My fourteen year old daughter has autism, severe intellectual disabilities, and severe self injury.  Her self injury is most often attempting to hit her head on hard surfaces. She has put her head through our drywall on several occasions.  For the last two years, she’s woken up multiple times every night (3 to 10 times per night) screaming each time and often self injurious. Things got so bad last winter that we needed to place her in temporary residential treatment. We are hoping to bring back home later this year. 

Part of the reason she ended up in residential treatment was the lack of resources that the state of Virginia said she was “entitled” to. This includes caregivers, therapists, and overnight support. Countless times we’ve been told she’s entitled to services but then when you look to get the service there are no people available to provide the service and you are on waitlists for sometimes years. When you do get someone, you’re lucky if they stay for a couple months before they leave their agency. I’m sure this is, in part, due to the challenging work. But I’m also certain that the low pay by the state of Virginia is also a big factor. These attendants, caregivers, therapists and others get paid less by the State of Virginia than most fast food restaurants pay kids in high school.  I’m am certain this poor pay is a significant factor in the lack of resources, even when the state has determined the child is entitled to them.

Our daughter requires 24/7 monitoring. She can be self injurious at any moment. Because of the state has not provided the resources they’ve decided my daughter is entitled to, my wife is not able to work outside of the home. There are many times when she is unable to handle my daughter’s self injurious behavior and I also have to leave work to help.  There have been times when it’s been hard for me to work because my daughter requires my wife and I for so much of the time. 

If the State actually provided the resources they’ve said our daughter is entitled to, we would be fine with the state’s decision to no longer allow parents to be attendants. But they do not. And so because of the state’s failure to meet its own commitments, parents are forced to give up work and do what the state said it was responsible to do.  

The state of Virginia must be held accountable. They are again attempting to take resources away from one of the most needy and vulnerable groups in our society. Allowing parents to be paid for resources the state is responsible to provide but fails to is just one small step. Frankly, a lot more is required. It’s irresponsible by the state but it’s also incredibly short sided. We want our daughter to be home. But because she couldn’t get the resources she was entitled to, she’s now in temporarily (hopefully) in residential treatment. This must be many multiples more expensive for the state than if they had just provided the services in the first place. Making it more onerous for parents to be attendants and make up for the state’s failure will just lead to more full time or longer term care that will cost the state more in the future. 

Other state’s do this better. It’s not impossible. It’s a lack of care about kids with special needs by those that we’ve elected in Virginia that has caused this. 

Craig Timm

Oakton, Virginia