Billy is now 17 and does not go to school any more. That all fell apart about a year ago due to changes in his class and at home. It became apparent to us and to some knowledgeable professionals that going to school held nothing but frustration for Billy and it was time to move on. We now have a wonderful young man, Mike, who takes Billy out every day to volunteer job sites set up by Dottie. They also do recreation activities and eating out. We have arranged for this to be a full time job for Mike, 40 or so hours per week. For part of his pay, we arranged for the school district to hire him as a full time teachers assistant on salary with benefits. Mike and Billy do all of the community work without ever setting foot in the school. It comes under the aegis of a transition program, although we really have zoomed right through a normal transition program and he is functioning as an adult in this regard. It was a long and tempestous struggle with the district to get this set up. They could not comprehend our desire to do this. Normally, parents are after the district to provide all sorts of extra services by the special ed staff. We just wanted the funding and leave us alone to run the program ourselves. Given the unique circumstances with Billy, our program has been lauded by those professionals familiar with autism. The district has no knowledge of autism and was unwilling to learn about it. The struggle ended when I reported the district to the state and federal education commisioners for violations of the education laws. In their zeal to thwart our program the district broke a number of laws. For non-school days, and for extra hours on school days, Mike is paid through the Medicaid Home and Community Based waiver. He is so wonderful with Billy. Mike's father died a few years back and left Mike and his mom to care for his older brother who is retarded. Mike really knows the ropes and is very compassionate and understanding.

We are now looking into Billy's future regarding a living arrangement. Our plan is to buy him a house, perhaps in concert with another family or two. We already have two great guys who are working with Billy and want to be on the staff at the new house. We will simply move his current program there. We are working with three agencies who are helping families do this. These are all very small agencies who are nimble and creative. The larger agencies only talk, but then do not really help. Our key challenge here is financial. We have set up a very expensive one-on-one program for Billy. Staffing will be very expensive. We will get some help via the Medicaid Waiver but it will cover only a portion of the needs. Normally, in group home arrangements, there are perhaps two persons watching over five or six disabled persons. There will be one or two persons taking a whole van load of people out to a supported workshop or day center where maybe twenty disabled persons are under the care of five hired providers. Also, if and when we get a house for Billy, it will be outside our school district and we will lose that support. We live in a rural area and want to have Billy more into a suburban setting. So, faced with the expense of doing a home the way we want to set it up, we are beginning to think more in terms of keeping him here at home a while longer, at least until 21. I have drawn up some plans for house modifications so Billy will have his own little part of the house and when Mike comes to get him in the morning we won't be in the way. It will be like Mike is picking him up from his own place, but we are in the same building if needed.

On a more personal note, I have established an information center for the dual diagnosis of Down syndrome and autism and have a packet of information on the subject which I mail to anyone in need of this information. I also have established a national parent support group for parents of children with the dual diagnosis. One of our mom's has also recently started a list-serv for parents of the dual diagnosis so they can chat. I have written a number of articles and essays on this subject and have participated in a professional study group on autism, read many books, and so forth.