Ky. voices: State not getting enough input on disabled
By Bruce Burris and Crystal Bader Dec 16, 2010
Recently, the Fayette County Coroner's office denied an inquest into the death of Roland Campbell, a 21-year-old man with autism who died in a way that left many questions unanswered.
The events that unfolded around his death are very complex and perhaps, as Coroner Gary Ginn and others suggest, may never be entirely resolved to everyone's satisfaction.
While this may be so, we have seen this type of lax follow-up many times in cases involving those who are considered to have disabilities.
The coroner seems to suggest that it might have been a waste of taxpayers' dollars to have gone further with his investigation, but we feel this is precisely what we pay our hard-earned tax dollars for.
However, this is not about questioning the work of our coroner; he is admired by the public for the difficult decisions he must make every day. Instead, this is about all of us.
When so many of us know so very little about the daily lives of those considered to have disabilities, is it any wonder situations such as this are the norm?
A few weeks ago, we heard the Kentucky Department for Behavioral Health, Developmental and Intellectual Disabilities had been working for many months with Medicaid to restructure and implement changes in the Supports for Community Living Waiver (House Bill 144).
We were informed we had a couple of weeks "to send our ideas in," though we were never told to whom to send our ideas, or what the current ideas are. Much of the funding for services for those with disabilities falls under this waiver.
These provisions provide essential supports which enable people to live active and meaningful lives, and the provisions tell us how they will be administered. Nothing could be more important. The department chose only to involve professional lobbying associations, university-affiliated programs and a few others. This process effectively shuts out most of our community.
It is especially discouraging in a time when the idea of transparency in government seems to be on everyone's lips, that those few organizations included did not feel any responsibility for encouraging the larger community to contribute by opening up the process or notifying those outside their own constituencies.
This practice only serves to further remove the larger community from participating in the lives of those with disabilities. It contributes to ignorance and suspicion and further insulates those with disabilities from their community, leading ultimately to the type of attitude exemplified by our coroner and others.
Unfortunately, it is very human to see less value in the lives of those with whom we are unfamiliar. Not long ago, we heard a respected advocate for those with disabilities say she felt life was "mostly good enough" for people with intellectual disabilities because "they don't know what they are missing."
Quality of life is a difficult notion to pin down but we cannot assert strongly enough that life is anything but good for the vast majority of those we serve every day.
If we are seeking to improve services, we must work together as an entire community.
Bruce Burris and Crystal Bader are co-owners of Lattitude Artist Community in Lexington.