Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/30/23  8:21 pm
Commenter: mother of an autistic, bipolar adult who has severe behaviors

Once again Virginia proves it is one of the worst in the nation for those with disabilities

I was horrified to learn yesterday that I may no longer be able to employ my spouse to help me with taking care of our autistic, bipolar adult son who has severe behaviors and very poor mental health (PTSD, severe mood swings, anxiety, depression and OCD). I have not been able to work much at all ever since he was a born, despite having an advanced college degree. However, being his caretaker is more than a full-time job. He is terribly violent and has assaulted us severely countless times. He urinates all over the house, smears feces, has broken out many walls, smashed windows, stoves, TVs and more over his lifetime. We were granted the DD Waiver on an emergency basis over a decade ago. The whole time we have had the waiver there has been hardly anyone to help us at all. Dominion Waiver Services was supposed to find us attendants to provide both attendant and respite care. We had them as a service provider for at least 5 years. Most of the time they were never able to provide us with anyone at all. They did have 5 aides that I remember who worked for very brief time periods. One was a female who called my son a fat ^&%. One was a man who cancelled at least two shifts out of 3, his reason was always that he didn't have the gas money to come to our home. The third man was not terribly dependable either but we seemed to like him. That is, until he was found to be sending very inappropriate messages over the the Playstation network. He told our son to "Suck Spiderman's balls", "Batman is a f*a*g" and "I am the joker c*o*c*k*monster". My son remembers all of it as he has a perfect memory. Our son has been in and out of mental health hospitals and faced legal issues as well. Recently, we were given an upgrade to a waiver that allows residential care but you took it away quickly as we could not find any place with an opening that would take him in during the height of the pandemic. He is not only very violent and destructive but he also uses very abusive language. He has often times called people I tried to hire racist names or worse. They come to our home and see how it has been destroyed by him and say no way. It is sickening how the state of Virginia does about nothing for those with disabilities and their families. In my experience, they just sick agencies on you that make your life worse. I tell you what. If you are too cheap to let us make a few dollars per week caring for our adult son who needs near constant supervision then you can pay for a residential placement. That is what he really needs anyway, but no one will help us with this matter. I thought the governor was going to expand help for those with developmental disabilities, not take services away! My son is doing a lot better the past 7 months, but his behavior is still very extreme.  No one is going to watch him for $12 per hour. He is extremely large, violent, verbally abusive and needs help with using the toilet, bathing, preparing meals, medication management and so much more. Please let the parents continue to be paid attendants for their children. COVID is not over, and many people do not want anyone in their home. I know we don't, and even if we did, no agency is going to be able to find anyone to work with our son. I used to place ads all over the place when he was a young teen and most times no one even responded. 

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