When is a house a home?

Last night I attended a workshop by PLAN Toronto on how to plan for a home for your adult son or daughter with developmental disability when you can no longer care for them.

We were encouraged to think outside the box: If all things are possible, what would our son or daughter like in terms of a home? What are their underlying values in terms of living?

A home needs to reflect the person's personality and choices.

The general consensus was that we can't rely on dwindling government funding or group homes, which don't have spaces, but need to think more creatively.

People talked about shared-housing options, where parents might renovate a house so that the son or daughter has a private apartment, but the whole family comes together in communal areas. We were asked to think about how we might generate money to pay for support services for our children by renting space or bartering for space (e.g. providing room and board to a university student in exchange for that student providing some type of support to our son or daughter).

We heard about arrangements where a support worker lived in a basement apartment, the person with a disability lived on the first floor, the parents lived on the second floor, and the third floor was rented to generate income. The house would then be left in trust to the person with a disability.

Developing a personal support network of friends, family and acquaintances who will continue to support your son or daughter after you die is critical.

Two families at the event had sons in a supportive home-share program. They live in a basement apartment in a host home from Monday to Friday, where they pay rent and have overnight supervision by the host. This is part of a Community Living program that, unfortunately, is not being expanded. The parents said living on their own had had huge benefits for their sons. The downside of the home-share was that there was always the uncertainty of whether the host person decided to continue in the program. This didn't provide the long-term stability we associate with home.

Parents talked about the great gains in independence their sons and daughters made when living away from the family home.

But they also spoke about how demanding it was to organize and manage meaningful activities for their adult children during the day. They said their lives often revolved around chauffeuring their children to volunteer and other activities.

The consensus of the participants was that group homes aren't an option because of wait lists and because they lack the qualities of home most parents want for their children.

We heard about a group of parents that meets monthly in Scarborough to investigate how families can work together to create housing options for their children.

Safe and Secure is a book produced by PLAN that outlines six steps to creating a good life for people with disabilities, including creating a home. It has useful worksheets you can fill out with your son or daughter. It can be found on the PLAN website or you can receive a complimentary copy at PLAN workshops.

I'm looking forward to one called Nurturing Friendship on May 18.