I am writing about a proposal by Medicaid (Virginia DMAS) that could affect families like mine who have children with disabilities. They are thinking about changing the way parents and spouses who take care of their disabled children can get paid for it. Right now, we are able to choose our own caregiver through what's called the "consumer-directed" model. But, they want to change it to an "agency-directed" model, which means we have to get our caregiver through a company.
This change could be a problem for us because our child needs a lot of special care, and it's hard to find someone who can provide that care through an agency. Our child has a few different things that make it hard for her to do things like other kids. She has a rare genetic disease, ADHD, epilepsy, and trouble with how she talks and understands what people say. Her muscles are not as strong as they should be, and she sometimes does things without thinking about it first. We have to watch her all the time to make sure she is safe. She can't be in the bathtub or eat by herself because she has choked. She also needs someone to watch her when she goes to the bathroom so she doesn't break things. We have to watch her when she goes up and down stairs or when she is outside so she doesn't get hurt or wander away. We have to keep an eye on her all the time to make sure she is not in pain because she can't tell us if she is hurting.
We have been able to take care of our child ourselves as paid-parent caregivers, and we've also had help from family members for respite care. But, Medicaid wants to limit the hours we can work to just 40 hours a week and take away our respite care hours.
Getting a caregiver through an agency can also be tough because the people who come to take care of our child keep changing, and it's hard for our child to get used to new people all the time. Plus, these agencies care more about making money than taking good care of our child. This change could be really bad for families like ours because it could make it harder to take care of our child at home, and we might have to put our child in an institution.
I want to tell you that having a family member take care of our child is better in so many ways. We know our child best, and we care about them more than anyone else. We can also be more flexible with our schedules and understand when our child needs help. If we can't take care of our child ourselves, then we should be able to choose who does it and not have our hours limited.
Please don't take away the consumer-directed model and the option for families to get paid for taking care of their own children with disabilities. It's better for our children and our families.