by Claudia Boyd-Barrett, California Health Report (via Disability Scoop) | January 28, 2022
LOS ANGELES — Mayra Jimenez picked up her phone and braced herself.
She was trying — again — to get independent living skills training for her son Bryan, who has autism.
If she and her husband had a way to access the training themselves — and could afford it — they would sign Bryan up today. But the training is only offered through a state-funded system of nonprofit organizations called regional centers. Through this system, California is supposed to guarantee that children and adults like Bryan who have developmental and intellectual disabilities can get the services they need.
What Jimenez has realized, however, over the four years she has tried to access these services, is that a law and its implementation are two separate things. Bryan, now 20, is still waiting to receive independent living skills training, which he needs to help him learn to take care of himself now that he is an adult.
“A month passes, two months, three months, I don’t have a provider,” Jimenez said. “Four months, a year, longer and longer.”
Research shows that Latinx families like the Jimenezes are less likely than white families to receive services through regional centers, which serve as care-coordination centers for people with disabilities. The 21 centers receive state funding to assess needs and connect families to services for children and adults with developmental and intellectual disabilities.
Jimenez, who leads a support group for Latinx parents in Long Beach, where she lives, said she and other families with children served by the nearby Harbor Regional Center struggle to obtain the resources their kids are entitled to. The parents report dealing with bureaucratic hurdles, endless phone calls and arduous waits. Many are single-income households, because one parent needs to care for their child with disabilities, which makes access to free or low-cost services through the Regional Center even more critical.
Jimenez is now part of a coalition of Latinx parents called Padres Buscando el Cambio, or “Parents Seeking Change.” With assistance from disability advocacy group Disability Rights California, the coalition is suing Harbor Regional Center, alleging discrimination against Latinx children and adults with disabilities and demanding more services. Filed Nov. 8 in Los Angeles County Superior Court, the lawsuit accuses the center of routinely dismissing Latinx families’ requests for help, of providing less comprehensive services than needed, and of burdening families with unnecessary requirements as well as failing to adequately inform them when services are canceled or changed. Other allegations include not providing information to Spanish-speaking families in their language, and of insensitive treatment of Latinx parents.
The lawsuit also names the California Department of Developmental Services (DDS), which is responsible for ensuring regional centers comply with the law.
“DDS’s and Harbor’s actions harm Hispanic/Latinx children and their families,” the lawsuit states. “Despite repeated notice — for years — of the discriminatory results of their actions, DDS and Harbor did not take steps to stop this discrimination. This lawsuit is brought to end this discrimination.”
The parents want the center, and others like it across the state, to fairly distribute funding and services to Latinx people with disabilities. These services are designed to allow children and young adults to remain living in their family’s homes, instead of needing to move to a care facility. Advocates hope that, if successful, the lawsuit could improve access to services for Latinx families at other regional centers in the state too.”
Regional Centers such as Harbor should also develop better practices for providing respite care and personal attendants, and take into account when parents have other caregiving demands at home such as the need to look after additional children, the families suggest. One path forward could be to develop personalized plans for people with disabilities that include input from the families about what they need, as already required by state law, rather than offering one-size-fits-all solutions.
The family caregivers are also requesting more help from regional center staff to secure services and find providers, whether these are authorized through the center itself or offered through other sources such as local school districts. These can include occupational and speech therapy, or at-home supervision. Many Latinx families lack the time, knowledge of the system and English language skills needed to do this by themselves, Jimenez said.
A history of spending disparities
California’s Regional Centers have long been criticized for disparities in spending and service provision among different racial and ethnic groups. A 2020 study by the pro bono law firm Public Counsel, for example, found that for every $1 Regional Centers spent on a white person in fiscal year 2019-20, Latinx individuals received just 62 cents. According to the lawsuit, Harbor Regional Center authorizes only 37 cents for Latinx individuals with developmental disabilities for every $1 authorized for a white person.
This unequal spending has persisted, despite an $11 million annual allocation from the state aimed at reducing disparities in the Regional Center system.
Nishanthi Kurukulasuriya, a staff attorney with Disability Rights California, said the types of challenges reported by Padres Buscando el Cambio are likely not limited to Harbor Regional Center. She hears from parents with similar concerns from other parts of the state too.
“It is a statewide, systemwide (problem) and there are other parent groups trying to find ways to get their Regional Centers to hear them and to make changes,” she said. “Hopefully that will happen, but we think not without some kind of push or pressure that highlights these issues and in a way that makes the decision makers decide to change how they are responding.”
While families struggled to get services from Harbor Regional Center before the pandemic, the situation became dire after March, 2020, Jimenez said. Schools and day programs closed, leaving many families struggling to care for their kids all day at home. Some parents contracted COVID-19, which added to the difficulty. Many had to juggle the needs of multiple kids. Jimenez said families begged the Regional Center for respite care and other help, but received no support.
“It was a lot of stress and work for the parents,” Jimenez said. “We didn’t know what to do.”
Harbor Regional Center did not respond to a request for comment. Neither did the Department of Developmental Services, citing the pending litigation.
However, in a February 2021 letter responding to pre-litigation demands, the agency’s assistant deputy director in the office of community operations, Ernie Cruz, said staff had met with families to discuss their concerns, and brought these to the attention of Harbor leadership. Cruz said the department requested Harbor take a series of corrective actions. These included making sure Spanish-speaking families have access to information in their preferred language, reviewing notification procedures, and addressing accusations of insensitivity toward Latinx clients by providing training to staff on cultural and linguistic sensitivity.
But Kurukulasuriya said that won’t be enough to ensure equitable access to Regional Center services. Instead of making slight adjustments, the system needs an overhaul, she said. The state currently provides funding for parent and community-led programs to help families of children with disabilities navigate the process or obtaining services for their kids. But the main problem, as Kurukulasuriya sees it, is that the system is so difficult to navigate in the first place.
“Maybe something that might be more effective … is for Regional Centers to remove the barriers instead of having folks fund navigator programs and navigate around the barriers,” she said. “It just keeps putting the responsibility on the parents, on the self-advocates, on the clients served by the Regional Centers to change how they do things, when they’re not the ones who are discriminating against themselves.”
Jimenez has felt this pressure. She said the Regional Center took three years to enroll Bryan in applied behavioral analysis therapy, a standard behavioral intervention for children and teens with autism. And he’s been on a waiting list for over a year to secure a job coach from the center so that he can complete a work training placement at a pet grooming center, his mother said.
On a recent call with his case coordinator to complain about the long waits, Jimenez said she was told to teach Bryan the life skills herself.
“Why are those expectations on me to do these things,” she said, “when they know my son has a disability?”
This story was produced in partnership with the California Health Report.