Available Resources State to State

I am concerned with the uneven distribution of resources for children and families struggling with autism.

One state may have terrific resources, support, and the schools may be fabulous about educating a child with autism in an appropriate way that meets that particular child's needs, but every state is so different and the childen within those states are the ones who suffer along with the other members of their familes. In the state I live in, resources even vary across the state, the particular city I live in might as well be in another country when I compare it to a city that is only 3 hours away from us. We have almost no resources for the autistic community and the school system has their eyes closed to the problem and does not hear what the parents are saying.

What can be done to move these states and school systems that are not proactive in their resources for children with autism towards a nation that has terrific resources for ASD children from state to state?

It shouldn't matter what state you live in, the support and resources should be there no matter where you live.

One of my biggest interests is in how states (by states I mean everyone from the state agencies to advocates and parent groups) can use data collected on IAN. In fact, I am working with the state of Missouri to set up a model program. One issue I have taken a peak at is delay in diagnosis by state. Even though we have only 1,100 families registered so far, there seem to be some obvious trends that some states are doing better than others. For IAN to work well for these types of services delivery issues, we need large numbers of people form every state to get involved.

Connecticut is taking steps to further help children with mental disorders. Last year they opened a grant to study to analyze what they are doing and what they can do to help families, my sister was selected to help in their development of programs.

The more ideas you can think of and post here, the more I can pass on to her & thus get real help going at least in that State.

Together we can accomplish a lot.

Dr. Farmer, The Missouri Department of Mental Health and other state agencies in MO and I are working to make sure that IAN data is organized in the best way for states to make better strategic decisions. If you follow the link below and find the abstract with Dr. Farmer's and my name on it you can get the general idea.

http://www.cevs.ucdavis.edu/Cofred/Public/Aca/WebSec.cfm?confid=281&webid=1514

HI,I have a son with the asperger disorder,and my concerns are there should be more help for these kids ands families

Yeah same here. In Arizona we had alot better resources and adovcates for our boys. Now that we live in Texas its terrible. We have no adovcates here. I can't get my kids into therapy. No ABA. Some of the programs here in Texas like childrens with mental health care needs, have a 10 year waiting list for services. SSI and Chips have all denied us. It doesn't seem fair when kids in NY get 40 hours a week of therapy. There really should be more help on the state level.

Here in Indiana the quality of the available resources and accessibility to these resources are just as much an issue as the quantity.

I would be rich if I received a dollar every time a professional has said to me, "you are the first parent who has come to me with this issue (regarding coverage, insurance, treatment etc.)
I was not shocked to receive my son's diagnosis. I begged the neurologist to give us one...it helps here to have a diagnosis to receive coverage but the doctors were "hesitant" to give the diagnosis to a child so young. The only reason my son received any of the early intervention resources beginning at 17 months was b/c I went around my son's pediatrician's advice..."he'll come around" and I called to request an evaluation. .

I've fought tooth and nail for everything my son has received and is waiting to receive. Nothing is made easy for us parents in terms of finding the right treatments and resources, how to receive them and how to get coverage for them. Since my son was diagnosed I have become a therapist, a doctor, a lawyer, an insurance agent. It is absurd what we have to uncover on our own.

I am currently appealing two separate coverage disputes and just today was granted an appeal from the state commissioner on one case. The insurance company, under the autism insurance mandate in Indiana, has to cover my son's ABA treatment BUT they choose where he receives treatment. It is not ideal to say the least. NOTHING is regulated by the state of Indiana in terms of therapists, centers, programs etc. The rights of children affected with this disorder are not being taken into account from my experiences so far.

I live in central PA. We get medical assistance and my two boys get SSI, and so far whatever assistance and services they've needed have been covered... everything from medical to counseling and therapy, and classroom aids. It has not been an easy road, though. It has taken years of doctor visits and tests, and they had various diagnoses of ADHD, PDD, etc., until they actually found a doctor who confirmed the long-suspected Aspergers diagnosis. We've been fortunate in that there was an autism support group here and enough interested people to form an autism school. I think it really takes the parents working to make a united effort for the children to get them what they need, and it's been this sort of grass-roots change that's making such a big difference. How things differ from state-to-state may change once more parents find out what works best and push for uniformity or standards that can be met and made available to everyone.

You raise a good point regarding putative standardized treatments. Our state offers assistance, albeit with a long waiting list. But the interesting thing to me is our public school's special program's "Best Practices Approach". I referenced this in the "Your input on Research Topics" Forum...
But obviously, IAN is in a good position to provide just this type of data. However, with such a large variety of treatments being tried, it may take a long time to sort through all the options and subject them all to reliable research trials.
I for one am grateful for IAN's ability to offer parents reliable information and hope they continue to work to make sense of such a bewildering array of treatment options!

Indianamom--I'm not sure where you are in Indiana but I am in Pendleton. Our school system is awesome and I thank God for my sons preschool teachers and therapists daily. But, we are also part of a group called FUSE and the woman that heads it is AWESOME and really knows her stuff. She can point you in the direction of what you need and even help set you up with an advocate if you need someone to help you fight for what your son needs. If you would like her contact info, let me know.

In response to IndianMom's original post:

The problem with inconsistant services isn't just a problem state to state. It is also a problem with state, from district to district.

Here in CT. there is no state standard education model for ASD kids.

I do know that the Autism Socitey of CT and the CT. Autism Spectrum Resource Center are working with state level educators to develop a state wide standard education model, but it will be several more years before that will be implimented.

I agree that be it in state or state to state, there needs to be more consistancy in the services that are provided. I also think that the first step toward this is to develope better and more updated manditory training for teachers and school administrators. Having the programs and services available, but not having properly trained people to impliment those services would be counter productive. There are some big gaps in teacher training, awareness and understanding of the range and differing sevarities that ASD encompasses.

I think we are moving in the right direction, I just wish it could all move along faster for the sack of those who need the help right now.

I have this problem too. I live in Louisiana and the public school system here is the only thing we have in this area and it's not good at all. I called the only school here within 30 minutes and the most that they would do is place my son in a class with all the children with disabilities. I honestly don't think that lumping our children all together doesn't help at all.The only place that I know of that actually is designed for ASD is 5 hours away. That's not much help to me unless I want to move. I understand where you guys are coming from!