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?

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About janet565

I've lived in the Inland Empire of Southern California since 1982. Born and raised in New Jersey, I've also lived in upstate New York and in Oregon. My profession involves maps and geography, which is usually very interesting. My hobbies are pretty boring - none of them involve tigers (or ligers) or jumping out of aircraft - so they do not bear mention here. I hope you find the blog useful, and wish you well....

20 responses to “Applying to a regional center in California”

  1. Karen Gilman, LCSW says :

    Yes, it always pays to appeal. And yes, go get that additional psychological assessment or neuro-psych asssessment. It doesn’t necessarily matter that the assessment and eventual diagnosis of the autism occurred before age 18 but that the autism was present before age 18. (Even with the symptoms of being autistic-like, having an IEP, having a ream of therapies etc., obviously whatever it was did exist before 18.) You may find it useful to appeal, start acquiring additional documentation, get the assistance of an attorney, private or pro-bono. And any or all parents in your situation should apply as early as possible in the child’s life, and always ask for decisions and denials in writing, because you “intend to appeal.” And yes, treatment by the staff of the various regional centers does vary by regional center, as with any agency.

    Like

    • janet565 says :

      Thanks for your input, Karen! You’ve given me and other parents in similar situations some very helpful guidance.

      Like

    • tuli says :

      Sorry, but most California Regional Centers are out of control. Too many people working in them who know nothing, do nothing, get nothing done for the developmentally disabled. Nobody is monitoring these regional centers. The agency supposedly monitoring them, Dept of Developmental Services is useless. Their idea of an “investigation” is to call the Regional Center being investigated and ask them what’s going on. They never dig deep. Never look into the matter. IT’s a complete joke.

      Liked by 1 person

  2. davaddo says :

    I find your tale alas typical of the complete breakdown of the system. Due in no small part to the lack of reasonable support and funding. The budgets for the regional center system have been flat to negative growth for well almost a decade. Take in the process of inflation and one can see why the system is for most part in self preservation mode. In fact many of the “safety net” agencies are in the same leaky boat.

    In my own case I have given up on getting much of anything for my daughter, who is 17, attending high school. We walked away from Regional Center two years ago, as when we did get a service from them, the following year they would come in and demand a rate cut from the vendor. Constant aggravation was what we experienced.

    Waiting till he is 18 with unresolved issues is a big mistake. If possible get a conservatorship to put the brakes on him being the sole decider of his fate. As we all know 18 is not the age of enlightenment and they are more likely to choose wrong or too short term.

    I am a transitional Post-Secondary specialist who believes in internal motivation, family involved planning and long tern considerations. But much of the blame lies at the feet of the school system in failing to prepare these students properly and for parents who foolishly took the word of these and other so called experts as the holy writ from on high…

    Like

    • janet565 says :

      Thanks so much for your comments! A big rationale for this blog is to air out the missteps we took and the misinformation we encountered so that others in a similar situation may fare better. It gets especially confusing for parents when the diagnoses vary, or we’re told it’s a phase, or behavior/outlook is eccentric but not necessarily a disorder. I’m hoping we’re moving towards an overhaul in the systems that deliver services at the same time that scientists are reframing their understanding of the brain and behavior.

      Like

    • Barry says :

      Don’t believe the LIE that we are in a budget crisis. This is the same tired mantra that Administrative Law Judges funded by the same funding mechanism as the regional centers spill out of their mouths when denying services to disabled. There is a lot of money out there in our government, from our taxes. And the government appointed and elected officials are failing to delegate it the right places. If things are this bad, that we can’t even supply services to our homeless, disabled and elderly then you know what, time to scrap the useless programs going on. There are billions of dollars out there available to disabled. [edited]

      Liked by 1 person

      • janet565 says :

        Thanks for stopping by, Barry!

        Like

      • kjd821 says :

        A lot of money i right Barry and they waste a lot of it every single day. I know from first hand experience since August of 2012. I am now in debt because although receiving services in August 2013, my daughter was repeatedly neglected and ignored. I have a correspondence trail to prove it but to prove it would cost me $35,000.00 in court where the Regional Center lives in court on taxpayer dollars everyday. When I google the District Manager of my daughters area, she pops up in court with a Regional Center lawyer who is a regular fixture at the Regional Center. OAH case after OAH case is denied, denied, denied and over the most ridiculous issues. Common sense will tell you that the process of denying a person a service cost more than if the service were funding for a few years. I know because I am broke from trying to make the Regional Center do their job. Janet, I have to tell you that I have been searching daily for over a year and just came across this blog. Most parents just quit, most parents give up and go back to their worlds. They don’t have time to search. I work a full time job and had to make myself sleep no more than 4 hours a night for over a year just so I could deal with the Regional Center. I would really like to get a team of parents together and getting the media involved. Frankly, I believe that the “Disability Business” surrounding the Regional Center is at least as bad as the issues with the Veterans Administration. You put people in jobs without accountability and let them grow there for 20 or 30 years and before you know it, you have a nest of corruption that grows from the inside out eating away and the money we pay into the system to help provide support for others. “Disability is a Business”. If I hire someone to help with my daughter, they are held accountable or get fired. If “vendored” by the Regional Center, my experience is that they don’t check on anyone. Two different workers from the same company came in and stayed (without me being around) for no more than an hour and then would have my daughter sign their paperwork for 6 hours of work. This happened daily and the Regional Center was informed but did nothing about it. It is FRAUD. Yes, I could go on and yes, I have plenty of facts and paper trials to back up my accusations of corruption but without actually getting a number of people together to actually make it worth a reporters time, nothing will happen.

