SBDSA families have been working together with Autism Society of Los Angeles families to address our concerns about our local regional centers. Twenty seven family members showed up to Harbor Regional Center’s Board Meeting. As their meetings legally must be held in public and must allow public comment we used our two minutes each to deliver this statement.
Many older families say that it is better than having no regional center. Looking back at the history of Regional Centers is an important reminder of how far we have come. At the same time many families look forward to Self Determination, a new program ‘coming soon’ which allows families to allocate their own funding. In the meantime, we might ask, if we are unhappy with the Regional Center, which exists to serve families like us, is there anything that we can do?Firstly – Know your Rights – explore the Disability Rights and SCDD websites to find what you need. When you have an IFSP or IPP bring with you THIS LIST of possible services that a Regional center can offer. Did you know that they can fund parent education such as conferences and classes, diapers, respite care, behavior intervention training and ABA, counselling, support aides for community activities and child care? Regional centers are now obliged to try to fund services by alternative means such as health insurance, but can also pay for co-pays for services funded by the health insurance. They can also help with applying for a MediCal waiver and IHSS.
You should be provided with a written copy of the IFSP/IPP and the services agreed to in a timely manner. Make sure that any requests for services that you make go into the IFSP/IPP You should receive an annual statement of services from your regional center. And if you ask for a service ANY SERVICE and it is not provided, they must provide you with a written letter of denial.
These administrative bits of paper are important. Whether you go to a fair hearing now or under Self Determination to increase your budget, you need to be able to show that you stated these needs in your IFSP/IPP and that the services were denied. If you do not get the important bits of paper, you can quickly file a 4731 complaint. When this is ignored by RC, please forward it to the DDS who need it for their oversight of the RC. (DDS: Appeals, Complaints & Projects Section, Department of Developmental Services, 1600 9th Street, Room 340 (MS 3-9), Sacramento, CA 95814)
If you disagree with the services offered, you can apply for a fair hearing appeal. The Clients Rights Advocates are also appointed by the state to help RC clients make such appeals. Their website offers step by step advice but I would also recommend giving them a call.
However most families do not appeal the decisions made by the Regional Center, perhaps as they see it a stressful and time consuming process. The RC’s therefore wield considerable power over how state funding for people with Developmental disabilities is disbursed. The decision made by each regional center creates great disparity between how families are treated, depending on their willingness to appeal, their language abilities and their knowledge of the system, in addition to the zip code disparity created by the geographical monopoly each Regional Center has over its clients.
For example, according to 2016 figures, the average Westside Client cost the state $15,910 a year, while the average Harbor Client cost only $9,419 and South Central $9,911. Looking at children ages 3-22, Westside spent $8,870 per capita, South Central spent $2,933 and Harbor spent $2,618. Harbor’s average spend is the lowest in California.
The disparity particularly affects people of color and Spanish speakers. All the disparity data is available here, but just as an example, in South Central, the average white client cost $30,924 while the average African American client cost $16,706. In Harbor, for English speakers the per capita spend was $10,251, for Spanish speakers $4,964.An institution peculiar to California, the Regional Centers were created by the Lanterman Act in 1969. The State of California accepted responsibility for people with developmental disabilities and would provide services to meet their needs. However Frank Lanterman, a Republican from La Cañada did not believe the individualized services needed could be provided by a governmental agency. Instead the newly recognized rights of individuals with development disabilities would be provided by private non –profits using state funds and contracted to the Department of Developmental services. [i]
The system of Regional Centers was supported by many organizations such as ARC of California. It was very successful at what it was designed to do: to allow people with developmental disabilities to live in the community or with their families rather than in State Hospitals. By 1978, the system in California had “grown from 2 to 21 regional centers serving nearly 50,000 clients. Virtually none are on waiting lists for state hospital admission.” By the 2001the state budget for community services was $2 billion and regional centers serve 171,430 consumers. The average annual cost for a consumer residing in the community receiving regional center services was $11,886. The average annual cost for a person residing in a state developmental center was $163,060. [ii]
The unique status of RC’s as private non-profit corporations contracted to the state to disburse public funds has important implications for accountability. The important legislation that applies to openness and public reporting in public agencies (such as the Brown Act and the Bagley-Keene Act) does not apply to RC’s. However, the Lanterman Act as it stands today does contain many requirements that govern the openness and accountability of RCs. The meetings board of directors of each regional center must be scheduled, open, and public. At each meeting, time must be allowed for public input on any issue. In addition, the Lanterman Act provides considerable oversight of Regional Centers from the Department of Developmental Services as well as the State Council on Developmental Disabilities. If you feel that your Regional Center is not serving you as it should, you can write a letter to the Department Of Developmental Services expressing your concern.