Black, Latinx children with disabilities face various inequities in health and social care

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. “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 special 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 Latino, 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 f lexible 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 nav igate California’s labyrinthine system for children with disabilities, advocates said.

“There’s just a lot of systemic racism,” said Kausha King, director of the C ommu n it y Empower - ment Project, a program that provides navigation support and training to Bla ck families of children with special needs in A lameda 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 d i s p a r it ie s between how children with disabilities are ser ved, depending on their rac ia l a nd e t h n ic ba ckground. For years, families of color and non-english spea k in g familie s have received fewer serv ices than White families through California’s 21 social ser v ices agencies, known as regional centers, for children with developmental disabilities. Regional centers are communit y- ba sed nonprofit agencies that contra c t w ith Ca lifor nia’s Department of Developmental Ser vices 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% less than the amount spent on White children. Asian children received 16% less funding than White children in the 2018-2019 fiscal year, the most recent period for which data is available. Latino children fared the worst, receiving only 69% of the spending on ser v ices that White children received.

Other studies point to inequalities in diagnosis rates for conditions such as 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. Latino 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 MediCal 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.

A nother challenge is that some families, part ic u la rly t ho s e l iv i n g 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 ever y thing 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?”

K ing, who is a longtime pa rent a dvoc ate, helped launch the Commun it y Emp ower ment 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 A merican 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 ba r r iers. Fa milies 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 K ing 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: A re they going to listen to me today? A re they going to of fer 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 Jo

Anna 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 special needs. 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

“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. (It) really disempowers families, and it really limits the knowledge they have of what’s going on with their child.” — Joanna Van Brusselen, education coordinator for Support for Families of Children with Disabilities in San Francisco

“There’s just a lot of systemic racism. 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.” — Kausha King, director of the Community Empowerment Project

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.