I am a life-long Long Islander, as is my family. The first time my bride Arleen and I heard the word Autism was in late 1963, 62 years ago. High school sweethearts, we had been married just two years, and our eldest son Roy was but a year old. We would go onto learn that ultimately all three of our beloved sons – Roy Jr,. Mike, and Glenn – had Autism.

We later learned we are a Fragile X Syndrome family. We made another vow to each other: our sons are going to live in their own home with us for the rest of their lives. We did just that. Under the Medicaid waiver we were the first family in New York State to receive residential services for disabled adult children living at home. Our sons relied on Medicaid their entire lives for support and acute medical care. They were afflicted with many unique illnesses, some life-threatening, involving hospitalizations of all three.

They also had long-term care needs arising from their Intellectual and Developmental Disabilities. They participated in Day services after graduating from school, including vocational training. Medicaid enabled our youngest son, Glenn, to gain employment with the support of a job coach. He completed 20 quarters of employment and qualified for Social Security. As they aged and their needs became more complex, our sons required additional residential services through Medicaid.

Our family saved taxpayers millions of dollars in Medicaid costs by keeping our sons at home rather than a group home, but Medicaid was and is an essential part of the safe and secure quality of life they required.