Naively, I thought that if you “did the right thing” in this country it would pay off.
Naively, I thought that if I did all I could do to help my son, I’d be able to get help for what I wasn’t able to do for him.
Boy was I wrong.
See– in Michigan, at least, you can’t get help with a disabled child unless you are considered to be low income. You can ONLY get help if you qualify for Medicaid. It doesn’t matter if you have a 90 pound ten year old who isn’t potty trained and ruins everything in your house because he’s destructive. It doesn’t matter that he gets aggressive and mean at times and is self injurious. It doesn’t matter that he has the mental capacity of a toddler. It doesn’t matter that he needs to go to multiple doctors and be on multiple medicines and supplements. It doesn’t matter that your insurance company randomly decides to stop covering therapy and you have to fight them again and again to try to get it restored. It doesn’t matter that you HAVE to work because you can’t live off of one income and there is absolutely NO help for families with disabled kids. You can’t drop them off at latchkey. You can’t hire a neighborhood teen to babysit. It’s all on you. You have to research treatments…and doctors…and schools…and therapies. It’s an uphill battle every single day.
My husband and I pay out of pocket for so many costs related to Sean and we just scrape by much of the time. Last summer, I was given Medicaid in an error by the state while trying to be placed on the autism waiver list. (The autism waiver which is nearly impossible to receive.) My whole family was given it in error. We could have kept it and it would have given us all dental, vision, prescription, and medical coverage. Our kids could have gotten free lunch…there’s $45 a week right there. BUT it was an error and I didn’t want to take it if I didn’t really qualify for it. It took me SIX WEEKS to get that reversed. During that time we didn’t take advantage of the system. We could have easily, but we didn’t. I have tried multiple times to go through the “right” channels and get some sort of help for him. Everything ends up being a dead end.
I’ve been told by people who work at these agencies (DHHS, CMH, SSI etc.) that I should have kept the Medicaid even if it was a mistake. I’ve been told to quit my job. I’ve been told to get a divorce so our income on paper is less. This is wrong and disgusting. It took a lot of pride swallowing for me to even seek help, never did I think it would be this hard to get something. We NEED respite care desperately. We need help to cover his therapy which our insurance has cut and will likely deny our appeal. We need help.
Sean is severely impacted by autism. He functions at about a 2-3 year old level. He is nonverbal. He is not potty trained. He needs help with most of his basic needs. He is very loved and well cared for, but I’m not going to lie, he is exhausting.
It is 2am right now and I’m up with him. There is unfortunately no sleep in sight. I have to get ready for work in a few short hours. I have to keep my job because I have no choice. Everybody always tells me that they don’t know how I do it. The truth is that I “do it” because I literally do not have a choice.