SACRAMENTO, Calif. — For years, Ana Soto’s heart sank at the sound of the jingle from their neighborhood ice cream truck. If her son Max heard the chimes, she knew it was moments before he would take off running.

This left Soto, a San Joaquin County resident, with a difficult decision: chase after Max or stay put to watch over her youngest daughter.

Max, who loves Spongebob Squarepants ice cream bars, was diagnosed at age 3 with autism and attention deficit hyperactivity disorder. Yet, it would take his mother 10 years to get him a designated in-home aide — a service that people with diagnoses like Max’s are lawfully entitled to.

“It’s been a constant battle to get services, years of obstacles,” Soto said.

In California, responsibility for finding services for people like Max sits with the state’s 21 regional centers — a $14 billion network of publicly-funded, privately-operated nonprofits that coordinate support for about 400,000 children and adults with developmental or intellectual disabilities.

The centers provide clients with speech and occupational therapy, day care programs and job search assistance. They also offer respite and in-home help for parents and caretakers. Most services and supports should be free regardless of age or income.

But families across California — especially those who are not white or do not speak English as their primary language — report persistent and often maddening roadblocks in trying to obtain assistance for loved ones with disabilities.

Failing to secure help can mean the difference between those with disabilities living independently and contributing to their community or languishing on the margins.

Despite efforts to address the longstanding inequities, racial and ethnic gaps in service continue to widen.

Latino clients make up the largest share of California’s Regional Center clients, yet per capita, they receive significantly less funding than other racial and ethnic groups. For every dollar spent on white clients, Latino clients on average receive 41 cents, according to the most recent data from the Department of Developmental Services, which oversees the centers.

Latinos at Sacramento’s Alta Regional Center got about 43 cents per $1 for white clients in 2021-22 — a considerable dip from 62 cents in 2015-16.

“It’s only gotten worse in most cases,” said Brian Capra, a senior staff attorney with Public Counsel who has spent years analyzing the disparities in service delivery for California children with disabilities. “So the natural question is ‘Is there a better use of these funds?'”

State officials and regional center leaders say the racial disparities reflect cultural differences in services sought and preferences for keeping adults at home rather than sending them to expensive in-home care facilities.

But interviews with dozens of parents caring for children and adults with disabilities say the system is broken not because of culture but by the tortuous route required to secure help.

Many parents say they were forced to wait agonizing months or years to hear back about requests for certain services — a trend known as “denial by delay.” For some, it took upwards of eight to nine months just to get their child an initial assessment, which contradicts best practices around early intervention.

Other parents reported being provided inaccurate information about costs or service eligibility. In too many cases, parents give up entirely, defeated by a bureaucratic maze they simply cannot navigate on their own.

At the core of the problem, parents and advocates say, is a lack of transparency, accountability and oversight. The regional centers are awarded no-bid contracts that pay the same amount no matter the outcomes for the adults and children they serve.

“I just want to throw up every time I talk about this,” said Isela Aguirre, whose child is served by the South Central Los Angeles Regional Center but receives no services. “That’s how frustrated I am.”

While families struggle to secure support for their children, the centers are returning hundreds of millions of unused dollars back to California’s General Fund each year. They ended last fiscal year with a $1.5 billion surplus and are projected to do the same in 2023, according to the Association of Regional Center Agencies, a taxpayer-funded trade association.

Executive director Amy Westling attributes the unspent dollars to overbudgeting by state officials who wanted to provide more financial cushions during COVID-19. She also said reimbursement rates for service providers, set by law, are too low and can cause shortages.

“A lot of times the issue is not that regional centers are unwilling to provide a service or to pay for a service, it’s that we can’t find a service provider who can still fill a need for us and for the people we’re here to serve,” she said.

California’s regional center system is a ‘black box’

The regional center system was created in 1977 by the Lanterman Developmental Disabilities Services Act, which required the state to serve and support individuals with intellectual and developmental disabilities. The centers were seen as a way to address individual needs at a community level.

