received by nonprofits that contract with the state to provide care and the rates deemed adequate.\u003c/p>\n\u003cp>[aside postID=\"news_11980719,news_11984163\" label=\"Related Stories\"]Thus far, the state has provided around half that total, most of which has gone to raising wages and benefits. Workers had been expecting one more increase of $2–$4 an hour in July until Newsom proposed a delay.\u003c/p>\n\u003cp>Also, nonprofits say California has made it harder to compete for workers after raising wages in other service and health industries. Newsom approved a \u003ca href=\"https://www.dir.ca.gov/dlse/Fast-Food-Minimum-Wage-FAQ.htm\">$20 minimum wage for fast-food workers\u003c/a> that went into effect in April, and he struck a deal last year with unions and hospitals to begin raising health care workers’ wages to a minimum of \u003ca href=\"https://kffhealthnews.org/news/article/california-lawmakers-approve-nation-leading-25-minimum-wage-for-health-workers/\">$25 an hour\u003c/a>.\u003c/p>\n\u003cp>Ricardo Zegri says Taco Bell would pay him more than the $19 an hour he makes as a disability care worker in a supervisory position.\u003c/p>\n\u003cp>“Every paycheck, it’s a discussion at home about what bills we need to prioritize and whether it’s time to start looking for work that pays more,” says Zegri, who works a second job as a musician in the San Francisco Bay Area.\u003c/p>\n\u003cfigure id=\"attachment_11984827\" class=\"wp-caption aligncenter\" style=\"max-width: 2083px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11984827\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg\" alt='A woman wearing a hat, glasses and a pink shirt holds a sign in from of her that reads \"Reject the Guts\" with a stop sign at the bottom.' width=\"2083\" height=\"2560\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg 2083w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-800x983.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1020x1254.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-160x197.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1250x1536.jpg 1250w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1666x2048.jpg 1666w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1920x2360.jpg 1920w\" sizes=\"(max-width: 2083px) 100vw, 2083px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Gov. Gavin Newsom has proposed delaying pay increases for disability care workers, but advocates warn it would increase turnover and vacancies, leaving thousands of people with disabilities without critical services at home and in residential facilities. \u003ccite>(Vanessa G. Sánchez/KFF Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Newsom wants \u003ca href=\"https://ebudget.ca.gov/2024-25/pdf/BudgetSummary/HealthandHumanServices.pdf\">to preserve key health initiatives\u003c/a>, including the state expansion of Medi-Cal to low-income immigrants regardless of legal status, and CalAIM, an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider. However, the rate delay for providing disability care is the largest savings in the Health and Human Services budget as Newsom and legislative leaders look to \u003ca href=\"https://www.latimes.com/california/story/2024-04-04/newsom-and-democratic-lawmakers-release-17b-plan-to-cut-budget\">cuts, delays, and shifts in funding\u003c/a> to close a deficit estimated between \u003ca href=\"https://www.latimes.com/california/story/2024-03-21/newsom-and-lawmakers-announce-plan-to-cut-at-least-12-billion-off-deficit-with-no-details\">$38 billion\u003c/a> and \u003ca href=\"https://lao.ca.gov/Publications/Report/4850?utm_source=substack&utm_medium=email\">$73 billion\u003c/a>.\u003c/p>\n\u003cp>Dozens of legislators from both parties are asking Newsom and legislative leaders to preserve the increase. Assemblymember Stephanie Nguyen, a Democrat from Elk Grove, signed a \u003ca href=\"https://californiahealthline.org/wp-content/uploads/sites/3/2024/04/Disability-Service-Provider-Rate-Budget-Request-Letter.pdf\">letter supporting the raise\u003c/a>. Although lawmakers are negotiating with the administration, she says reversing the decision to delay the pay boost is unlikely. Everybody “has to take a hit somewhere,” Nguyen says.\u003c/p>\n\u003cp>Krystyne McComb, a spokesperson for the Department of Developmental Services, says that even though the state would lose federal matching funds this year, it would resume drawing funds when it reinstates the plan in 2025.\u003c/p>\n\u003cp>The department did not respond to questions about how it plans to retain workers and fill vacancies.\u003c/p>\n\u003cp>Newsom’s proposal risks a collapse of the disability service system, which would violate the Lanterman Act and make the state vulnerable to lawsuits, says Jordan Lindsey, executive director of the Arc of California, a statewide disability rights advocacy organization.\u003c/p>\n\u003cp>Families say the state has already fallen short of the services they need. Strickland quit her job to care for Lily, the Santa Barbara mother, says. “It’s not reasonable to expect someone to care for somebody else 24 hours a day, seven days a week,” she says.\u003c/p>\n\u003cp>Lily graduated from high school and, in 2022, completed a program that prepares youth with disabilities to transition into adult life. She had been looking forward to joining a day program to make new friends but has yet to find a spot. And due to a shortage of workers, Lily receives only four hours a week at home with a provider, who is paid around $16 an hour.\u003c/p>\n\u003cp>When Lily hangs out with the provider, her demeanor changes to the happy person she used to be, Strickland says.\u003c/p>\n\u003cp>“The system is already in crisis,” she says. “There are tons and tons of people that are sitting at home because there’s nowhere for them to go.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://kffhealthnews.org/about-us\">KFF Health News\u003c/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about\u003c/em> \u003ca href=\"https://www.kff.org/about-us\">KFF\u003c/a>.\u003c/p>\n\n",
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"title": "California Disability Workers’ Raises at Risk as Gov. Newsom Faces Deficit | KQED",
"description": "Families of people with disabilities say Gov. Gavin Newsom is reneging on a raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.",
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"headline": "California Disability Workers’ Raises at Risk as Gov. Newsom Faces Deficit",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.\u003c/p>\n\u003cp>Citing California’s budget deficit, the Democratic governor wants to save around \u003ca href=\"https://abgt.assembly.ca.gov/system/files/2024-02/asm-budget-sub-2-agenda-feb-28-2024-dds-and-dor.pdf#page=20\">$613 million\u003c/a> in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.\u003c/p>\n\u003cp>Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the \u003ca href=\"https://www.dds.ca.gov/transparency/laws-regulations/lanterman-act-and-related-laws/\">Lanterman Act\u003c/a>, California’s landmark law that says the state must provide services and resources to people with disabilities and their families.\u003c/p>\n\u003cp>Newsom is “breaking a promise,” says Felisa Strickland, 60, who has been searching for more than a year for a day program for her 23-year-old daughter, Lily, who has autism and cerebral palsy. “It’s creating a lot of physical and mental health problems for people, and it’s a lot of undue stress on aging parent caregivers like myself.”\u003c/p>\n\u003cp>Disability care workers, known as direct support professionals, provide daily, hands-on caregiving to help children and adults with intellectual and developmental disabilities, such as autism, cerebral palsy, and epilepsy, remain independent and integrated into their communities.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In California, \u003ca href=\"https://www.gov.ca.gov/2024/03/01/governor-newsom-proclaims-developmental-disabilities-awareness-month/\">more than 400,000 people\u003c/a> with disabilities need accommodation, and this population, along with seniors, is increasing. It’s unclear how big the worker shortage is because the state hasn’t released workforce data. As the demand for these workers grows generally, \u003ca href=\"https://www.chcf.org/wp-content/uploads/2022/12/CaliforniaDirectCareWorkforce.pdf\">experts predict\u003c/a> a shortage of between 600,000 and 3.2 million direct care workers by 2030.\u003c/p>\n\u003cp>Advocates say California pays most providers from \u003ca href=\"https://thearcca.org/direct-support-professionals-overlooked-for-wage-increases-by-governor-and-legislature/#:~:text=Meanwhile%2C%20California's%20100%2C000%20direct%20support,without%20any%20guarantee%20of%20increases\">$16 to $20 an hour\u003c/a>, which meets the state’s minimum wage but falls short of what some economists consider a \u003ca href=\"https://livingwage.mit.edu/states/06\">living wage\u003c/a>. In 2021, the state committed to raising wages after identifying a \u003ca href=\"https://www.burnshealthpolicy.com/wp-content/uploads/2019/03/DDS-Vendor-Rate-Study-Report.pdf#=page8\">$1.8 billion gap\u003c/a> between the rates received by nonprofits that contract with the state to provide care and the rates deemed adequate.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Thus far, the state has provided around half that total, most of which has gone to raising wages and benefits. Workers had been expecting one more increase of $2–$4 an hour in July until Newsom proposed a delay.\u003c/p>\n\u003cp>Also, nonprofits say California has made it harder to compete for workers after raising wages in other service and health industries. Newsom approved a \u003ca href=\"https://www.dir.ca.gov/dlse/Fast-Food-Minimum-Wage-FAQ.htm\">$20 minimum wage for fast-food workers\u003c/a> that went into effect in April, and he struck a deal last year with unions and hospitals to begin raising health care workers’ wages to a minimum of \u003ca href=\"https://kffhealthnews.org/news/article/california-lawmakers-approve-nation-leading-25-minimum-wage-for-health-workers/\">$25 an hour\u003c/a>.\u003c/p>\n\u003cp>Ricardo Zegri says Taco Bell would pay him more than the $19 an hour he makes as a disability care worker in a supervisory position.\u003c/p>\n\u003cp>“Every paycheck, it’s a discussion at home about what bills we need to prioritize and whether it’s time to start looking for work that pays more,” says Zegri, who works a second job as a musician in the San Francisco Bay Area.\u003c/p>\n\u003cfigure id=\"attachment_11984827\" class=\"wp-caption aligncenter\" style=\"max-width: 2083px\">\u003ca href=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11984827\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg\" alt='A woman wearing a hat, glasses and a pink shirt holds a sign in from of her that reads \"Reject the Guts\" with a stop sign at the bottom.' width=\"2083\" height=\"2560\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-scaled.jpg 2083w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-800x983.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1020x1254.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-160x197.