Why These California Families Aren't Receiving Vital Early Development Services

When the world shut down during the pandemic, Reyna Balladares decided to open her apartment in San Francisco’s Tenderloin neighborhood to a foster child.

A single mother of two grown daughters, Balladares heard from a social-worker friend about the challenges of finding a home for foster children and wanted to help.

Balladares took care of a baby boy for six months, and then in 2021, she got paired up with a newborn girl. As months went by, Balladares noticed she was slow to begin walking and talking.

A pediatrician recommended that the girl get physical, speech, occupational and feeding therapy to support her development. Balladares was referred to Early Start, California’s early intervention program for infants and toddlers with developmental delays, which approved the treatments.

However, getting connected to certain therapists took months.

When Balladares asked a program coordinator about the long wait, she learned few therapists were willing to make house calls to her neighborhood, which has been at the center of the city’s homelessness and drug crisis.

“They’re afraid to come to this community,” she said.

And that kept the girl from getting the services she was entitled to receive.

California established Early Start in 1986 in response to a federal law guaranteeing early intervention services for children under 3, regardless of their families’ income levels. A network of nonprofit regional centers is responsible for determining a child’s eligibility for developmental support and arranging those services.

Getting services early on is crucial, experts say, because babies’ brains are more adaptable during the first three years of life, and the intervention can head off the need for special education services later on.

The law also requires that children receive the services in their home, daycare or other “natural environments” as much as possible because young children learn best when they’re in familiar surroundings.

Advocates tell KQED they see a growing divide between who gets quality services and who doesn’t.

“There’s vast inequities,” said Jennifer Albon, a pediatrician who treats children with high health care needs at UCSF Medical Center at Mount Zion.

She said several patients who live in the Tenderloin and other low-income districts like the Bayview did not receive at-home therapies because the Golden Gate Regional Center, which coordinates early intervention services in San Francisco, San Mateo and Marin counties, couldn’t find providers willing to see children there.

“The regional center has flat-out told them and told us that there’s no providers who will go to your neighborhood,” she said. “Families who are well-resourced and live in nicer areas, those are the only families who are getting that care in their natural environment, even though [they don’t have] the most need.”

Child care centers in the Tenderloin are also impacted.

Heidi Lamar, director of Compass Children’s Center, said when she noticed a therapist had stopped showing up to work with a child, she reached out to a case manager at Golden Gate Regional Center or GGRC.

The case manager replied in an email message to Lamar: “The provider is not coming anymore because she was shoved onto the sidewalk by someone on the street while walking to Compass. She had previously been yelled at, cursed at, and followed by a man on a bicycle while walking to Compass on another occasion.”

The case manager acknowledged increased difficulty finding providers willing to go to the Tenderloin.

“We can’t compel therapists to provide services in situations where they don’t feel safe,” the case manager wrote. “We just keep our fingers crossed that the providers don’t drop the families entirely.”

The Tenderloin has long been plagued by drug dealing, homelessness and mental illness — conditions that residents and business owners say have worsened since the pandemic, despite city efforts to increase safety in the area.

It’s also a refuge for thousands of lower-income and immigrant families who come seeking affordable housing and social support from organizations like Compass. Another child care center — Wu Yee Children’s Services — hires a “street usher” to escort kids to playgrounds in the neighborhood.

“I’m sure you’ve seen in the news our neighborhood is struggling. There were two daytime shootings outside our school building in the last few months,” Lamar said. “But this is where we work every day; this is where our children and our families live. We have to serve them. We have to find a way.”

Frustrated by the delay in services, Lamar hired a speech and language pathologist to work on-site with children who have difficulty communicating.

Another parent, Ashley Chac, said she waited nine months to get a GGRC coordinator to respond to her request for occupational and physical therapy for her 1 1/2-year-old daughter.

Chac said she’s upset about missing early intervention during a stage when it can make the greatest impact on her daughter’s development.

“Time is of the essence for her,” Chac said. “I’m mad that we fell through the cracks.”

Eric Zigman, executive director of the GGRC, said he’s keenly aware of providers’ reluctance to serve certain neighborhoods and calls it a distressing situation. He said his hands are tied as long as the state pays providers less than the market rate for their services.

“Until those rates are changed, we can’t control every action of every provider,” Zigman said.

Inadequate funding and a shortage of providers have limited regional centers’ ability to improve access and delivery of Early Start services, according to a 2022 analysis of the program by the California Budget & Policy Center.

