Super Dadvocate: Tony Mancuso Making a Difference!
Tony is more of an unsung hero – you know the type – the dad next door whose story you don’t really know – but are surprised when you find out what they do. Tony Mancuso has been advocating for the special needs community for over 21 years, putting new laws into place that change lives for the better. He has educated parents, helped build new programs, as well as opened lines of communication and voiced concerns to political officials. All of this has helped make life better for children and families in the special needs community. Tony’s passion and commitment make him more than deserving of the title Super Dadvocate, and when you read his story, we think you will agree.
PSN: Tony, tell us a little bit about you and your family, and when you became aware that something was different with your child.
Tony: I have a special needs son who is 27 years old. He is medically fragile and has a VP shunt from the age of two months old and was diagnosed with hydrocephalus. This has caused significant brain impediments even though we caught it within the first two months of life and had the shunt put in place.
He lost his left kidney due to multicystic kidney disease and was diagnosed with juvenile diabetes, but we have been able to avoid the shots by controlling it through the years with medication, diet, and exercise.
He has been pretty good, and although he doesn’t have any speech, he does communicate through association by showing one thing and then another. He is low tone, so we have had some issues with being able to walk, but he is ambulatory.
It has been a pretty long haul. We put him into early intervention when he was two years old. I think we followed that school bus for something like five months. I even applied to become a bus driver for the school because I was with him for so long. I figured that if I am going to be on the bus with him, I might as well drive it.
PSN: Did you become a bus driver?
Tony: No, I did not. I had a “day job” at the time. What brought me more into becoming an advocate was an incident we had on the school bus back in Long Island, New York when he was approximately six years old. He was not feeling good that day and squatted down in the bus. The aide on the bus grabbed him by the neck and pulled him up and pushed him up into the seat, which could have been a fatal event because of the shunt, and if that had disconnected, it could have been significant.
When I spoke with the bus company I was surprised that their only responsibility was to transport him – the aides had no medical background or training for special needs individuals other than to make sure they sat in their seats.
I told the bus company this was unacceptable and they said they would “send someone over to train our driver.” When they brought the driver and aide over to train at the school so that they knew how to take care of my son, I asked about the other individuals on the bus. They said “each parent would have to request training for their child”. There was no requirement for training, and with all of the buses out there, I knew that was not acceptable. They said “there was no law that mandates that we do this,” so I said, “okay, there will be one.”
I spent four years back in the days of fax machines (long before email) writing old-fashioned letters and sending them out. I have three binders, three inches each, full of documentations and correspondence. We got the state law passed in New York to train aides on the buses for medical emergencies and the proper way of handling individuals – almost as if they were a caregiver. That is where it all began.
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