How Families Are Fighting Racism and Disability Discrimination
Ever since her son, Landon, was born three years ago, Nakenya Allen has been fighting.
Fighting to get a diagnosis for the cause of Landon’s digestive problems, which landed him in the emergency room multiple times before he turned 18 months old. Fighting to get doctors to take her concerns about her son’s constant distress seriously. And, after he was diagnosed with a rare birth defect in his spinal cord, fighting with medical and disability service providers to get financial support for his care.
“I didn’t feel like I was being heard,” said Allen, 42, who is Black and lives in Martinez, in the Bay Area. “At the time, did I consider it a racist issue? I don’t think so because I was so serious about trying to help my son.
“I just knew that they weren’t helping us, and I was desperate. But looking back on that now, I do feel like there was a bias.”
Many parents of children with complex health care needs — regardless of race — report struggling to receive prompt diagnoses and access to adequate therapy and support services. But for families of color, particularly those who are Black and Latinx, the struggle is more acute.
These families often grapple with biased attitudes from medical, service and education providers. Sometimes the bias is unconscious, but the net result is the same — poorer care than white families typically receive. Health systems also don’t often account for the impact of institutionalized racism on people of color – such as higher poverty rates, less access to jobs with flexible and paid time off to care for kids, and greater transportation challenges – and that lack of awareness can often exacerbate the inequities. Cultural and language barriers can make it hard for these parents to navigate California’s labyrinthine system for children with disabilities, advocates said.
“There’s just a lot of systemic racism,” said Kausha King, director of the Community Empowerment Project, a program that provides navigation support and training to Black families of children with disabilities in Alameda and Contra Costa counties. “Systems are not technically set up to serve our families, and there are more and more Black families that are in need of these systems.”
Research consistently shows disparities between how children with disabilities are served, depending on their racial and ethnic background. For years, families of color and non-English speaking families have received fewer services than white families through California’s 21 social services agencies, known as regional centers, for children with developmental disabilities. Regional centers are community-based nonprofit agencies that contract with California’s Department of Developmental Services to provide and coordinate services for people with developmental disabilities and their families.
In its latest report on the matter, the pro-bono law firm Public Counsel found that regional center spending on Black and African-American children has improved in recent years, but it’s still 11 percent less than the amount spent on white children. Asian children received 16 percent less funding than white children in the 2018-19 fiscal year, the most recent period for which data is available. Latinx children fared the worst, receiving only 69 percent of the spending on services that white children received.
Other studies point to inequalities in diagnosis rates for conditions like autism spectrum disorder (ASD). A study in the journal Pediatrics found that Black children are diagnosed with autism on average more than three years after their parents express concerns about their development. That’s generally several months later than their white peers, according to data from the Centers for Disease Control and Prevention. Latinx children are diagnosed less often with ASD than their white and Black peers, a March report by the CDC showed.
“Certainly the way the system is being currently implemented, there’s a disparate impact being felt among communities of color,” said Brian Capra, author of the Public Counsel report. “The data bears that out.”
Amy Westling, executive director of the Association of Regional Center Agencies, said the data analyzed by Public Counsel may not reflect the actual services a family receives. For example, some families get services for their children through Medi-Cal or another entity other than a regional center, she said.
She agreed there are factors that can lead to some families not getting as many services as others. One is a lack of providers that can serve families who speak languages other than English, or parents whose availability is limited because they’re working, Westling said. Another challenge is that some families, particularly those living in poverty, may also be grappling with food and housing insecurity. That can make it harder for regional center staff to reach and engage with them, she said.
“Regional centers do everything they can to reach out to those folks, but there’s always that next step,” Westling said. “There’s always that evolution of what could we do differently or better?”
King, who is a long-time parent advocate, helped launch the Community Empowerment Project in March 2019 after noticing that Black children with disabilities often weren’t receiving as many regional center services as the white families she worked with. Some didn’t get services at all, even though they likely qualified.
She attributed this to the fact that many African American community members distrust the health care and social service sectors due to historic discrimination, and because they don’t see their own identity reflected in the staff of these support organizations.
Economic and housing insecurity, which disproportionately affect people of color due to structural racism, create additional barriers. Families living in poverty and working multiple jobs typically don’t have the time nor the means to seek out services for their children with disabilities because they’re too busy just trying to survive, King said.
Then there are discrepancies that King attributes to bias. Information about regional center services and programs often doesn’t reach economically deprived neighborhoods, which are more often where people of color live, King said.
She and other advocates believe Black families also have to fight harder to access services than their white counterparts. King said Black parents often don’t realize they can push back when agencies like regional centers deny them a service.
“We need to recognize there are some biases,” King said. “I shouldn’t have to worry as a Black person or because I have a Black child: Are they going to listen to me today? Are they going to offer me the same services that child has over there?”
For Spanish-speaking parents of children with disabilities, language is often a huge barrier to receiving services, said JoAnna Van Brusselen, education coordinator for Support for Families of Children with Disabilities in San Francisco.
