Bill Would Mandate Greater Transparency From Nonprofits Serving Californians With Developmental Disabilities

A bill before Gov. Gavin Newsom would force the group of regional nonprofits that serve Californians with developmental disabilities to comply with the same transparency laws as state agencies, allowing nearly 450,000 people with disabilities to access certain records and information related to their care for the first time.

The bill, AB 1147, passed the state Assembly and Senate without opposition at the end of August, after a 19-month fight in which many of its accountability measures were stripped out. The most impactful remaining provision would make the 21 nonprofit organizations throughout the state, called “regional centers,” subject to the California Public Records Act (PRA), a law that requires the public disclosure of government records when requested.

Proponents of the bill argue the regional centers perform a public function and are entirely funded by state dollars and should, therefore, be subject to the PRA. However, the centers that oppose the bill say that complying with it would strain an already cash-strapped system and could lead to accidental disclosures of personal information.

California’s developmental disability system operates with a budget of more than $15 billion, serving Californians with a range of conditions, including autism, cerebral palsy, intellectual disability and epilepsy. All funding and services flow through the regional centers, which connect people with disabilities to various service providers.

The governor is expected to sign or veto the bill by Sept. 26.

A quirk of California’s sweeping 1977 developmental disability law, known as the Lanterman Act, established the regional centers as private nonprofits rather than public agencies, keeping them exempt from the PRA. The intention was to create independent, board-operated organizations that could respond more nimbly than a single statewide agency to each community’s needs. However, critics say this design has led to a system with 21 different operational methods, and the policies of each center remain opaque.

“It just seems so wrong and so unfair that an entire sector of local entities could evade the Public Records Act through some wrinkle that they happened to have been established decades ago as nonprofits,” said Vivian Haun, a senior policy attorney at Disability Rights California, which has advocated for the bill.

Haun researched and wrote the original PRA policy proposal that ended up in AB 1147. She points to a law Newsom signed in 2019 making charter schools subject to the PRA and argues that should be the precedent for other nonprofits that serve a public function.

“They’re expected by the government to do all the same things that a traditional school district is supposed to do, which is to provide a public education to children using the same source of funds,” Haun said. “It just so happens that many of them are nonprofit in status.”

In a July 2023 report, the state Senate Judiciary Committee firmly underscored Haun’s argument, stating, “If anything, the regional centers land even more squarely in the public domain than charter schools: While charter schools are a quasi-private alternative to public schools, regional centers are the public option.”

Calls for more transparency

A slew of reports in recent years have called out California’s developmental disability system for a lack of transparency and accountability, among other issues. A 2022 State Auditor’s Office report found that some regional centers were not conducting regular quality assurance reviews of their vendors despite a 2016 report identifying the same issue.

Last year, the Little Hoover Commission, an independent state oversight agency, found that extreme racial disparities have persisted in the system for decades despite the state investing $66 million over recent years to address the issue. It also found that the quality of care disabled people and their families receive can differ wildly from one regional center to another.

Last year, KQED published an investigation of abuse allegations at a disability group home in the Sacramento area that fell within the jurisdiction of Alta Regional Center. At the time, the information about the center’s investigations into the allegations were not publicly available.

The KQED analysis of data from the Department of Developmental Services (DDS) showed that reports of abuse in disability group homes are somewhat common. From 2012 to 2022, the agency recorded at least 1,900 incidents of suspected abuse and more than 500 incidents of suspected neglect.

Judy Mark, president of Disability Voices United, a sponsor of AB 1147, said the additional transparency the bill calls for would help watchdog groups investigate and understand why these cases keep happening. “If we had that information, we would be able to see, ‘Oh, there is a pattern of problems at this time at this agency.’ Or, ‘Everything looked fine; how did you not see that these abuses were happening or that things were dirty or that people were getting hurt?’” she said.

Besides cases of abuse, Mark said the opaqueness of regional centers makes it especially frustrating for disabled individuals when they attempt to understand why they were denied services.

“All we know as families is that if you are at one regional center, you can get a service, but if you’re at a different regional center, you don’t,” Mark said. “We would be asking, like, ‘What are the consistent policies that you are applying toward individuals so that we know why somebody got a yes and another person got a no?’”

Centers push back

Regional centers fervently oppose the PRA requirement in the bill, claiming that they don’t have the staffing or resources to comply with it — despite a recent Los Angeles Times report that found regional centers left nearly $1 billion unspent in 2021–22. Doing so, the centers said, could also result in the release of private health information.

“Given the highly sensitive information maintained on each individual, and the potential for redaction errors, there is an inherent privacy risk every time a PRA is responded to,” said Amy Westling, executive director of the Association of Regional Center Agencies (ARCA), in an email. “This is particularly true when new staff without prior experience with the PRA would be responding to requests.”

Westling also pointed to the litany of disclosures that regional centers are already required to make publicly available online, including “information about policies, spending patterns, and boards of directors for each regional center.” Each regional center also transmits information daily to the DDS, which is subject to the PRA, she said.

But Haun, of Disability Rights California, said the bigger issue is that regional centers should be held to the same accountability standards as other publicly funded entities.

“Why should they be exempt from the same transparency requirements and expectations that all other entities are expected to comply with when they are using taxpayer dollars to carry out governmental functions?” she said.

Upcoming reform efforts

Advocates say the timing of the bill is crucial. Earlier this year, the California Health and Human Services Agency began working on the Master Plan for Developmental Services, an expansive effort to significantly transform how the state’s developmental disability system operates. The agency is convening stakeholders from across the system to develop a framework “for providing equitable, high quality, and person-centered services to all Californians with intellectual and developmental disabilities.” The plan is expected to be completed by March 2025.

The transparency that the bill’s PRA requirement would provide is critical to the master plan’s success, advocates argued.

“We can’t possibly do what we need to do to get that master plan done if we don’t have access to the information we need from the regional centers,” Mark said. “And that’s why we hope that Gov. Newsom will see this as just one step towards complete transparency and accountability over a system that spends over $15 billion a year.”

But Westling, of ARCA, said the goals of the master plan can be met without subjecting regional centers to the PRA. “If gaps in available data and information are identified through the master plan or other processes, we are happy to help identify potential solutions,” she said.

Haun added that increasing transparency for regional centers would also open the doors to independent studies, research, and policy analyses that could help dramatically improve the system. “There’s almost nothing like that now,” she said. “It’s critical to be able to improve the system and help the state know how to better invest the funds.”

She also believes that the bill goes beyond policy implications; a longer-term effect will be an increased sense of empowerment for people with developmental disabilities.

“When policies, rules, and information about how decisions are made that affect your everyday life are held from you, it is so disempowering,” Haun said. “Even if you wanted to engage or try to speak up or change things for the better, you don’t know how, and you can’t even begin to identify where or what’s even happening to you.”

This story was made possible in part with funding and support from the USC Center for Health Journalism’s Data Fellowship.