New York, Politics and Autism
By John Gilmore
Thank goodness the 2010 New York legislative session is finally over. Last night the second latest budget in New York history was finally finished, 125 days overdue, and the members of the Assembly and Senate can now return home before they do any further damage. As a citizen, a taxpayer and as the father of a child with autism all I can say is, "Thank God, it’s done." If it weren’t for the possibility of electing some promising candidates this November who are all parents of children on the spectrum I might be ready to just hang it all up.
Our elected officials have raised sales taxes on moms who buy their kid’s clothes at thrift stores but not on hedge fund managers who get paid with tens of millions of dollars worth of stock. They have passed autism health insurance “reform” that has no annual spending caps and no age limits, but requires standards of efficacy that no known autism treatment can meet. They spent tens of millions on H1N1 shots, but are trying to eliminate minimum speech therapy requirements for kids with autism. It’s been a brutal year.
I have been traveling regularly to Albany to try and influence legislation related to autism for eight years now. A more dysfunctional place than Albany is hard to imagine. I have met with hundreds of Senators and Assemblymembers. And as November approaches, in my opinion as a father dealing with autism, with very, very few exceptions, there are no incumbents in either the Senate or the Assembly, in either party, or among the very few independents, who deserve to be returned to office.
The Assembly is composed of less than a quarter Republican members, who have absolutely no influence on the course of events or legislation, and an overwhelming majority of Democrats, who also have almost no influence on the course of events or legislation. Power is held almost exclusively in the hands of Speaker Sheldon Silver and the few committee chairs he doles out a bit of authority to maintain his leadership position.
The Senate is even worse. The GOP controlled the Senate from 1965 until 2008. And their control was total. Not a single piece on legislation introduced by a member of the Democratic Party became law in that 40 plus year reign.
And the Democratic Senate was clearly not ready for the authority it won when it gained the majority in 2008. The newly powerful Senate Democrats are composed primarily of people who were content session after session, year after year, to run for offices in which they had no power, or hope to pass legislation, and did absolutely nothing of consequence. Democratic Senators who were quite obviously legally deranged, like former Queens Senator Ada Smith, had no problem getting re-elected because the position meant nothing anyway, and nobody who had any ability or ambition would want to be a Democrat in the Senate anyway. And as one might expect, these do-nothing sinecures attracted exactly the kind of people who would be attracted to a do-nothing sinecure. Once the Democrats finally won a majority in 2008 and had to assume responsibility, they quickly devolved into competing ethnic gangs duking it out over the spoils that go to the majority. A less distinguished or incapable group of elected officials are hard to imagine.
The newly impotent Republican Senators have their own issues. The average age of a Republican New York State Senator is probably in the low seventies. More that a few are in their eighties. Several are quite obviously senile.
What is abundantly clear from years of haunting the halls of Albany is that the vast majority of legislators haven’t the slightest understanding of the issues confronting the public and even less insight into the legislation they vote upon. They have attention spans that can be measured in seconds.
Fortunately for the autism community, there are candidates out there, all parents of children on the spectrum, who are a running for seats in the Assembly and the Senate. Westchester County Legislator Tom Abinanti is running as a Democrat for the open Assembly seat from Greenburg, Angelo Santabarbara is challenging Republican Assemblymember George Amedore in Schnectady. And tireless advocate Michael Carey is running for the Republican line in Albany County to take on Senator Neil Breslin, author of the worse-than-nothing insurance bill recently passed in both houses.
One thing the autism community needs to learn is that nobody is going to help us or our kids but us. In politics, like everything else, if you want to find a helping hand look at the end of your arm. Another thing we have to do is actively support those candidates who know our lives, who know our issues, who have a dog in this endless fight, because it is their fight too. In the coming days you will be receiving more information about these candidates and hopefully others who deserve our support.
John Gilmore is with the Autism Action Network and the father of a child with autism.
We need at least 50 John Gilmore s (one for each state). Only Autism awareness cannot accomplish our goals or help our children. We definitely need political participation and support.
Posted by: R Prasad | August 06, 2010 at 12:34 PM
I don't think John is criticizing Mr Amedore as much as he wants to support autism parent Mr Santabarbara who lives with autism everyday.
