Los Angeles, Calif. (April 11, 2017) – In a series of recent hearings and testimonies taking place in Sacramento, community advocates, professionals and medical experts are asking elected officials to restore services for disabled children and families. The suspended services include educational, therapy and respite programs for children with autism and other developmental disabilities.
Last week, Assemblyman Sebastian Ridley-Thomas (D-Los Angeles) introduced Assembly Bill 1610, co-sponsored by Special Needs Network and Public Counsel, which would reinstate funding for these developmental services. Backers say it will address severe racial disparities that exist within the state’s Department of Developmental Services (DDS).
“This is a wraparound proposal to improve the delivery system for some of California’s most vulnerable – those we made a promise to with the Lanterman Act,” stated Ridley-Thomas during the April 4 hearing.
Ridley-Thomas said his bill would “repeal statutes enacted in 2009 which suspended certain services such a non-medical therapies,” and “restore respite services to families served in the Early Intervention Services program.”
AB 1610 will improve access to services for consumers and their families by requiring regional centers to provide information in a culturally and linguistically competent manner. “Currently, access to developmental services through our regional center system is governed by complex legal rules, administrative procedures, and lack of clear pathways for those for whom English may be a second language or a non-native language,” explained Ridley-Thomas. “This bill is a step in the right direction for a number of reasons.”
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.
“It is beyond time for us to address all racial disparities in our state,” stated Ridley-Thomas. “While we can’t solve all of the issues in one fell swoop, Californians can champion fairness and equity for our most vulnerable children.”
Areva Martin, president of Special Needs Network, reminded Assemblymembers that suspension of these services was to be temporary. The restrictions were to be lifted once DDS developed and implemented budgetary improvements. Martin noted that DDS abandoned its efforts years ago and the services remain indefinitely restricted without any way to reinstate them, unless the state changes the law.
The bill would also establish a task force to create a budget and allocation methodology for purchases of services based on need. In 2012, the former DDS director, Terri Delgadillo, testified at a similar informational hearing that such a funding formula would be “blind to ethnicity” and a “starting point” in addressing the issues of disparities.
“There is no reason in a district like mine which is served by three regional centers that I have disparate outcomes for families simply by zip code, income status or the color of their skin,” said Ridley-Thomas. “That is unacceptable.“
Martin noted the $400 million infusion into the developmental services system — funding that is to be appropriated annually. The first allocation was appropriated to DDS last July, yet little is known publicly about any expenditures and oversight measures DDS has planned for these funds, creating concerns among advocates about the lack of transparency. Martin suggested that the state reconsider the allocation of these funds in order to restore the suspended and restricted services.
Assemblyman Tony Thurmond reminded the group that he played a key role in getting this funding to the developmental services system and expressed his commitment to making sure “California gets things right.”
A report from the Senate Human Services Committee confirmed that minority families utilize DDS services, such as social and recreational programs, at higher rates than white families (pg. 11).
“Minority families tend to keep their developmentally disabled at home, requiring a greater use of community-based services, where white families are more often to place their loved ones in expensive out-of-home placements that include the community services,” said Martin.
BJ Freeman, PhD, an emeritus professor at UCLA School of Medicine who has worked with children with autism-spectrum disorders for more than 40 years, also testified during the April 4 hearing. She informed the committee that research indicates there is a longer wait for minority families to receive services. She went on to remind officials, “the earlier we start intervention for children with autism, the better.”
“It is clear there is a need for funding to allow families to access services earlier,” reiterated Dr. Freeman. “Bill 1610 addresses some of the huge disparities that exist for families and children of color.”
Dr. Freeman shared with the committee that oftentimes she has been criticized for requesting too much. Her response, “When my families in South and East LA get the same treatment as my families in West LA, I’ll shut up.”
According to testimony during an oversight hearing on March 14, DDS has failed to reduce disparities in resources and services allocated to minority children with autism and other developmental disabilities despite five years of recommendations and reforms from legislators and advocates.
During the Senate Human Services Committee oversight hearing, attendees were informed that minority children continue to receive less funding and support than white children suffering from the same disorders. Prior recommendations for DDS came from a 2012 task force, formed by former State Senate leader Darrell Steinberg, and many have yet to be implemented.
Several proposals, including some made by the 2012 task force, were submitted to the Senate Human Services Committee in a joint written report from Special Needs Network and Public Counsel. Both agencies requested that the state take seriously the pervasive disparities.
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.
With statistics showing the disparity virtually unchanged from 2012, many at the March 14 hearing were outraged by DDS’s slowness in addressing the problem.
A California parent whose son has autism, testified during the March 14 hearing 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.”
Special Needs Network has created an online petition in support of AB 1610.
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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.
ABOUT PUBLIC COUNSEL
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. To learn more, visit publiccounsel.org.