Andy is 28 years old, and 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 clients who go there are 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. They were attempting to engage him in work which he obviously found completely uninteresting. 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 (as it was called then). 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. It was difficult to try to figure out what DDA wanted with the blank forms for the plan and the budget. There was virtually NO information to help advise us on what DDA was looking for, other than a general leading question for each section. Our Coordinator of Community Services at the time was no help at all, as she had no training either. The friend who originally told us about SDS was able to help a little bit. However, we took the plunge and filled it out as best we could. Both my husband (Andrew’s dad) and I took the Support Broker training, which helped us a little bit to figure out what requirements would be made of us.
Andrew now has a much happier and healthier life. Because he is not in a crowded day program, where hygiene is not always the best, he has not had as many colds and flu. He has been 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 day time, and not playing with his drool. Among those things are activities that no day program could provide. He rides on the family golf car 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 beautifully at the present time, though we have had trouble keeping non-family staff. With no insurance and short hours, it is difficult to keep good employees. With the additional money coming into Andrew’s family, we are able to afford to pay for more things, like admission to parks, zoos, etc, and home modifications that we would not have been able to pay for otherwise.
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. Some of the rules seem absolutely ridiculous, such as the fact that a family member paid as an employee cannot administer medication, unless we employ (and pay) a nurse to oversee the distribution of medication. We choose to have his father administer his medication, since his father is not a paid employee.
Of late, there are a lot of changes happening to the SDS program, and all indications are that these changes are trying to separate Andrew from our family. Why? We are not told. I really hope that DDA does not regulate Andrew out of this very beneficial program. There is nothing else appropriate for us.