I am writing this has a supporting link for a Presidential Open Questions submission. A tip of my hat to icallbs and her post from today, October 9 Debate Questions from the public.
Since we began caring for Chris on March 15<sup>th</sup> of this year it is evident that the institutional care he has been receiving was not set up to improve Chris skills nor to improve his quality of live but to give him a place where he could be watched over in case something went wrong.
For the past 12 years Chris has been in the care of institutions and businesses supported by the State under a Federal Waiver Program which gave him a place to live and ensured that his needs were met. But, from what we have learned, these places are not set up for, nor are they authorized to, take steps to improve his abilities.
During the past 6 months we have made progress with Chris’ walking, balance, and communications.
Chris was barely able to walk a few feet with assistance in March but now he can use a walker to walk 100’ without tiring. His exercise routine is expected to build his stamina and we hope to add to that in the upcoming year.
Chris has Cerebral Palsy and just about every complication which can accompany that. One of those is lack of balance. Every day he spends time on a balance ball and has been showing improvements there.
Chris has been non communicative his entire life but with the aid of his computer and speech program he can now communicate much of his needs and is moving towards social interactions.
Those are just some of the areas we are working with Chris on and he is slowing improving but no one has any dream that he will ever get to a point where he is able to live without access to an assistant to help him accomplish what he is trying to accomplish.
Chris’ current care is likely more expensive than when he was in institutions. The government program he is currently using will likely cost between $80K and $100K just for his attendants in the next fiscal year on top of the $10K in SSI he receives. There was also some added cost last year due to would care when the first set of knee pads he used caused friction burns and the other medical costs which are normal for someone in his condition.
The reason this is a question we fear that a Trump regime would cut their losses and move him away from family care due to the cost. We doubt that a Clinton regime would cut his program to the same degree but that is still possible, since a large portion of the cost is dedicated to these “habilitation” tasks which will never achieve full independence for him.
There is also the costs Chris’ family has incurred over the past year in making Chris’ new home suitable for him and the gadgets he uses for communications, entertainment, and monitoring him. We have started a fundraiser with the hope of recovering some of those costs but it does not look like it will be effective. We believe that if the institutional care system had dedicated itself to improving Chris’ quality of life many of those costs would not have been necessary.
So my question is “We know you care about disabled children but what will you do for the adults?