We need parents not only in our legislatures, but, on our school boards as well. This will bring about the systems change that is desired by our community. Most reasonable voting guides could be short and sweet. "Vote out the incumbents who year after year refuse to take principled stands and base their decisions on getting reelected." In NY this year every single legislator voted to sell our kids out to the insurance industry and deny kids with autism a pain free life. Some of these legislators have family members with autism and other disabilities. Remember folks, most legislators do not read or analyze bills they vote on. We have one legislator left who is not running for reelection(Our Governor). Stay tuned to see if he is the poster child for term limits. New Yorkers, get ready to show up and do your part by attending a upcoming press conference, with your kids if you can, to ask the Governor to Veto this bill that legislates discrimination based upon your childs autism diagnosis. Maybe we should start another "Aware" campaign as in
"Learn the signs and be AWARE of how autism speaks was instrumental in all of this discrimination and selling your kids out to the insurance industry"
Posted by: Less talk, More Action | August 05, 2010 at 06:38 PM
Gilmore- you are still one of my favorite unsung heros. Move the family to WA, please!
Posted by: Tami | August 05, 2010 at 05:10 PM
Thanks for your efforts...
Posted by: 4Bobby | August 05, 2010 at 03:56 PM
Well, that was revealing, appalling, and depressing. And I thought things were bad in my state.
You're absolutely right saying that "if you want to find a helping hand look at the end of your arm." In the years to come many of our kids will be leaving the proverbial nest, whether to live in group homes or independently, the ultimate dream. Hopefully some of their parents will find time (aside from rebuilding gutted retirement accounts) to lobby more or perhaps run for public office.
Posted by: nhokkanen | August 05, 2010 at 02:56 PM
Thanks, John. Great work. Too bad Autism Speaks had to f--k things up.
Posted by: Erik Nanstiel | August 05, 2010 at 02:31 PM
Sorry to comment a little off topic here, but how about an AoA voting guide for this November with candidates who have children/grandchildren with autism? The way that the online autism community networks, it wouldn't take long for word to get to the candidates (local, state, U.S., whoever) who would be willing to share how they have a vested interested in the future of our children and garner our vote. Local politicians don't tend to run on autism reform platforms, but then again, local can become state, can become U.S., etc. I have a good friend who is running for District Attorney in Galveston County, Texas, who has a son who received intensive early intervention and has benefitted greatly from it. His family were the first ones to reach out to us with love and understanding after our son's autism diagnosis. And it makes me think of people like Skye Walker who might be treated differently by a DA who understands what things are like in his world.
Anyway, my $.02 worth.
Posted by: BJ | August 05, 2010 at 02:22 PM
raised taxes on thrift store clothes???? aaaaaaaaaaahahahahahahahahah.... the world is insane!!!! You need to try to get this piece in a mainstream paper
Posted by: spacekitty | August 05, 2010 at 11:28 AM
As part of the state budget, Early Intervention reimbursement to therapists was cut by 10%. This is a travesty to the special need population. I am an Occupational Therapist, and there is a major shortage of good therapist out there. This is the LAST area that should have been cut. EI has been PROVEN in the literature to help the overall outcome of children with autism. The fact that these funds were cut is outrageous!
I believe that because all therapist who work for EI are independent contractors and the fact that we do not have a union or lobbyist in Albany made this an acceptable place to cut because no one is going to complain. This case just shows you how callus and uncaring Albany is to the needs of families with autism.
Posted by: Joanna | August 05, 2010 at 10:54 AM
Oh NO, John, does that mean we can't play golf yet?
Thanks for all your hard work. You are one amazing dude. Your sarcastic humor above is worthy of an academy award.
maurine
Posted by: Maurine Meleck | August 05, 2010 at 09:30 AM
John .. as a proud grandpa of a ten year old autistic boy .. I want to thank you for your dedicated effort to educate and inform the public regarding the many pieces of bad legislation that are proposed throughout the year .. that our "know nothing - do nothing" state legislators .. would quickly pass were it not for your untiring diligence.
Indeed, the autism community of New York State owes a great deal to the very small cadre of men and women .. who .. year in and year out .. have taken the time and made the effort to challenge legislative bills that too often seek to serve the best interest influential lobbyists .. rather than the best interest of our families.
We will be forever in your debt.
Posted by: Bob Moffitt | August 05, 2010 at 07:19 AM
George Amedore may not have a child with autism, but he has been a solid advocate for the autism community. Let's not throw the baby out with the bath water. Ask Michael Carey what he thinks of George Amedore, they have worked together on some issues.
Posted by: Horace Wilson | August 05, 2010 at 07:09 AM