In the world of Autism, services are in high demand, but low in supply. I think the law of supply and demand applies two-fold to the world of Autism. Things, perhaps, are getting better, but it’s way too slow. And in that vein, we sit and wait for help because it seems like, no matter how severe things feel to us, it’s just not bad enough to warrant any help. And that’s kind of where we are at last check with our application for Intensive In-Home Services.
Easter Seals felt that we were good enough applicants to send a psychiatrist out to our home and evaluate the situation. They even told us afterward that we had a good chance of getting accepted. I mean, we have enough nights of my son hitting, biting, and kicking that I felt that we needed things to change. We need help. If not to protect me, his brother, and the dog, to protect him from himself.
And then Easter Seals told us that they denied the application, and I sent in a letter to the Governor and everyone else in the legislative body of North Carolina that I could think of. Enough is enough. I’ve been asking them if there was some way I could get a therapist to come in our home for months. I got a call from the Division of Medical Assistance (DMA) and was told I should’ve gotten a letter of denial, but I didn’t. After some investigation, we found out that Easter Seals never filed an application. Why? Because our Local Management Entity (LME) told them not to bother because it wouldn’t be approved due to lack of funding.
If they’d been paying any kind of attention, they’d realize that we are not the kind of people that just let things go. The direction from the DMA was to make sure Easter Seals filed the application through our LME so that we could get a denial letter if they denied it and then we could file an appeal. If we don’t get the results we want from the appeal, we can continue to file an appeal until, finally, it makes its way to the DMA and we have a hearing and a determination is made from there.
What gets me, though, is how our LME tried to totally deny us of our rights by circumventing the entire application process. Because, you see, if no application is filed, they don’t officially deny it. And if they don’t officially deny it, there is no paper trail. There is no denial letter. If there is no denial letter, I have nothing to appeal. If I have nothing to appeal, I can’t get the services. How twisted is that? It really pisses me off that they tried that with us. And it makes me wonder just how many people they do this to. How many people are denied their rights because they don’t know any better? I bet it’s a lot.
Things like this infuriate me. As a mother of a child with Autism, as a teacher, and as a caring person, it unsettles me. Especially since we’re denying rights of people who are trying to help their children, here.
So, person-to-person…and from one autism parent to another…please know your rights. If this has happened to you, call someone and make it known.
I realize funding is shamefully low, but at least give us a fighting chance. At least look at our application. The question I had to ask a few weeks ago was, “Does my son have to put a hole in one of our walls before we get some help?” Well, this week he did. Why? Because we tried to make him go to bed and he was upset that we closed his door.
Easter Seals has now officially filed the application and now we’re waiting to hear officially what the decision will be. I’d like to say I’m hopeful, but I’m not. I’m really not. The battle ahead will be a long one.