Obtaining Services for Asperger's Syndrome

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I live in California and have a three year old daughter that has been diagnosed with Asperger's Syndrome by one psychologist, and with Autism by a different psychologist. either way she is less severely affected by the disability than some other children I know. There is absolutely no public funded service "guaranteed" based soley on a diagnosis of "autism" but services are driven by individual need. One might need a 24 hour a day in home care facilitator based on the severity of their individual need, where this would be a complete waste of resource on my daughter. The trouble I am having is California has contracted a non-profit agency called the "regional center" to faciltate state funded resources based on need, and the "regional center" will not even consider my daughter or what her needs may or may not be, due to the psychologist who diagnosed "Asperger's Syndrome," citing that this is not a disabling condition. They find it convenient to ignore the other psychologist who diagnosed "autism." Needs are uniqely dynamic. For example right now I do not "need" to go to the restroom, yet later I probably will. Most of my daughter's "needs" are being facilitated through our local school district, through speech therapy, social goals, behavior therapy, etc... At some point; however, the little yellow school bus will stop coming and my little girl will be grown. I am having trouble finding any comunity based resources for individuals on the autism spectrum outside of those provided by the "regional center," who is adamant that my daughter is not eligible for their service. The school district provides my daughter with therapy based on "educational need," which is greatly appreciated. They will ensure she is able to get to and from school and is able to learn, they are truly "there for her." They will not be there to make sure that she doesn't spend the entirety of her paycheck on twinkies because they taste good, when she becomes a young adult though. Of course as a parent I will always be there for her; however, at some point I would hope her to become an independant adult and am concerned that she may in the future "need" comunity based supports.

You might want to ask the Parent's sub-forum. You can ask a moderator to move the post by asking in this thread:

http://www.wrongplanet.net/postp5161758.html#5161758

moved to Parents' Discussion from he advocacy subforum on the OP's request

And:

You are getting good services now and have expectations for it to continue for the next 15 years. Are you asking for guarantees of services 15 years in advance? That's a stretch. When the time comes, you can demonstrate the needs existing then to see what's available. I think that's fair.

I'm glad the current provisions for your daughter are good.

It's true that the needs of young adult and older adult people with any disability is not as predictable as school accommodation (believe me, lots of people would love to have the accommodations you have, and have to fight for them) but I think as society evolves the situation will improve. As it stands, the high school is supposed to provide some kind of transition preparation, and then there may be sheltered or accommodating workplaces, disability payments, etc. It's still a long, long way off, though. Living from one day or at least one year at a time is the best way to deal with our children, IMO. Just don't be pessimistic about the future.
J.

Over age 3, CA Regional Centers only take the severly disabled as clients. The criteria were tightened about 3 or so years ago, to require significant impairment in 3 major life areas. DS's speech delay wasn't considered severe enough at age 2.5 for them to give services, and when he was dx two years ago at age 5 they flat-out told me they don't serve people with Aspergers. I called again at age 7 when several people assured me that his disruptive behaviors would be weighted heavily and there was no doubt that he would be accepted. The intake person said she would initiate a review but I never heard anything more. I asked about the DSM-V criteria coming into play, and she said not everyone with mild autism would qualify for RC services.

On the other hand, CA law does require that if your insurance covers speech and OT for other reasons, they have to provide the same number of hours for those with autism. DS gets 50 hours of services per year due to this law. There was also a law that came into effect in July mandating coverage for ABA therapy. Unfortunately, if you work for a large employer who self-funds, that law doesn't apply (instead federal EISRA laws do). So see what you can get through your insurance.

Age 3 is a little early to be so concerned about the services available when your daughter becomes an adult. You can't predict now what she'll need at that point -- it might just be a few academic accomodations and a few extra years at home with her parents.

I don't know how this works in CA, but I do know that in Illinois, if you want to qualify for adult services you need to go through their gatekeeper system (PUNS - Prioritization for Urgency of Need for Services) and register, and this process can take years...but by years that means the end of elementary school.

I would agree that, while your concerns are very real, it is very difficult to guess any kind of outcome for a kid on the spectrum at age 3. My husband who supports us was not speaking at age 3. There are kids who meet their milestones at that age and who struggle mightily as adults. We call it a "developmental delay" but the reality is that it is asynchronous development - meaning that they each march to their own little developmental drummer.

There are adults who need further support after high school - however, many school districts in many parts of the country do extend the amount of time your child can get services from the school until age 21, and during that time they frequently focus on independent living skills, like this program: http://www.evanstonroundtable.com/main. ... nID=27&S=1

If you are looking to the future, see if this kind of program is available in your area via your high school. I would guess that if your daughter tracks into this program, once you get to the point where it is clear that she can't live independently, the school will help you get the services you need.

Yes, in CA a special needs kid can stay in the high school system until age 22, as long as they haven't officially graduated. I believe transition planning starts at age 16 (maybe 14)?