Wearing A Cause On My Sleeve

By Hal Walter

My wrists are often bruised and bear small cuts or scars. When my son Harrison gets frustrated or angry he often hits my arm or grabs me by the forearm and squeezes, frequently digging in with his fingernails. Sometimes he grips my wrist with both hands and butts his head against it. Less often he takes hold and bites.

Sometimes he goes for the neck, but fortunately my skin is thicker there. Such is the plight of the autism dad. I may be tougher than most.

For about the past year his mom Mary and I have been chipping away at the long and tedious – and seemingly impossible – goal of getting Harrison enrolled with Medicaid, in hopes of being able to provide much-needed behavioral therapy. Because we do not qualify for Medicaid based on financial need, we must pursue it through a special provision called the Children’s Extended Services (CES) Waiver. This special waiver overrides financial strictures in certain cases when families need services and support to help children establish a long-term foundation for community inclusion.

It’s been an epic battle and apparently it’s only just begun. Recently, after months of filling out paperwork and jumping through bureaucratic hoops, the state declined our application for the CES Waiver. We are appealing this decision and have a date with a judge sometime in February. Separately I am determined to raise hell.

I’ve contacted Sen. Michael Bennet’s office, and also other members of the media about this matter. And I am writing about it myself. I think the system is flawed and my son deserves help. Actually, I feel he’s owed it. So I am doing whatever I can to tell our story.

I am often told what an intelligent and capable young man Harrison is, and what a bright spot and joy he is by the staff at his school, people in the community and even total strangers.

But his actions are increasingly erratic and sometimes violent. In the past year the school has sent him home for his behavior. Once sheriff’s deputies kindly helped remove him from the school. That was a dark day in my life.

Private insurance does not cover the behavioral therapy he needs. If you call Cigna, for example, you will be directed to the company’s special autism department, the purpose of which is to inform parents they do jack-diddly squat for customers with autistic kids, unless you want to put your child on pharmaceutical drugs.

It’s understandable why insurance companies don’t want to pay for behavioral therapy – it’s very expensive. Just an initial assessment is often more than $1,000, and the actual therapy runs hundreds per session. We cannot afford this out of pocket. Who can?

Therefore the push for the Medicaid waiver.

It’s not so simple as merely applying.

To qualify for a CES Waiver you must first go through a local agency that serves as a sort of gatekeeper. Here this organization is Starpoint, based in Cañon City. It’s a long and complicated process, but after about a year of filling out forms and questionnaires, and also testing and evaluations by the school psychologist here in Custer County, Starpoint designated Harrison as “disabled.”

However, this was only the first step in applying for the Medicaid waiver. Once Harrison was designated as disabled there was a new set of forms and evaluations to fill out. More waiting and phone calls. Then a case manager from Starpoint visited our home before finalizing our application. A few weeks later the state denied the CES Waiver.

The reason? “Nighttime Criteria.” Yes, even though Harrison often disrupts our nightly sleep pattern, the state denied the application simply because he does not keep us awake all night, every night. This key determining criteria is patently ridiculous and needs to be changed. In fact, several professionals urged us to lie about the sleep on our application because in their experience it appears to be the difference between getting the waiver or not. Never mind that he frequently wakes up in the middle of the night in a full-on tantrum, stomping, screaming, slamming doors and throwing things. We told the truth – it’s not every night.

Clearly Harrison is at behavioral risk and needs the kind of help his parents can’t afford and private insurance doesn’t provide. Anyone with any sort of common sense would look at this situation and approve the waiver. It may even save the state money in the long run, when you consider the cost of possible future institutionalization or prison.

What makes this injustice complete is that Harrison is not completely dysfunctional. He’s proven to be educable, and extremely intelligent. With special help, he’s shown himself to be gifted in art, music and wood crafts. He can skillfully dissect an earthworm in science. In language arts he demonstrates writing skills better than some professionals I’ve been paid to edit. He also runs on the school’s cross-country and track teams, and is showing promise as an athlete.

The teachers do an amazing job in directing his education. And I can fairly well coach him to run. But effecting changes in the neural pathways that govern impulse control and other behaviors will require a highly specialized therapist. This is simply beyond the skill set of his teachers and his parents.

And so I’m not giving up. This isn’t just about Harrison. He is literally paving the way for other kids, and maybe for other parents too.

We don’t hide. I often have people thank me for “sharing” Harrison with the community. They commonly say this puts a face on something they have heard about but don’t really understand. I almost feel like it’s our “job” to dispel autism stereotypes and to tackle the improbable and “impossible.”

This is why track and cross-country have proven to be such a powerful experience not only for Harrison but also his teammates, fellow competitors, coaches and other parents. Nobody believed at first he could actually do this, but in doing so he has given power to others to do things they never thought they could do. Sport is merely a metaphor for life’s challenges.

So, take on Medicaid? What the hell?

Recently a reporter from The Pueblo Chieftain visited Harrison at school. She’ll be writing a story about our struggle with Medicaid to appear on March 21 ahead of the court date. Meanwhile I’ll be blogging about it and posting on social media. We have nothing to lose – we either get him his Medicaid waiver and the behavioral therapy he needs, or we don’t.

Either way, I wear bruises and cuts on my arms. I’m not afraid to show them to the world.

Hal Walter blogs at www.hardscrabbletimes.com and his books are available at The Book Haven in Salida.

One comment on “Wearing A Cause On My Sleeve

  1. Thank you for sharing!!! I am in the same situation (and I know many others too!). My son is only 7. He is very bright, compassionate and loving. But he has a dark side when he is frustrated. I have had to lock myself in the bedroom while he beats on the door. His school has had to put him in the “break room” when he starts kicking, hitting and throwing things at his teachers. I know I need behavior support now before he gets too big and can over power me :(

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