Applying to a regional center in California
At the time Nathan was 17 and finishing high school, I didn’t know much about regional centers. Our main exposure had been through our younger son Alan, who as a baby was placed with us through the Fos-dopt program. A nurse from the regional center, who had visited Alan at his previous foster home, came to our house to check on Alan’s progress in reaching developmental milestones.
But years later with Nathan’s graduation approaching, as I talked with transition specialists, vocational training providers, or people who ran residential facilities for atypical adults, many of them said something like “well first, get Nathan into the regional center; that way he’ll be able to access our services.” From them I got the general idea that regional center staff find appropriate resources for their clients.
Also, around this time I had found the website for the Adaptive Learning Center in Concord CA, which I wrote about here. It serves a population that includes those with ADD and/or learning disabilities as well as autism spectrum, epilepsy, etc. And, the website indicated that being a regional center client was one way to fund the costs of the ALC program.
None of the professionals I spoke to indicated that it might be a long shot for Nathan to qualify for regional center. The advice I was getting could be summarized as: apply for SSI, and get him into regional center.
As I have chronicled here, we couldn’t effectively apply for SSI until Nathan turned 18. On the flip side, we would have to apply to regional center before he turned 18. Once he became “an adult”, it would have to be his decision to apply – and that was highly unlikely.
I picked up the phone and described Nathan’s challenges to someone in the Intake Coordinator’s office at the Inland Regional Center, which serves our area. She wearily explained he would have little chance of being found eligible without an official autism diagnosis.
At this point we wouldn’t be able to get appointments with an appropriate diagnostician in the few months before Nathan turned 18. That’s why we very much appreciated the testing subsequently conducted by the school district, as described here. The school psychologist had told us that a regional center would often accept the results of these assessments. As it turned out, Nathan was assessed as being “autistic-like”, with scores well exceeding the minimum threshold for that label.
Armed with these results, I spoke once again to the Intake Coordinator. She sighed and said she’d send us the intake packet.
The packet included three forms that we had to complete and return. Not too long after that, we received notice for an appointment for a “Social Assessment” the following week. The paperwork also indicated that a medical assessment and/or a psychological evaluation would be conducted later in the intake process. The ultimate decision about whether the applicant qualified for services would be discussed in a “Team Conference”, which would take place after all the assessments were completed.
We were asked to bring a copy of Nathan’s birth certificate, his Social Security card, and copies of any appropriate psychological, school, medical, or developmental records to the Social Assessment.
The assessment was conducted by a psychologist who spent about half an hour reviewing Nathan’s records and asking questions. Then she left the room to confer with her associates.
She returned several minutes later and told us that Nathan did not qualify for regional center services. The reason she gave was that Nathan’s problems seemed to be primarily psychiatric or psychological, not primarily due to autism. She gave me a few suggestions on where else to find services, made sure I had information about the appeal process, and showed us the door.
I was dejected: ALL THAT EFFORT we (and the school district personnel) went through! And I was stunned: I didn’t expect a final verdict until the Team Conference, which apparently was not going to happen (no psychological assessment?) And I was puzzled: why had all the professionals I’d talked with seem to assume Nathan could get in?
Now that I’ve learned more about regional centers, the outcome for Nathan makes sense – mostly. See what you think.
This link from the California Dept. of Developmental Services tells us that regional centers are nonprofit corporations that contract with the state to provide or coordinate services for people with developmental disabilities in the local community. Regional centers do not provide housing, but help individuals and their families with housing, employment, education, socialization, etc. The population served includes people with autism, cerebral palsy, epilepsy, intellectual disabilities (earlier known as “mental retardation”), and conditions that are similar to intellectual disability. The condition has to have started before the person turned 18 and must be expected to continue indefinitely.
Furthermore, the individual must show impairment in at least 3 of these areas: self-care, receptive and expressive language; learning; mobility; self-direction; capacity of independent living; and economic self-sufficiency.
This article from by the SCAN Foundation gives a helpful overview of how the regional center system evolved as a result of the Lanterman Developmental Disabilities Services Act of 1969. Prior to the passage of the Lanterman Act, services were only available to this population through institutionalization in one of the State’s overcrowded developmental centers (previously included in the term “state hospitals.”) We’ve probably all heard stories of the nightmarish conditions known to occur in those facilities.
At present, 21 regional centers serve the vast majority of developmental services consumers in California, with only 1% of that population being housed in state-run institutions. Each regional center client is assigned a Services Coordinator (what I would think of as a case worker) who identifies and pursues the services that would benefit the client.
Regional centers face budgetary challenges (of course), in large part because of the growing percentage of individuals diagnosed with autism. Since regional centers are individual nonprofit corporations, there can be (and are) differences in how they are run: nuances of who qualifies for services, the range of services provided, and how easy it is to get the services needed.
I’ve heard from a few sources that our particular regional center has a reputation of being one of the most difficult ones to get into, and is difficult to get services from once you are a client. I’ve concluded that the professionals who had suggested applying did not intend to mislead me, but were probably used to dealing with the less-strict regional centers in nearby counties.
I’ve also heard that even the “good” regional centers can be a challenge to deal with. For instance, I was told of another regional center taking about a year to respond to a situation the family considered to be an emergency.
An acquaintance whose son is a regional center client because of fragile X syndrome said that our regional center hardly ever takes new clients over the age of 2. She was therefore not surprised that Nathan had been turned down.
Should we have tried the appeal process? An applicant has 30 days after receiving documentation of the regional center’s decision to request a Fair Hearing, in which an Administrative Law Judge would listen to both sides of the issue and make a decision. I spoke to a Clients’ Rights Advocate at Disability Rights California about the likelihood of a successful appeal in Nathan’s case. The bottom line was that without a new independent assessment (preferably from a neuropsychologist) and expert testimony, it was doubtful the appeal would succeed. Another option would have been to reapply after having acquired the independent assessment – but Nathan would have been over 18 by then.
Here is how I now view the situation: in deciding that Nathan was ineligible for its services, our regional center was abiding by the letter of the Lanterman Act. He came closest to qualifying by being found “autistic-like”, but the Lanterman Act specifies “autism.” In the months and years after our regional center experience, Nathan has been officially diagnosed as being on the autism spectrum – most commonly as having Aspergers – but he is not “autistic” in the classic sense. That being said, he has other mental health challenges which, combined with being on the spectrum, lead to significant impairments. But because his impairments are not caused by any of the developmental disabilities specified in the Lanterman Act, he does not qualify for services from our regional center.
In the real world of limited funds and services, priority has to be given to our most severely developmentally-disabled population. It wouldn’t be right if someone more in need was denied regional center services, or provided with less-than-adequate services, because someone like Nathan was being served instead.
However, it seems there is a growing need for a new or revised system for providing services to a population whose impairments are not primarily the result of a developmental disability. Wouldn’t it be better if support services were provided based on level of impairment, regardless of what the individual has been diagnosed with, or whether s/he fits into any neat diagnostic categories at all?