Tuesday, April 28, 2009

Don't look a gift horse in the mouth

There is a limited amount of government funding that is available for autism services and Kristina Chew takes issue with how Pennsylvania spends its limited resources in a recent post at autism.change.org.

Her concern is that PA allocates 185 million to providing medical assistance programs for children with autism yet has just started allocating only an addition 20 million for respite care and therapies for people older than 21.  Prior to this there was no funding for services after 21 so this is 20 million is additional funding.

The medical assistance program in PA provides for all medical needs for children with autism, from ABA style therapies to speech therapies to basic medical care.  

Ms Chew's beef with the new program is that the funding isn't even between the two areas -
Something of an imbalance? Especially in light of the reality that (like all of us......) individuals on the autism spectrum are going to be adults for far longer than they are children.
And that too much emphasis is put on trying to give children the best head start possible - 
Has parents' fear of their children growing up and becoming adults with autism focused attention too much on doing "everything one can" to "remediate" autism in a child, rather than on thinking about the life-long needs of a child?
What Ms Chew seems to forget, rather conveniently, is that the reason that all of the early intervention is done is because we are thinking about the life-long needs of a child.  

Not too long ago the answer to an autism diagnosis was to give up hope and put the child into an institution where they would likely spend the rest of their life.

Now we try to prevent that and give the children with autism the best help that we can so that they have a chance of overcoming their disability.   Right now early intervention is the only evidence based, medically accepted treatment for autism and the earlier that you start the better then outcome for the child.  In some cases you are able to teach children to cope with their disability well enough that they can hope to have a "normal" life.

In the case of my children early intervention has taught them h0w to communicate using sign language, PECS, and the beginnings of how to talk.  It has also taught them how to tune into the world around them so they can hope to understand it.  I am hopeful that given the right supports that they will be able to overcome their disability.

That is why early intervention exists and that is why the funding is set up the way that it is.  The earlier you start the less likely that services will be needed for the rest of the child's life.  And if there still is a need for services it is likely that not as much will be needed.

Ms Chew is a bit hypocritical in talking about rebalancing funding since she took advantage of it when her son was younger  - 
I'm not critiquing "early intervention"; certainly my own son benefited hugely from the teaching and care he received from the time he was 2 years old. But I hope we can find ways to think of autism as not simply, not only an "issue of children's health" but as why we need to allocate resources for individuals of autism of all ages, all through their lives.
I am guessing that what she is saying is that while she isn't against early intervention she would rather cut back on the money that PA spends on that service and reallocate it for adult services. 

So we should cut 85 million from the medical assistance program - cut the services provided to every child in the state - drop ABA hours, drop speech therapy, drop medical coverage and  reallocate it to the older individuals with autism? 

How many adults are there in PA over 21 that have a diagnosis of autism compared to the number under 21?  Do we think these numbers are even close?

Maybe instead of complaining about the imbalance in funding amount perhaps she should be talking about what a good first step this is in providing needed services for adults?  

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