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1250x1536.jpg 1250w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1666x2048.jpg 1666w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/Sign_01-1920x2360.jpg 1920w\" sizes=\"(max-width: 2083px) 100vw, 2083px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Gov. Gavin Newsom has proposed delaying pay increases for disability care workers, but advocates warn it would increase turnover and vacancies, leaving thousands of people with disabilities without critical services at home and in residential facilities. \u003ccite>(Vanessa G. Sánchez/KFF Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Newsom wants \u003ca href=\"https://ebudget.ca.gov/2024-25/pdf/BudgetSummary/HealthandHumanServices.pdf\">to preserve key health initiatives\u003c/a>, including the state expansion of Medi-Cal to low-income immigrants regardless of legal status, and CalAIM, an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider. However, the rate delay for providing disability care is the largest savings in the Health and Human Services budget as Newsom and legislative leaders look to \u003ca href=\"https://www.latimes.com/california/story/2024-04-04/newsom-and-democratic-lawmakers-release-17b-plan-to-cut-budget\">cuts, delays, and shifts in funding\u003c/a> to close a deficit estimated between \u003ca href=\"https://www.latimes.com/california/story/2024-03-21/newsom-and-lawmakers-announce-plan-to-cut-at-least-12-billion-off-deficit-with-no-details\">$38 billion\u003c/a> and \u003ca href=\"https://lao.ca.gov/Publications/Report/4850?utm_source=substack&utm_medium=email\">$73 billion\u003c/a>.\u003c/p>\n\u003cp>Dozens of legislators from both parties are asking Newsom and legislative leaders to preserve the increase. Assemblymember Stephanie Nguyen, a Democrat from Elk Grove, signed a \u003ca href=\"https://californiahealthline.org/wp-content/uploads/sites/3/2024/04/Disability-Service-Provider-Rate-Budget-Request-Letter.pdf\">letter supporting the raise\u003c/a>. Although lawmakers are negotiating with the administration, she says reversing the decision to delay the pay boost is unlikely. Everybody “has to take a hit somewhere,” Nguyen says.\u003c/p>\n\u003cp>Krystyne McComb, a spokesperson for the Department of Developmental Services, says that even though the state would lose federal matching funds this year, it would resume drawing funds when it reinstates the plan in 2025.\u003c/p>\n\u003cp>The department did not respond to questions about how it plans to retain workers and fill vacancies.\u003c/p>\n\u003cp>Newsom’s proposal risks a collapse of the disability service system, which would violate the Lanterman Act and make the state vulnerable to lawsuits, says Jordan Lindsey, executive director of the Arc of California, a statewide disability rights advocacy organization.\u003c/p>\n\u003cp>Families say the state has already fallen short of the services they need. Strickland quit her job to care for Lily, the Santa Barbara mother, says. “It’s not reasonable to expect someone to care for somebody else 24 hours a day, seven days a week,” she says.\u003c/p>\n\u003cp>Lily graduated from high school and, in 2022, completed a program that prepares youth with disabilities to transition into adult life. She had been looking forward to joining a day program to make new friends but has yet to find a spot. And due to a shortage of workers, Lily receives only four hours a week at home with a provider, who is paid around $16 an hour.\u003c/p>\n\u003cp>When Lily hangs out with the provider, her demeanor changes to the happy person she used to be, Strickland says.\u003c/p>\n\u003cp>“The system is already in crisis,” she says. “There are tons and tons of people that are sitting at home because there’s nowhere for them to go.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://kffhealthnews.org/about-us\">KFF Health News\u003c/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about\u003c/em> \u003ca href=\"https://www.kff.org/about-us\">KFF\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"slug": "families-fume-over-newsoms-veto-of-childrens-hearing-aid-bill",
"title": "Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill",
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"content": "\u003cp>Two of Johanna Wonderly’s four children depend on hearing aids, and the other two will probably need them in the future. At roughly $6,000 per child, the cost adds up quickly.\u003c/p>\n\u003cp>But the Roseville family can only afford them when Wonderly’s husband, Paul, is called to active duty for the California Army National Guard, because that’s when federal coverage kicks in. The family’s standard insurance does not cover hearing aids.\u003c/p>\n\u003cp>Her second oldest daughter, Cara, was born while Paul was working at his then-private-sector job as a bartender. His insurance denied their claim for a hearing aid. A state-run program for children with disabilities or chronic medical conditions said the family made too much money to qualify for help. The Wonderlys applied for assistance through a national non-profit and crossed their fingers.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Dr. Dylan Chan, director, Children’s Communication Center at UC San Francisco\"]‘It would be like being able to diagnose a child with asthma but not giving them an inhaler.’[/pullquote]“We were living paycheck-to-paycheck back then. We didn’t have savings if my husband lost his job, let alone pay for an unexpected $6,000 expense,” Johanna Wonderly said. “We were going to have to say ‘Sorry, Cara. You don’t get hearing aids.’”\u003c/p>\n\u003cp>The Legislature this year unanimously passed a measure that would have helped families like hers by \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240SB635\">requiring health insurers to cover hearing aids\u003c/a> for anyone under 21. Most private health insurance in California designates children’s hearing aids as cosmetic or elective devices.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But over the weekend \u003ca href=\"https://www.gov.ca.gov/wp-content/uploads/2023/10/SB-635-Veto.pdf\">Gov. Gavin Newsom vetoed the bill\u003c/a>, citing improvements made to an existing state program established in 2021 to help families afford hearing aids. It’s the second time Newsom has effectively blocked this legislation and pointed to the state’s Hearing Aid Coverage for Children Program as an alternative. Advocates and some legislators say that program has failed.\u003c/p>\n\u003cp>[aside postID=\"news_11963514,news_11964331,news_11963061\" label=\"Related Stories\"]In his veto message, Newsom cites concern about creating a costly precedent by adding benefits to the state’s Affordable Care Act insurance exchange, known as Covered California. A legislative analysis estimates the added cost at about $11 million.\u003c/p>\n\u003cp>Newsom also said improving access to children’s hearing aids remained a priority for his administration.\u003c/p>\n\u003cp>“We can, and we must, do better for these children and their families as we implement” the Hearing Aid Coverage for Children Program, the message said.\u003c/p>\n\u003cp>Children’s advocates say the program will never work.\u003c/p>\n\u003cp>“There’s been two years of oversight hearings on this program. It’s not working, so to double down on a failing program it’s not only harmful to children, it’s wasting, you know, millions of taxpayers dollars,” said Michelle Marciniak, co-founder of \u003ca href=\"https://letcakidshear.com/\">Let California Kids Hear\u003c/a>, a parent advocacy group that sponsored the legislation. Marciniak’s daughter lost partial hearing after a viral infection.\u003c/p>\n\u003ch2>Lifelong impact of hearing loss\u003c/h2>\n\u003cp>Research shows infants and children who cannot hear can develop permanent speech, language, and cognitive deficits. They quickly fall behind in school, suffering delayed reading comprehension and social and emotional problems. Those who get an assistive device like a \u003ca href=\"https://publications.aap.org/pediatrics/article/146/4/e20200557/79717/Kindergarten-Readiness-in-Children-Who-Are-Deaf-or?autologincheck=redirected\">hearing aid within the first six months\u003c/a> of life have much better outcomes.\u003c/p>\n\u003cp>“If you have a child that’s born with hearing loss and doesn’t get hearing aids until the age of 3 or 4, this kid is going to be delayed for the rest of their life,” said Dr. Daniela Carvalho, director of Rady Children’s Hospital-San Diego’s hearing program, who testified in support of the measure.\u003c/p>\n\u003cfigure id=\"attachment_11964611\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11964611\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg\" alt=\"A young white girl with a hearing aid and red shirt leans over a desk holding a pencil to a piece of paper.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-2048x1366.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1920x1280.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie, 9, works on her homework on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Dylan Chan, director of the Children’s Communication Center at UC San Francisco, said the impact on a child’s life is so profound that hospitals are required by state and federal law to test every newborn for hearing problems.\u003c/p>\n\u003cp>“But identifying kids with hearing loss does no good if we don’t have the ability to provide the appropriate interventions,” Chan said. “It would be like being able to diagnose a child with asthma but not giving them an inhaler.”\u003c/p>\n\u003cp>Carvalho said several of her patients’ families were waiting for the legislation to pass to be able to afford hearing aids.\u003c/p>\n\u003cp>“They have their hands tied. I mean it literally is a choice that the family needs to make. It’s a huge financial decision,” Carvalho said.\u003c/p>\n\u003ch2>Support for hearing aid bill\u003c/h2>\n\u003cp>Marciniak, the advocate who has helped lead the fight for coverage since 2019, said lawmakers brought the bill back this year because the Hearing Aid Coverage for Children Program has been ineffective since it launched in 2021.\u003c/p>\n\u003cp>“This is definitely a broken promise,” Marciniak said. “And it’s disappointing because they haven’t been willing to come to the table to solve this with us in a meaningful way.”\u003c/p>\n\u003cp>Most states already include hearing aid coverage in their insurance exchanges. Thirty-two states require private insurance to offer some level of coverage for kids’ hearing aids, including 27 that mandate it as a benefit under the Affordable Care Act. California only offers coverage to very low-income families through public insurance like Medi-Cal or the program for kids with disabilities, setting the income cap for a family of four around $40,000.\u003c/p>\n\u003cp>The state’s coverage gap leaves 20,000 kids and young adults whose families don’t qualify for low-income assistance, according to a \u003ca href=\"https://www.chbrp.org/sites/default/files/bill-documents/SB0/Abbreviated%20Analysis%20of%20SB%20635%20Hearing%20Aids%20FINAL%20060923.pdf\">California Health Benefits Review Program analysis for the Legislature\u003c/a>. That represents nearly half of all hearing aid users between the ages of 0 and 20.