Advocates Push for Disability Services Expansion in California

Parents and advocates of individuals with disabilities in California are rallying for expanded access to essential services. The urgency stems from the restrictive eligibility criteria enforced by the state’s regional centers, which currently limit support to those whose disabilities begin before age 18. This narrow definition has left many families feeling abandoned and anxious about the future.

Jim O’Hara Jr. is one of those affected. After surviving a severe brain injury at 18 due to a car accident, he faced a long recovery. His father, Jim O’Hara, refused to place him in a nursing home despite the daunting prognosis from doctors. After lengthy hospital stays and rehabilitation, O’Hara brought his son home, only to discover that Jim Jr. did not qualify for regional center services due to California’s strict “age of onset” rule. This law excludes individuals whose disabilities arise after age 18, a guideline more stringent than federal law and many other states.

Determined to change the existing framework, O’Hara has partnered with Assemblymember Pilar Schiavo, a Democrat from Santa Clarita, to advocate for a reform that would extend eligibility to young adults whose disabilities begin up to age 22. Schiavo acknowledged the challenges ahead, particularly given California’s projected budget shortfalls, but emphasized the necessity of this change. She stated, “California has really fallen behind the rest of the nation on this issue.”

The Promise of Early Intervention

The need for comprehensive support systems is underscored by O’Hara’s experience as a caregiver. Lacking formal assistance from regional centers, he became his son’s advocate, navigating insurance challenges and coordinating therapies. His dedication, spanning a decade, has yielded significant progress; at 49, Jim Jr. now walks, talks, and enjoys activities like reading and bowling—milestones that seemed impossible in the early days of recovery.

Regional centers in California currently serve nearly half a million individuals with various disabilities, including autism and cerebral palsy. They offer a centralized source for therapies, social skills training, and job coaching. However, individuals whose disabilities manifest after age 18 are typically referred to other services, such as in-home supportive services or independent living centers. Advocates argue that these alternatives lack the integrated approach provided by regional centers, which can offer a lifelong continuum of care.

Efforts to amend the eligibility criteria have been ongoing for decades. In 2022, a bill designed to broaden access to regional center services reached the desk of Governor Gavin Newsom, who ultimately vetoed it due to cost concerns. He indicated that expanding services to additional individuals would necessitate tens of millions of dollars from the state’s general fund, a substantial request in a tight budget year.

The Legislative Analyst’s Office previously estimated that extending services retroactively to those with disabilities starting between ages 18 and 22 could affect 1,000 to 2,000 individuals in its first year, potentially costing between $15 million and $60 million. Schiavo is now pursuing this goal through the budget process, rather than through standalone legislation.

Concerns for the Future

Katherine Graham, another advocate, faces similar challenges with her son Joe Graham, who suffered a traumatic brain injury at 21. Like Jim Jr., Joe is ineligible for regional center services due to the timing of his injury. Over the past 24 years, Graham has managed her son’s care, seeking out activities and services to aid his recovery, often at her own expense. Joe, now 44, has made remarkable strides—he walks, talks, and volunteers—yet his mother remains deeply concerned about his future.

Graham worries about the support Joe will receive when she is no longer able to assist him. She has become a fierce advocate for better access to social skills training and job coaching, which she believes could significantly enhance her son’s independence. “My concern is what will happen when I’m gone and can no longer support him,” she stated.

Both O’Hara and Graham continue to fight for changes that would allow individuals with disabilities to receive vital services. O’Hara insists that his son’s progress is testament to the importance of early intervention and coordinated care. “As long as he has me, my son will keep moving forward,” he said. “But if something happens to me, that could stop.”

The push for reform is supported by the California Health Care Foundation, which advocates for access to necessary care for all individuals. As families like O’Hara’s and Graham’s seek to ensure a secure future for their loved ones, the call for expanded disability services in California grows louder, highlighting a critical need for policy changes that reflect the realities of developmental disabilities.