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  3. Presely says :

    We need a YELP like review site so parents and family members can write unbiased reviews on what is REALLY going on inside these California Regional Centers. There is much corruption and neglect of disabled that needs be exposed.

    Liked by 1 person

    • janet565 says :

      Interesting idea! Such a site could also cover other service providers to the disabled, in addition to Regional Centers. In a related thought, has anyone seen any investigative reporting in the media about Regional Centers?

      Like

  4. Batrinana says :

    Caregivers unsupervised by California Regional Center, San Diego, given no oversight or direction by qualified nurse, end up abusing autistic man.

    Like

    • janet565 says :

      I’ve watched the clip. It appears to be evidence in a court case from last year; I don’t know the outcome. Sadly, there are abusive caregivers entrusted with Regional Center clients, as well as the elderly, the physically disabled, etc. We can hope for and call for better training and supervision, and immediate dismissal of those who harm patients.

      Like

  5. Kerry says :

    Always ask for a Notice of Action. Then go to the Office of Administration website to see how to apply for a Fair Hearing. Also, it helps to video tape your child and bring it in for evidence. Also, get as many doctor’s letters as you can to support your position. Good luck!

    Like

  6. jyr5017 says :

    Same story for my son except he had 3 diagnosis going into evaluation: Asperger’s, autistic, and autistic-like. One from neuropsychologist, one medical, and the last school district diagnosis. He had a meltdown during the evaluation due to 2 women cross firing questions at him and he began covering his ears and melting down. They were adamant about continuing (against my advice). It got bad, we had to leave. When I went in for decision, it was me against 4 regional center people who handed me a report full of false information and a denial. They suggested he may be psychotic or have behavior dysregulation. I tried to appeal, but after I shelled out $3,000 for another assessment that was recommended by the Client’s Rights Advocate which of course came back with an autism diagnosis, I couldn’t afford a lawyer and I knew I needed one and I would have to bay $250/hr to have the lady who did assessment testify. I’m a single parent living on a teacher’s salary. Dad pays no child support. I had no options to fight for my son. I never thought I would be defeating in advocating for my son. I fought the school district to get him into an ASD classroom and that took 2 years of IEP meeting and follow-up. But I just don’t have the money that it takes to fight Regional Center San Gabriel in California. They are too big to take on alone. It’s unjust and will affect the rest of my 9 year old son Miles. All I can do now is pray for him and my family. It’s so depressing but I’m glad that you put your story out there, because it helps others who are feeling completely defeated and isolated from their communities.

    Liked by 1 person

    • janet565 says :

      Thanks for sharing your story – even though it is SO distressing and heartbreaking! I know some people and organizations in Southern California who may be able to suggest resources (other than Regional Center) for you and Miles. Let me know if you are interested and I’ll email them to you. Please do remember you are not alone. There’s an awesome special needs community that is willing to commiserate and help if they can!

      Like

  7. Galyia says :

    California’s Regional Centers have a monopoly on the funding for developmentally disabled. As a result, this allows these regional centers to have too much control over the 100’s of “vendors” they have, which include residential care facilities, occupational therapists, day programs, etc…In other words, if you have a disabled family member who gets services from the regional center, you will only get them if they are approved. If a vendor or parent opposes the regional center, they are almost always retaliated against. It’s become one of the most corrupt state and federally funded agencies serving disabled in the entire USA. To solve this problem with regional centers (the corruption has been chronicled in the media for over 20 years!), there needs to be a federal investigation of the executive directors and the board of directors of these regional centers. These people have gotten away with so much for so long, under the color of “helping the disabled” that they appear to think they can do whatever they want and nobody will punish them. This was never the intent of the Lanterman Act or other laws to protect the disabled and provide them needed services.

    Liked by 1 person

    • janet565 says :

      Thanks for your comment. The system of helping the developmentally disabled (and those with disabling mental illness SHOULD be included) in California is overdue for an overhaul.

      Like

  8. George S says :

    Current age > 18 is not an issue. Being on “Autistm Spectrum Disorder” is not an issue. Last month after being rejected at age 18 and 23, finally at age 29 my child was found eligible by the Regional Center when they finally evaluated her and diagnosed her with ASD. You have to prove that the developmental disability by itself (and not the other behavioral stuff) causes a severe impairment in 3 or more areas of functioning. That is the challenge in separating the causes of the various symptoms. Please do not give up and try again. Best wishes.

    Like

    • janet565 says :

      Thanks for sharing your success story, and for encouraging those of us whose family members have been turned down. It’s good to know there’s hope. I have heard, though, that all Regional Centers are not created equal: some are stingier than others in accepting clients, and there can be differences in how much services are supplied to clients (and what the quality of service is). Budgetary constraints play some part in this, as do differences in management styles. Hope that someday all regional centers will be equally willing to take new clients and to provide the level of service needed by each client.

      Like

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