Despite reforms, state's efforts to help developmentally disabled riddled with complexity

X-ray room at the vacated Sonoma Developmental Center
photo credit: Marc Albert/KRCB

Problems in California's system of care for the developmentally disabled are well known, and persist.

That's was the main take-away from a two hour meeting Thursday of California's Little Hoover Commission. An independent oversight agency, the commission can propose far reaching reform.

Aaron Carruthers, executive director of the California State Council on Developmental Disabilities and the committee's witness, said the state's system, intended to help, too often fails to serve those in need.

"It's opaque, it's complex. The regional centers are also complex. They are also impacted and complicated by their role as the payer of last resort. That means, individuals and families have to be sent through a labyrinth of multiple systems before securing services with the regional center."

While not intentional, the outcomes, he said, can appear discriminatory.

"This has cultural impacts. If I am of a culture where it's comfortable for me to advocate for what I need, I may be more successful. If I am of a culture that has a sense of distrust with services, being sent away, time and time again is going to have an impact."

Carol Shelton, one of dozens of interested people addressing the commission directly, said instead of receiving assistance, she got the run around.

"Early on I did not receive notices of action, did not know you could appeal and that there were any associated timelines. This puts families at a disadvantage. It took me fourteen and a half years to prove to our regional center that my younger son had autism and was substantially disabled as a result."

Commissioner Dion Aroner said the state of affairs has been worsened by federal regulations barring advocates from accompanying the developmentally disabled to hearings, and asked Carruthers to confirm.

"'Let's say they need to get aid for their child or whomever, can you actually go with them to the department of social services, or can you only lead them there, but can't go with them?' Correct, 'we can prep them all they can, give our advice, here's what you should say but we have to stop at the door.'"