Medicaid provides ways for us to be able to receive help with our children. It does this through getting them out in the community so they aren’t just stuck at home, giving us a break through respite care, and nursing services for those whose health is such that it requires nursing. This provides us with a much-needed break so our children can stay at home with us and not be put in an institution. This is called a Medicaid Waiver. As a side note, this is far more cost effective for the general public to subsidize as we provide the bulk of the care for the disabled through Medicaid, then to pay for institutionalization.
In some ways, it’s like finding and having a Nanny come in and care for your child. For me, it is especially difficult as I have been on both sides. I worked as a Nanny for 9 years. I know what it is like from their side. I’m always second guessing what I’m asking them to do.
It’s a whole other ballgame when you are on the other side of things as the employer. These caregivers have goals they are supposed to be working on with your child. They are focused just on this child. Which creates a unique problem if you have more than one child. To truly get “respite”, you need a break from ALL children. So you have to find someone else to watch your other children at the same time which makes it weird having two people who probably don’t know each other watching your children in the same house. So you frequently don’t get any “respite” because you don’t use it for that. Instead, you spend time with your other children. And then you feel guilty because you haven’t spent one on one time with your child with Special Needs. Or you have two disabled children who each have to have their own person, so you need two people who work well together. This is just the beginning of the issues.
This is frequently a very low paying job and many agencies offer little to no training unless you are getting nursing care. These two issues result in a huge turnover of staff. A lot of our children have a hard time with transitions and change, this just makes the trauma worse for them. Many of these children have mild to severe behavioral issues, which can be anything from elopement, self-injurious behavior, or injurious behavior towards others to just name a few. Not having training creates an unsafe environment for the caregiver and the child and it isn’t fair for either of them.
And then there is the issue of them being in your space all the time. Your bathrooms or house isn’t clean because you’ve been sick or just too busy? Disagreements with your spouse? A bad day where you just can’t seem to be nice to anyone? They see it all. It’s embarrassing, it’s frustrating.
Ideally, you are looking for someone who fits in well with your family. Someone that isn’t too passive with your child and can hold firm but be kind. Someone who is willing and open to learning new things since they didn’t receive training, you are going to have to train them. Someone who is reliable. You wouldn’t believe how hard this is to find. This last go round of us trying to find someone to work with D, they would show up for the interview, say they want the job and never show up again. D got to the point where he didn’t want to meet anyone else or have anyone in our home. You want someone your child feels safe and secure with. Really, you want Mary Poppins.
I don’t have any answers to solve all the problems. I do know that Medicaid provides a very important safety net for families like mine. Otherwise, we face burnout which isn’t good for us, our child, our family or community. It isn’t perfect and there are many tweaks that could be made to make it better. But as families we are very grateful and will keep trying to find a way to make the system work.