July 6, 2013

Unlucky Thirteen

Posted in My Take on Autism tagged , , , , , , , at 10:22 am by autismmommytherapist

Nine years ago this fall, after several lovely Virginia Early Intervention providers had assessed my small son, I sat down with my mother at my dining room table and eagerly awaited their verdict on how many hours and types of therapies my recently diagnosed autistic toddler would soon receive at their hands.
After half an hour of regaling me with just how developmentally delayed my child was in all areas, they gave me their verdict on how much help I could expect, help I was happy to pay for, help I was desperate to accept.

The lovely women who had worked with my son for the better part of an afternoon offered me eight hours a month. Every autism expert in the nation recommended at least eighty. They held out an olive branch of six hours of occupational therapy, and two hours of speech.

ABA, or Applied Behavioral Analysis, which addresses the core deficits of autism and is exactly what my son so desperately required, was not on the table. Unlike New Jersey, in 2004 Virginia’s Early Intervention agency did not recognize a specific diagnosis of autism in their clients, and as such was not required to provide the instruction my son so dearly required.

I remember clear as day looking at my stunned mother across the table, putting my head in my hands, and wishing with all my heart I could just cry my guts out.

In that moment I knew my entire world had changed. Reality hit me like a tidal wave- I would have to get trained in the core therapies of autism, and deliver thirty to thirty-five hours a week of said therapy to my own autistic toddler. My husband’s insurance provided no respite from the costs, and even with me acting as his primary therapist we still needed a Board Certified Behavior Analyst to oversee his program and train me and any other therapists we hired, an out-of-pocket expense of over $2,000 per month.

Although Fairfax County Public Schools generously took autistic students the fall after they turned two I’d begun to hear unsettling things about my son’s future program, namely that he’d have no hope of ever having a one-to-one aide, an aspect of his education I felt strongly would be integral to his ever being an academic child. In my heart I wasn’t certain Justin should start before he was three-and-a-half in that environment, or if he should begin there at all.

I recall realizing even if I could master the intricacies of ABA and deliver excellent services to my son that I might not be able to keep up that pace for two years, and that he might receive even less intense instruction than he did at home when he finally entered a school program. I realized I would have to make my temporary leave of absence from teaching permanent, would have to perhaps forever put on hold my dreams of eventually becoming a school administrator.

I understood that despite having built a great life in this Washington, DC suburb over the past decade-and-a-half that our family would have to move, that our adopted state could not meet our child’s needs in either the short or the long run. I swallowed, and accepted that my current life, as I knew it, was over.

I also knew I was damn lucky I could teach him, and that we had the extravagant luxury of being able to relocate. I am certain most families do not.

I’ve never forgotten that day, both being distraught over the lack of services that were offered to me, and my even greater despair at the fact that our insurance would not cover us at all if we sought private providers for therapy. I’ve continued to follow Virginia’s journey over the last almost decade since we moved back to New Jersey, and was so grateful to see that Governor Bob McDonnell signed into HB-1106 into law, a bill which assures that providers of Applied Behavior Analysis (ABA) are covered under the law.

Even if Early Intervention services have not improved since then, this document will bring much needed relief to thousands of families, many of whom may not be as lucky as ours was. My heart rejoiced for them, even as my tired soul remembered those long days, weeks, months when I was my son’s primary provider, hoping every day I was giving him what he needed, both as his mom, and as his teacher.

I look at the mostly happy boy he is almost a decade later, and I believe I played a part in this outcome. I also believe no parent should ever have to do this for their own child.

According to the National Conference of State Legislatures, thirty-seven states and the District of Columbia now have laws related to autism and insurance coverage. This is a vast improvement from the dark ages of autism of sixty years ago, even a major improvement since we began our personal journey a decade past. Yet, thirteen states in our union have yet to ease the burden for families whose days are often extremely burdened by the disorder.

Children in thirteen states may still be denied required therapies because their parents can’t afford to hire outside providers to deliver core services their sons and daughters may require to communicate, to quell their behaviors, or simply to be happy and productive in a world which they must invariably find incredibly challenging. My heart goes out to all families still struggling to cover the often astronomical costs of autism, every single one.

Thirteen states. It is far too many. To those advocates fighting every day to change this statistic, I offer you continued hope, and courage.

May every single one of you win.

Advertisements

2 Comments »

  1. Chad said,

    Berlee–

    So informative and unbelievable. Always enjoy reading your posts!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: