by Arlene Martínez, California Health Report, via Disability Scoop | May 4, 2021
LOS ANGELES — Rubi Saldaña vividly remembers the moment in 2010 when she realized her then 2-and-a-half-year-old son, Abner, didn’t act like the other toddlers at her Mommy and Me class. Instead of interacting with the other children and participating in activities, Abner spent the entire class climbing on tables and chairs.
The teacher noticed too: “Your child has autism,” she told her.
“What’s that?” Saldaña asked.
That moment launched Saldaña, a resident of Downey near Los Angeles, on an 11-year fight to obtain services for Abner, now 13, as well as his brother, Daniel, 14, who was also diagnosed with autism. So far, Saldaña has attended at least five hearings to argue that the South Central Los Angeles Regional Center provide various supports for her sons, including, most recently, a type of autism therapy called Floortime. Many of her requests get denied, which Saldaña views as a reflection of a system that doesn’t serve all families evenly, especially Spanish-speaking families like her own.
Services for children and adults with developmental disabilities are coordinated through regional centers — private, nonprofit organizations that contract with California’s Department of Developmental Services. The state’s 21 regional centers serving 240,000 children and adults act as gatekeepers to a vast array of supports, including physical therapy, speech therapy, occupational therapy and respite care, for people with developmental delays. The centers conduct developmental screenings, determine eligibility for services and coordinate care.
But the number of services provided through regional centers varies vastly from region to region, and between racial and ethnic groups. Among the most striking disparities is the amount of money regional centers spend on services for children from Spanish-speaking households compared to those from their English-speaking counterparts. A 2020 Public Counsel study of youth ages 3 to 21 living at home found that, for every $1 an English-speaking child received in fiscal year 2018-2019, a Spanish-speaking child received 82 cents — a disparity that grew 46 percent over the previous four years.
The unequal spending on services has persisted despite the state allocating an extra $11 million annually to reduce disparities in the regional center system. Although the additional funding has helped some regional centers become more equitable, the money hasn’t significantly reduced service gaps overall. The disparate spending is significantly higher when all families are considered, not just those living at home: Latinx individuals received 62 cents for every $1 a white person received in fiscal year 2019-20.
“The needle really has not moved,” said Brian Capra, a Public Counsel Children’s Rights Project senior staff attorney and author of the report.
Latinx families not only get less money for services, they also receive fewer services overall. For example, at the Regional Center of Orange County in fiscal year 2019-20, nearly 26 percent of white youth ages 3 to 21 received no services compared to 47 percent of Latinx children, the Public Counsel report stated.
Language barriers fuel service disparities
A big reason for the disparity is language, advocates said. Securing services can be difficult and time consuming for any family. But English-speakers are more likely than those with no or limited English proficiency to understand how the regional center system works and to have the linguistic and economic resources to fight it.
Amy Westling, executive director of the Association of Regional Center Agencies, acknowledged that improvements are needed. But she said Public Counsel’s report doesn’t tell the whole story. Latinx families comprise a bigger share of younger families, so they may have more access to treatment beyond the regional center, such as through local school districts. Regional Centers aim to fill in service gaps, Westling explained, but there’s no way to quantify which services a child receives altogether because regional centers don’t pool their data with other government-funded entities that serve children with developmental disabilities.
“Without access to the full picture of what services and supports are available for each person, it makes it a little bit harder to figure out what they are missing that we could be providing and what we could hook them up with,” Westling said.
But Latinx families and their advocates insist the gaps in services are real. Some parents said they feel that regional center staff don’t really listen to Spanish-speaking families. And accessing all the services a center offers typically requires understanding the system like an attorney would, they said.
Rosie Sígala is a case in point. At Pasadena’s Huntington Hospital, where her son was born prematurely, Sígala learned about a number of wraparound services, including infant stimulation, occupational therapy, physical therapy, feeding therapy, applied behavior analysis and day care. When she moved to Lancaster a few years later, she said she could not access the same services, and many of the Latinx families there had no clue such services existed.
“I started to question and dive into the root cause of it,” said Sígala, whose son Nico Vasquez, now 16, has autism. “My child was no different. How was it that I knew about day care and personal assistance and (they) didn’t?”
Regional variations in services frustrate Saldaña too. She knows people who have received Floortime even though her own request was denied. Jesse Rocha, director for the Department of Children and Adult Services at the South Central Los Angeles Regional Center, said that families often wonder why they aren’t getting the same services as others. These decisions, he explained, are based on individual assessments.
He said his center has recently met the needs of families by increasing day care hours to account for caregivers’ commute times and by opening an office in heavily Latinx South Gate. The center is also promoting a “people-centered approach” that involves finding services to meet individuals’ needs rather than only offering them what’s already available.
Elizabeth Gómez, who founded a parent advocacy group called Integrated Community Collaborative with her husband, Fernando, said that instead of deciding which programs and services the community needs, centers should involve Latinx families in the decision-making process. “Give us the opportunity to help them implement models instead of ones that are forced into our community that are never going to work,” she said.
One reason for the variation in services is that each regional center has its own board of directors that sets policies based on the needs of the community it serves, Westling said. Now, the California Department of Developmental Services is in the process of developing a more comprehensive list of assistance that all regional centers offer. Meanwhile, Westling encourages families to explain their unique circumstances to regional center staff.
But caregivers and advocates said it’s difficult for Spanish-speaking families unaccustomed to the system to get their needs met. Several families told the California Health Report that regional center staff intimidated them when they spoke up about their needs. These experiences led them to fear that protesting too loudly could result in retaliation, or all of their help getting cut.
Westling attributed this pattern to miscommunication, particularly between English-speaking service coordinators and Spanish-speaking families. Regional centers are understaffed and underpaid, she said, and heavy caseloads cause much stress for service coordinators. Also, because the state does not pay extra to incentivize recruitment of bilingual coordinators, regional centers lack Spanish speaking staff, she added.
Working toward a solution
Maria Daane agrees that more funding is needed to bridge the language gap. She’s executive director of the San Jose-based nonprofit Parents Helping Parents, which teaches families about available services and works closely with the San Andreas Regional Center. Daane said Spanish-language outreach and training for parents can cost 25 percent more than the English equivalent because it often entails hiring interpreters and translating materials. Still, the state does not consider the language outreach is offered in when reimbursing Daane’s group.
Providers that contract through the regional center to offer services also lack Spanish speaking staff, said Daane. In March, 90 vendors signed up for an English-language virtual resource fair that her organization held to connect families to service providers. By contrast, a Spanish-language fair scheduled for May has only attracted a handful of vendors.
“We suspect it’s because the vendors have no one in the marketing (or) intake area who can talk to people about the program … or don’t have people to deliver the services in Spanish,” Daane said.
Parents Helping Parents recently received a grant from the state to provide more trainings to Spanish-speaking families. Other regional centers and affiliated organizations are also using disparity grant funds to boost services for non-English speakers. The Eastern Los Angeles Regional Center, for example, now has five service coordinators dedicated to helping Spanish- and Chinese-speaking families. The coordinators have also reduced caseloads so they can spend more time with each client. Meanwhile, the Tri-Counties Regional Center, which serves Ventura, Santa Barbara and San Luis Obispo counties, is partnering with community organizations such as the Boys & Girls Club to reach more Spanish speakers.
The challenge now is to spread successful strategies like these to other regional centers. Capra recommended the state reduce disparities further by changing how it distributes funding to each center. Currently, state allocations to regional centers are based largely on historical spending patterns, reinforcing inequalities. Instead, the state should distribute funds based on the actual need of the area’s population, he said.
Better data collection would also help, Capra said. He recommended regional centers review all cases where consumers unsuccessfully applied for services, explain why, and make those findings public.
Saldaña, now an advocate for Integrated Community Collaborative, said her fight to get services for Abner and Daniel has led to countless sleepless nights. For parents less experienced with the regional center system, especially those who don’t speak English, the process is even more exhausting, she said.
“Imagine you don’t know the system, but you know if you lose it’s the health of your child (at stake),” she said. “Could you sleep? Could you eat? What happens if I lose? Will my son never speak?”
There is hope, said Fernando Gómez, co-founder of Integrated Community Collaborative. The state is rolling out a new pilot project called the Self-Determination Program. It gives individuals and families more ability to choose providers and services based on their individual needs, provided they live at home. He called it a “game changer.”
In a statement, California’s Department of Developmental Services said that reducing disparities requires a “multifaceted approach” that includes self-determination programming, ensuring regional center boards reflect the community’s diversity, establishing statewide equity measures and funding a cultural specialist position in all 21 centers.
Additionally, the upcoming 2020-21 budget for regional centers proposes adding funding for parents, community leaders and other advocates trained to help families navigate the system.
“This model is an effective, evidence-based service approach that families value,” the department stated.
Gómez said organizations like his also aim to be part of the solution.
“We don’t want to blow up the system,” he said. “We want to fix the system.”
This story was produced in partnership with the California Health Report.