Early Start’s problems have raised enough of a concern that the federal Office of Special Education Programs deemed California “needs assistance” to improve outcomes for children who receive early intervention services.

Pushing back against Zoom therapy

Advocates say that a growing reliance on telehealth is also leading to substandard care.

California allowed remote delivery of early intervention services at the beginning of the pandemic to ensure children continued to receive care. But as the threat of COVID-19 subsided, advocates said the practice continued.

Intervening early and in the child’s home should be the “gold standard,” said Amy Westling, executive director of the Association of Regional Center Agencies. However, the regional centers have a hard time finding providers and paying them a competitive rate, she said.

“If the service can’t be provided in the natural environment or we can’t identify a provider to do so, we don’t want to say then, ‘We’re not going to offer some alternative,’” Westling said.

Left without choices, Balladares tried virtual therapy, but she couldn’t get her foster daughter to focus or respond to the therapist. She said children need to form relationships in person in order to learn.

“Nothing replaces a person-to-person relationship, especially for a child,” she said.

In the end, Balladares had to cut back her work hours to take the girl to multiple appointments at different clinics each week.

“Running with [her] from one place to another, sometimes trying to make two different appointments in one day … then rushing home to prepare our meals,” she said. “She was exhausted, and so was I.”

After two years of therapies, Balladares said, the toddler hasn’t made as much progress as she hoped. After turning 3 last month, she is no longer eligible to receive services under Early Start and will require more therapies through the San Francisco Unified School District.

Critics say some therapists or their agencies are exploiting a loophole in the law that allows telehealth services if the child’s parents or guardians agree to the arrangement.

“How people took advantage of that was they said to the parent, ‘We can see your child next week virtually, but if we see them in person, it will take several months,’” said Elaine Westlake, a physical therapist who has been demanding a clearer policy on the use of telehealth for Early Start services. “So, of course, the parent says, ‘Well, I guess virtual.’”

Westlake said she saw a growing problem when parents in the Tenderloin wondered why she was the only therapist making home visits while others offered their services remotely. She thinks providers are leaning on telehealth because it saves on travel time. What’s more, Medi-Cal pays the same amount whether services are delivered remotely or in person.

“It’s plain economics because you can see one child after the other [via telehealth],” Westlake said.

Westlake said she is not compensated for the time she spends driving to a child’s home or daycare for each physical therapy appointment. She’s seen the positive impact of that effort. Two recent patients were born prematurely and spent months in neonatal intensive-care units.

“When they came home from the hospital, the parents were afraid to even move them,” Westlake said. Now, she said, both children are walking, running and climbing.

“That never would have happened if I had not seen them in person,” Westlake said.

New York’s health department recently issued guidance on using telehealth after the state’s comptroller issued an audit that found many eligible children didn’t receive early intervention services or faced delays. The guidance lays out scenarios where telehealth is allowed and requires that early intervention providers document how they delivered the services.

Lawmakers there are also considering a 5% increase in payments for in-person services and an extra 4% for serving hard-to-reach or underserved areas.

In Northern California, a pilot project funded by the American Rescue Plan aimed at boosting in-person therapies showed promising results, according to Lori Banales, executive director of Alta California Regional Center, which serves Sacramento and nine surrounding counties.

The project offered $200 incentives for therapies done in underserved areas, in languages other than English or during hours that would accommodate parents’ work schedules, Banales said. Furthermore, $10,000 internship grants also helped early intervention providers to hire more bilingual therapists.

“We know that this works. Money does talk,” she said.

While California has been gradually raising reimbursement rates for providers, Gov. Gavin Newsom wants to delay fully funding the increases to save $1 billion in the next budget year as he moves to close a $38 billion shortfall. That would hinder ongoing efforts to grow the workforce and could lead to longer waits for services, according to a report by the state Legislative Analyst’s Office.

Some recent policy changes included hiring more regional center coordinators to lower caseloads and expanding eligibility for Early Start services, which is expected to add 10% more children into a program currently serving 56,000 infants and toddlers.

Westling said that’s a lot of change all at once.

“The very rapid growth puts a lot of pressure on a system where there’s just not enough clinicians,” she said. “So, I think there’s a lot of work to be done to close some of those gaps at this point.”

Until reform takes hold, Westlake urges her fellow therapists to uphold their code of ethics and care for kids in their natural environments — just as they did before telehealth came along.

“We did it before, and we can certainly do it again,” she said.