Thursday, September 17, 2009

My Day In Court: Testifying in Favor of an Autism Insurance Bill

I would like to apologize to all of you. I meant to write about this months ago, but it seems that time got away from me. Better late than never, though, right?

On May 14th, 2009, just days before I began my first class of the summer, something downright remarkable happened. I received an e-mail from Leslie Long, who works for Autism New Jersey, an autism advocacy organization here in NJ. She told me that there was an Autism Insurance Bill (A2238) up for approval in the New Jersey State Assembly Appropriations Committee and Senate. The purpose of the bill was to have insurance companies pay for medically necessary evidence-based treatments for autism (such as ABA) and other related services that most families pay for out-of-pocket right now, and many have even gone bankrupt because of trying to pay for these services (many of which can cost upward of $50,000 a year). The hearings were to take place the following Monday, the 18th of May, and she wanted to know if I would be willing to testify in favor of it!

This, of course, seemed like a very worthy endeavor to me, even though the bill only covered individuals aged 21 and under. So, I agreed to testify. Dan (my roommate) and I got up bright and early that Monday morning, and together we drove down to Ewing, a town right next to Trenton, which was where the state annex was located. I left my car at Autism New Jersey's headquarters, and the two of us, along with Barbara Wells (who also works for ANJ) headed to Trenton in Barbara's car.

I was struck by the atmosphere as I walked into the courthouse, signing my name in the guestbook and affixing a temporary "Visitor" badge to my lapel. More members of our group began to filter in--whom I recognized immediately because we were all dressed in varying shades of red, the chosen color for the cause and ANJ--and we stood outside the Senate hearing room chatting and mingling. One woman from Autism Speaks was handing out "Vote YES on A2238" buttons for people to wear, and both Dan and I took one and proudly pinned them to our jackets.

A few more minutes passed, and after Leslie Long couldn't get ahold of an unavailable senator to whom she had wanted to introduce me, we all went up to the Assembly Appropriations Committee hearing room. The doors to the room were the first thing that I noticed--they were tall, black, and heavy, and somewhat resembled the doors to the kitchen in the movie Ratatouille. The red patterned carpet also caught my attention, so bright and busy that it was like being inside a casino. I made my way up to the front row, along with Suzanne Buchanan, with whom I would be testifying.

When Leslie contacted me, the first thing I asked was, "What should I say?" After all, nothing would be more valuable than the words I chose for my testimony, and whatever I said needed to be concise, as there would be only a brief time for me to speak. I remembered my Letter to My Younger Self, and I decided that that would be the perfect thing to read as my testimony. I sent it to Leslie, as I was sure we would need to modify or abridge it somehow due to the time constraints. She read it aloud as we were on the phone, and said to me, "You know what? I can't think of a thing to change. Leave it just as it is."

So, I did, and only shortened the introduction that I'd written to the letter. I sat there in that courtroom, clutching it in my hand, and was so nervous, unsure as to whether it would win the Assembly over. I felt especially anxious as I cast a glance over at Suzanne's testimony, all neatly spaced and professional-looking on a crisp page of paper bearing the Autism New Jersey logo and letterhead. I crossed my fingers, hoping that I would be taken seriously, even though I didn't have custom stationery or the credibility that comes with it.

Another bill went up for debate first, just to bide time until everyone related to the A2238 bill had arrived. The first person to testify was Bob Wright, co-founder of Autism Speaks. The Speaker of the Assembly, Joseph Roberts, had asked Mr. Wright there to deliver testimony of his own, based on his experiences with his grandson. After him was Assemblywoman Joan Voss, who has an adult son with Asperger's syndrome. Ironically, I am a member of the Asperger's Syndrome Advisory Board for the Daniel Jordan Fiddle (DJF) Foundation, and her son is also on the board.

After Assemblywoman Voss finished speaking, Suzanne and I were up. Suzanne went first, and I listened carefully as she recited her prepared speech. Once she was done, the Chairwoman asked if I had anything to add. Her phrasing momentarily gave me pause, as it sounded like I was merely meant to be a follow-up to Suzanne's testimony, rather than giving my own separately. I disregarded the thought, however, and began to read my Letter.

I did not realize this at the time, as I was intently focused on quickly reading the letter, but Dan later told me that the room was completely quiet when I read. When others had given testimony, people were still talking--assistants to the committee members were walking back and forth from the table, things like that. But there was not a word spoken by any of them as I read. Dan also said that he saw people crying softly during my testimony, so moved were they by my words that it brought them to tears. I was floored when he told me all of this, amazed but in a very happy way.

The one distinct memory that I do have, however, is when the Chairwoman interrupted me about three-quarters of the way through the letter, saying that testimonies needed to be short due to time constraints and that, while she appreciated what I had to say quite a lot, that (more or less) I needed to hurry up and finish. So, I skipped one paragraph in the letter, which enabled me to reach the end more quickly.

I made my way back to my seat afterwards, and several people turned to me, their hushed voices warmly saying how much they'd enjoyed what I said. To my surprise, the Assembly voted on the bill right then and there! They went around the table asking each assemblyperson for his or her vote ('yes' or 'no'). When one woman gave her vote, she stopped to say, "And I'd just like to say to Amy, thank you so much for what you said. Your letter was beautiful." I got a personal shout-out during the vote, which was completely unexpected, but so nice.

Once the votes were tallied, we were all thrilled to discover that the bill had passed! Victory was ours! What a feeling indeed. We all hugged and embraced one another, delighted and relieved that all of our hard work had paid off.

It was, however, a somewhat bittersweet moment for me, because I knew in the back of my mind that this battle is far from over. Adults with autism and autism spectrum disorders still don't have insurance coverage--even if they did, there really aren't any services for the insurance to cover in the first place. I am proud to have been a part of this moment in history, to have contributed in the way that I did, but I know what lies ahead, and I hope that we adults will have just as many people fighting on our side as the children did.

I often feel as though many government offices and social services departments seem to think that autism and Asperger's syndrome are "childhood disorders." As if these individuals will somehow magically grow out of autism when they turn 18. But we all know that this is not the case. The fact of the matter is, autistic children are one day going to become autistic adults, and what will happen to them then? Many end up in group residences, or live at home with aging parents who will one day not be able to take care of them. Something has to be done about this.

What will the government do when millions of autistic children turn 18? Act as if they don't exist? The one true kernel of wisdom in passing this bill is that it seems as if people are starting to realize that it is better and far more sensible to pay for services now, so that these individuals can grow up to be productive, contributing members of society, than to wait until they are adults and pay for them to stay at home, without jobs, without anything, draining away their family's money.

This, of course, does not do much to help the adults who are here right now, who are struggling to find and maintain employment, to make and keep friends and develop romantic relationships. I have found myself become a voice for adults on the spectrum, especially now that I am starting my Master's thesis, in which I have to design and run a study using the principles of applied behavior analysis to teach a skill.

I think about adults on the spectrum all the time, about all the challenges they (we!) are facing, and what I can do to make things better. Testifying in favor of this bill was one step in that direction. I know that if I continue my work, write my book, (eventually) become a college coach for individuals with Asperger's syndrome, those will all be big steps in that very same direction. Having been a part of this democratic process and seeing it in action has inspired me to keep up that good fight. And I hope you all will, too.