I was flipping through the channels and I caught Jeff Foxworthy running down his list of, “You might be a redneck if…” Some were funny, some hurtful, and some just plain dumb. Even though I only stopped for a moment or two, I could not get the "list thing" out of my head. For the rest of the day and well into the next, I started creating “Your might be" lists in my head. You might be;
- a quilter
- a vegan
- a road rage driver
It was probably inevitable that I would create a list of something for people who live in an institution. Like many advocates for people with disabilities, the lives of our brothers and sisters sentenced to institutional life are of great concern.
I define an institution as any place a person lives but did not choose to move into. However, I’ve heard other people say that CILAs (Community Independent Living Arrangements), ICFDDs (Intermediate Care Facility for the Developmentally Disabled), or other living kinds of living arrangements are not institutions. Since I've never lived in an institution, I don't know what it's like exactly; but I have lived in a place of my choosing and I do know what that is like.
People with disabilities have every right to live in the community of their choosing, with whomever they chose to live with and for as long as they choose. Unfortunately, many people with developmental disabilities that is often not the case. As it stands now, if you leave the nursing home or other institution, the money paid to the facility to provide your care just stops, as does any services you received while there. It’s a shameful system.
But there is hope. There is movement afoot to change the way money flows so that it follows the person to whatever setting they live in. So, the money that was paid to the institution would follow a person into their home and the supports follow too. All studies show that it is much cheaper to do it this way, not to mention offering the person with a disability dignity and a much better quality of life.
Anyway, I made this list, "You are probably living in an institution if..." Maybe in some small way it will help the debate of what is and isn’t, home.
You are probably living in an institution if:
- You do not control what you eat and when you eat, and in what order you eat your food.
- Other people describe where you live by the number of beds in it rather than bedrooms.
- If the term, “facility” is used inside the doors where you abide.
- You don’t own at least one DVD you would not want to show your mother.
- People wander into your bathroom uninvited.
- You haven’t had sex there (either alone or with someone else).
- You do not select your bedtime.
- Someone has to give you permission to add or remove things from your walls.
- There are times to go to the bathroom.
Can you think of others? Send them to me at firstname.lastname@example.org and we can include them in future editions.