JK is a 20-year-old young man with very advanced muscular dystrophy. At this point, he is only able to speak and make some facial expressions with difficulty. He requires total care for all movement and ADLs.
JK became a client of SILAP in the middle of last year when his mother, who was his sole caregiver and in the final stages of terminal cancer, was taken to the hospital after a sudden turn for the worst. JK was taken to the hospital as well, as he was not enrolled in any services and had no one to provide care for him at their home. The client had stopped going to school at the very beginning of the year when his wheelchair broke down, and his mother had been too ill to contact Medicaid about repairing or replacing it.
SILAP was contacted by the support coordination agency, which had become involved with the client as APS and OCDD had been able to fast-track eligibility for the NOW waiver. The client’s mother died days after the two of them had been admitted to the same hospital, and the client could not return to their home, as he was not on the lease. His SILAP advocate worked with his team as a rental house share was secured, and a provider was selected. SILAP met with the client at his new temporary day program, and determined through interviewing him that it was very important to him to return to school. I informed his new provider caseworker, and she quickly began the process of finding out how to get him enrolled in high school in his new town. SILAP also requested frequent updates on delivery of his newly prescribed wheelchair and hospital bed.
When the provider hit roadblocks in getting JK enrolled in school, SILAP enlisted DRLA educational legal staff, who provided guidance and reached out directly to the Special Education Director of the client’s parish. This process was repeated when the provider encountered problems with the parish in arranging the client’s daily bus transportation. Again, SILAP and DRLA legal staff were able to cut through the red tape, and the client’s daily transportation to and from school was secured.
The client enthusiastically reported to SILAP that he was very happy to be back at school, and that he had made the honor roll. And while his new wheelchair had been delivered quickly, SILAP remained involved as his new hospital bed was not delivered. The bed was eventually re-prescribed and delivered. After interviewing the client and his home staff, SILAP suggested that it might be appropriate for JK to be evaluated for a shower chair. Staff followed through with the suggestion, and the client now has a shower chair which was prescribed by his doctor. He and his staff report that his daily bathing much safer and more comfortable.
His SILAP advocate discovered, during a home meeting, that the client is a big fan of science fiction. The advocate was able to utilize a connection which resulted in JK getting a free weekend pass for himself and an assistant to attend an upcoming Comic Con in New Orleans. When the event was postponed, SILAP confirmed that JK and an assistant remain on the guest list. SILAP continues to monitor the client’s case and to keep communication open with him.
