States Are Failing Residents with Intellectual and Developmental

A California state legislator has joined forces with parents and advocates in an ambitious effort to improve the system that serves adults and children with disabilities, a massive network of organizations that is “failing in significant ways,” according to a new bill.

This week, Assemblywoman Dawn Addis, a Democrat from Morro Bay, filed a bill. Its purpose would be to boost the $13 billion developmental disabilities services system’s transparency, accountability, and confidence.

The legislation follows a series of recent investigations, a state audit, and public hearings that highlighted racial inequities, weak monitoring, and limited accountability at California’s regional centers.

The regional centers are a network of 21 organizations that coordinate services for around 400,000 children and adults with developmental and intellectual disabilities.

Lanterman Regional Center, which encompasses central Los Angeles, Hollywood, Glendale, and Pasadena, had the state’s largest monetary gap — $8,561 — in average spending per person on people of various racial and ethnic groups who were living at home, with Latinos receiving the least, according to a report released in October 2022.

Claudia Rivera stated that the Regional Center of Orange County had continuously denied her request for several services for her two disabled sons. The only help the regional center has given their family is 30 hours of respite care each month, according to Rivera, whose 29-year-old son frequently gets lost for days or weeks.

Services are legally required for California’s population of developmentally disabled people due to the Lanterman Developmental Disabilities Services Act. These services, delivered through Regional Centers (RCs), comprise the supports required for people with developmental disabilities to live in the least restrictive environment possible and to maintain their freedom in the community. Adults with developmental disabilities who qualify for regional services in California are more likely to have enhanced access to health insurance coverage since caseworkers coordinate services for consumers.

The Department of Developmental Services pays for those programs through contracts with regional centers. Statewide, regional centers have an operating budget of more than $13 billion.

The Disability Equality and Accountability Act is a piece of legislation establishing statewide performance requirements for regional centers in several areas, including equity in access, civil rights, health and safety, and more. Additionally, it would impose rigorous deadlines on how quickly regional centers must respond to phone inquiries and requests for evaluations.

A state audit issued last summer examined processes at three of the state’s regional centers — Alta California in Sacramento, North Bay in Napa, and North Los Angeles — and discovered a plethora of flaws.

One of the conclusions was that none of the agencies had enough service coordinators on staff to adhere to the regulatory requirements for coordinator-to-consumer ratios. They also failed to properly oversee vendors who provide direct services and lacked a way to measure critical customer service metrics such as wait times and timeliness of referrals and the distance individuals must travel to acquire services.

Nationwide, people with intellectual and developmental disabilities struggle to receive the necessary services. There are 820,000 disabled people on waiting lists for home and community-based services across the country. In some states, such as North Carolina and Florida, the wait is more than a decade.

Medicaid’s home and community-based services allow disabled people to live at home rather than in an institution. Since 1999, disabled people have had the right to live in the most integrated setting possible.

Medicaid is vital for many individuals, including me. Without Medicaid, I would be unable to live in my community. Medicaid is what pays for my PCA services.

Home and community-based services are not available through private insurance. If I were to lose Medicaid coverage, it would mean that I’d lose the services I need to live in the community. In other words, without Medicaid, life as I know it would vanish.

People with intellectual and developmental disabilities deserve to live in their communities. Policies need to be reformed so people can get the help they need. All people with disabilities should be able to get the help they need to live their lives to the fullest.


Angst, Maggie. “California Bill Would Reform ‘Failing’ System Serving Adults and Kids with Disabilities.” The Sacramento Bee, The McClatchy Company, 22 Feb. 2023,

Diament, Michelle. “Lawmakers Revive Effort to Prop up Disability Services.” Disability Scoop, Disability Scoop, 27 Jan. 2023,

Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022,

Jones, Mary Helen. “The Personal Impact of a Statewide Shortage.”, Charter Communications, 23 Jan. 2023,

Mager-Mardeusz, Haleigh, and Gerald F. Kominski. “More than 400,000 Californians with developmental disabilities remain outside the state safety net.” UCLA Center for Health Policy Research (2016): 1-9.

Reyes, Emily Alpert. “In California, Spending on Adults with Disabilities Differs by ‘Race and Place’.” Los Angeles Times, Los Angeles Times Communications LLC, 27 Oct. 2022, 

Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, NPR, 5 Nov. 2022,

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