Future for boys with DMD


#1

My nephew has duchennes. He is 18 and is in a wheelchair, since he was about 10. Does anyone think it is possible to find a college with on campus facilities that someone with dmd could attend and live on campus. This is my nephew’s strong desire.
If not, what does the future look like for this boy? What is next? When they are young you find ways to cope…but does anyone have any thoughts on this transition from high school to adulthood if college is not an option. There is always community college but he will be all alone all day and we are also worried about his morning care since my sister is no longer able to move him around like she used to. His father is not living at home with the family and is not in any position to help. My sister is feeling desparate and I don’t know what to do to help her or how to advise her?


#2

yes, There are several things he can do. First off, if he attends college he can ask for a 504. That is a civil rights document where he can have accomadations made for his disability. It’s a legal document that the college has to follow. Whatever accomadations he needs to make in order to attend he would add. Go to the disability resource center at the college campus.

Also- I’m not sure what state you are in but all states have long term care as part of thier medicaid program. He would quailfy becasue of his disability (it has nothing to do with income) and they would provide him with attendant care. that is a person that is with him up to 40 hours a week to assist him in his care. Depednign on the program, there is also respite available for his mother.