\u003c/p>\n\u003cp>In 2019 a similar bill passed unanimously and was sent to Newsom. At the time, former Santa Monica Democratic Assemblymember Richard Bloom, the bill author, told \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">CalMatters\u003c/a> that Newsom asked him to rescind the bill with a promise to create a budget fix.\u003c/p>\n\u003cp>That “fix” came in the form of the Hearing Aid Coverage for Children Program. The program, which received $16 million its first year, \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">distributed hearing aids to 39 children\u003c/a> and has been harshly criticized by legislators demanding accountability. Last year another budget allocation \u003ca href=\"https://calmatters.org/health/2022/09/children-hearing-aids/\">expanded eligibility to about 7,000 kids\u003c/a> and doubled the budget. Currently, \u003ca href=\"https://www.dhcs.ca.gov/services/HACCP/Pages/Partners/Program-Data.aspx\">255 children\u003c/a> — roughly half of all applicants — have gotten hearing aids, according to state data.\u003c/p>\n\u003cp>Parents say they can’t find providers who participate, the application process is lengthy and confusing, and resources are unavailable for people who don’t speak English.\u003c/p>\n\u003cfigure id=\"attachment_11964612\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11964612\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg\" alt=\"Three young white girls sit against a wall with an illustration while the middle child holds a baby.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1920x1280.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg 2000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left Caitlyn, Cassie, Carter and Cara in Roseville on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kasey Cain, a mom from Lincoln and board president of California Hands and Voices, said she spent nine months fighting red tape. She sent required paperwork to the program in a pre-addressed envelope from the state. It was returned as undeliverable.\u003c/p>\n\u003cp>“It was a nightmare. I started to receive calls that they were going to close my account because they never received the documents,” Cain said. “I don’t know why your self-addressed envelope doesn’t work.”\u003c/p>\n\u003cp>Eventually, she and her husband gave up and put the $2,500 charge on a credit card. They couldn’t wait any longer to update their 7-year-old son’s hearing aid. Later, when one of his hearing aids was replaced by a cochlear implant, insurance considered it a necessary medical device and covered it. The family was responsible for a $15 copay.\u003c/p>\n\u003cp>Newsom’s veto message said the Department of Health Care Services, which manages the hearing aid program, has developed an improvement plan that will be implemented over the next six months.\u003c/p>\n\u003cp>A representative from the Department of Health Care Services in a written statement said the department has moved its application process online and translated materials into 19 languages. Information about the program is also mailed to all parents’ whose children are identified with hearing loss at birth.\u003c/p>\n\u003ch2>California Democrats want to try again\u003c/h2>\n\u003cp>Sen. Caroline Menjivar, a Democrat from Burbank, co-authored this year’s measure with Democratic Sen. Anthony Portantino from Glendale.\u003c/p>\n\u003cp>“I’m not sure why we haven’t been able to pass it,” Menjivar said during the bill’s final floor vote. “We are behind close to 30 states that have already implemented this. Let’s be the next one.”\u003c/p>\n\u003cp>In a statement following the veto, Menjivar pledged to hold the administration accountable.\u003c/p>\n\u003cp>Wonderly, the mom of four, said it took 14 months for her eldest daughter Cassie’s hearing loss to get diagnosed. She worried that Cassie, who didn’t respond to sound and who had the limited eyesight normal for newborns, wouldn’t know who her parents were.\u003c/p>\n\u003cp>“Every night I fell asleep with my hand on my baby because I wanted her to know that she was secure, she was safe. That she knew that we were there for her,” Wonderly said.\u003c/p>\n\u003cp>Wonderly said eventually the national grant program paid for her second daughter’s hearing aids. But soon Cassie, now 9, will need an updated pair, and Wonderly’s two other children, ages 7 and 1, who also have hearing loss, will likely need hearing aids in the future.\u003c/p>\n\u003cp>The closest provider that participates in the Hearing Aid Coverage for Children Program is more than 100 miles away, Wonderly said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit \u003ca href=\"http://www.chcf.org/\">www.chcf.org\u003c/a> to learn more.\u003c/em>\u003c/p>\n\n",
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"excerpt": "More than 30 states require insurers to provide some level of coverage for kids’ hearing aids. California isn’t one of them, and Gov. Newsom for the second time has vetoed a bill to close that gap.",
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"title": "Families Fume Over Newsom’s Veto of Children’s Hearing Aid Bill | KQED",
"description": "More than 30 states require insurers to provide some level of coverage for kids’ hearing aids. California isn’t one of them, and Gov. Newsom for the second time has vetoed a bill to close that gap.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Two of Johanna Wonderly’s four children depend on hearing aids, and the other two will probably need them in the future. At roughly $6,000 per child, the cost adds up quickly.\u003c/p>\n\u003cp>But the Roseville family can only afford them when Wonderly’s husband, Paul, is called to active duty for the California Army National Guard, because that’s when federal coverage kicks in. The family’s standard insurance does not cover hearing aids.\u003c/p>\n\u003cp>Her second oldest daughter, Cara, was born while Paul was working at his then-private-sector job as a bartender. His insurance denied their claim for a hearing aid. A state-run program for children with disabilities or chronic medical conditions said the family made too much money to qualify for help. The Wonderlys applied for assistance through a national non-profit and crossed their fingers.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "‘It would be like being able to diagnose a child with asthma but not giving them an inhaler.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>“We were living paycheck-to-paycheck back then. We didn’t have savings if my husband lost his job, let alone pay for an unexpected $6,000 expense,” Johanna Wonderly said. “We were going to have to say ‘Sorry, Cara. You don’t get hearing aids.’”\u003c/p>\n\u003cp>The Legislature this year unanimously passed a measure that would have helped families like hers by \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240SB635\">requiring health insurers to cover hearing aids\u003c/a> for anyone under 21. Most private health insurance in California designates children’s hearing aids as cosmetic or elective devices.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But over the weekend \u003ca href=\"https://www.gov.ca.gov/wp-content/uploads/2023/10/SB-635-Veto.pdf\">Gov. Gavin Newsom vetoed the bill\u003c/a>, citing improvements made to an existing state program established in 2021 to help families afford hearing aids. It’s the second time Newsom has effectively blocked this legislation and pointed to the state’s Hearing Aid Coverage for Children Program as an alternative. Advocates and some legislators say that program has failed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>In his veto message, Newsom cites concern about creating a costly precedent by adding benefits to the state’s Affordable Care Act insurance exchange, known as Covered California. A legislative analysis estimates the added cost at about $11 million.\u003c/p>\n\u003cp>Newsom also said improving access to children’s hearing aids remained a priority for his administration.\u003c/p>\n\u003cp>“We can, and we must, do better for these children and their families as we implement” the Hearing Aid Coverage for Children Program, the message said.\u003c/p>\n\u003cp>Children’s advocates say the program will never work.\u003c/p>\n\u003cp>“There’s been two years of oversight hearings on this program. It’s not working, so to double down on a failing program it’s not only harmful to children, it’s wasting, you know, millions of taxpayers dollars,” said Michelle Marciniak, co-founder of \u003ca href=\"https://letcakidshear.com/\">Let California Kids Hear\u003c/a>, a parent advocacy group that sponsored the legislation. Marciniak’s daughter lost partial hearing after a viral infection.\u003c/p>\n\u003ch2>Lifelong impact of hearing loss\u003c/h2>\n\u003cp>Research shows infants and children who cannot hear can develop permanent speech, language, and cognitive deficits. They quickly fall behind in school, suffering delayed reading comprehension and social and emotional problems. Those who get an assistive device like a \u003ca href=\"https://publications.aap.org/pediatrics/article/146/4/e20200557/79717/Kindergarten-Readiness-in-Children-Who-Are-Deaf-or?autologincheck=redirected\">hearing aid within the first six months\u003c/a> of life have much better outcomes.\u003c/p>\n\u003cp>“If you have a child that’s born with hearing loss and doesn’t get hearing aids until the age of 3 or 4, this kid is going to be delayed for the rest of their life,” said Dr. Daniela Carvalho, director of Rady Children’s Hospital-San Diego’s hearing program, who testified in support of the measure.\u003c/p>\n\u003cfigure id=\"attachment_11964611\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11964611\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg\" alt=\"A young white girl with a hearing aid and red shirt leans over a desk holding a pencil to a piece of paper.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-2048x1366.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-15-scaled-1-1920x1280.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie, 9, works on her homework on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Dylan Chan, director of the Children’s Communication Center at UC San Francisco, said the impact on a child’s life is so profound that hospitals are required by state and federal law to test every newborn for hearing problems.\u003c/p>\n\u003cp>“But identifying kids with hearing loss does no good if we don’t have the ability to provide the appropriate interventions,” Chan said. “It would be like being able to diagnose a child with asthma but not giving them an inhaler.”\u003c/p>\n\u003cp>Carvalho said several of her patients’ families were waiting for the legislation to pass to be able to afford hearing aids.\u003c/p>\n\u003cp>“They have their hands tied. I mean it literally is a choice that the family needs to make. It’s a huge financial decision,” Carvalho said.\u003c/p>\n\u003ch2>Support for hearing aid bill\u003c/h2>\n\u003cp>Marciniak, the advocate who has helped lead the fight for coverage since 2019, said lawmakers brought the bill back this year because the Hearing Aid Coverage for Children Program has been ineffective since it launched in 2021.