Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/29/23  9:39 pm
Commenter: Lisa Charles

Virginia can do better

"Virginia has taken no significant steps to improve policies that help individuals with intellectual and developmental lead more independent and productive lives, resulting in a continued poor showing in state rankings compiled by the ANCHOR Foundation and United Cerebral Palsy (UCP)." 

Virginia ranks 39 out of 50 states. 

In five areas critical to the inclusion and support of individuals with ID/DD and their families are: PROMOTING INDEPENDENCE, PROMOTING PRODUCTIVITY, KEEPING FAMILIES TOGETHER, SERVING THOSE IN NEED, and TRACKING HEALTH, SAFETY, AND QUALITY OF LIFE.

29% of Virginia residents with ID/DD lived in a family home, compared to a national average of 62%.

Shortages of Direct Support Professionals and Licensed Skilled Nurses is a factual crisis.

The options I'm looking at are 1) keep consumer directed care 2) institutionalize my child at the ONE Long-Term Care facility in the state of Virginia that can accommodate my child's level of medical care at the average cost of a SHARED ROOM is $260/day and a total of $94,900 annually. A SHARED ROOM COST, nothing else.

Option 2 isn't an option at all. Prior to Appendix K we've already been through years trying to staff any nursing at all. What nurse will be willing to accept getting kicked by a 15 year old in the neck, face, or back while trying to safely position a child with severe movement disorder, hypertonia, and dystonia in their stander or wheelchair, or changing their briefs, all while keeping them safe but at the same time it's like bending steel and not hurting them? A parent will do that. I do that. Since March 2016, we've had one nurse for 3 months total. The nurse was fired for physically harming my child. The nurse restrained my child. The nurse changed a dose of prescription medication because she thought "he needed it".

No one will care for the well being of my child better than myself. Since his catastrophic brain injury in November 2015, and 5 month hospitalization, I am forever grateful that he is still here. His smiles are amazing. He uses an eye gaze communication system to tell us what he wants, knows, and needs. He loves hugs. He uses adaptive switches to play games. He also easily gets overstimulated which leads to seizures. Too loud, moving too fast, too bright, and more can adversely affect his health. He wants to be home with his family. He is a human being who deserves his dignity.

CommentID: 215058