One Father’s Mission to Move Mountains

By Steve Gonyea

Summary: Steve Gonyea traces his advocacy journey back to his son Dustin, whose autism and developmental disabilities were poorly understood for years. After fighting for answers, services, and eventually custody of his children, Gonyea turned that persistence outward—opening his home to children with complex needs and ultimately caring for 178 children through foster care, respite, disability services, and juvenile justice programs.

Frustrated by waiting lists and inadequate resources, he began building solutions himself, including an Autism Barn, transportation programs, advocacy organizations, housing and dental initiatives, and disability resource networks. His message is straightforward: progress happens when people stop waiting for systems to fix themselves and start building practical solutions together.

My story…

Steve and his son — It started with my son, Dustin, at age 4. My first wife and I started to have major difficulties with him. He wasn’t speaking and he wouldn’t make eye contact. He would line things up on the floor, he was having urinary issues (continued until he was 17 or 18). Things we now know as autism characteristics, but back then no one knew what autism really was.

Doctors said he was just “behavioral.” I was working two jobs. And I would come home from work, and he had destroyed our apartment. He had two older sisters at the time, 8 and 12. He was aggressive. I needed to find out what was going on.

It wound up costing me my first marriage. My first wife couldn't deal with his disabilities etc. She couldn’t handle the stress. I decided to petition for custody. The Family Court Judges told me that I would never get custody of Dustin and his sisters because 30 years ago, “we don’t give custody to men”. I spent 2 1/2 years in court, and I was finally granted custody. I fired three attorneys and I hired an attorney right out of law school who let me advocate in the courts for my children. It worked (it probably is what made me such a relentless advocate for children with disabilities going forward).

Usually, it’s the men who leave. Approximately 80% of men leave when they have a child with disabilities. I decided to stay and do anything I could to find out what was going on with my son or find support and resources for him.

Unfortunately, even bringing him to specialists and second opinion doctors and numerous testings resulted in not much help or info or how to find a way to make his life better. About twelve years of this. He wasn’t speaking and finally was diagnosed with mental health issues even before an autism diagnosis was attached to him. I continued to try and find out how I could help my son. I finally got multiple diagnoses of what was going on which included autism.

He was finally deemed as a teen with disabilities including autism and developmental delays. Mind you he was already disrupting classes in special ed. So, I already knew that there were issues on the developmental and psychological side of him. I went to a neurologist and more specialists and started having diagnostics and evaluations done. Even if it was to rule things out. Taking him to the doctors and specialists and dentists caused him severe anxiety to the point where it would make him physically sick.

He didn’t understand and neither did we. We still couldn’t find support. Even when we did find an agency, the rules and regulations didn’t help. So, I became a bigger advocate locally.

I remarried, and because so many people in my community and neighborhood had witnessed the turnaround in my own son, they would bring their kids with disabilities over and drop them off. That lived experience helped me help them. Patience and understanding and looking outside the box.

My wife and I decided to do family care for individuals with disabilities on the state level. Usually older folks. We had a range from16 year old kids to a 67 year old man. My advocacy helped them and someday I will tell you those stories because they had positive outcomes.

My wife and I then decided that we wanted to try younger kids with disabilities and so went to a local foster care agency and told them we would foster any child between newborn and age 20. Unheard of by the foster care agency. Foster parents usually don’t take everybody, and because of that we wound up becoming a therapeutic foster home and took the most difficult children in counties around our state. Foster kids with disabilities that had been displaced from other foster homes. Sometimes the kids have been in 20 different foster homes. They kept getting kicked out. These were trauma children, nonverbal children, autistic children, including those with severe autism, and so many other dual diagnosed children. 178 children have come through our home almost all of them with disabilities through foster care, respite care, autism, disability care and even the juvenile justice systems.

As much as I advocated for my own son to get services, is exactly how I went about getting support and services for the other children in our home. I was relentless and soon traveled to Albany to talk to legislators, Senators, and joined other advocates. I did that for many years and after I continued to see waiting lists and a lack of resources and support for all of kids. I went to a local Assemblywoman who told me not to open a nonprofit 501c3 and instead try and partner. There already were 140 something nonprofits in our area.

So, I did what I had learned to do over time and that was to find solutions. I built an Autism Barn on my property. So, my son and others had a place to go to that was fun and that beat walking around in a mall. ?cid=app_share Learn more about the Autism Barn.

I helped build a complex care recreation center for adults in Utica. No rules and no restrictions like there normally are with provider agencies.

I built an Ability Bus program with our Veterans Center here that provides free transportation for our disability kids and families. Co-founded WorthDoing.org which is going to take this bus initiative nationwide and will include 100 buses (2 per state) in a year. We plan on other programs under this National nonprofit also.

Co-founded Fcgadvocacy.org a website geared towards solutions and inspiring others and DadAbility podcasts, (to get Dads and father figures to stay and engage with their IDD children).

Started a state and national Housing Collective geared towards finding real solutions led by parents and families for their disabled children now and in the future.

Started a state and national Dental Collective geared towards finding real solutions to help our IDD and complex care children and adults get dental care including sedation. And bringing out of the box ideas to the table to fix the complexities of this issue.

Got our NY State OPWDD (state disability agency) State Commissioner to start a statewide listening tour where she would come to our house or a local library and talk to families in an intimate setting. This had never been done before. Ever. It was an overwhelming success.

I helped plan and form the most comprehensive resources and directory for the disability community in the country and now the world, called AbilityVillage.com through a 501c3 nonprofit called HELPipedia.

I also helped set up an in-home care medical model that was so successful until new management came in and pulled it. I’m looking for other ways to bring it back out. What better place to provide medical and dental (especially the routine things) is in the home where they are most comfortable.

I serve as a New York State Statewide Lead for the NEW YORK ALLIANCE for DEVELOPMENTAL DISABILITIES (NYADD) a parent group of 23,000 plus families and growing.

I serve as a New York State Chair for the NATIONAL COUNCIL on SEVERE AUTISM (NCSA), a national 501c3 nonprofit geared to severe autism.

I serve on multiple committees at the INSTITUTE for EXCEPTIONAL CARE (I-EC) including their dental and medical committees.

I gladly serve on about 20 Boards, not to pad a resume, not that I have to, but to move needles and to inspire others to join the fight.

I’m currently working on additional solutions to help our IDD families because too many families are on waiting lists and can’t access medical and dental care and other necessary things they need.

I will always stand with the single mom struggling to make it with their disabled child. (My Mom was one of those single Moms). I’m out of the box and creative and am a doer.

One person can move the needle. Some can move to small mountains. Together we can move big (roadblocks) mountains.

#SolutionsNotTalk (is my drive)

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