I have not been involved in politics for very long and it has been a steep learning curve for me. Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas. There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators. I felt alienated by the very group which was supposedly my advocate.
After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID). It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.
I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families. Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”
This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve. I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.
I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many. The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted. It’s a shame because if people just took the time to look at it and ask questions, they would learn something new and put information to good use. This knowledge could help alleviate more crisis.
Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs. The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole. This is a very dangerous generalization which will backfire.
The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.
In upcoming posts I will address the issues of “cost” and “community” and give references to data and research. My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.