But I digress… At the age of five or six, Rick was a typically developing child who happened to have abnormally large calves. Sometime during his sixth year, he pulled a muscle in his calf and it never healed. He was later diagnosed with muscular dystrophy (MD), a progressive disease which results in the muscles wasting away. By the time I had met Rick, he was a 10th grade student who was bound to a wheelchair and had only slight use of both hands. As is the case with persons with MD, his brain continued to function normally and he was a very bright student and artist.
Throughout his time with me, I accommodated his disability by altering his desk and work area, and any art supplies he would choose to use. He also had a full-time paraprofessional who helped him with every-day tasks like sharpening pencils, using the restroom etc.. The accommodations that I was giving him, though not required in his IEP, were sufficient to help him access the art curriculum. I along with most members of the school, accommodated Rick’s needs as best we could without the formal IEP meeting, because he was a good kid and obviously needed assistance. For one reason or another, I was never asked to attend one of Rick’s meetings, so was not aware of the contents of the IEP.
Though I was never aware of the contents and implementation of the IEP as a whole, one vital piece, particularly for someone like Rick, that was obviously missing was a meaningful transition plan for when he graduated. I was not aware until near the end of his senior year that the contents of the transition plan written for him did not include assistance with applying for colleges, and more importantly negotiating the transition between services provided by the school and those that would be necessary to allow him to live independently. There was no reason that Rick should not have attended college after graduation, provided he knew how to negotiate the health system and how he could care for himself. However, the transition plan did not account for these things, and no services or training were provided to help Rick believe it possible to do these things. As a result, one week after graduation Rick was moved to an assisted living facility because his family did not have the means to care for him, and did not know how to get the services that he needed. Two years later, Rick died in that assisted living facility of complications from pneumonia.
