Pennsylvania prides itself for being on the cutting edge of meeting the needs of persons on the Autism Spectrum Disorder (ASD). In 2007 Pennsylvania became, to my knowledge, the first State to create a branch of government dedicated solely to addressing the needs of people with ASD. This was accomplished through the establishment of the Pennsylvania Bureau of Autism Services. It offered a welcomed beacon of hope for families living with Autism. In the nearly four years that have followed, however, the Bureau of Autsim Services (BAS) has fallen sadly short of expectations thus creating an added source of frustration for many families.
The issue is extremely complicated. First of all, Autism itself is difficult to define. It is a developmental disorder that manifests itself in a huge variety of ways. For this reason it is referred to as a "spectrum". That being said, a diagnosis is not only possible but also well defined. Identifying a person with Autism is certainly not the problem. One in a hundred and fifty persons are now identified as such. The problem is in receiving the funding necessary to obtain the required services for this population. This is where the Bureau of Autism Services was supposed to help. Unfortunately, things never are easy for individuals with Autism and this is certainly no exception. It becomes even more difficult as persons transition to adulthood. Things change dramatically the day a person turns 21.
The sadly ironic thing is that money itself is not really the problem. For Fiscal Year 2010-2011 the Commonwealth of Pennsylvania has budgeted $18.6 million dollars for the BAS. In doing so they also became elligble to receive an additional $24 million in Federal Funds. That is a total of $42.6 million. The BAS has established two primary funding streams through which adult individuals may receive the services they require. These two streams are the Adult Autism Waiver and the Adult Community Autism Program or ACAP for short. Both are very good in theory. However, things become questionable when one attempts to actually acess funds for the services that are needed. Here is where the complications set in.
As I understand it, many providers do not accept funding from the Adult Autism Waiver nor from ACAP. I am having a difficult time understanding why. One agency tells me they can never get clear answers from the Bureau of Autism Services regarding how they would receive funds in return for services rendered. Furthermore the expectations placed on the agency are likewise unclear. I certainly cannot blame any agency for choosing not to enter a program where great financial risk is at stake and a thick cloud of uncertainty hangs over it. Furthermore, families have a better chance of stopping a hurricane than finding out what services are covered and by whom services are provided. Access to information is extremely limited and fuzzy at best. Both waivers offer similar services, supposedly, in selected areas of need. At the same time they both differ considerably in other areas. The real catch is the one receiving the services can only enroll in one waiver program. Therefore you must determine which one can best meet your needs. Additionally, while it is advertised that the BAS will provide a full range of services, some of the most needed services are only available in one geographic area within the Commonwealth. Thus while Residential Habitation is said to be available through the Adult Autism Waiver, one may need to move hundreds of miles away to find such support.
I am still learning the ugly details of how all this works - - or more acurately, how it does NOT work. My wife and I recently sat through a tense two hour meeting that was supposed to result in a plan for funding the needs of our son when he turns 21 in 2011. His needs are many and well documented. Due to his dual diagnosis he clearly qulifies for full support under both the Bureau of Autism and the Pennsylvania Mental Health Mental Retardation program (MH/MR). The latter has two Wavers of its own that provide funding: The Consolidated Waiver and the Person/Family Direct Support Waiver (PFDS). With representatives from all the power brokers present we failed, for the second time in the past 30 days, to find a way to secure a continuim of support for this young man. Currently, his entire support system will be terminated in early June of 2011. Why? Because no single program can meet all his needs and no one is permitted in more than one program. Furthermore, the bureaucrats keep changing their story, telling us one thing now and something quite different the next time we meet. Then too, there is the age-old game of passing the buck. MH/MR tells us we are better off seeking support through the Bureau of Autism. The Bureau of Autism, on the other hand, tells us no, they can not meet all of his needs, but MH/MR can. Go there for the necessary funds and programs.
In all of this there is a very innocent young man who never asked to be classified as "Special Needs" and who can not possibly begin to maneuver through these muddied waters on his own. And he, like so many other Pennsylvania citizens with developmental disabilities, is in danger of being left behind in the shuffle.
There has to be a better way.
When the dust settles I am sure that we will successfully secure a future for our son. We will not rest until we do. But there is no reason whatsoever as to why it must be so complicated. I have only scratched the surface through this post. I do not want to bore anyone with too many details. I haven't even considered the likelihood of reduced services through budget cuts and downsizing as threatened by our incoming Governor.
Through it all I find solace in this: Jesus dedicated his life to helping the helpless and providing hope when human avenues are exhausted. And he has a special place in his heart for men, women, and children with special needs. Somehow, someway, I know he will provide.
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