Disability equity activists push for bill to boost transparency in California

Activists urge Newsom to sign disability agency transparency law

The bill would increase the transparency of nonprofits that provide services to the disabled.

HAWTHORNE, Calif. - In Hawthorne, activists with the group Disability Voices United gathered for a retreat with new hope. State legislators have passed the Disability Equity, Transparency, and Accountability Act, and it's now on the governor's desk.

"What do they have to hide," asked Miguel Lugo, who has cerebral palsy. He hopes Gavin Newsom bill, which would subject the state's 21 regional centers to public records laws. The centers, which are taxpayer funded, provide disability services, but because they are nonprofits, they aren't subject to the state's transparency rules. Lugo said that loophole has allowed the centers to escape accountability. He said he was often not told about services, and now he wants to know why.

"Had I been offered the services I was entitled to," he said, "I believe my life could have been and would have been completely different."

Judy Mark, who has an adult son with autism, co-founded Disability Voices United and has helped champion the bill.

"The public records act shines sunlight on these systems so we know how our taxpayer dollars are being spent in a good way," Mark said. "Right now the regional centers can hide behind a whole level of secrecy. We don't know how they are making their policies and how they are deciding whether people are getting services or not."

But Amy Westling with the Association of Regional Center Agencies questions why the bill is necessary. She argues the state's Department of Developmental Services, which oversees the centers, is already subject to public records laws.

"What is missing in terms of the information that's available," Westling asked. "Regional centers have information related to their policies, their procedures, their spending and all kinds of other things posted on their websites."

She also said she worries that the centers don't have the training to ensure that private medical information isn't publicly disclosed, but admitted the staff could get the necessary training in time.

"This is something that is a proposal that would layer a new expectation on top of a system that has been in place for the
50 plus years," she said.

But Valerio Baca says the regional centers have not been as forthcoming as they want to believe. He says his own child has been denied services, and he hopes the bill will force them to explain themselves.

"We all want our children to thrive, Baca told us. "But with the system we have, they are barely surviving."