Parents in CA push for expanded services for people with disabilities in regional centers

from Ana B. IbarraCalMatters

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30 years ago, Jim O’Hara Jr. woke up from a coma, unable to walk, talk or eat. An 18-wheeler hit his car, leaving him, then 18, with a severe brain injury, according to his father, Jim O’Hara. Doctors said the young man’s condition would not improve much. But O’Hara refused to leave her son in a nursing home.

After more than a year in hospital and rehab, he brought Jim Jr. home, knowing he would need much more help than one person could provide. California’s system of regional centers seemed like the answer. These centers procure and coordinate support services for people with developmental and intellectual disabilities and are designed to do just what Jim Jr. needed: help rebuild his life.

Then O’Hara learned his son didn’t qualify. Under California law, a person’s disability must begin before age 18 to qualify for the regional center system.

California’s “age of appearance” rule, which determines eligibility, is narrower than federal law and stricter than most states. O’Hara spent years fighting to change it, pushing to extend access to people whose disabilities started as young adults up to age 22. Now he’s trying again, this time with state Rep. Pilar Schiavo, D-Santa Clarita.

Schiavo said he seeks to make that change through the annual budget process. She admitted the task could prove to be an “uphill battle”. projected budget problems of the statebut said it was a change long overdue.

“California has really lagged behind the rest of the nation on this,” Schiavo said. “It’s hard to watch new programs or expansions when you’re watching cuts.” But “Last year, we were able to find new dollars for priorities, so hopefully that will be one of the priorities that we can figure out how to accomplish.”

The promise of early intervention

Without the regional center system, O’Hara became the advocate and case manager he wanted his son to have. He trained as a behavioral therapist, contacted insurance companies, sent his son to appointments and therapy, and designed a home-schooling program.

“I dedicated 10 years of my life to rehabilitating my son. I don’t regret it for a second,” he said.

It paid off. Gradually, Jim Jr.’s humor and self-awareness began to re-emerge.

Today, at 49, he talks, walks and cracks jokes. He likes to read and play bowls – progress beyond what the doctors expected.

For O’Hara, this trajectory proves how important early intervention is. “But the insurance and rehabilitation systems are not built for that,” he said. “It’s the regional center. We didn’t have it; I had to create it myself.”

today, 21 regional centers serving nearly half a million Californians with conditions including autism, cerebral palsy and epilepsy.

Regional centers act as a hub, connecting people to therapies, adult day programs, social skills training, independent living support and job training – all managed from a single point of contact.

The California Department of Developmental Services, which regulates regional centers, says people whose disabilities begin after age 18 are typically referred to other programs: home support services, the state Department of Rehabilitation and independent living centers. The roads exist.

But parents like O’Hara say that misses the point. Regional centers offer something these programs do not – comprehensive, coordinated services for life.

A long battle

Since 1978, federal law has certain developmental disabilities as severe, chronic conditions “due to mental or physical impairment” that occur before the age of 22. California’s cap of 18 puts it at odds with both federal policy and s a growing body of research showing that the brain continues to develop into the mid-20s—meaning that a traumatic brain injury sustained in late adolescence or early adulthood can disrupt development just as profoundly as earlier.

California lawmakers have tried several times before to fill that gap. In 2022, a bill authored by State Sens. Anthony PortantinoLa Cañada Flintridge Democrat and Scott WilkRepublican from Santa Clarita, reached Gov. Gavin Newsom’s desk. Newsom vetoed the billpointing out the costs. Although his veto message expressed support for expanding services for people whose disabilities occurred before age 22, he said covering more Californians would require tens of millions of dollars from the state’s general fund that were not appropriated this year.

Such a request, Newsom said, would have to go through the budget process.

Back in the day, the independents The Legislative Analyst’s Office calculated that expanding regional center services for people whose disability began between 18 and 22 retroactively would expand eligibility to 1,000 to 2,000 people in the first year, at a cost of $15 million to $60 million.
Schiavo is now pursuing the expansion through the budget rather than through stand-alone legislation, and said she expects her request to fall within that range.

The Association of Regional Center Agencies supports the idea, with the proviso that the state allocates sufficient funds for this expansion.

The population served by regional centers is already growing faster than the general population, according to the Department of Developmental Services 7.6% increase in customers for the next fiscal year. That growth is driven in part by rising autism diagnoses, according to the state, and in part by more aggressive outreach to communities of color — centers are facing criticism in the past for unfair favors.

People with brain injuries acquired in young adulthood may also need additional or different support than those with disabilities from birth, said Amy Westling, the association’s executive director.

“It’s not that there’s fundamental disagreement that people with acquired and traumatic brain injury, especially in this age group, need extra support,” Westling said. “The only question is, does this proposal include sufficient consideration of the financial support that would be required to make it possible?”

“What will happen when I’m gone?”

Kathryn Graham worries about what will happen to her son’s care when she is no longer around.

In June 2002, her son Joe was a 21-year-old psychology student at Santa Rosa. A traffic accident threw him 40 feet from his car, first responders told her.

He didn’t break any bones, but he did suffer a devastating brain injury.

“Right after the accident, they said, ‘He’s going to be a vegetable.’ He’ll never walk, he’ll never talk,” Graham said.

Like Jim Jr., Joe Graham is ineligible for regional center services because his brain injury occurred after age 18.

For nearly a quarter of a century, Kathryn Graham oversaw every aspect of her son’s care, constantly seeking out activities and services that could help his recovery, sometimes paying out of pocket. Today, at age 44, Joe is walking, talking, volunteering and living in his own apartment. He receives some assistance through Medi-Cal in-home support services, including assistance with personal care, shopping, and laundry. But transportation, arranging appointments, maintaining medication, and even seeking out opportunities to socialize have largely fallen to his mother.

A retired teacher from Yukaia, Graham advocated long and hard for her son.

More than anything, Joe wants to work again and be independent. But his disability makes it difficult to read social cues and understand personal boundaries, Graham said. She believes that if her son had quick access to the social skills training and job training that regional centers provide, he would have been further along in his recovery.

“My concern is what will happen when I’m gone and I can no longer support or help him. Who will continue to protect, guide, as well as fill out leases and recertify services?” Graham said.

O’Hara also says she will continue to push for her son and so that people with disabilities have easier access to critical support services that have been proven to help them become more independent.

“As long as I’m around, my son will move on, but if something happens to me, that could stop,” O’Hara said. “My goal is to never let that happen.”

Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a cost they can afford. Visit www.chcf.org to learn more.

This article was originally published on CalMatters and is republished under Creative Commons Attribution-NonCommercial-No Derivatives license.