For nearly a decade, Van Brusselen has helped Spanish-speaking parents find special education services in various school districts for their children with disabilities. Too often, the school districts failed to provide quality interpretation at meetings when it came time to discuss a student’s special education plan. She also said important documents often weren’t translated into Spanish.
“I can’t tell you how many times I’ve sat in my office with legal documents in English, translating them word for word for the families,” she said. Not having adequate translation and interpretation as required by law “really disempowers families, and it really limits the knowledge they have of what’s going on with their child.”
Van Brusselen said she’s noticed that some medical and special education employees can be dismissive of low-income families who don’t speak English. Many of these families complain to her that they aren’t respected or listened to when they talk to their case manager, school official or child’s doctor. She attributes this to unconscious bias and a lack of cultural awareness among some professionals who provide social and health services.
One 2016 study looking at the disparities in service use and expenditures for people in California with disabilities cited many of the same reasons King and Van Brusselen point to.
“Clearly there is a need for comprehensive efforts to remove barriers of language, geography and cultural familiarity, as well as provider stereotyping and discrimination,” authors Charlene Harrington and Taewoon Kang wrote.
Over the past few years, California has tried to address the funding inequities in the regional center system, including the allocation of $11 million annually since 2016 to reduce disparities and increase equity in services. One of the projects is the Community Empowerment Project headed by King.
But four years into that effort, the inequities in services spending have worsened, the Public Counsel report found. Although the money spent on Black children has increased slightly, Latinx, Asian and Spanish-speaking children are receiving even less regional center spending than they did in the past.
“That’s really sad. That’s frustrating,” said Capra. “One wonders if this was really a good use of the funding” to reduce disparities.
What’s needed instead, he said, is structural change.
A major problem with California’s mechanism for funding regional centers is that allocations are based on prior spending, as opposed to the needs of the populations they serve. This limits the way money can be spent while solidifying previous funding discrepancies, Capra said, a constraint he hopes to see addressed.
Regional centers should also be required to develop and publish language-access plans that ensure non-English speaking families have equal access to services, Capra said. Other recommendations in the report include requiring the Department of Developmental Services to study and publish data on disparities and the effectiveness of disparity-reduction efforts.
“California has always been sort of the beacon,” Capra said. “If other states and models are going to look to California as the model, how can we continue to be proud of that model if it’s so inequitable?”
Westling, with the Regional Center association, countered that the disparity funds have been put to good use, and are helping centers and communities develop pilot programs that are increasing outreach and services. However, these programs and the funds supporting them won’t be enough to eradicate disparities across the system, she said.
“I think that over the last four years or so, we’ve seen some really good work, and it probably is time to take a step back and say, ‘What’s working and what isn’t? And how do we expand on what works?’” Westling said.
She would also like to see the state recruit more providers to serve California’s diverse population by increasing reimbursement rates for those who offer bilingual services and programs.
Increasing services offered via phone or computer — on Zoom, for example — could also potentially improve access for families. Telehealth offered during the pandemic has been met with positive feedback from working families who previously struggled to get to appointments because of the time and travel required, Westling said.
For a group of Black parents, grandparents and caregivers of children with disabilities, one Zoom gathering in particular has been a lifesaver during the pandemic. Hosted by the Care Parent Network, the group meets bimonthly for two hours so participants can share their joys, challenges and frustrations, and offer one another empathy and support.
This is also a space where families can share their fears and experiences around racism and disability discrimination. Many members report having to advocate fervently to ensure their children receive proper treatment, says one of the co-facilitators, Cherese LeBlanc.
“There was a need for just a space where… we could be unapologetic in expressing our experience, with others that get our experience,” she said. “And just be able to process collective trauma and participate in helping each other heal.”
One of the members is Nakenya Allen, whose 3-year-old son Landon has now undergone surgery and is receiving some specialist care. Allen has attended every meeting since the support group launched online in April, and said joining the group made her realize she wasn’t the only Black parent struggling to find help for a child with disabilities.
“I cannot tell you how much of a relief that is,” Allen said. “To hear other women share these stories, to have a place where it’s safe for us to do that, where no one’s trying to silence our voices… I feel like you heal.”
The experience has inspired Allen to organize Black Lives Matter protests in Martinez, where she lives, and to get involved in efforts to end racism in her town.
While Allen is receiving more assistance than she once was, she continues to fight for financial assistance so she can stay home. She also struggled for more than a year to obtain respite care that would allow her time to take care of herself, although she now expects to obtain it through her local regional center once the pandemic is over.
“I honestly believe that because I’m a Black woman, I was not given a lot of resources,” she said. “I felt forgotten. I feel like I’m really fighting with the system to try to get some help.”
This story was produced in partnership with the California Health Report and Resolve Magazine.
Photos by Martin do Nascimento at Resolve Magazine