California’s regional centers receive $14 billion from taxpayers annually, yet they are not public agencies. As private, nonprofit organizations, they are operated independently by locally-chosen boards.

This setup shields the organizations from the full extent of California’s public transparency laws, creating inconsistent policies and practices across the system and limiting state oversight and accountability.

While the state collects and publishes certain data provided by regional centers, it’s challenging to drill down and understand the outcomes of policy decisions at each individual entity, according to advocates.

In 2022, the California State Auditor found that neither the Department of Developmental Services nor the regional centers monitor whether consumers face difficulties accessing services. Although state law mandates that DDS identify barriers to access, the department has no such process to collect and analyze data about the quality of service.

A state law passed in 2021 required the department to establish a working group to develop performance metrics and incentives for regional centers, but that work remains ongoing.

Alison Morantz, director of the Stanford Intellectual & Developmental Disabilities Law and Policy Project, calls the regional center system a “black box.”

“One of the biggest problems with the system is that it is so opaque. We really don’t know what is going on,” she said. “It’s absolutely maddening that regional centers are taxpayer-funded, with their own taxpayer-funded lobbying association, and yet, taxpayers know very little about how they’re spending their money, which is arguably the worst of all worlds in a way.”

The program that Morantz leads at Stanford provides a tool on its website called the Lanterman Transparency Tracker, which helps stakeholders monitor the compliance of DDS and regional centers with the reporting requirements. Even with those basic requirements, such as posting contracts, awards and information on appeal procedures, the tracker indicates that many regional centers are struggling to comply.

Advocates and parents of people with disabilities step up

In many cases, the regional center system is so complex that grassroots groups formed by parents and advocates are attempting to step up and act as guides.

On a recent Thursday evening, more than 100 Spanish-speaking parents of children with disabilities joined a weekly “Cafecito” on Zoom to discuss their experiences at regional centers.

The event was put on by the Integrated Community Collaborative, a statewide group that helps Latino families navigate the centers. The weekly meetings provide families with an opportunity to ask questions, share instances of discrimination and vent about challenges posed by language barriers.

“I wake up crying and I go to sleep crying,” said Elizabeth Gomez, a co-founder of Integrated Community Collaborative. “We see what everyone’s going through and it’s very, very hard.”

Isela Aguirre says her 18-year-old daughter, who has intellectual and developmental disabilities, has never received any services from the regional centers. The 55-year-old Los Angeles mother has taken a step back from her career as an international chef to provide primary care for her daughter.

Frustration has built up over the years, with Aguirre believing that not even ICC can help with her current situation.

“There’s no change,” Aguirre said. “I began with ICC, but there’s been no difference so I’m done.”

For other parents, the disparities go beyond language differences.

Oscar Tavo, a parent at the Valley Mountain Regional Center, which covers Stanislaus, San Joaquin, Amador, Calaveras and Tuolumne counties, is bilingual yet was only able to get partial funding for a year of applied behavior analysis for his son. The services should have been offered in full and covered by the center, but Tavo estimates he paid about $10,000 out of pocket.

The Frank D. Lanterman Regional Center in downtown Los Angeles is one of the few that has begun to close its racial and ethnic spending disparities in recent years.

Lanterman’s executive director Melinda Sullivan credits her predecessor, who noticed the inequities more than 20 years ago. The center started hiring more staff with languages and cultural competencies to align with their community, and today, about 90% of the regional center’s staff speak two or more languages, according to Sullivan.

“That is just core for us,” she said. “If you can’t communicate, how can you have a good conversation about services and the needs of a particular family?”

‘It shouldn’t take years to change’

The Department of Developmental Services has launched several initiatives in response to concerns about inequities. A grant program awards $11 million annually to centers and community organizations for strategies to reduce disparities and increase equity.

The agency is also working to introduce pay differentials for employees who speak another language. It plans to launch the first phase of an implicit bias training program this fall and is finalizing a contract to translate into Spanish the 400-page law that created the regional center system.

“We have to change the culture of thinking at a regional center, and it requires comprehensive long-term training,” said Leinani Walter, chief equity officer at DDS. “This will not be a check-the-box overnight initiative. It’s intended to be ongoing.”

