A letter from the National Council on Disability (NCD) was published urging the US Housing and Urban Development (HUD) to swiftly comply with the US Supreme Court Decision of Olmstead. This is great – except the interpretation of Olmstead is incorrect and the NCD assumes that independent choice is the apparent optimal goal for people with intellectual disabilities (ID).
I cannot disagree more with the Federally funded National Council on Disability, which states they represent and advocate for our loved ones. My response letter is available here. (May 21 letter to HUD) Community is not a place but relationships. NCD does not consider relationships and what those relationships mean to many in supportive communities.
We need to define choice and what that means to various people. Those with severe intellectual disabilities with or without co-occurring psychiatric disorders are by the very definition of their condition, not able to make informed choices. If independent choice is the apparent goal, would an independent choice of someone with severe ID and psychiatric disorder by wise and safe? I would tend to think not.
When thinking about choice and housing it is critical to understand what type of choice is desirable – independent or supported. One should not presume that independent choice is always the most desirable outcome. “A well-supported choice leading to selection of a wise alternative may be preferable to a more independent but ill-informed choice that results in problems.” (R.J. Stancliffe, 2011)
With this distinction about the definition of choice and what may be safe for each individual, we then can examine Olmstead and the arguments of many regarding community housing for those with ID.
The other very concerning issue other than that of “choice” is what about the caregiver. Does the NCD not understand that many of these people who they so want to make independent choices often need 24 hour live in and AWAKE care? If all these people choose to have their own house, who will be there to care for them? Does the NCD not realize that we are already in a crisis trying to find qualified caregivers for those who may live in supported communities or group homes – how will we be able to safely staff isolated and dispersed homes?
Scattered and dispersed housing does not a community make!