Ayden was diagnosed with autism when he was 1 and a half. He’s now 7, and I’ve been his pediatrician for the past year.
He is smart, his teachers say, but he struggles with focus, disruptive behaviors and social interactions.
Ayden, who lives in a low-income neighborhood and is Latino and African American, is less likely to receive developmental services than a white child with the same diagnosis living in a higher-income area, despite a law mandating state funding for comprehensive care for anyone who qualifies.
This disparity is disconcerting, has persisted for more than a decade and puts thousands of children like Ayden at a lifelong disadvantage. Early intervention programs, such as behavioral therapy for autism, have proven long-term benefits for those with disabilities.
Since he started school, Ayden’s family has struggled to get him services. Ayden, who is in second grade, lives with his mother and great-grandmother, Shirley Morales-Ramsey, in South Central Los Angeles.
“The teachers told us that Ayden is really bright, but his behaviors disrupt the class,” Morales-Ramsey said.
Behavioral therapy could help, but Ayden receives only five hours of the treatment per month.
I know from personal experience that it doesn’t have to play out this way. My friends’ son, Tyler, is an example.
By 7 months of age, Tyler’s doctors knew he wasn’t developing typically—he didn’t babble or sit up. “I give credit to Tyler’s pediatrician, she sent us to Regional Center very early,” said Ronda Kopito, Tyler’s mother. “But, navigating the system was a nightmare.”
Tyler is Caucasian and by age 5 was attending special classes in Torrance Unified School District. Autism specialists recommended more services, but Tyler wasn’t getting them.
Kopito became an outspoken advocate. She and her husband, Andy Kopito, petitioned for services through Harbor Regional Center in Torrance. Tyler received speech therapy, an assisted communication device and a classroom aide. Now 23, he is verbal, social and actively involved in his Jewish community.
Ronda Kopito’s advocacy has been critical for Tyler’s success.
But for many of my patients, it is a different story. I’ve seen how hard it is for them to get services.
Many of the kids who come to my clinic have parents who work long hours to make ends meet, lack reliable transportation or are unsure how to advocate for their children.
Other systemic health-care problems can contribute to the inequities. Health-care systems often suffer from underfunding, inadequate staffing and implicit bias, which are the unconscious views that influence how professionals treat minority patients.
Disparities in Funding
The Lanterman Act, passed in 1977, assures state funding to care for children and adults with disabilities.
The California Department of Developmental Services, DDS, is responsible for administering the law and provides money for services through the state’s Regional Centers. These agencies are non-profit and serve as case managers.
Regional Centers determine if someone has a qualifying disability and what services to purchase for them. Ayden, for example, is a client of South Central Regional Center, one of the 21 regional centers in California.
DDS and Regional Centers must track and publish data about the money spent on clients, broken down by demographics. DDS’ budget for 2017-18 exceeds $6 billion.
But there are marked disparities in the distribution of funding.
Five years ago, the Los Angeles Times reported about the spending differences for Regional Center clients based on race, ethnicity and family income. The average funding per person was nearly $4,000 more for whites than for African Americans and Latinos.
This year, Public Counsel reported that the disparities have persisted. They found that in 2015-16, the overall expenditures were higher in Regional Centers with more white clients than for centers with more Hispanic/Latino and black clients.
“To reduce the disparities, DDS offered additional funding for projects to all Regional Centers,” said Sandy Rivera, the Equity and Cultural Diversity Specialist at Westside Regional Center.
It’s unclear what will solve the problem, as the underlying causes of the inequities, and thus the solutions, may vary by community. With the additional money, nearly all Regional Centers, as well as some community-based organizations, are developing pilot projects to address the disparities within their own populations.
Westside partnered with the Autism Society of Los Angeles, a non-profit community organization to assess disparities. The organization developed the Parents Empowerment Project, which uses a parent-to-parent model. Experienced Westside minority parents, called the PEP Squad, serve as mentors. They help minority families who aren’t fully utilizing services identify and overcome their barriers.
“From focus groups, we learned the biggest barrier for our Hispanic and African American families was distrust for Regional Center, Rivera said. “We thought parent-to-parent was the best way to build trust.”
Westside’s per-person spending is $8,000 higher for white clients than for Latinos. The center serves L.A.’s wealthy communities such as Bel Air and Beverly Hills, as well as lower-income cities including Hawthorne and Gardena. Nearly a third of clients are white, a third are Hispanic/Latino, 22 percent are African American and 4.5 percent are Asian.
The focus groups have also found that a lack of information, language barriers and inflexible work schedules can contribute to the disparities. Some immigrant parents are undocumented and don’t speak up out of fear of deportation. Others have concerns about the stigma of having a disabled child or don’t want to question authorities.
Kopito, now a resource specialist for Autism Society of LA, helps to empower families like these to speak up. She is planning to help Ayden’s family with petitioning for resources.