This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.
On a gray, drizzly Tuesday, I rode an Amtrak train from New York City up to Albany to meet with parents and legislators who want to bring autism insurance reform to the Empire State. As the tracks skirted the Hudson River, I thought how much my son Liam, who has autism, would enjoy this trip. Staring at the view rushing by. Checking out the snack car. Asking a million questions of the conductor or people who just want to listen to their iPods.
Then I wonder why they are going to Albany.
Is what they are doing in the Capitol today just as important to them as this is to me?
It took trains, planes and automobiles to make this day happen…and luckily, so far, no boats. Back home the Mississippi River in my hometown of Baton Rouge was cresting. Families west of me flooded by opened valves in the Morganza spillway. I looked at the Hudson a little differently on this trip – watching it flow along, unobstructed, to the Atlantic Ocean – mighty and unstoppable. Rivers respond directly to their environment generally maintaining their course but occasionally overflowing their banks and destroying everything in their path.
Passage of reform in New York State is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.
For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.
I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.
I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.
The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.
This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.
Everyone is busy but we hear time and time again from every nook and cranny around the United States that face to face meetings with legislators are the most effective thing you can do for change. Every day the insurance industry has lobbyists who stroll the halls in Albany working against your kids in New York. If you want this bill, with the language the way it is now, you will have to stroll the halls or meet with your legislators when they are back in the district.
After riding on that train on Tuesday, I realize firsthand how hard it is to physically get to Albany. But I also learned that close to 1.5 Million people live in the Albany metro region. To those families, I am calling on you personally to do what you can to get down to the Capitol more regularly during the session. Meet with legislators and their staff. Please be our ground forces for families like yours who live 5, 6, 8 hours away on the other side of the state.
For the rest of New York, you are not off the hook! If you want this I hope over the next month you are prepared to make countless phone calls to support them. Make sure you are registered at www.autismvotes.org!
Everyone gets nervous talking to politicians but don’t worry. If you have never done this before, we will teach you what you need to say and how to do this. We just need to know who is willing to commit to working this bill in the halls of the Capitol over the next six weeks.
If you live in Albany and want to become part of our ground force operations, please email me at Advocacy@autismspeaks.org.