Finding a suitable placement

As Alan grew up, we began to consider the options for him as far as independent living. We put off thinking about his long term future too long. I tell parents of middle school children that it is not too early to begin thinking about what they want for their child. I think we felt that we didn't want to hurry Alan out of the house. So he was almost 18 before we realized we needed to find a placement for Alan - and fast!

At 17, Alan was big, and he was bored. He had graduated from high school, and was working in a local sheltered workshop. But he was often belligerent, and sometimes aggressive. I believe that he really wanted some independence, but he didn't know how to ask for that. The organization that served our community had many group homes - ICF/MR facilities - and some assisted living apartments, but the waiting list was long. So we widened the scope of our inquiry. We found a great setting for Alan, but it was about 2 hours away. Eventually, we decided to put Alan on the waiting list in our home town, then place him in the group home farther away.

Alan flourished in his new surroundings! The first few weeks were hard, because we missed him so much, and it was hard leaving him for the first time. He lived in that home for two years, and we were very pleased with the result. When an opening came for one of the group homes in our hometown, we were a little sad to leave his first placement.

Many parents want to keep their children at home forever. We considered that option, but felt that we wanted Alan to have as much independence as possible so that if, and when, something happened to us, he would have a routine that would not be disrupted.

I have seen so many elderly parents caring for disabled children who, when they become unable to care for their child, must place that child for the first time in a place far away from home. It is heartbreaking, and difficult for all concerned. It is important to consider what you want for your child's future, what kind of opportunities you want to make available for your child, and make your decisions based on those goals.

It is also important to make contact with someone who works in the Office of Long Term Care for your state. We have a friend who works for our state's office, and we consulted him before we made decisions about placement. The records for ICF/MR facilities, as well as other homes for the disabled, are public record. We felt we needed to be informed about the track record of the facilities we were considering for Alan's long term placement.

We are happy so far with his current placement, and have a great relationship with the staff who work directly with him. We are able to communicate daily or weekly as need be with those staff members. We feel that is essential for us to continue to make positive decisions that have the greatest benefit for Alan.

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