This blog post is from Marianne Sullivan, RN, MN, Assistant Director of National Outreach and Resources in Family Services
In California, state money for the developmentally disabled flows to service providers through 21 nonprofit regional centers, which along with families, decide whether a child has a qualifying condition and what services to provide.
This week I was pleased to attend the California Senate Select Committee on Autism Spectrum Disorders where the special topic was "Ensuring Fair and Equal Access to Regional Center Services in CA for Underserved Ethnic and Disability Communities in CA." The hearing room was filled to the point of standing room only with families affected by autism, showing their support and offering their stories.
State Sen. Darrell Steinberg, head of the Select Committee, asked to hear from a variety of people, including family advocates, CA Regional Center Directors, Department of Developmental Services (DDS) staff; but the group he was most interested in hearing from directly was the families. He openly called them to the front of the hearing room to insure they were heard and many Latino and African American families offered their testimony. Steinberg extended the committee session to make certain everyone had a chance to testify. At the conclusion of the session, he called for legislation to provide greater accountability to prevent disparity between funding provided to Asian, Latino African American, and Caucasian families under the $4-billion-a-year Entitlement program overseen by Dept. of Developmental Disabilities.
California, unlike many other states, has the Lanterman Act, which guarantees people with developmental disabilities the same legal rights and responsibilities guaranteed all other persons by federal and state constitutions and laws, and charges the Regional Centers with advocacy for, and protection of, these rights. However, testimony during the hearing documented this doesn't always happen for a variety of reasons. Many parents of children with autism have to become “warriors” when dealing with the funding agency and this has been especially true of minority parents.
In a December, an found that for autistic children ages 3 to 6, the Developmental Services Department spent an average of $11,723 per child on Caucasian children in 2010, compared with $11,063 on an Asian child, $7,634 on a Latino child and $6,593 on an African-American child. Family Rights state that the most disadvantaged get the least funding for services. They recommend that all families get equal treatment.
Autism Speaks Family Services has been making, and now will focus its outreach efforts to the underserved and underrepresented communities through partnership with such agencies like Advocacy group Public Counsel, Special Needs Network, Disability Rights of CA. Agencies will be encouraged to take advantage of our that help to educate and guide families on how to best advocate for children.
We are pleased with the recommendation from the Select Committee and encourage all involved in the autism network to make certain the changes occur in terms of equal funding.