\u003c/p>\n\u003cp>“This is definitely a broken promise,” Marciniak said. “And it’s disappointing because they haven’t been willing to come to the table to solve this with us in a meaningful way.”\u003c/p>\n\u003cp>Most states already include hearing aid coverage in their insurance exchanges. Thirty-two states require private insurance to offer some level of coverage for kids’ hearing aids, including 27 that mandate it as a benefit under the Affordable Care Act. California only offers coverage to very low-income families through public insurance like Medi-Cal or the program for kids with disabilities, setting the income cap for a family of four around $40,000.\u003c/p>\n\u003cp>The state’s coverage gap leaves 20,000 kids and young adults whose families don’t qualify for low-income assistance, according to a \u003ca href=\"https://www.chbrp.org/sites/default/files/bill-documents/SB0/Abbreviated%20Analysis%20of%20SB%20635%20Hearing%20Aids%20FINAL%20060923.pdf\">California Health Benefits Review Program analysis for the Legislature\u003c/a>. That represents nearly half of all hearing aid users between the ages of 0 and 20.\u003c/p>\n\u003cp>In 2019 a similar bill passed unanimously and was sent to Newsom. At the time, former Santa Monica Democratic Assemblymember Richard Bloom, the bill author, told \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">CalMatters\u003c/a> that Newsom asked him to rescind the bill with a promise to create a budget fix.\u003c/p>\n\u003cp>That “fix” came in the form of the Hearing Aid Coverage for Children Program. The program, which received $16 million its first year, \u003ca href=\"https://calmatters.org/health/2022/08/childrens-hearing-aids/\">distributed hearing aids to 39 children\u003c/a> and has been harshly criticized by legislators demanding accountability. Last year another budget allocation \u003ca href=\"https://calmatters.org/health/2022/09/children-hearing-aids/\">expanded eligibility to about 7,000 kids\u003c/a> and doubled the budget. Currently, \u003ca href=\"https://www.dhcs.ca.gov/services/HACCP/Pages/Partners/Program-Data.aspx\">255 children\u003c/a> — roughly half of all applicants — have gotten hearing aids, according to state data.\u003c/p>\n\u003cp>Parents say they can’t find providers who participate, the application process is lengthy and confusing, and resources are unavailable for people who don’t speak English.\u003c/p>\n\u003cfigure id=\"attachment_11964612\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11964612\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg\" alt=\"Three young white girls sit against a wall with an illustration while the middle child holds a baby.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19-1920x1280.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/10/101223-Hearing-Aid-Veto-JYO-CM-19.jpg 2000w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">From left Caitlyn, Cassie, Carter and Cara in Roseville on Oct. 11, 2023. \u003ccite>(Jyotsana Bhamidipati/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Kasey Cain, a mom from Lincoln and board president of California Hands and Voices, said she spent nine months fighting red tape. She sent required paperwork to the program in a pre-addressed envelope from the state. It was returned as undeliverable.\u003c/p>\n\u003cp>“It was a nightmare. I started to receive calls that they were going to close my account because they never received the documents,” Cain said. “I don’t know why your self-addressed envelope doesn’t work.”\u003c/p>\n\u003cp>Eventually, she and her husband gave up and put the $2,500 charge on a credit card. They couldn’t wait any longer to update their 7-year-old son’s hearing aid. Later, when one of his hearing aids was replaced by a cochlear implant, insurance considered it a necessary medical device and covered it. The family was responsible for a $15 copay.\u003c/p>\n\u003cp>Newsom’s veto message said the Department of Health Care Services, which manages the hearing aid program, has developed an improvement plan that will be implemented over the next six months.\u003c/p>\n\u003cp>A representative from the Department of Health Care Services in a written statement said the department has moved its application process online and translated materials into 19 languages. Information about the program is also mailed to all parents’ whose children are identified with hearing loss at birth.\u003c/p>\n\u003ch2>California Democrats want to try again\u003c/h2>\n\u003cp>Sen. Caroline Menjivar, a Democrat from Burbank, co-authored this year’s measure with Democratic Sen. Anthony Portantino from Glendale.\u003c/p>\n\u003cp>“I’m not sure why we haven’t been able to pass it,” Menjivar said during the bill’s final floor vote. “We are behind close to 30 states that have already implemented this. Let’s be the next one.”\u003c/p>\n\u003cp>In a statement following the veto, Menjivar pledged to hold the administration accountable.\u003c/p>\n\u003cp>Wonderly, the mom of four, said it took 14 months for her eldest daughter Cassie’s hearing loss to get diagnosed. She worried that Cassie, who didn’t respond to sound and who had the limited eyesight normal for newborns, wouldn’t know who her parents were.\u003c/p>\n\u003cp>“Every night I fell asleep with my hand on my baby because I wanted her to know that she was secure, she was safe. That she knew that we were there for her,” Wonderly said.\u003c/p>\n\u003cp>Wonderly said eventually the national grant program paid for her second daughter’s hearing aids. But soon Cassie, now 9, will need an updated pair, and Wonderly’s two other children, ages 7 and 1, who also have hearing loss, will likely need hearing aids in the future.\u003c/p>\n\u003cp>The closest provider that participates in the Hearing Aid Coverage for Children Program is more than 100 miles away, Wonderly said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit \u003ca href=\"http://www.chcf.org/\">www.chcf.org\u003c/a> to learn more.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community",
"title": "Faced With Inaccessible Systems, SF's LightHouse Launches Vaccine Pop-Up for Disability Community",
"headTitle": "KQED News",
"content": "\u003cp>Finding a COVID-19 vaccine appointment near you in the Bay Area has been a challenging road for months now. And many disabled people are finding that both physical and online inaccessibility is putting up even more roadblocks between them and the vaccine.\u003c/p>\n\u003cp>As part of a community-led effort to connect disabled Californians with vaccine appointments, San Francisco nonprofit \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">LightHouse for the Blind and Visually Impaired is now providing fully accessible pop-up vaccination clinics\u003c/a> at their San Francisco headquarters each Friday until May 7.\u003c/p>\n\u003cp>These weekly clinics offer the COVID-19 vaccine by appointment to all members of the blind, low vision, extended disability community and their caregivers.\u003c/p>\n\u003cp>\"We're super happy that the city of San Francisco worked with us so that our site is available to all people with disabilities in the Bay Area and their assistants,\" LightHouse CEO Bryan Bashin told KQED's Brian Watt this week. Bashin said LightHouse is offering around 200 vaccine doses at each of these Friday pop-up clinics.\u003c/p>\n\u003cp>[aside postID=\"news_11855623\" hero=\"https://ww2.kqed.org/app/uploads/sites/10/2021/02/Vaccination-Prep-1020x680.jpg\"]LightHouse's Friday vaccination clinic at 1155 Market St. in San Francisco is open by appointment only. To make an appointment, call 628-652-2700. You'll speak to a member of San Francisco's city vaccination call center who will ask for some basic personal information and your health care provider details, and give you more accessibility details about the appointment process and what to expect at the pop-up clinic.\u003c/p>\n\u003cp>LightHouse's appointment line is staffed from 8:30 a.m. to 5 p.m. Monday to Friday. If you need to call outside those hours, you can leave a voicemail message to request a callback. This line is available in both Spanish and English, and LightHouse says that interpreters for other languages can be made available when you leave a voicemail requesting a callback. \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">More information about LightHouse's vaccination clinic\u003c/a>.\u003c/p>\n\u003cp>Remember: When it's your time to get vaccinated, your COVID-19 vaccine will be free. You do not need health insurance to be vaccinated. You also will not be asked for proof of citizenship.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003ch3>'A Moving Target'\u003c/h3>\n\u003cp>The state's vaccination rollout has not offered the full accessibility that many disabled Californians need. CEO Bashin said that LightHouse was spurred to offer these weekly pop-up vaccinations by the challenges many in the disability community were reporting around using the California Department of Public Health's vaccine appointment tool, \u003ca href=\"https://myturn.ca.gov/\">My Turn\u003c/a>.\u003c/p>\n\u003cp>[aside postID=\"science_1972824\"]My Turn, said Bashin, \"has been a moving target\" — due a combination of scarce appointment availability and the inaccessible elements of the state's site itself.\u003c/p>\n\u003cp>On his own experience using My Turn to find a vaccine, Bashin said that he \"personally faced situations where I was notified that there were vaccines, and then watched as I struggled with the app and the website to try to get an appointment — only to find that those appointments disappeared because of the inaccessibility of some of those first websites.\"\u003c/p>\n\u003cp>\"Things like, 'Take a picture of the front and back of your health insurance card,' \" noted Bashin. \"A beautiful exercise to do if you can't see.\"\u003c/p>\n\u003cp>Some of these kinds of elements have been improved, said Bashin, calling My Turn \"now very much better than what it had been.\"\u003c/p>\n\u003cp>Bashin said there's also the issue of physical vaccination sites themselves. \"Frankly, some of the major vaccination sites like the [Oakland] Coliseum or [San Francisco's] Moscone Center are giant million-square-feet behemoths. Great if you can drive in,\" said Bashin.\u003c/p>\n\u003cp>\"But if you're a person who doesn't drive, like the 40,000 blind and visually impaired people in the Bay Area, or people with other disabilities, perhaps we want to offer a more convenient way for people to get in, get out, and get their vaccine accessibly.\"\u003c/p>\n\u003cp>The city of San Francisco is offering a call center for people with disabilities who are unable to easily access the internet or schedule a vaccine appointment through their provider: call them at (628) 652-2700.\u003c/p>\n\u003cp>If you're experiencing issues using My Turn, you can call the California COVID-19 Hotline at 1-833-422-4255 (Monday-Friday, 8 a.m.-8 p.m., Saturday and Sunday 8 a.m.-5 p.m PT) and sign up over the phone. Both English-speaking and Spanish-speaking operators are available. Callers needing information in other languages will be connected to translation service that offers 254 other languages.