It helps to be White if you’re disabled in California, study finds

If you’re disabled and White, much more public money is often spent providing you services than if you’re disabled and Latino — and precisely where you live can make that gap yawn ever wider, a new study found.

“California’s developmental disability service system is plagued with racial, ethnic and geographic disparities that can dramatically and dangerously impact the essential services received by adults with developmental disabilities,” concludes Disability Voices United, a statewide organization that advocates for people with disabilities and their families, in a report released Wednesday, Oct. 26.

“Systemic inequities and discrimination within California’s regional centers broaden the gap between inclusive possibilities and segregated limitations. … A person’s race and place can determine their ability to lead independent and self-determined lives, despite increased state spending intended to eliminate the disparities. In a state that claims to be a progressive and multi-cultural leader, California is failing people with developmental disabilities and must take immediate, deliberate and data-driven action to right these unacceptable wrongs.”

Called “A Matter of Race and Place,” the study slices and dices public spending data by California’s 21 Regional Centers — the private, independent non-profits that contract with the California Department of Developmental Services to provide “lifelong supports” for people with developmental disabilities.

Public funds provide more than $10 billion through these Regional Centers, which serve more than 333,000 active consumers statewide. The Orange County Regional Center serves some 24,000 of them, and it spent nearly a half-billion dollars — $482.8 million — on services for O.C.’s disabled last year.

Yet Orange County had some of the widest gaps, with $6,567 more spent on White adults living at home as compared to Hispanic – the broad demographic term used in the study – adults living at home; and $21,562 more spent on Whites living independently with forms of support than on those who didn’t fall into one of the major racial/ethnic groups (“other”) living independently with support, the study found.

O.C. did have one of the smallest disparities in the state in one category: the amount spent on people living in residential, group-home-type settings, which are the most expensive. It spent $11,134 more on those who didn’t fall into one of the major racial/ethnic groups (“other”) than it spent on White residents.

The California Department of Developmental Services welcomed the new report, saying it “adds to the vital effort to close the gaps that exist in how diverse communities access the services they need.”

“All those involved in serving Californians with disabilities recognize that disparities exist between different regions of the state, between consumers of different economic status, and between ethnic and racial groups,” the DDS said in an emailed statement. “DDS has made it a priority to approach these discrepancies in a thoughtful and systematic way, and it takes that work very seriously.

“Although important progress has been made in recent years, there still is much room for improvement. As a state, we are closer to the beginning of this process than the end.”

Nuance

Larry Landauer, executive director of the Orange County Regional Center, suspects there are layers of nuance missing from the new analysis.

“We never look at a case and say, ‘This is an Asian family,’ ‘This is a Black family,’ ‘This is a Hispanic family,’” Landauer said. “We’re a needs-based system. We look at a case and say, ‘What do they need?’”

The gaps between what’s spent on one group versus another may have less to do with race and ethnicity than with how profound a person’s disabilities are, and how much support is required to address them. Landauer plans to drill down into severity-of-disability data to see if that’s correct.

Age and demographics tell a part of the story as well, at least here in Orange County, he said.

Regional Centers primarily serve people aged 22 and over, because school districts provide most of the support before then. And in that older age group, Orange County is quite White. Nearly half of the Regional Centers clients over age 22 are White. The data show that more White clients choose to live independently or in group homes — more expensive than family-home-based care. The picture is expected to radically shift in the next 10 to 15 years, as the much more diverse crop of children become adults.

Differences in expenditures don’t tell us whether individuals’ needs are being met, RCOC said in its own analysis of data, but it is committed to meeting the needs of those it serves regardless of age, ethnicity, race, language or diagnosis.

‘Bottom line’

But the bottom line, the report asserts, is that adults with developmental disabilities receive vastly different levels of services depending on their race/ethnicity and where they live.

Average spending ranged from a high of $60,347 at the Golden Gate Regional Center to a low of $26,409 at the Inland Regional Center, which serves Riverside and San Bernardino counties.

The state is on track to spend $88 million trying to eliminate the gap, but since 2016, it has crept up in most places anyway. The gap between spending for Latinos and Whites has grown wider in Orange County, Inland, Harbor, San Gabriel/Pomona and many other regional centers since then, while things got marginally better in several Los Angeles County Regional Centers, including South Central, Westside and Frank D. Lanterman.

“The system is just so hard to navigate, so complex, it really is overwhelming,” said Fernando Gomez, co-founder of the Integrated Community Collaborative group, on the Zoom conference introducing the report. “People are intimidated, and many times, give up.”

He used the analogy of a hungry person going into a restaurant, and the server asking what they want to eat. The person says “steak,” and the server says, “Oh, go across the street.”

The culture of simply complying with the law must change to a culture of person-centered services first, he said. Judy Mark, co-founder and president of Disability Voices United, said the culture of “no” must change to a culture of “yes.”

“The difference is that White people, English speakers, have more resources to fight the culture of no and change it to yes,” she said. “We need to get rid of implicit biases … (Regional Center workers) are there by our taxpayer dollars to serve us, to serve people with disabilities, not to make our lives more difficult.”

Working on it

The state said that it’s working on it.

DDS has enlisted Georgetown University to evaluate the current grant program aiming to improve access and equity. It’s reducing caseloads; building greater coordination between regional centers and other providers, such as schools and counties; establishing an “ombudsperson” office to investigate complaints; and setting up a “Community Navigator” program in partnership with community-based organizations, officials said.

“The costs of services do vary significantly from one region of our state to another,” the DDS statement said. “However, DDS is working to address this and minimize the impact of regional differences by implementing rate model reform and a quality incentive program, which will add approximately $2.1 billion to support developmental services by 2024-25.”

The reasons for discrepancies are as complex and varied as the individuals it serves, it continued. Addressing them requires understanding them as thoroughly as possible to find solutions that truly work.