While parents commend the agency and regional centers for making these strides, the time it has taken to implement them has led many families to question the commitment.

More than 40% of regional center clients are Latino and yet it has taken nearly 35 years to translate the Lanterman Act into Spanish.

The idea of implicit bias training came from focus groups with Black families in the early days of the pandemic. It was budgeted in 2021-22 and yet the agency is just now planning to start pilots in a handful of the centers this fall. Walter said it was unclear when employees in all 21 regional centers would complete the training.

“It shouldn’t take years to change,” said Benita Shaw-Ayala, a Sacramento mother. “To me as a parent, it means there’s no urgency in it.”

Shaw-Ayala’s 21-year-old son, Christopher, who has autism and is nonverbal, has been served for many years by Sacramento’s Alta Regional Center.

After years of navigating the system herself, Shaw-Ayala became certified through the state last year in person-centered thinking — the concept of developing a care plan for a person with disabilities based on how they want to live. The Sacramento mother then put her training to use by serving as an advocate for other families.

It was through that work that Shaw-Ayala described seeing a pattern of discrimination. Sitting in meetings with a mix of white and Black families, she noticed that the Black single mothers were offered fewer hours of services and faced more difficult lines of questioning when seeking social and recreational programs for their children.

In one instance, Shaw-Ayala said a Black family asked their caseworker for out-of-home respite, which includes temporary care at a residential care facility. Rather than walking them through the particular approval process of acquiring the service, Shaw-Ayala said the caseworker quickly tried to discourage the family from seeking it.

“I blatantly said to her, ‘This is the third or fourth time something similar to this has happened and I feel that there’s a race issue here in that you’re treating this family differently,'” she recounted. “There’s a pattern … and it’s appalling.”

California bill aims to reform the disability service system

Earlier this year, Assemblywoman Dawn Addis, D-Morro Bay, teamed up with advocates and authored a bill meant to strengthen transparency and accountability of the state’s 21 regional centers.

AB 1147 has been largely whittled down from its original form due to fierce opposition from the regional centers and their trade association, which argued the provisions would cost $1 billion to implement.

Key components stripped from the bill include those that would have required more strict response times from regional centers and more extensive data collection.

The regional centers argued caseworkers were already too overwhelmed and would be unable to comply.

State law says that a Regional Center caseworker should not carry caseloads of more than 62 clients. Yet, the 2022 state audit found that none of the 21 regional centers employed the legally required number of service coordinators needed to assist clients — a yearslong trend that fuels long wait times.

The Department of Developmental Services launched a new program in 2021 to target Regional Center clients with low or no services and match them with a caseworker carrying 40 or fewer cases. The program has seen promising results but only covers about 4,200 people — or about 1% of all regional center clients.

The state’s 2022-23 budget included funding to hire about 800 new regional center employees and an investment of nearly $22 million was made to reduce caseload ratios. Skepticism remains about whether the new hires and additional dollars will solve the system’s long-standing problems.

“Unless we have deliverable outcomes, for me, it’s a criminal waste of taxpayer dollars,” said Kavita Sreedhar, a South Bay parent to an 18-year-old woman diagnosed with autism.

Advocates are holding out hope that Newsom will sign the remaining elements of the bill into law. The latest version of the amended bill would make the regional centers subject to the California Public Records Act, strengthen training and oversight of regional center boards and set clear expectations for regional centers with consequences for those that don’t meet them.

For parents like Soto, the stakes are high.

As Max grows older, Soto worries about what her son’s life will look like when her family is no longer able to help. The services provided by the regional center are now key to Max’s future. It’s on the regional centers to live up to their purpose and help him strive for success independently, Soto said, whether he follows his current aspirations of becoming a police officer or gains enough skills to take over the family’s tamale business.

“That’s the whole reason why we’re asking for the services they deserve,” she said. “The more services they get is only going to help them in the future when we’re no longer here.”

© 2023 The Sacramento Bee
Distributed by Tribune Content Agency, LLC

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