Nonprofits Serving Californians With Disabilities Must Make Records Public Under New State Law

Regional nonprofits that serve Californians with developmental disabilities will now be required to make their records publicly available on request as part of a bill Gov. Gavin Newsom signed into law on Saturday.

The move, which requires the centers to adhere to the California Public Records Act (PRA), adds a layer of transparency to a system that serves nearly 450,000 people and has faced heavy criticism for its opacity and lack of accountability.

AB 1147, authored by Assemblymember Dawn Addis (D-San Luis Obispo), passed through both houses of the state Legislature in September without opposition. It will affect the 21 nonprofit “regional centers” across the state that manage the developmental disability system’s $15 billion annual budget to coordinate services for people with conditions such as autism, Down syndrome and cerebral palsy.

The legislation is part of a broader package signed by the governor that’s aimed at supporting Californians with disabilities, including stronger protections for disabled students. It also follows the announcement of an ambitious effort to significantly reform the state’s developmental disability system earlier this year.

“I’m proud to continue our historic actions to protect vulnerable students, improve statewide supports, and strengthen future opportunities for the disabled community,” Newsom said in a statement on Saturday.

Judy Mark, president of Disability Voices United, a cosponsor of AB 1147, said the legislation clarifies the responsibility that regional centers have to the public.

“This new law proves that regional centers are doing the government’s business and should be as transparent as other government agencies,” Mark said in an email. She noted the “intense engagement by self-advocates and family members” as instrumental in the bill’s passage.

The new law marks the first time regional centers will be required to comply with the PRA since their creation under the landmark 1977 Lanterman Act.

Regional centers themselves had opposed the bill, citing a lack of resources and concerns about accidental disclosure of private information. Amy Westling, executive director of the Association of Regional Center Agencies (ARCA), said that with the bill’s passage, regional centers are now “evaluating the operational changes required and assessing new statewide training needs to comply with the PRA and other elements of AB 1147.”

She added that most information related to regional center operations is already available from each regional center’s website and through existing Public Records Act requests to the state Department of Developmental Services.

Vivian Haun, a senior policy attorney for Disability Rights California, explained that the Lanterman Act originally established regional centers as independent nonprofit organizations to maximize their responsiveness to the communities they serve.

“As a result, regional centers have been given tremendous discretion in how they spend state funds,” she said.

Haun added that for the centers to fulfill their original mission, it is critical for people with developmental disabilities to “feel seen, heard and understood by their regional centers.” But, she said, “that’s hard to achieve when people don’t have fair and open access to information about the policies and practices that gatekeep some of the most crucial services in their lives.”

Last year, KQED published an investigation of abuse allegations at a disability group home in the Sacramento area that fell within the jurisdiction of the Alta Regional Center. The investigation found that Katrina Turner, a nonverbal woman with a developmental disability, had suffered repeated incidents of abuse and neglect over roughly 18 months. At the time, information about how the regional center investigated the alleged incidents was not publicly available.

Elaine Sheffer and Patrick Turner, Katrina Turner’s parents, said the new bill is an important first step in addressing what they consider the system’s failings.

“We think that AB 1147 is definitely a good start in the right direction to transparency and accountability in an industry where it’s been desperately needed and denied to families who oftentimes have not even been made aware that they have rights,” they said in an email.