Life is almost never a straight path. If you try to make a plan, you will sometimes head in a direction you never could have imagined. For me, the journey has not been simple, and it is has not always gone as I expected.
My parents are both Italian immigrants. They left their homes in the Province of Caserta in the Campania region of Italy to come to New York almost 50 years ago and I was the first in my family to be born here. After graduating high school, I joined the US Army and served in the reserves for 8 years. Later, I graduated from the University at Albany and went on to work as a Professional Engineer. During that time my wife, Jennifer, and I got married and started a family with our first child, a beautiful baby boy, Michael. We were a new family. We just bought our first home and were beginning our lives together. Then one day, everything changed. It’s a day that I will never forget. I remember the words in my head repeating over and over again. My wife saying, “Ang, there’s something wrong with Michael. He’s not talking.”
As a young father, I was told that my 3-year-old son, Michael, had autism. It was a scary diagnosis for a new father and I didn’t know what the future would hold. It’s a day that I re-live every time new parents come into my office after receiving a similar diagnosis. Years later, it has led me to some of the most rewarding and important work that I could ever be doing. In the New York State Assembly, I now serve as chair of the Sub-Committee on Autism Spectrum Disorders where I have the privilege of working with amazing advocates on key issues facing those with developmental disabilities. As a state legislator, much of my work has been focused on providing those with developmental disabilities a voice in our state legislature.
The numbers are alarming. The latest report released just this year by the U.S. Centers for Disease Control showed that about 1 in 59 children in the US are now being diagnosed with autism, up from 1 in 68 in 2012 and the numbers have doubled in less than 20 years. Autism is now the fastest-growing developmental disability in the country. It’s a crisis that needs immediate attention.
Angelo Santabarbara’s Autism Action Plan for NY State
With more than 3.5 million Americans living with an Autism Spectrum Disorder, time was running out and people were being left behind. It was time to take on the challenges and in my first term in office I introduced my Autism Action NY initiative in the New York State Assembly. It’s a plan that takes on the challenges thousands of families affected by autism are facing each day. It’s about participation, removing the barriers to communication and helping everyone understand. It’s a plan that’s about people, acceptance and inclusion, potential and independence. It’s the plan I created for those who need a voice in our state legislature so that everyone has the opportunity to become the best they can be, with no one left out and no one left behind. It’s my plan to give all New Yorkers with disabilities a stronger voice.
Autism Spectrum Disorder Advisory Board
With Autism Action NY, thousands of families have seen some big wins and important steps taken towards addressing the challenges we all face together. In 2016, the critical piece of my Autism Action Plan was signed into law (Chap. 469 of 2016). The measure created New York State’s first Autism Spectrum Disorder Advisory Board to develop, implement and update a statewide Autism Action Plan, incorporate new information as it becomes available, and established a central location for available services. New York is now one of the only states to have a statewide Board like this.
Statewide First Responder Training Program
Since then, the plan has grown with new bills, new funding and new legislation signed into law that is making a difference for thousands of families. This year a number of key bills were passed in both houses and are now signed into law. Among them was an autism training program for first responders. This is the first-of-its-kind statewide program that ensures police and first responders are properly trained to recognize the signs of autism and how to respond (Ch. 57 of 2018).
With 1 in 59 children now born with autism each year in the United States it is essential that our first responders have the proper training. Individuals with autism like my son Michael often struggle with communicating, making eye contact, and responding to simple questions, even if it’s asking for their name. Across the country we have seen how routine encounters with law enforcement can escalate simply because they are misunderstood. The program was designed to help bring attention to areas that need specialized training so that officers are better prepared when responding to those with autism spectrum and related disorders.
Whether it’s helping a family find a missing child or responding to an adult with autism whose behavior may be misunderstood, recognizing the signs of autism and knowing how to react is important. This training is a valuable resource to those serving in law enforcement and after years of working on this initiative, I’m so very pleased to finally see it become a reality here in New York.
Standardized Autism ID Card
Also the first of its kind, a companion bill was passed to make New York’s first standardized Autism ID card available to families and individuals, replacing locally issued cards and homemade notes. Offered as a communication tool, it can help describe some of the challenges a person with autism may face and can also provide important information during an emergency. First responders will be trained to recognize the card through the new Autism Training Program for First Responders program (Ch. 209 of 2018).
Michael is 16 now. He’s my inspiration, and he’s my angel. He doesn’t talk much, but he teaches me new things every day. As a father, it’s hard to watch him struggle with words and I know it’s hard for him to make friends, but he’s my best friend and whatever we do, we’ll do it together. It’s from challenges in our life that we gain perspective, compassion and wisdom. Over the years, despite the many challenges Michael and I have faced, we continue on our journey together and we continue to overcome. We are showing that disability does not define you and we hope the rest of the world will follow.
To contact New York State Assemblyman Angelo Santabarbara, call (518) 382-2941, email santabarbaraA@nyassembly.gov, or visit https://assembly.state.ny.us/mem/Angelo-Santabarbara. Correspondence to Angelo Santabarbara may be sent to: 433 State Street, Center City, Schenectady, NY 12305.