\u003c/p>\n\u003ch3>A Stop-Start Vaccine Rollout for Disabled People\u003c/h3>\n\u003cp>As of March 15, the state opened COVID-19 vaccination up to people ages 16-64 who have certain disabilities or health conditions that put them at \"the very highest risk\" from the coronavirus. \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">See the list of eligible disabilities and conditions\u003c/a>.\u003c/p>\n\u003cp>Some counties and health providers have chosen to expand on the state's list. \u003ca href=\"https://sf.gov/information/other-conditions-eligible-covid-19-vaccine-sf\">San Francisco has a longer list of eligible conditions and disabilities\u003c/a>, and Kaiser Permanente has also included \u003ca href=\"https://mydoctor.kaiserpermanente.org/covid-19/vaccine-availability-eligibility\">more health conditions and disabilities in its own list\u003c/a>.\u003c/p>\n\u003cp>[aside postID=\"news_11866883\"]If you are eligible for vaccination because of your disability or your health condition, the state says that \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">you won't be asked to provide any verification documentation\u003c/a> of the diagnosis or type of disability you have, to protect patient confidentiality. Instead, you'll be asked to sign a self-attestation that you meet \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">the criteria laid out by the state\u003c/a>.\u003c/p>\n\u003cp>The extension of vaccine eligibility to disabled people and those with health conditions was a hard-fought battle.\u003c/p>\n\u003cp>In late January, California announced that after vaccinating people in Phase 1A, \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11857077/california-to-shift-to-age-based-vaccine-eligibility-system-eliminating-job-categories\">the state would shift away from the phase-based system it had planned\u003c/a> in favor of a system that would be primarily age based.\u003c/p>\n\u003cp>[aside postID=\"news_11857538\"]Those now-obsolete subsequent phases included people ages 16 to 49 with underlying health conditions or disabilities, as well as many essential workers. The decision swiftly led to an \u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\">outcry from disability advocates\u003c/a> – among them writer and activist Alice Wong, who sparked the Twitter hashtag \u003ca href=\"https://twitter.com/search?q=%23HighRiskCA&src=typed_query\">#HighRiskCA\u003c/a> and encouraged other disabled people to share their fears about the state's move.\u003c/p>\n\u003cp>\"I don't understand the science and logic behind this decision, and I don't understand why people do not see us and value us,\" Wong said at the time.\u003c/p>\n\u003cp>Wong was one of those advocates who eventually \u003ca href=\"https://www.kqed.org/news/11866883/the-long-fight-against-ableism-and-ageism-throughout-the-covid-19-pandemic\">pushed the state to reverse its decision\u003c/a>, and people ages 16-64 with \u003ca href=\"https://www.kqed.org/news/11855623/where-can-i-get-a-covid-19-vaccine-in-the-bay-area-your-questions-answered#health\">certain disabilities or health conditions were deemed eligible once more for vaccination\u003c/a> as of March 15.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Finding a COVID-19 vaccine appointment near you in the Bay Area has been a challenging road for months now. And many disabled people are finding that both physical and online inaccessibility is putting up even more roadblocks between them and the vaccine.\u003c/p>\n\u003cp>As part of a community-led effort to connect disabled Californians with vaccine appointments, San Francisco nonprofit \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">LightHouse for the Blind and Visually Impaired is now providing fully accessible pop-up vaccination clinics\u003c/a> at their San Francisco headquarters each Friday until May 7.\u003c/p>\n\u003cp>These weekly clinics offer the COVID-19 vaccine by appointment to all members of the blind, low vision, extended disability community and their caregivers.\u003c/p>\n\u003cp>\"We're super happy that the city of San Francisco worked with us so that our site is available to all people with disabilities in the Bay Area and their assistants,\" LightHouse CEO Bryan Bashin told KQED's Brian Watt this week. Bashin said LightHouse is offering around 200 vaccine doses at each of these Friday pop-up clinics.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>LightHouse's Friday vaccination clinic at 1155 Market St. in San Francisco is open by appointment only. To make an appointment, call 628-652-2700. You'll speak to a member of San Francisco's city vaccination call center who will ask for some basic personal information and your health care provider details, and give you more accessibility details about the appointment process and what to expect at the pop-up clinic.\u003c/p>\n\u003cp>LightHouse's appointment line is staffed from 8:30 a.m. to 5 p.m. Monday to Friday. If you need to call outside those hours, you can leave a voicemail message to request a callback. This line is available in both Spanish and English, and LightHouse says that interpreters for other languages can be made available when you leave a voicemail requesting a callback. \u003ca href=\"https://lighthouse-sf.org/mc-events/lighthouse-hq-covid-19-vaccination-site-4/?mc_id=10396\">More information about LightHouse's vaccination clinic\u003c/a>.\u003c/p>\n\u003cp>Remember: When it's your time to get vaccinated, your COVID-19 vaccine will be free. You do not need health insurance to be vaccinated. You also will not be asked for proof of citizenship.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003ch3>'A Moving Target'\u003c/h3>\n\u003cp>The state's vaccination rollout has not offered the full accessibility that many disabled Californians need. CEO Bashin said that LightHouse was spurred to offer these weekly pop-up vaccinations by the challenges many in the disability community were reporting around using the California Department of Public Health's vaccine appointment tool, \u003ca href=\"https://myturn.ca.gov/\">My Turn\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>My Turn, said Bashin, \"has been a moving target\" — due a combination of scarce appointment availability and the inaccessible elements of the state's site itself.\u003c/p>\n\u003cp>On his own experience using My Turn to find a vaccine, Bashin said that he \"personally faced situations where I was notified that there were vaccines, and then watched as I struggled with the app and the website to try to get an appointment — only to find that those appointments disappeared because of the inaccessibility of some of those first websites.\"\u003c/p>\n\u003cp>\"Things like, 'Take a picture of the front and back of your health insurance card,' \" noted Bashin. \"A beautiful exercise to do if you can't see.\"\u003c/p>\n\u003cp>Some of these kinds of elements have been improved, said Bashin, calling My Turn \"now very much better than what it had been.\"\u003c/p>\n\u003cp>Bashin said there's also the issue of physical vaccination sites themselves. \"Frankly, some of the major vaccination sites like the [Oakland] Coliseum or [San Francisco's] Moscone Center are giant million-square-feet behemoths. Great if you can drive in,\" said Bashin.\u003c/p>\n\u003cp>\"But if you're a person who doesn't drive, like the 40,000 blind and visually impaired people in the Bay Area, or people with other disabilities, perhaps we want to offer a more convenient way for people to get in, get out, and get their vaccine accessibly.\"\u003c/p>\n\u003cp>The city of San Francisco is offering a call center for people with disabilities who are unable to easily access the internet or schedule a vaccine appointment through their provider: call them at (628) 652-2700.\u003c/p>\n\u003cp>If you're experiencing issues using My Turn, you can call the California COVID-19 Hotline at 1-833-422-4255 (Monday-Friday, 8 a.m.-8 p.m., Saturday and Sunday 8 a.m.-5 p.m PT) and sign up over the phone. Both English-speaking and Spanish-speaking operators are available. Callers needing information in other languages will be connected to translation service that offers 254 other languages.\u003c/p>\n\u003ch3>A Stop-Start Vaccine Rollout for Disabled People\u003c/h3>\n\u003cp>As of March 15, the state opened COVID-19 vaccination up to people ages 16-64 who have certain disabilities or health conditions that put them at \"the very highest risk\" from the coronavirus. \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">See the list of eligible disabilities and conditions\u003c/a>.\u003c/p>\n\u003cp>Some counties and health providers have chosen to expand on the state's list. \u003ca href=\"https://sf.gov/information/other-conditions-eligible-covid-19-vaccine-sf\">San Francisco has a longer list of eligible conditions and disabilities\u003c/a>, and Kaiser Permanente has also included \u003ca href=\"https://mydoctor.kaiserpermanente.org/covid-19/vaccine-availability-eligibility\">more health conditions and disabilities in its own list\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>If you are eligible for vaccination because of your disability or your health condition, the state says that \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx\">you won't be asked to provide any verification documentation\u003c/a> of the diagnosis or type of disability you have, to protect patient confidentiality. Instead, you'll be asked to sign a self-attestation that you meet \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">the criteria laid out by the state\u003c/a>.\u003c/p>\n\u003cp>The extension of vaccine eligibility to disabled people and those with health conditions was a hard-fought battle.\u003c/p>\n\u003cp>In late January, California announced that after vaccinating people in Phase 1A, \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11857077/california-to-shift-to-age-based-vaccine-eligibility-system-eliminating-job-categories\">the state would shift away from the phase-based system it had planned\u003c/a> in favor of a system that would be primarily age based.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Those now-obsolete subsequent phases included people ages 16 to 49 with underlying health conditions or disabilities, as well as many essential workers. The decision swiftly led to an \u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\">outcry from disability advocates\u003c/a> – among them writer and activist Alice Wong, who sparked the Twitter hashtag \u003ca href=\"https://twitter.com/search?q=%23HighRiskCA&src=typed_query\">#HighRiskCA\u003c/a> and encouraged other disabled people to share their fears about the state's move.\u003c/p>\n\u003cp>\"I don't understand the science and logic behind this decision, and I don't understand why people do not see us and value us,\" Wong said at the time.\u003c/p>\n\u003cp>Wong was one of those advocates who eventually \u003ca href=\"https://www.kqed.org/news/11866883/the-long-fight-against-ableism-and-ageism-throughout-the-covid-19-pandemic\">pushed the state to reverse its decision\u003c/a>, and people ages 16-64 with \u003ca href=\"https://www.kqed.org/news/11855623/where-can-i-get-a-covid-19-vaccine-in-the-bay-area-your-questions-answered#health\">certain disabilities or health conditions were deemed eligible once more for vaccination\u003c/a> as of March 15.