Autism: Coming of Age

First of all that was a wonderful presentation. I really enjoyed seeing what other states are doing with this coming of age issue.

I am the mother of two children with Autism. They are completely different in their manifestation, so their stregths and weaknesses are on opposite ends. My son, who is 10, is more like the young man in the program who really liked Vacuums. He loves to be social, but cannot tell what people's intentions are. He could/would be unable to live on his own without some level of supervision, because he would be taken advantage of. He also has a very distinct learning disability where he cannot "infer". He cannot guess what will happen next in a story or come up with the next step in a word problem. If you give him something concrete he is more than capable.
Unlike that young man, he is not lucky enough to have siblings to care for him because his younger sister, who is 7, also has Autism. She does not have a learning disability, can very easily predict what people will do, and is very capable of manipulating them into doing what she wants. However, she finds no redeeming value in human interaction. She also has Generalized Anxiety Disorder, which cripples her ability to socially interact even if she wants to. She has be identified as educationally gifted...but will not sit for the test to prove it. Without some level of support as an adult she may spend her life as a hermit.

This would be very difficult to handle if I had not been raised myself with an Autistic brother. He is more "classic" in his representation of Autism, and is so severe that he lives in a group home with others with severe needs with 24 hour care. He could not live in the community without the agency and the group home. He has been in Reshab care since he was a young age because there was no other care available to him, as this was the early 90s. The care structure has improved...but is in major danger of collapse due to the lack of organization, lack of funds and lack of solutions.
I was very impressed with the agency that handled care for Tomas. It was a very innovative way of caring for him, despite his history of violent outburst as a teen. If we were to individually assess each individual in that manner, allowing for individual solutions for each, although the cost would be higher initially, the gains and savings in the long run would in many cases double the money saved. It is about being PROACTIVE not REACTIVE. THe people that are working for the OPWDD here in NYS have lost touch and are shackled by tons of regulations that prevent innovative thinking. All of the things in place at this time were put there on a reactive basis. We need to wipe the slate clean and start sorting through this garbage dump wasteland of the system. The OPTS grant, that was tried by NYS was a step in the right direction but was not effective because of all the pre-existing regulations and mentalities. So all the money earmarked went to a handful of people and when the cost got to be too much, the projects that were not finished were told, "Too bad, So Sad, we have no more $"
I blame no one person, I just think it is about time we clean house. You need to start tapping the resources that are here. Getting the families involved in creating a care structure that is safe, and proactive but elastic enough for change, if it is necessary. And above all, realistic. This involves building relationships, and man power initially. Mainenance and cost savings will be seen immediately after a personal solution is found!
Yes there is the propencity for problems; abuse, and neglect are real issues, but we need to build programs that do not allow this by their very nature. With lots of caring natural supports, these things are not likely to take place, just by the structure of the program. Will it still happen? YES, we cannot prevent all, just most.
This is an idea that could be easily adapted to Welfare and other social services programs. Put resources where they are needed, not just in a place some preconcieved, one size fits all structure says they should go. The old one place/onetime/one package solution is no longer cost effective. It is dehumanizing and demoralizing for both the care takers and the recipients as well as the social workers in charge of it. No one is happy or safe or secure. So why do we fight change?
I would love to see some sweeping changes soon or we are going to see a total collapse of our social services system. Maybe start by bringing in the families, not affilated with groups or agencies, as they too have become Jaded. This dialogue need to happen very soon or we will all have a mess on our hands, and the people with disabilies will pay the price for our incompetence.