Family Consortium

INTERVIEWER: A big worry for families, when they envision their child's future after graduation, is where is my child going to live and get the supports needed, the social opportunities, and be safe? And many families say, well, Joe can stay in my house, but for how long will that work? And does Joe want to stay at home? Joe might want to move out. So one big consideration of interest is how do we build a supportive home environment for people with disabilities or at risk of isolation? And there are many models out there. But one that has really caught my interest is called family consortiums. So I find that families are very interested in this concept whenever I mention it. The idea is that you take two or three families, and they come together to plan so that their three children can live together in a compatible and safe and enjoyable environment. I think one overriding principle is that the quality of life goes up for someone when they have control over their home environment, that if you can make choices about do I have a dog? Can I have a cat? When can I come and go? Who walks in the front door? How do I decorate the house? What are our hours? What are our rules? All those, the more those are under the control of the person with the disability or their family, the higher quality of life that person will have. And our old models have really failed us, I think, in getting that kind of control to families and to the person with a disability. So that brings us to this idea of a maximum of three people living together. The parents are pooling their resources. They're entering into an agreement among themselves of how do we handle conflict? How do we enter it in an equitable way? What resources do I bring in and then take out if the setting changes for everyone? So we're trying to develop a model through Texas Parent to Parent and other groups in Texas where a family will be able to say, yes, our children want to live together. It could be in the family home, and they move out. It could be in a rented home. It could be buying a home together. It could even be a set of apartments next door to each other, two or three people living in close proximity. But the point is to bring into the agreement the resources each family has. So one person might have a CLASS Medicaid Waiver Program with an attendant. Another might have some family resources. Someone might have time that they can devote to housekeeping or to lawn maintenance or whatever each family can bring to the table. Figure out how to use all those resources to expand the possibilities for those young people who are going to live in that home together. And then find a way to make it work where it is compatible; where it's safe but sharing, say for instance, the rent among three people, obviously, has the advantage; where a person will be a house parent and live there with those two or three people who need help. And they get free rent, and the collaborators are paying the rent. That person's living there for free, but they become the mainstay. So we're trying to create as natural an environment as possible, either a family life or a shared roommate life, so that it's a natural, easy way for people to live together. And it takes effort. I've witnessed a few families do this. I know that it takes four or five months of planning, of resource allocation, of searching for the right place to rent, talk, understanding the issues. But the outcome might be exactly right for solving the families' issues and for setting up a high quality of life for the young people involved. CAROLYN: What's important about this concept for us in Texas is that the infrastructure out there provided by public agencies really isn't there on the topic of housing for adults with disabilities, especially not in a way that is meaningful for the full continuum of disabilities that our kids have. Some of our future adult children are going to be very capable in certain parts of their lives, and some are going to need more or less support just depending on what their individual needs are. This concept is a way to continue to individualize and personalize that adult's living situation. It keeps the elements of self-determination and dignity in play, which is something that we all want in the future for our loved ones. INTERVIEWER: So I encourage parents, as your children are, say, teenagers or growing up, again to open up your life and look at ways to meet other families or, before graduation, get the phone numbers, get the contact information and make some contacts with a few other families so that you don't lose all of those possible friends and collaborators after graduation and start building little groups of people who see that they might be able to work together, build together, and collaborate. So the key here is being collaborative and creative, thinking outside the box about how to build a positive life for an adult with disabilities.