“What happens when I’m not here anymore?”: Parents of people with disabilities push for expanded services

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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 him on the side, leaving the 18-year-old with a serious 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 the care of other people in a nursing home.

After more than a year of hospitalization and rehabilitation, he brought Jim Jr. home, knowing he would need far more help than any one person could provide. The system of regional centers in California seemed like a solution. These centers recruit and coordinate support services for people with intellectual and developmental disabilities and are designed to do just what Jim Jr. needed: help him rebuild his life.

But O’Hara learned her 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-eligibility rule is more restrictive than federal law and stricter than most states. O’Hara has been fighting for years to change it, promoting the extension of access to people with youth-onset disabilities up to the age of 22. Now he’s trying again, this time with his state representative, Rep. Pilar Schiavo, D-Santa Clarita.

Schiavo said he is looking to implement that change through the annual budget process. He acknowledged that the task could be difficult projected budget problems for the state but said it was a long-overdue change.

“California has lagged far behind the rest of the country on this,” Schiavo said. “It’s hard to consider new programs or expansions when it comes to layoffs.” But “last year we were able to get new priority funding, so hopefully that’s one of the priorities we can achieve.”

The promise of early intervention

Without the regional center system, O’Hara became the lawyer and manager he wanted for his son. She trained as a behavioral assistant, contacted insurance companies, took her son to appointments and therapy, and created a home-schooling program.

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

He deserved it. Little by little, Jim Jr.’s humor and self-awareness began to re-emerge.

Today, at 49, he talks, walks and tells jokes. He enjoys reading and bowling: progress that exceeds what doctors predicted.

For O’Hara, this experience shows the importance of early intervention. “But the insurance and rehabilitation systems are not prepared for this,” he said. “It’s the regional center. We didn’t have it; I had to create it myself.”

at the moment 21 regional centers They serve nearly half a million Californians with conditions including autism, cerebral palsy and epilepsy.

Regional centers act as a hub that connects people to therapies, adult day programs, social skills training, independent living support and job training, all managed by 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. There are access roads.

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

A struggle that goes on for years

Since 1978, federal law has certain developmental disabilities such as serious chronic conditions “due to mental or physical impairment” that occur before the age of 22. California’s 18-year limit puts it at odds with federal policy and a growing body of research showing That the brain continues to develop well into age 25, meaning that a traumatic brain injury sustained in late adolescence or early adulthood can disrupt development as profoundly as earlier.

California lawmakers have tried several times to fill that gap. In 2022, a bill drafted by state senators Anthony Portantino La Cañada Flintridge Democrat and Scott Wilk R-Santa Clarita, arrived at Gov. Gavin Newsom’s office. Newsom vetoed the bill arguing its cost. 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 have not been appropriated this year.

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

At this point, Office of the Legislative Analyst, independent body, estimated that expanding regional center services to 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 between $15 million and $60 million.

Schiavo is now seeking expansion through the budget, not standalone legislation, and said he hopes his request falls within that range.

The Association of Regional Center Agencies supports the idea, with one stipulation: the state allocates sufficient funds for this expansion.

The population served by regional centers is already growing at a faster rate than the general population, and the Department of Development Services projects 7.6% increase in the number of customers for the next fiscal year. This growth is due in part to an increase in autism diagnoses, depending on the state, and in part to a greater presence in communities of color, such as centers received criticism in the past due to inequality in their services.

People with brain injuries acquired in early 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 is fundamental disagreement about whether people with acquired and traumatic brain injury, particularly in this age group, need additional support,” Westling said. “The question is, does this proposal adequately account for the financial support needed 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 gone.

In June 2002, his son Joe, 21, was a psychology student at Santa Rosa. A road accident threw him 12 meters from his car, emergency services report.

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’s never going to walk, he’s never going to 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 activities and services that could contribute to his recovery, sometimes paying out of her own pocket. Today, at age 44, Joe is walking, talking, volunteering and living in his own apartment. Get help through Medi-Cal home support services, including help with personal care, shopping, and laundry. But transportation, arranging appointments, managing medications, and even finding opportunities to socialize largely fall to her mother.

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

More than anything, Joe wants to get back to work and be independent. But his disability makes it difficult for him to read social cues and understand personal boundaries, Graham said. She believes that if her son had had immediate access to the social skills training and job counseling offered by the regional centers, his recovery would have been longer.

“I’m worried about what will happen when I’m gone and I can no longer support him or help him. Who will continue to protect him, guide him and process leases and recertification for services?” Graham asked.

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

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

Supported by the California Health Care Foundation (CHCF), which works to ensure people have access to the care they need, when they need it, at an affordable cost. Visit www.chcf.org for more information.