February 2, 2011

Yes Virginia, There Might be a Santa Claus

Posted in My Take on Autism tagged , , , , , , at 11:28 am by autismmommytherapist

Back in 2004, when my husband, son and I were residents of the great state of Virginia, our eldest child Justin was diagnosed with Pervasive Developmental Disorder. He was only seventeen months old, which at that time was incredibly early to be identified, a fact which every professional we encountered told us was strongly in his favor. No one was suggesting he’d recover from autism, but the point that was brought home to me on every single one of our myriad doctor’s visits was this:  the only thing the multitude of autism professionals can agree upon is that early, and quality, intervention can make a huge difference in the progress these children make throughout their lifespan. I remember even through my despair being thrilled we had figured out his issues so soon in his young life, and being certain that help, indeed, would come. My mom had told me how comprehensive New Jersey’s therapeutic services were for the under three set, and I was certain, since I lived twenty minutes from the seat of our nation’s government, that Virginia would afford us similar assistance.

Soon, it became clear, I was dead wrong.

After our initial consultation with Virginia’s Early Intervention assessment team, we were told the sum total of therapeutic hours we would receive monthly would most likely number six, and if we pushed it, possibly eight. Occupational therapy services were offered, as were speech. Applied Behavioral Analysis hours were not considered, as Virginia’s Early Intervention program does not recognize a diagnosis of autism, even though said therapy addresses the core deficits of the disorder.

Although Fairfax County had made the magnanimous decision to accept children into their pre-school autism program the fall after they turned two, age-wise, Justin wasn’t yet eligible to enroll. Frankly, that meant any type of help he would receive would have to come from me. It meant making my temporary leave of absence from teaching permanent. We had to hire a Board Certified Behavior Analyst to come in twice a month and train me and our therapy team, all to the tune of $1200 monthly, a sum that did not include what we also paid our private therapists. The hours that Early Intervention offered us were a joke. I had a year left until Justin could enroll in school, into a program I was not certain would ultimately be able to meet his needs. My husband’s insurance covered none of our private BCBA’s inordinately expensive, yet necessary, instruction. We were existing on one salary.

In short, we were screwed.

Eventually, the lack of Early Intervention services, coupled with the fact that spending thirty hours a week trying to teach my own child how to sign for “ball” is insane, propelled us to relocate to New Jersey. Within weeks, we were granted almost twenty hours a week of a variety of therapies, including the Applied Behavioral Analysis hours so crucial to his development. I remained present for all of those hours until he began school in the fall, but throughout this period I always had another adult with whom to share the workload with Justin.

Honestly, during those months I felt like I was on vacation. A really good childless, island-hopping, pretty drink-profuse vacation.

Ironically, not too long after we moved back here, some amazing parental advocates convinced New Jersey to pass autism legislation, which has enabled many families to seek relief from their insurance companies. Services such as speech, occupational therapy, physical therapy and those gold-plated ABA hours are now being covered at least in part if you’re a subscriber to certain insurance policies. The legislation hasn’t fixed everything. There are still many families whose insurance providers render them ineligible to this legislation, many of whom are paying for those services anyway, emptying retirement funds and taking out second and third mortgages. Although we are quite fortunate not to fall into the latter category, we still cannot pull from New Jersey’s autism legislation trough. Even though we reside in the Garden State, my husband’s insurance coverage originates in Virginia, and as yet, comprehensive reform has not passed in Richmond.

Until, hopefully, today.

On January 27th, Virginia’s House Labor and Commerce Committees passed HB 2467. Virginia’s Senate Finance Committee is scheduled to hear their already passed version of the senate bill early this month. Today, on February 2, 2011, after many hours of diligent, behind-the-scenes work by politicians, parents, and advocates, Bill 2467 will finally grace the floor of the house as well. Even if this bill is signed into law I’m not certain it will help us financially, although it might assist us in mitigating the costs of Justin’s weekly speech therapy sessions. It will be months before the bill becomes law, and probably many more months before Jeff will be able to weave his way through the morass of his new insurance company’s rules. Ultimately, a pass in both the house and the senate may not benefit us at all.

But there is no doubt it will bring a sigh of relief to a multitude of families residing in what I consider to be my adopted state.

I have to share that I don’t ask the universe for much. I am, however, keeping all appendages crossed that this bill, this long-awaited piece of legislation, will pass. I’m hoping it becomes law, because children with autism are being diagnosed earlier and earlier, sometimes years before their public educational system is required to accommodate them. I’m eager for this legislation to pass in Virginia so that children can have access to services when they need them, not just when they’re deemed eligible for school. For once, I’m actually praying for the words on this bill to transform into law so that no other family will share my experience of those long, isolated fifteen months, endured just minutes from our nation’s capital.

I hope you will join me in thinking positive thoughts, so that for Virginia, there may indeed one day be a Santa Claus.

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4 Comments »

  1. Misifusa said,

    I’ve got my fingers crossed for you as well.

  2. Mom said,

    It’s about time!


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