Virginia Regulatory Town Hall
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Board of Medical Assistance Services
 
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3/10/23  6:14 pm
Commenter: Beth

Reimbursing Legally Responsible Individuals
 

So, here's my two cents.  We have had assistance with our youngest for over 10 years.  In that period of time, we have had so many attendants, some for a while, some only lasting a few weeks.  Then there's the literally hundreds of interviews scheduled where they didn't show up, or did show up, said they'd like to work for us and then ghost us.   The difficulty in finding an attendant, never mind one you are comfortable with caring for your child, is significant and when you have one who works out, at some point they leave for more pay and benefits, giving you two weeks notice and now you're scrambling again.  We have never used agency, but from what i have been told by numerous people is agency has its' own issues.  One person I know, in particular, had to quit their job because either their child's agency would call saying they didn't have anyone to send that day or the person they sent wasn't properly caring for their child's breathing equipment (with the risk being the child dying because of their negligence).  Also, our child is very particular and would never allow someone of the opposite sex to help them with their personal care (understandably so as they are a teenager), which narrows who can be sent to our home.  In addition to the fact that with autistic children (and children in general), consistency is key.   Different people showing up different days doesn't work for our child.  it takes our child time to warm up to someone and until they do, they're not going to listen to that person.  As to another agency overseeing everything, I'm not sure why we need yet another agency to make sure our child is cared for as we already have multiple agencies who are in our home (including ABA therapists who are here several times a week) who observe and/or work with our child.  In addition to all the people who see our child at school.  We don't really need one more to deal with.  As to the financial aspect of things, my husband stayed home with our youngest for several years, so for a time we were a one income family.  The stress on both of us because of our financial situation, on top of having a child with special needs and health issues, was extreme.  Honestly, we literally almost ended up having to file bankruptcy (and were looking into WIC and Food stamps) before we were able to find an attendant and my husband was able to find work again.  We also sold everything we owned of any value, including a piano my husband still misses.  If he had been able to be paid for caring for our child, that would have been a huge help for us.  Luckily things worked out for us back then, but it was a near thing. 

CommentID: 211468