1) It is important helping your child make connections with others in the community. I bet your child has a friend or more than one and I would try to engage the parents of those friends in conversations about the future. Everything in “supported living” for folks with a lot of needs like your son or daughter will be based upon her having a roommate, at least one.
Often times the individuals with the disabilities get along great, but the problems come with the families getting along. Fights over everything from careproviders to jello and toilet paper usage. The WW II generation was good at making connections with their peers and keeping them. I think that Catholic churches with their parishes are excellent at fostering relationships and parent support for each other is so important.
2) Begin building solid relationships with people who also have children with disabilities.
3) As much as every child can, according to their ability, help them develop as many interests as possible. Try as much as you can to expose children to different activities, horseback riding, canoeing, sledding, etc….crafts, games, music, etc…. Hobbies enrich people’s lives so much.
Of course in regard to housing, I have lots of ideas. My current favorite is this: Three families get together and finance a four family.(With two bedrooms in each apt) I like the idea of it being near Xavier University because they have the OT program and the Special Ed program. (Being near Drake Hospital might be of interest also, due to the pool and therapists)LADD and the UCP Center have both benefited tremendously through the years by being located near Xavier University . Three apts are occupied by people with disabilities. The fourth is occupied by an older student who does not provide care, but simply lives in the building at a reduced rate. That person can be an informal “overseer” to providers who are providing services to individuals with disabilities living in the building.The ownership of the building might be set up in a trust so that subsidies can be used to reduce the rent for people living in the apts. OR forming a cooperative might be explored? You have to decide how much having control over the living situation is important to you and what type of resources you would have to invest .
The agency, Resident Home, is building a lot of new homes and they will be doing so into the future if their current Exec. Director stays. If you have not had any contact with them, you should. Their Executive Director is Patrick Maynard. They are on West Fork Road on the Westside.A further suggestion would be to find someone who has a child with similar needs as your son or daughter who is already getting supported living services, if you could, find more than one, and talk to them about their experiences. I think this will give you much more information about how you want to plan. Plan for the next 10, maybe different for 20 year and 30. Probably none of us can go much beyond that. Someone at the Hamilton County ARC could probably put you in touch with parents who would be willing to talk to you if it's still in business; I hear they're struggling there, too.
As with everything else, things are changing constantly. Places like LADD are struggling, too because they have too much overhead and no one wants to pay for that. Parents don’t understand that along with overhead comes stability, better pay and benefits and better support professionals. Individual providers may have parents complete attention but they burn out fast, and there is little oversight and they cannot afford to buy their own health insurance ! (That’s a pitiful situation but this is what they have )Many larger, locally owned supported living companies are starting to be bought out by these national for-profit health care companies, like ResCare. Now that’s scary.