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>On a blustery day in Los Angeles, Mimi Newman unlocks her front door to take the dogs outside. For Newman, “outside” is a relative term — she’s been in strict quarantine since March 6, 2020. She’s only gone past her front gate three times.\u003c/p>\n\u003cp>Newman is severely immunocompromised. To a small degree, her medical history prepared her for the pandemic.\u003c/p>\n\u003cp>“I have had periods of my life — years and years and years — where I had to be either in bed the whole time, or just not able to leave the house ’cause I had been so sick,” she says. “But it’s so different when anyone that could walk through the door could essentially kill you with their breath.”\u003c/p>\n\u003cp>So for the past year she’s been nannying a 9-year-old over Zoom, supervising cake baking and attending Morning Sing from bed. “We have done sewing. We have done making paper flowers out of tissue paper. You name it, I’ve crafted it,” she says. “I even bedazzle.”\u003c/p>\n\u003cp>Californians with \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">high-risk disabilities\u003c/a>, such as heart failure and chronic pulmonary disease, had been eligible for the COVID-19 vaccine in the state’s tier 1C. But in January, after opening tiers 1A and 1B, California joined states like Connecticut and Indiana in pivoting from a risk-based strategy to an age-based one.\u003c/p>\n\u003cp>After an\u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\"> outcry from disability advocates\u003c/a>, in February California then announced that people ages 16-64 who are disabled or have health conditions that put them at high risk from the coronavirus \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11860281/california-to-expand-vaccine-eligibility-to-people-with-disabilities-high-risk-health-conditions\">\u003cem>would\u003c/em> be eligible for slightly earlier vaccinations\u003c/a> after all — but not until March 15.\u003c/p>\n\u003cp>Which meant Newman, who’s 31, would still have to wait.\u003c/p>\n\u003cp>[aside postID=news_11857538 hero='https://ww2.kqed.org/app/uploads/sites/10/2021/02/RS43258_HEADSHOT-3-aw-qut-1020x1020-2.jpg']Many states are rolling out the vaccine in tiers that prioritize people using a variety of factors, including age, occupation and risk factors such as preexisting conditions.\u003c/p>\n\u003cp>The state’s plan has led to some odd loopholes. Landscapers and massage therapists became eligible for vaccines in early February, as did Newman’s wife Megan, her primary caretaker.\u003c/p>\n\u003cp>“It seems particularly fitting that they decided to categorize my wife as more eligible for vaccination than me,” says Newman. “It’s literally saying, ‘We are going to keep her safe instead of you.’ ”\u003c/p>\n\u003cp>Age-based vaccine systems are the norm: Think of the shots needed for school. But things change in a pandemic, when everyone needs a shot at the same time. There is widespread agreement that health care workers should take priority. But almost immediately after that, things get messy.\u003c/p>\n\u003cp>“As we go down the ladder, it gets more and more complicated,” says bioethicist Jen James. “How do we weigh teachers against people with disabilities or chronic illnesses? Those questions of individual value, of who quote unquote deserves a vaccine more or needs a vaccine more, are directly butting heads with: Who do we need to be vaccinated for the good of our society?”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>There’s also the basic difficulty of getting shots into arms.\u003c/p>\n\u003cp>“The infrastructure limitations are huge in California,” says infectious disease specialist Dr. Peter Chin-Hong. “California is not only the most populous state, but a huge landmass with a lot of rural areas.”\u003c/p>\n\u003cp>With that in mind, an age-based system has two clear advantages. “Every decade above the age of 50 results in an increase in mortality from COVID-19,” says Chin-Hong. “The other aspect is one of logistics: It’s easily possible to adjudicate what somebody’s age is.”\u003c/p>\n\u003cp>[aside label='Coronavirus Coverage' tag='coronavirus']Dr. Louise Aronson is a member of the California Department of Public Health’s Priority Population Workgroup, which helped set the vaccine tiers. “We looked at socio-demographic groups, we looked at illness categories, we looked at combinations of illness,” she says. “If you look at people who have three or more chronic conditions, that is another thing where the risk for serious illness and death goes way, way up.”\u003c/p>\n\u003cp>But sometimes that risk is obscured by a lack of data.\u003c/p>\n\u003cp>“There are rare conditions that probably put people at really high risk, but they’re rare, so they don’t get quantitated,” says Aronson. And in a state as large as California, going by the numbers is both necessary for an effective rollout and bound to exclude people like Mimi Newman.\u003c/p>\n\u003cp>So much of the human toll of this pandemic is hidden away from view, from solitary deaths in ICUs to people with high-risk disabilities in tight lockdown.\u003c/p>\n\u003cp>“Seeing people sitting in Beverly Hills, eating outside with no masks on: It’s those kind of tiny pickaxes that eat away at me,” says Newman. “It hurts to know that there are the people who think, ‘Oh, just this once. Just this once isn’t bad.’ I don’t know any other world than the one that is people who are staying inside and dying.”\u003c/p>\n\u003cp>On March 15, Newman will join up to 6 million other Californians newly eligible for the COVID-19 vaccine. In the meantime, she’s entering the second year of the pandemic exactly where she started the first: inside, waiting.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2021 NPR. To see more, visit \u003ca href=\"https://www.npr.org\">NPR.org\u003c/a>.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=People+With+High-Risk+Disabilities+Feel+Left+Out+By+California%27s+Vaccine+System&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>On a blustery day in Los Angeles, Mimi Newman unlocks her front door to take the dogs outside. For Newman, “outside” is a relative term — she’s been in strict quarantine since March 6, 2020. She’s only gone past her front gate three times.\u003c/p>\n\u003cp>Newman is severely immunocompromised. To a small degree, her medical history prepared her for the pandemic.\u003c/p>\n\u003cp>“I have had periods of my life — years and years and years — where I had to be either in bed the whole time, or just not able to leave the house ’cause I had been so sick,” she says. “But it’s so different when anyone that could walk through the door could essentially kill you with their breath.”\u003c/p>\n\u003cp>So for the past year she’s been nannying a 9-year-old over Zoom, supervising cake baking and attending Morning Sing from bed. “We have done sewing. We have done making paper flowers out of tissue paper. You name it, I’ve crafted it,” she says. “I even bedazzle.”\u003c/p>\n\u003cp>Californians with \u003ca href=\"https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx\">high-risk disabilities\u003c/a>, such as heart failure and chronic pulmonary disease, had been eligible for the COVID-19 vaccine in the state’s tier 1C. But in January, after opening tiers 1A and 1B, California joined states like Connecticut and Indiana in pivoting from a risk-based strategy to an age-based one.\u003c/p>\n\u003cp>After an\u003ca href=\"https://www.kqed.org/news/11857538/so-angry-so-sad-so-scared-disability-advocates-say-states-new-vaccine-rollout-plan-leaves-them-behind\"> outcry from disability advocates\u003c/a>, in February California then announced that people ages 16-64 who are disabled or have health conditions that put them at high risk from the coronavirus \u003ca href=\"https://www.kqed.org/coronavirusliveupdates/news/11860281/california-to-expand-vaccine-eligibility-to-people-with-disabilities-high-risk-health-conditions\">\u003cem>would\u003c/em> be eligible for slightly earlier vaccinations\u003c/a> after all — but not until March 15.\u003c/p>\n\u003cp>Which meant Newman, who’s 31, would still have to wait.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Many states are rolling out the vaccine in tiers that prioritize people using a variety of factors, including age, occupation and risk factors such as preexisting conditions.\u003c/p>\n\u003cp>The state’s plan has led to some odd loopholes. Landscapers and massage therapists became eligible for vaccines in early February, as did Newman’s wife Megan, her primary caretaker.\u003c/p>\n\u003cp>“It seems particularly fitting that they decided to categorize my wife as more eligible for vaccination than me,” says Newman. “It’s literally saying, ‘We are going to keep her safe instead of you.’ ”\u003c/p>\n\u003cp>Age-based vaccine systems are the norm: Think of the shots needed for school. But things change in a pandemic, when everyone needs a shot at the same time. There is widespread agreement that health care workers should take priority. But almost immediately after that, things get messy.\u003c/p>\n\u003cp>“As we go down the ladder, it gets more and more complicated,” says bioethicist Jen James. “How do we weigh teachers against people with disabilities or chronic illnesses? Those questions of individual value, of who quote unquote deserves a vaccine more or needs a vaccine more, are directly butting heads with: Who do we need to be vaccinated for the good of our society?”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>There’s also the basic difficulty of getting shots into arms.\u003c/p>\n\u003cp>“The infrastructure limitations are huge in California,” says infectious disease specialist Dr. Peter Chin-Hong. “California is not only the most populous state, but a huge landmass with a lot of rural areas.”\u003c/p>\n\u003cp>With that in mind, an age-based system has two clear advantages. “Every decade above the age of 50 results in an increase in mortality from COVID-19,” says Chin-Hong. “The other aspect is one of logistics: It’s easily possible to adjudicate what somebody’s age is.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Dr. Louise Aronson is a member of the California Department of Public Health’s Priority Population Workgroup, which helped set the vaccine tiers. “We looked at socio-demographic groups, we looked at illness categories, we looked at combinations of illness,” she says. “If you look at people who have three or more chronic conditions, that is another thing where the risk for serious illness and death goes way, way up.”\u003c/p>\n\u003cp>But sometimes that risk is obscured by a lack of data.\u003c/p>\n\u003cp>“There are rare conditions that probably put people at really high risk, but they’re rare, so they don’t get quantitated,” says Aronson. And in a state as large as California, going by the numbers is both necessary for an effective rollout and bound to exclude people like Mimi Newman.\u003c/p>\n\u003cp>So much of the human toll of this pandemic is hidden away from view, from solitary deaths in ICUs to people with high-risk disabilities in tight lockdown.\u003c/p>\n\u003cp>“Seeing people sitting in Beverly Hills, eating outside with no masks on: It’s those kind of tiny pickaxes that eat away at me,” says Newman. “It hurts to know that there are the people who think, ‘Oh, just this once. Just this once isn’t bad.’ I don’t know any other world than the one that is people who are staying inside and dying.”\u003c/p>\n\u003cp>On March 15, Newman will join up to 6 million other Californians newly eligible for the COVID-19 vaccine. In the meantime, she’s entering the second year of the pandemic exactly where she started the first: inside, waiting.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2021 NPR. To see more, visit \u003ca href=\"https://www.npr.org\">NPR.org\u003c/a>.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=People+With+High-Risk+Disabilities+Feel+Left+Out+By+California%27s+Vaccine+System&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>",
