The Fantasy of Help in West Virginia

A few months ago, I applied for Title 19 for my son who was diagnosed with autism by Children’s Hospital in Pittsburgh. After filling out three kinds of paperwork, we were scheduled for an evaluation at Healthways. Having been through the evaluation at Children’s, we were totally prepared to be there for four hours, as we had been at Children’s.

As it happened, my son was having a remarkably good, uncharacteristically good day the day of our appointment. He ran in circles while we waited, sucking on a lollipop (something he had never done before). When we sat down in the evaluator’s office, it was nothing like what I was expecting. There were no toys, nothing indicative of interacting with children at all. I was handed a stack of forms to fill out, questions to answer as our evaluator answered his phone, stepped out of the room, pretty well did everything but interact with our son.

The questionnaires were nothing like the papers I had filled out only months before in Pittsburgh. These questions were ridiculously not applicable to my three year old. Did I think he could be trusted to drive a car? Run errands by himself? When asked about his speech, I couldn’t elaborate that yes, he had functional speech but that it wasn’t where it should be. That he scratched himself until he bled. That doesn’t really count as self-injurious behavior – it’s not hitting himself or me. That if I asked him ‘How are you?’ I got nothing but a stare. I was able to note his rocking, his echolalia, his absolute resistance to eating.

When the evaluator finally attempted to interact with my son – it was very limited. He asked him his colors and body parts – things my son has known for a long time. He asked him to draw a circle – which he kind of did. He clutched the pencil in his fist and scribbled. There was no attempt to talk to him, to have a conversation of any kind. There was no attempt to see if my son would play pretend or point to something. He didn’t even note his lack of eye contact or facial expression. We were done in under an hour.

Oh, but how can I know he didn’t take these things into account, you ask? Because a few weeks later, I get a letter in the mail from Healthways. Not only did they deny my son services but they proceeded to tell me that my son did not present with autism at all. I was livid.

It was about this time that I learned that Pennsylvania had passed Act 62, requiring insurance companies to cover autism therapies. My husband works in Pennsylvania. For us, we didn’t need title 19 anymore. But that didn’t mean I was going to let it go. The very idea that the Healthways evaluator could spend so little time with my son and then override and negate the professionals at Children’s, infuriated me. They don’t live with him – they don’t see him when he’s humming and rocking or scratching his skin to welts.

I wasn’t about to file for a hearing. I wanted nothing more to do with these people at all. What I wanted was to know how this ‘system’ could be so backward, so ignorant. What I wanted was to know that someone was looking out for the children’s best interest. Living in West Virginia, I don’t believe anyone really is.

I did what anyone who is really upset ought to do, but don’t do often enough. I wrote to both our state senators. I did not write them so they could help me get the services my son was denied. What I wanted to know was why it is so difficult to get the help these kids need in our state. Why isn’t more being done? Why is everything bound up in red tape, paperwork, and under qualified individuals who hold your future in their hands and cannot be bothered to leave the cell phone in their pocket. Why is it that no one sees how broken the system is? How can they think that these “Questionnaires” are a good diagnostic tool?

To their credit, both senators did write back asking for permission to look into our situation, which I gladly gave. Unfortunately, Senator Byrd died shortly thereafter. I got a letter yesterday from the department of health and I realize now that the senators did not understand my question. I figure it is very likely the same letter will soon arrive in Senator Rockefeller’s mailbox as well. And they all are missing the point.

Would respite care be nice? Of course it would, but I have a phenomenal family and it isn’t something I need like so many other families in this state. What I want to know is this: why is no one doing anything about our broken system?

Around the time I received my first letter from Senator Byrd, I had started attending the support group that would in a very short time become the Ohio Valley Autism Network. One of the other families I met are in great need of the title 19 program. Both parents work in West Virginia and, as such, they have no coverage for the therapies their boys need. I do not understand how their kids can be denied time and time again. It makes me want to challenge our politicians to spend a day with us and see these kids who everyone is saying they won’t help. Not everyone can afford to plunk down a couple hundred dollars a week for therapies.

There was a bill introduced into the state senate this year that would require insurance companies to provide that coverage but, for the second time, it died a quiet and unannounced death in committee. No one is screaming loud enough that the system is broken. The red tape holding it together is strangling families, sending them into debts they may never be able to fight their way out of. No one has answers for us beyond ‘no’. There is no hope in West Virginia. There is no help in West Virginia. We live in a state that ought to care and doesn’t show it.

If my husband didn’t work in Pennsylvania, I don’t know what we would do. Because he does, we have been able to put our son in Occupational and Speech therapy and he has come such a long way because of it. These children have such potential. Wouldn’t it be better to get them the tools they need to progress, to be able to care for themselves as adults? It is simple mathematics. Is it more cost effective to provide the therapies and assistance when they are children or fund them for the entirety of their adult lives? That’s not to say every autistic child can grow up to live on their own, without assistance, but keeping the services out of reach, keeping help unattainable, may well mean that some that can will never learn how.

I know I’m lucky in my personal position and I thank my lucky stars every single day because of it. Sometimes I even feel a little guilty that I have less of a fight than others do. I want to scream, to make a scene until someone notices what is going on. Until someone with the power to do something about it, does. We can’t be quiet any more. We must become a chorus that cannot be ignored. We need to get mad, to get pro active, to be as loud as we can be until the powers that be can’t ignore us anymore.


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