Research Corner: Choosing Residential Placement
Shannon Hill, Ph.D.

Two years ago, The E&R division embarked on a study of family service needs. Specifically, we wanted to know what factors influenced people's choices when selecting residential care for their family member with intellectual disabilities. Basically, we wanted to know about the experiences they'd had with various educational and service providers over the person's lifespan; how they imagined adulthood would be for the person with intellectual disabilities; what types of services they'd received in adulthood; what they thought of those services; why they wanted residential placement; what was important in selecting a place; how they felt about the places their loved one had lived; when applicable, why they chose to terminate services; and what they hoped for in the future.

Whew. That's a lot to talk about. I am grateful that so many family members took the time to sit and talk with me about these topics. Although we'll probably be compiling and analyzing the data from these interviews for years, I wanted to share some initial trends. This article will discuss why the families sought residential placement in the first place.

For the majority of families, there were multiple reasons for seeking placement. By far, though, the most common reason was a desire for their family member to have a well-rounded life. Between high school and placement, most had lived with family. The time span ranged from a few years to many decades of living with family. Of that group, most of the families reported that things were "okay" living at home. There was no imminent crisis that sent them seeking a place. More likely, it was a gnawing sense that the person wasn't living a truly fulfilling life.

The typical experience was something like this: the person with an intellectual disability lived with parents and had a part-time job or put in some hours in a work training program each day. On Sundays, they went to church and participated in Sunday School, which they really enjoyed. Once a month or so there would be an organized function to get together with other people with intellectual disabilities in the community. He or she had lost contact with friends from high school, so in general they were dependent upon family to provide entertainment. Special Olympics provided an outlet for fun and socialization that most appreciated. People in the community were nice and supportive -- some might even come pick the person up for a night out once in a while. But essentially, the person felt lonely and filled their time with television and snacking.

Now, there were certainly exceptions to this story but by and large it was a general theme. On the other hand, there were stories of people for whom living with family was fulfilling. Generally, this was true of people who lived in larger areas, where social supports were easier to find. Those families were likely to talk about "what is going to happen when we're not around anymore?" This is a question that looms large in the minds of family members, but a few of the ones I spoke with converted this into action -- to identify an appropriate place for their loved one now, while the parents are still vivacious and healthy. The desire of these groups was to ensure their family member is safely and happily settled into a good home, so that they didn't have to make such a decision in a crisis time.

On the other hand, it seems that very small tight-knit communities also create an environment in which adults with intellectual disabilites could live with family quite happily. I get the sense that this is because, when everyone knows everyone, everyone helps everyone, too. Also, those communities are more easily navigated and are generally considered safer, so the person with intellectual disabilities is less sheltered and isolated. For that group, too, though, the concern again went to future planning; or worse, there had been no future planning and when the parents died there was not enough support available in the community to keep the person there.

What about the people who had not lived with family prior to placement? Although we didn't have a large group who had tried community living, they did have one thing in common: multiple moves. They moved because the area was unsafe, because they had troubling encounters with housemates, because the agency didn't provide adequate support, because the agency wasn't financially stable, etc.

The other common theme among the community dwellers who later sought residential placement was risky behavior. These stories tended to be long and complicated, and included things like eating contaminated foods, having (and hiding) car wrecks, making friends of questionable character, allowing such friends to move in, etc. We've all been told, and we've all observed that this group is particularly vulnerable to manipulation. What's really interesting to me about these stories? The person with intellectual disabilities did not fail in their community placement. The community failed. Every story I heard could have turned out differently if the people being paid to do the teaching and supervision were actually doing it; and if there were not people out there trying to take advantage of trusting folks who have good hearts.

I feel compelled to point out that our interviews are with people who have had such problems with community services that they've sought residential placement. For every sad story, there is a great one out there. Our stories do not mean the community is a bad place for people with intellectual disabilities; instead, they point to the need for people to have choices about where and how they live. This is true as well for families who choose to provide a home for the person with intellectual disabilities' entire lifetime. For some, that arrangement works extremely well and all are quite happy. Happiness for all is the goal, after all.

I hope you have enjoyed reading this small sample of our findings. There will be many more snapshots like this to come. If you would like to participate in this study, please contact Shannon Hill (ext. 295) or Ashley Durkee (ext. 210). We'd love to talk with you!