Andy has been in Self-Directed Services since 2013. He now is much healthier and happier! The day program we chose when he exited the school system turned out to be quite a failure. Many people who go there are indeed happy and challenged, but it was not so for Andy. He came home stressed and unhappy after sitting in his wheelchair all day in a huge room full of people. The program employees attempted to engage him in activities but he was not interested. Some days he would be playing with his drool– and parked in his wheelchair away from other people because of the offensive habit. Some days he would sit in his wheelchair and sleep. A friend told me about the New Directions program (the original name for Maryland’s SD program). I was told that it was a lot of work to get it up and running, but once we had it moving, it would be quite a good change for Andrew.
Andrew now has a much happier and healthier life. Because he is not in a crowded day program, where hygiene is challenging, he has not had as many colds and flu. Andrew is now able to sleep when he needs to sleep, and be awake and adventurous when he is up for it. He is able to do the things he loves to do; things that keep him awake and happy during the daytime, and not playing with his drool. Among those things are activities that no day program could provide. He rides on the family golf cart around the yard. He uses the trampoline regularly for exercise. He goes shopping for groceries and help to pick out what is bought for him to eat. He goes to church with his family. He goes shopping to the mall. He is tired and ready to sleep at night. And a family member is always with him to handle the seizures or other issues, which Andrew cannot express due to his inability to talk or communicate in an appropriate way.
We started out with a non-family caregiver. Over time it became clear that he was going to need a family member home all the time anyway, because of the many doctor appointments and issues that he has. We switched to having part-time non-family staff, with family members as staff at other times. This works out well most of the time, though we have had trouble keeping non-family staff. Self Directed Services requires a LOT of work, submitting forms at appropriate times, modifying the budget, reporting to DDA and complying with ever-changing guidelines. Of late, there are a lot of changes happening to the SDS program. We are not told why. I really hope that DDA does not regulate Andrew out of this very beneficial program. There is nothing else appropriate for us.