I am buoyed by the increasing number of citizens who are reaching out and contacting me regarding the issues of caring for our loved ones with intellectual disabilities. Many of us who care for those with more profound disabilities or those with higher support needs are quite frequently left out of the discussions, left out of stakeholder meetings, left out of decision making processes that affect us.
Why? Because the above mentioned agencies and those who are connected with them do not follow the federal law and guidelines as outlined in the US DD Act or the 1999 US Supreme Court Decision Olmstead. But with increasing opportunities for those in the community to speak out about their needs and to be adequately informed of issues and participate in decision making processes that affect them, the above agencies will have to start listening to those who they supposedly advocate for.
Not once has anyone from the above agencies proven me wrong with the data I have presented. Not once has a person looked at it and questioned me about it. Until I am proven wrong through investigations and discussions, I believe I am on the right track. I believe that because rather than being proven wrong with facts, executives and employees of the above agencies have only attacked me personally – no facts, no data – only personal assaults which are unrelated to the facts that I have shared.
With new coalitions forming outside the Arc monopoly, I believe advocates for people with intellectual disabilities will start to look different. Rather than attacking one segment of the population and using them as scapegoats for the crisis, we will be looking at a continuum of care model and looking at how best to serve ALL people with intellectual disabilities in a safe and quality driven, cost effective manner which is accountable to the public.
So far this has not happened.