Los Angeles, Calif. (March 22, 2017) – According to testimony during an oversight hearing last week in Sacramento, California’s Department of Developmental Services (DDS) has failed to address disparities in resources and services allocated to minority children with autism and other developmental disabilities despite five years of recommendations and reforms from legislators, professionals and advocates. During the March 14 hearing held by the Senate Human Services Committee, attendees were informed that minority children receive less funding and support than white children suffering from the same disorder. DDS officials faced sharp questioning from lawmakers and autism advocates who were visibly frustrated by the agency’s lack of progress in addressing the disparity that has been a long-standing problem.
Areva Martin, a civil rights attorney based in LA, found it particularly disturbing that the recommendations of a task force—formed years ago by former State Senate leader Darrell Steinberg—had yet to be implemented.
“Senator Steinberg convened an impressive task force that met for a year,” explained Martin, who is also the co-founder of a California nonprofit focused on supporting children with autism. “After extensive work, the task force made clear recommendations about changing the budget process so children were supported based on need and not race.”
“To learn that these recommendations have not been implemented by DDS is shocking and frustrating,” says Martin. “Then to hear they want more time is unfathomable.”
Martin describes DDS’s funding practices as rewarding the wealthiest families with a plethora of valuable services, while providing the least amount of help to California’s poor families.
“The families we serve suffer from a state-funded program that consistently spends less on their children than white kids in more affluent parts of the state.”
The glaring services gap first came to light in 2012, after a LA Times investigation revealed that for autistic children ages 3 to 6—a critical period for treating the disorder—DDS spent an average of $11,723 on Caucasian children in 2010, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on African American children.
The article also pointed out that obtaining help for an autistic child often requires waging a battle against the agencies that dole out the services and funds. Parents with the time and resources to aggressively petition agencies inevitably receive much more, resulting in enormous racial and socioeconomic disparities. The investigation found that it was not uncommon for autistic children from affluent families to receive 25 hours a week of one-on-one behavioral therapy, while low-income parents oftentimes are not informed about the public services available.
In California, some 320,000 people are served by the state’s developmental disabilities service system through a network of 21 nonprofit regional centers that are tasked with evaluating the needs of individuals with developmental disabilities and coordinating services. For many parents with children on the autism spectrum, the regional centers are the only avenue for treatment.
With statistics showing the disparity virtually unchanged from 2012, many at the hearing were outraged by DDS’s slowness in addressing the problem.
Abner Antunez, a parent whose son has autism, testified that despite his multiple attempts to access services, he waited a year and a half for services. “Early intervention is critical for children with autism and other disabilities. Every day you wait for services puts your child another day behind.”
Tien Nguyen, whose sister is a patient at one of the regional centers, testified that when regional centers say no to service requests, some families, due to their cultural background, will accept it and not ask for services again despite their need.
Nancy Bargmann, DDS’s director, acknowledged that efforts made by the state and the regional centers have made little impact. “It’s scratching the surface,” she stated during the hearing. “We have more work to do.”
The interim executive director of the Association of Regional Center Agencies, Amy Westling, stated, “If there were easy solutions, we wouldn’t be sitting here today five years later.”
Martin reiterated recommendations for changes that were submitted in a joint written report from Special Needs Network and Public Counsel. Both agencies requested that the state take seriously the pervasive disparities. They asked that previously frozen funding for respite and recreational services be restored and that mandatory training required to receive behavior therapies be eliminated. The report also called for a new DDS budget and allocation methodology for funding services driven by client need instead of historical spending trends.
Martin ended her emotional testimony with a quote from civil rights leader, Dr. Martin Luther King Jr. stating, “The time is always right to do the right thing.” Martin reiterated that the time is now to do the right thing and that “it’s our moral obligation to give every child with developmental disabilities the opportunity to reach their highest potential irrespective of their race or zip code.”
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ABOUT SPECIAL NEEDS NETWORK INC.
Special Needs Network is based in Los Angeles and is California’s leading grassroots autism advocacy organization. SNN was established to help individuals and families faced with autism and other developmental disabilities. The organization focuses on raising public awareness, impacting public policy, increasing education and access to resources for families, children and adults. Since its inception, SNN has served more than 35,000 individuals and families impacted by autism.
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Public Counsel is the largest pro bono law firm in the nation. Public Counsel works with major law firms and corporations to change people’s futures. The firm is made up of 71 attorneys and 50 support staff – including five social workers. Staff—along with more than 5,000 volunteer lawyers, law students and legal professionals—assist more than 30,000 children, youth, families, and community organizations every year.