Four years after California legislators vowed to eliminate racially and ethnically-linked disparities in spending on services to the developmentally disabled, funding gaps persist, records show.
The state’s 21 “regional centers,” nonprofit organizations tasked with providing services for people with developmental disabilities, consistently spend less on Latinos than on whites, African-Americans or Asians. Although there are exceptions, whites regularly receive the highest levels of support, the centers’ “Purchase of Services” reports show.
In general, those services range from assessment of disabilities for children, to life skills and vocational training for teens and adults, to assistance in locating and paying for long-term care for the disabled. The centers act as case managers, establishing whether a person has a qualifying disability and determining what help to provide. Centers also fund programs for the families of developmentally handicapped persons, from training in how to cope with a loved one’s disability to “respite care” to ease the strain of coping with a developmentally disabled child. Such interventions may include temporary placements in professional respite agencies –staffed by nurses and workers trained to deal with children or adults with challenging behaviors.
Such services, which are free for life, are provided under the state’s Lanterman Act, which sought to end the practice of warehousing people with developmental disabilities in institutions and to develop state-funded programs designed to meet individual needs. This year, the state Department of Developmental Services will spend nearly $4 billion to provide those programs to more than 290,000 people.
But reviews of state and regional center data show that those services are distributed unevenly.
In May, UC Davis researchers reported that the Centers distributed some $2,000 more during the study period to each white child with an autism spectrum diagnosis than to their African-American and Latino counterparts. The disparities were even sharper for autistic adults: whites averaged a little more than $31,000. African-Americans got about $4,000 less. Latinos averaged just over $18,000 per person annually.
“I’ve been looking for empirical numbers, trying to find out whether we’ve done better, worse, or whether we are in the same place,” said Areva Martin, president of Los Angeles-based Special Needs Network, an autism advocacy organization.
“We’ve had a ton of legislation. We’ve improved parent participation and better transparency from the state and the regional centers. But if you believe this study’s numbers, in terms of actual dollars spent, we haven’t moved the needle.”
Martin traces reform efforts to a 2012 state senate select committee hearing in response to a series of Los Angeles Times articles that documented widespread disparities, tied to race and ethnicity, in how the regional centers allocated their resources. Legislators tightened the centers’ public information requirements, mandating that they post annual reports showing how they had distributed their money.
But the most recent reports show widespread disparities persist, not only for autistic regional center clients, but in the entire scope of center services.
“This is not about autism. It’s about all disabilities. It’s a racial, ethnic equity issue,” said Barbara Wheeler, associate director of the University of Southern California’s Center for Excellence in Developmental Disabilities Education, Research and Service.
Nancy Bargmann, director of the state Department of Developmental Services, could not be reached for comment.
But Dexter Henderson, CEO of the South Central Los Angeles Regional Center, said he and his staff hope to move toward more equity.
According to the center’s most recent accounting for how it distributed its funds, in the 2015-16 fiscal year it spent $28,697 on each of its white clients. Latinos drew just $6,147 apiece.
Now, with recently approved state funding, Henderson said he plans to hire up to six bilingual “parent navigators” to help Spanish-speaking clients obtain the services they need.
Katie Hornberger, director of the Office of Clients Rights Advocacy at Disability Rights California, an advocacy group, said a similar program at the Pasadena-area regional center offers a successful model for such an approach.
“The level of case management is so much higher,” she said. “Like, if you’re the mother of a young child, your “promodora” case manager will literally call the doctor’s office, make the appointment and go to the doctor visit with you, to make sure there’s real understanding. But that’s only been available to something like 50 families in a program that has 9,000 (Spanish-speaking) clients.”
Irene Martinez, executive director of the Latino advocacy group Fiesta Educativa, said even with adequate staff and funding, such programs may succeed only slowly.
For instance, many parents from Latin American countries, with little experience of due process in government decisions, are afraid to appeal when they are denied services, Martinez said.
“That’s not something that’s going to change overnight,” she said. “People have to be brought into the system, and then they’ll need time to acculturate.”