Report: Racial disparities persist for young people with disabilities

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Racial and ethnic gaps in spending on services for Californian children and adolescents with developmental disabilities have persisted, although California has invested tens of millions of dollars in efforts to address these disparities, a new report found.

The report, released Wednesday by legal advocacy group Public Counsel, found that at most regional centers in California, which help people with developmental disabilities across the state, spending inequities had worsened for Latino youth over the past fiscal year. While this gap was narrowing statewide, it was widening in many individual centers.

Despite long-standing awareness of the problem, “we still have a separate and unequal system of services for children with disabilities,” said Sharon Balmer Cartagena, lead attorney for the Child Rights Project at the Public Council.

The report also found that as the COVID-19 pandemic dragged on, increasing numbers of young people overall were being left “unserved” by their regional hubs. More than a third of clients aged 3 to 21 received no service purchased by their regional centers in the last fiscal year, according to the report.

The California Department of Developmental Services, which oversees service coordination through regional centers, said it had not had sufficient time to review the report, but added that “service access and equity remain a priority” for the department, which has launched initiatives that include implicit bias training for regional center staff and “differential pay” for bilingual workers to increase access for people who speak languages ​​other than English.

DDS is committed to exploring “additional strategies to reduce inequalities” within the system, he said.

Amy Westling, executive director of Assn. regional center agencies, said “we have made tremendous progress in some areas. Westling, whose association represents the network of 21 regional centers across California, said “we are all committed to making sure people have access to the services they need.”

California provides support services for children with developmental disabilities through a system of regional centers that contract with the Department of Developmental Services. The centres, which are private, not-for-profit organizations, provide case management and organize services for people with cerebral palsy, autism, epilepsy and intellectual disabilities.

Disability rights advocates have complained that the system too often forces parents to fight for help. Regional centers “are putting up barrier after barrier so that people can access the services they are legally entitled to,” said Judy Mark, board chair of Disability Voices United, which advocates for people with developmental disabilities and their families. .

The public advocate found that in the fiscal year that ended in June, Latino youth between the ages of 3 and 21 who received services received 80% of the spending levels of white youth of the same age who were receiving services.

It was an improvement over previous years, but the report found that a single hub serving South Los Angeles and parts of Southeast LA County accounted for much of that improvement — and that in the At most other California centers, the spending gaps between Latino and white children had widened in six years.

Racial gaps also persisted for young Asian Americans and were especially stark for children of “other ethnicities, but had closed in the past year for young blacks, the report said.

Westling said she was thrilled to see greater parity for black youth. The regional centers have tried to help families better navigate a complex system of services, she said, pointing to an initiative that included a reduced workload for workers who help families who speak languages ​​other than English and had gotten few services purchased for them.

It “really highlights the importance of having someone to help and hold your hand as you navigate these systems,” she said.

The new analysis differs in key ways from how regional centers have reported their own progress: the public board said centers calculate and report their per capita spend based on the total number of consumers, whether those consumers have or not received services. Instead, the report examines per capita spending specifically among youth who received services.

The group also looked at how many young people had not received any services purchased through their regional center. Last budget year, that number rose to 36% — its highest point in six years of tracking — among young people aged 3 to 21. This “deprivation rate” ranged from around 23% to almost 52% among individual centers, according to the report.

When families don’t receive services, “it’s not because they don’t want to,” said Fernando Gomez, one of the co-founders of the Integrated Community Collaborative, a community group that aims to reduce disparities. expenses. “A lot of times it’s because they can’t.” Elizabeth Gomez, co-founder of the collaboration, said regional centers routinely tell families to first seek help from school systems, public programs, or health insurers before centers fund many services. which can be a long and frustrating process.

Westling, the head of the regional centers association, warned that families who are not getting the services purchased by their regional centers can still access them through other resources that their case manager helps them find. The mere fact that the center is not spending money “does not in any way mean that services are not being provided”, she said.

The public advocate noted that the growing share of children who have not obtained services purchased from regional centers may be “at least in part due to the pandemic,” but he also pointed to disparities in the rates at which young people of different races and ethnicities have gone ‘unserved. For example, Public Counsel found that 50% of Latino youth in the Orange County Regional Center did not purchase services in the last fiscal year, compared to 36% of white youth.

“What exists here in Orange County is discrimination,” said Evelyn Rodriguez, who lives in the city of La Palma and has an autistic son. Rodriguez, who was interviewed in Spanish, founded a group called Padres Mentores to support Latino families in the county. “When a family is Latino and wants services, they say, ‘Why? Why?'”

Larry Landauer, executive director of the Orange County Regional Center, said discrimination “shouldn’t happen” there, noting that 75% of its service coordinators are bilingual.

He said the Orange County center has analyzed why some clients are not receiving services and found that some are reluctant to accept any form of public assistance, some are afraid to do so, and some do not seek service but connected to the regional center as an “insurance policy” in case they needed services in the future.

The question under state law is, “What does this person need?” It doesn’t matter if you’re white or black or Hispanic. It’s absolutely, ‘What is your level of need?’ said Landauer.

A Times investigation more than a decade ago found that public spending on children with autism in California differed by race, ethnicity and socioeconomic status, with the California Department of Developmental Services spending significantly more on white children with autism than black or Latino children with the same diagnosis.

Six years ago, California launched a program that has so far awarded $66 million to regional centers and community groups for efforts to close racial and ethnic gaps in spending. (From beneficiaries are Integrated Community Collaborative and Disability Voices United.) Brian Capra, senior counsel for Public Counsel and author of the report, said that “while California’s efforts have been well-intentioned, its piecemeal approach to reform is inadequate to address a deep systemic discrimination that has dogged this system for decades.

The public council’s report called on state lawmakers to convene a watchdog hearing, set up a task force to review overhauling funding formulas and roll back requirements that make it harder for families to access services. He also urged them to demand that regional centers investigate all cases in which clients are not receiving services and report publicly on why this is happening.

The public attorney also pointed to the South Central Los Angeles Regional Center as a possible model. The report found that the center achieved much more equitable spending among black, white and Latino children in the last budget year after more than doubling its total spending.

Years ago, “it was a nightmare. I would ask for services and the response was always “No, no, we don’t do that, we don’t have that, we don’t offer that,” said Rubi Saldaña, who has three children with autism and lives at Downey. It wasn’t until she and other parents started stepping up, Saldaña said, that “something changed.”

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