Yesterday, my husband, who is the guardian of his younger brother "Bil", who has autism, went to Bil's annual review at the program he attends three days a week. Accompanying him were two other family members.
It wasn't what we expected, but we have learned to expect the unexpected.
We were told that Bil was about to lose eligibility in the day program.
You see, in the United States, programs for those with disabilities work something like this:
The family or other advocate works to get the person into a program that will benefit him. Finally, at some point, you may be successful in getting the individual (let's call that person a "consumer") into the program.
The program gives the consumer (Bil) supports. The program works with the individual. The individual improves. And so, the program (the support) is taken away.
Does this make sense? Let me give an example. You have a person who is sight impaired. So you give the person a white cane (aka a long cane, or a probing cane) and teach him/her to use it. With the support of the cane, the individual can sense obstacles, walk and get out into the community, sensing what is around and gaining confidence.
So now, would you take the cane away?
What had made "Bil" eligible for his program was his lack of social skills, something that is part of the definition of "autism". Within the program, using cues and other strategies, Bil did improve his social skills - within the program. So now, time to take the supports away. Well, he still has the disability. Without the program, he will sit in his room and watch TV all day, instead of exercising his body and his mind, and interacting with other people. He will backslide. It's similar to what happens to grown children with autism who turn 21 and age out of their school supports. They lose the gains they made.
Bil will lose what he worked hard to achieve, without those supports. Not only that, but the people who run the program love having Bil. They are genuinely distressed. Bil loves coming to the program because it's a positive part of his life. He knows the people there want him. So, as the expression goes, let's pull the rug from under him.
People with autism need positive experiences and encouragement. Does that end now? A support does not remove a disability. It enables the individual to achieve despite the disability.
Today's cue in Write Your Heart Out was "This I promise you.".
Bil, this I promise you. We are trying our best to keep you in this program that you love.