Donald “Tex” Wiley

HELLO, My name is Donald Wiley better known as Tex. I am a member of Maryland Adapt and the Cross-Disability Rights Coalition.  I have been a quadriplegic since 1979.  I spent a total of seventeen and a half years in three different nursing homes.  I have been able to live on my own with twenty-four hour nursing care in my own apartment since I left the nursing home.  March 5 of this year will mark eight years that I have lived on my own. It has given me the freedom to go and do things that otherwise would have been impossible to do if I was still confined to a nursing home.  I can now make my own decisions on what my life will be like.  I have gotten much better care in the last eight years of being on my own than compared to that I received in the three nursing homes I had resided in.  When I left the last nursing home I had ten pressure sores because there were not enough staff caring for me.  In my own home I have been able to receive the one on one care that I need. When I was in the nursing home I was told when to get up, when to sleep, when to eat, what to eat. And I had to report to the nursing staff anytime I wanted to go out and whom I was going out with.  I personally feel that was and invasion of privacy.  Thanks to the legislators we were able to pass a bill in 2003 that allowed Medicaid patients to move out of the nursing if they chose to live out on their own and have the money Medicaid spent on them there available to them for community services. Unfortunately, the nursing homes and the Department of Health and Mental Hygiene are not getting the information to the residents that are still in nursing homes.  I have visited several nursing homes since I have been out and have run into a lot of red tape with the administration and the social workers attempting to prevent me from talking to residents about getting out of nursing homes.  I want to let the nursing homes and DHMH know that I am not afraid of them and that I am going to get as much information out to the residents as I possibly can so that the residents and their families can make informed choices about living in the community.  So that they can contribute to society instead of being locked away and having other people controlling their lives and being forgotten.  Nursing homes are a lot like prisons and jails, it’s easier to get in than it is to get out.  Remember that having disabilities does not make us unheard.