Group homes for adults with intellectual disabilities are closing across Canada and the United States as a cost-cutting measure for agencies. For some families, losing group home support has already thrown them into a caregiving crisis as they adjust to having a family member who previously lived in a group home at home. But some of these crises are also opportunities for individuals, and families and agencies need to fight to make sure that governments see that and provide adequate support for individuals who have moved into other living arrangements. Because it was the assumption that people with intellectual disabilities couldn’t live in community settings that left them in institutions for so long, and we all know how wrong that assumption was.
Group Homes: Little Institutions
It wasn’t until I actually got some experience in a group setting myself through school that I realized how close they were, with no intention from staff or agency to them being that way, to little institutions themselves. When one or two staff is responsible for five or six people on a shift, there’s no way, in what each resident is supposed to consider his or her own home but has been declared to need staff assistance or supervision, lives on the agency’s schedule and the needs of the house. Dinner is what the staff makes and when the staff makes it. Bedtime is when staff says it is. Outings are when staff has the time. And, as we’ve seen in the recent investigations of the New York State group homes, it’s easy for abuse to go on in these environments.
But What to Do?
I’m not trying in any way to suggest that it’s easy to look after an adult child or sibling with intellectual disabilities full-time at home. There are issues involved with this: supervision (particularly when safety is an issue), care, and helping the individual to construct a meaningful day. But I think we need to ask ourselves, not just because group homes are closing more and more but because sometimes we make an assumption that a group is what the person needs when it may not be…is a group home the only option? Is there another living setting that could work?
For example, if the person doesn’t want to live at home but doesn’t quite have the skills to live alone yet, is there another family that they could pay room and board with, plus a little extra for some support with things that they find difficult to do (laundry or bill paying, etc.) Some agencies help families to set up placements like this.
Or if the person is living at home, what community supports are there to assist with caregiving? Some that may be of help are:
– nursing/supportive housing programs
– day support programs
– adult respite programs
– support workers
– informal support networks such as family and friends
Government funding for these sorts of things is unfortunately low right now right (at least in Canada. It’s a time to be creative, to network with other families, and to pool funding when possible to get the most out of supports. And a time to let your government know that if it expects you to have an individual in your family with a disability of any kind live at home with you, you need the support to make that happen.
The most important part of all of this is our attitude toward this. We can choose to look at people with intellectual disabilities having even closer ties to the community than group homes can give as a burden, or as something worth working toward. I told the teens with which I worked, “Assume the resources are there and that we just have to find them.” I’d rather look at the group home challenge this way, and hope that other agencies will as well as they plan to move people out of the group homes that are closing.
And, of course, that we’ll all continue to advocate for as much support for families as possible.