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"title": "'Music Was Our Language': Grammy Award-Winning Producer Turns the Mic on His Sister",
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"content": "\u003cp>Musician Ian Brennan was born in Oakland and made a name for himself performing in live shows at the \u003ca href=\"http://www.mtv.com/news/350127/barbara-manning-joins-colorful-mix-on-laundromat-cd/\">Brainwash Laundromat in ‘90s San Francisco\u003c/a>. He went on to become a producer, working with artists like Lucinda Williams and Ramblin’ Jack Elliot.\u003c/p>\n\u003cp>But Brennan is best known for his field recordings. Along with his wife, photographer and filmmaker Marilena Delli, Brennan has recorded musicians around the world, like the \u003ca href=\"https://www.npr.org/sections/world-cafe/2016/11/09/501463338/zomba-prison-project-on-world-cafe\">inmates at Zomba Prison\u003c/a> in Malawi and \u003ca href=\"https://www.cbc.ca/player/play/2696103780\">genocide survivors in Cambodia\u003c/a>. He won a Grammy Award for the production of the album \u003ca href=\"https://www.nytimes.com/2011/09/01/arts/music/tinariwens-tassili-desert-blues-recorded-on-site.html\">Tassili\u003c/a> from the band \u003ca href=\"https://www.npr.org/2016/05/17/478372649/watch-tinariwen-perform-tin-ihlan-live-at-pickathon\">Tinariwen\u003c/a>, which has roots in Mali and Algeria.\u003c/p>\n\u003cfigure id=\"attachment_11839064\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839064\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg\" alt='Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda.' width=\"800\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1020x765.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-160x120.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1536x1152.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1832x1374.jpg 1832w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1376x1032.jpg 1376w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1044x783.jpg 1044w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-632x474.jpg 632w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-536x402.jpg 536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan working with “The Good Ones,” a musical group in Rwanda. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>More recently, Brennan has worked closer to home, producing an album called \u003ca href=\"https://datebook.sfchronicle.com/music/producer-taps-voices-of-oaklands-homeless-community-for-new-album\">Homeless Oakland Heart\u003c/a> in 2019, which features recordings of unsheltered people on the streets of West Oakland — singing, rapping, reciting poetry and playing instruments, including a broken, nylon-string guitar one man had in his tent.\u003c/p>\n\u003cp>Now, Brennan has turned his mic on his older sister, Jane Brennan, who was born with Down syndrome. She and her companions at an adult care facility in Contra Costa County call themselves “The Sheltered Workshop Singers.” They released their first album, \u003ca href=\"https://shelteredworkshopsingers.bandcamp.com/album/who-you-calling-slow\">“Who You Calling Slow?”\u003c/a> this month.\u003c/p>\n\u003cfigure id=\"attachment_11839062\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839062\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg\" alt='The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions.' width=\"800\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1020x1020.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-160x160.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1472x1472.jpg 1472w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1104x1104.jpg 1104w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-912x912.jpg 912w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-550x550.jpg 550w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-470x470.jpg 470w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut.jpg 1536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The album “Who You Calling Slow?” produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Brennan sat down recently to talk with California Report Magazine host Sasha Khokha about recording the album. Here are some highlights.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>On Growing Up With Jane\u003c/strong>\u003c/h3>\n\u003cp>Jane was and is one of the biggest factors in my life. The most significant individual growing up really in my whole world was her. We’re only 14 months apart. And for better or for worse, she took care of me and she took care of the rest of us and the family. And it was because of her that we that we stayed together as a family. I don’t know that we would’ve made it without her.\u003c/p>\n\u003cfigure id=\"attachment_11839063\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839063\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg\" alt=\"Ian Brennan with his older sister, Jane Brennan, in the 1970s.\" width=\"800\" height=\"1384\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-1020x1764.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-160x277.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-888x1536.jpg 888w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut.jpg 1184w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan with his older sister, Jane Brennan, in the 1970s. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>I started playing guitar when I was five. I don’t really remember not playing music. I only really remember music as a part of everyday life, as a way to connect, a way to communicate. For my sister and her peers, it was dance — the freedom that they express themselves with — was always so extraordinary.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Ian Brennan, music producer\"]‘We used some of the singers’ own devices — the wheelchairs, the canes. There was a yoga ball. It’s 100% live.’[/pullquote]\u003c/p>\n\u003cp>Jane has old vinyl records of mine and some other folks. And she’s played those records until they’re unplayable or continues to play them when they’re barely playable. I’d say she’s, with great certainty, the only person left on the planet Earth, if ever there were many, that listens to any of my music. She still embraces it. I think for her, probably a lot of it is the memories that surround the music.\u003c/p>\n\u003cfigure id=\"attachment_11839065\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839065\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg\" alt=\"Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco.\" width=\"800\" height=\"513\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1020x653.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-160x103.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1536x984.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan performing in the ’90s at the Hotel Utah Saloon in San Francisco. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Jane’s Musical Abilities\u003c/strong>\u003c/h3>\n\u003cp>Well, my mother played a little piano as part of her therapy, but Jane would play it and she would bang away on it — again, without any reservation. Music was our language of communicating with one another. I was verbal before my sister was verbal, though she was older. She taught me a way of listening: to listen not to the words, but the spirit.\u003c/p>\n\u003cp>The beautiful thing about her is that she is mostly nonverbal, but she knows the words to every song — she just makes them up as she goes along. And there’s not that self-consciousness. It’s not a performance. It’s instead just an expression of her state.\u003c/p>\n\u003cp>If we listen to each other more carefully, we learn and we have so much to learn from each other. What I learned from my sister is that she may be developmentally delayed, yet her emotional intelligence is higher than almost anybody I’ve ever met.\u003c/p>\n\u003cfigure id=\"attachment_11839264\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839264\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg\" alt=\"Jane Brennan with her late father, James Brennan.\" width=\"800\" height=\"855\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1020x1090.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-160x171.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1437x1536.jpg 1437w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1916x2048.jpg 1916w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jane Brennan with her late father, James Brennan. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Producing ‘Farewell Father’\u003c/strong>\u003c/h3>\n\u003cp>We had an idea about doing a recording with Jane and her peers for years. My father was 85, and we realized that if we were going to do it, we needed to do it now. My father had been diagnosed with less than a year to live. Jane is now 55. The life expectancy, unfortunately, for her generation with Down syndrome is 60.\u003c/p>\n\u003cp>We did the recordings with three generations — my three-year-old daughter and my father were present. So were Jane and her peers, many of whom I’ve known their entire lives. On the song “Farewell Father,” you can hear Jane singing to my father and telling him goodbye. And, in fact, he passed away two months later.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003ch3>\u003cstrong>On Recording His Family After Recording Around the Globe\u003c/strong>\u003c/h3>\n\u003cp>It felt like literally coming home. It really came full circle musically because the music for me really started with her. It’s been deeply rewarding to hear those voices and to see that there are no amusical people. Music is everywhere. It’s necessary for survival.\u003c/p>\n\u003cp>I really evaluate a record based on: is it unique? Is it different? Does it have a reason to exist for that reason alone? I think that the voices here are unlike any others. The things that are expressed are real. This recording is comprised of instant compositions with people that had never written songs before, sung into a microphone before or played instruments before. Nonetheless, the results were stunning.\u003c/p>\n\u003ch3>\u003cstrong>On the Recording Techniques Used\u003c/strong>\u003c/h3>\n\u003cp>We used some of the singers’ own devices — the wheelchairs, the canes. There was a yoga ball. It’s 100% live. What you’re hearing is something that happened.