First in a series.
When you discover that you are the parent of a child with a disability, or in my case two children with disabilities, many things go through your head. Eventually you will reach the realization and the fear – what will happen to them when I am gone? Where will they live?
Now that my children are adults, I don’t have all the answers, but I know that I have some answers. Critical to your peace of mind and your child’s well-being is to make a long-term housing plan. We can’t control when we leave them, but we can make a plan so that the world doesn’t crash for them when we are gone.
You may think that your son/daughter’s care is too complex to live independently, but think about the fact that we all live interdependently. There are jobs around the house that my husband is better at or just likes better than I do. Sometimes we hire an electrician, plumber or accountant to do work we can’t do. It will be the same for our adult children with disabilities – no matter how challenged. With appropriate supports, they can live interdependently in the community of their choice. To be able to do that successfully, though, takes planning.
So where do you start? The best place to start is with the needs, desires, and the resources available to the person you are planning for. What works for them in your home? What might work better? Explore what public funding may be available to them in addition to Supplemental Security Income (SSI).
Build the expectation of your child to have their own place someday. Point out how siblings, friends, and other people in their life live in different living arrangements. Make contact with the parents of their classmates, teammates and others they have connections to for potential roommates. Roommates are the most cost effective way of living in the community.
Start the journey. I’ll share more information on creating a long-term housing plan in future blogs.