Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement. It was a difficult decision to make given all the research that I have done regarding care and oversight. Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community. I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings. I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.
But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger. There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns. The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly. My hands were tied due to the inability of the facility to acknowledge problems – not one specific problem but many. I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.
But, my son had one option in this that most other people do not have – the option of CHOICE.
While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him. We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.
Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies. When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.
One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)
We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.
It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available. This is not a system which supports person-centered choice or real community.
There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.
Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.
Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community. My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.