\u003c/p>\n\u003cp>On most recordings nowadays, what we hear is something that never happened. It’s a simulation of an event that never actually occurred. I am invested in trying to represent a place and time and a moment in time that can connect people to reality in such a way that they can hear better.\u003c/p>\n\u003ch3>\u003cstrong>On the Album’s Message\u003c/strong>\u003c/h3>\n\u003cp>What I’ve always learned from Jane and her peers throughout my life is perseverance and tenacity and acceptance. It’s not a surrender, but an acceptance of limitations, working with them and beyond them.\u003c/p>\n\u003cp>People on this album make up these incredible melodies that are very intricate and unique and complex. Some people have heard them and they say, “What language is that in?” And it’s easy. It’s in the language of music. It’s the universal language. There are no words to those songs. The meaning is embedded in the music itself.\u003c/p>\n\u003cp>https://www.youtube.com/embed/q-hvvuGQTUM\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Musician Ian Brennan was born in Oakland and made a name for himself performing in live shows at the \u003ca href=\"http://www.mtv.com/news/350127/barbara-manning-joins-colorful-mix-on-laundromat-cd/\">Brainwash Laundromat in ‘90s San Francisco\u003c/a>. He went on to become a producer, working with artists like Lucinda Williams and Ramblin’ Jack Elliot.\u003c/p>\n\u003cp>But Brennan is best known for his field recordings. Along with his wife, photographer and filmmaker Marilena Delli, Brennan has recorded musicians around the world, like the \u003ca href=\"https://www.npr.org/sections/world-cafe/2016/11/09/501463338/zomba-prison-project-on-world-cafe\">inmates at Zomba Prison\u003c/a> in Malawi and \u003ca href=\"https://www.cbc.ca/player/play/2696103780\">genocide survivors in Cambodia\u003c/a>. He won a Grammy Award for the production of the album \u003ca href=\"https://www.nytimes.com/2011/09/01/arts/music/tinariwens-tassili-desert-blues-recorded-on-site.html\">Tassili\u003c/a> from the band \u003ca href=\"https://www.npr.org/2016/05/17/478372649/watch-tinariwen-perform-tin-ihlan-live-at-pickathon\">Tinariwen\u003c/a>, which has roots in Mali and Algeria.\u003c/p>\n\u003cfigure id=\"attachment_11839064\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839064\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg\" alt='Ian Brennan working with \"The Good Ones,\" a musical group in Rwanda.' width=\"800\" height=\"600\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1020x765.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-160x120.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1536x1152.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1832x1374.jpg 1832w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1376x1032.jpg 1376w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-1044x783.jpg 1044w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-632x474.jpg 632w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut-536x402.jpg 536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44995_goodonesrwanda-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan working with “The Good Ones,” a musical group in Rwanda. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>More recently, Brennan has worked closer to home, producing an album called \u003ca href=\"https://datebook.sfchronicle.com/music/producer-taps-voices-of-oaklands-homeless-community-for-new-album\">Homeless Oakland Heart\u003c/a> in 2019, which features recordings of unsheltered people on the streets of West Oakland — singing, rapping, reciting poetry and playing instruments, including a broken, nylon-string guitar one man had in his tent.\u003c/p>\n\u003cp>Now, Brennan has turned his mic on his older sister, Jane Brennan, who was born with Down syndrome. She and her companions at an adult care facility in Contra Costa County call themselves “The Sheltered Workshop Singers.” They released their first album, \u003ca href=\"https://shelteredworkshopsingers.bandcamp.com/album/who-you-calling-slow\">“Who You Calling Slow?”\u003c/a> this month.\u003c/p>\n\u003cfigure id=\"attachment_11839062\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839062\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg\" alt='The album \"Who You Calling Slow?\" produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions.' width=\"800\" height=\"800\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-800x800.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1020x1020.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-160x160.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1472x1472.jpg 1472w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-1104x1104.jpg 1104w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-912x912.jpg 912w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-550x550.jpg 550w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut-470x470.jpg 470w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44993_B1pbRKRg-qut.jpg 1536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">The album “Who You Calling Slow?” produced by Grammy Award-winner Ian Brennan, captures the voices and improvised songs of his sister, who has Down syndrome, and her companions. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Brennan sat down recently to talk with California Report Magazine host Sasha Khokha about recording the album. Here are some highlights.\u003c/p>\n\u003cp>\u003cem>Comments have been edited for brevity and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>On Growing Up With Jane\u003c/strong>\u003c/h3>\n\u003cp>Jane was and is one of the biggest factors in my life. The most significant individual growing up really in my whole world was her. We’re only 14 months apart. And for better or for worse, she took care of me and she took care of the rest of us and the family. And it was because of her that we that we stayed together as a family. I don’t know that we would’ve made it without her.\u003c/p>\n\u003cfigure id=\"attachment_11839063\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839063\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg\" alt=\"Ian Brennan with his older sister, Jane Brennan, in the 1970s.\" width=\"800\" height=\"1384\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-800x1384.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-1020x1764.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-160x277.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut-888x1536.jpg 888w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44994_OKxtShvw-qut.jpg 1184w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan with his older sister, Jane Brennan, in the 1970s. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>I started playing guitar when I was five. I don’t really remember not playing music. I only really remember music as a part of everyday life, as a way to connect, a way to communicate. For my sister and her peers, it was dance — the freedom that they express themselves with — was always so extraordinary.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Jane has old vinyl records of mine and some other folks. And she’s played those records until they’re unplayable or continues to play them when they’re barely playable. I’d say she’s, with great certainty, the only person left on the planet Earth, if ever there were many, that listens to any of my music. She still embraces it. I think for her, probably a lot of it is the memories that surround the music.\u003c/p>\n\u003cfigure id=\"attachment_11839065\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839065\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg\" alt=\"Ian Brennan performing in the '90s at the Hotel Utah Saloon in San Francisco.\" width=\"800\" height=\"513\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-800x513.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1020x653.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-160x103.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut-1536x984.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44996_hotelutah-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Ian Brennan performing in the ’90s at the Hotel Utah Saloon in San Francisco. \u003ccite>(Courtesy of Ian Brennan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Jane’s Musical Abilities\u003c/strong>\u003c/h3>\n\u003cp>Well, my mother played a little piano as part of her therapy, but Jane would play it and she would bang away on it — again, without any reservation. Music was our language of communicating with one another. I was verbal before my sister was verbal, though she was older. She taught me a way of listening: to listen not to the words, but the spirit.\u003c/p>\n\u003cp>The beautiful thing about her is that she is mostly nonverbal, but she knows the words to every song — she just makes them up as she goes along. And there’s not that self-consciousness. It’s not a performance. It’s instead just an expression of her state.\u003c/p>\n\u003cp>If we listen to each other more carefully, we learn and we have so much to learn from each other. What I learned from my sister is that she may be developmentally delayed, yet her emotional intelligence is higher than almost anybody I’ve ever met.\u003c/p>\n\u003cfigure id=\"attachment_11839264\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11839264\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg\" alt=\"Jane Brennan with her late father, James Brennan.\" width=\"800\" height=\"855\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-800x855.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1020x1090.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-160x171.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1437x1536.jpg 1437w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut-1916x2048.jpg 1916w, https://cdn.kqed.org/wp-content/uploads/sites/10/2020/09/RS44999_DadandJanerecording-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Jane Brennan with her late father, James Brennan. \u003ccite>(Marilena Umuhoza Delli)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>On Producing ‘Farewell Father’\u003c/strong>\u003c/h3>\n\u003cp>We had an idea about doing a recording with Jane and her peers for years. My father was 85, and we realized that if we were going to do it, we needed to do it now. My father had been diagnosed with less than a year to live. Jane is now 55. The life expectancy, unfortunately, for her generation with Down syndrome is 60.\u003c/p>\n\u003cp>We did the recordings with three generations — my three-year-old daughter and my father were present. So were Jane and her peers, many of whom I’ve known their entire lives. On the song “Farewell Father,” you can hear Jane singing to my father and telling him goodbye. And, in fact, he passed away two months later.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"soldout": {
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"info": "Tech Nation is a weekly public radio program, hosted by Dr. Moira Gunn. Founded in 1993, it has grown from a simple interview show to a multi-faceted production, featuring conversations with noted technology and science leaders, and a weekly science and technology-related commentary.",
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