Having cared for her brother Steven during their youth, Martha Kustesky Young knows well the life of a developmentally disabled individual. She understands the importance of supporting their dreams. She understands that routines are vital. And she knows more than most how the COVID-19 pandemic is challenging the important work of the Olean Center staff.

 

That’s why she donated $50,000 to the center this past summer on behalf of her late parents Allen and Elvira Kustesky. Martha’s contribution was made in appreciation of all the Olean Center did for Steven and the family, and it follows her previous donation of $5,000 in Steven’s memory when he passed away in 2012.

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We are so incredibly thankful for Martha’s generosity,” said Ruth Tureckova, Executive Director. “Martha’s gift will enable us to better pursue our mission of community integration and helping our participants realize their dreams.”

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“When you’re dealing with something like a pandemic, something unprecedented and you have people accustomed to coming to the Center for programs, it’s hard for them to understand that they can’t come to the Center anymore,” Martha said during a recent interview. “People like my brother have routines, and all of a sudden their routines are disrupted, their world comes to a screeching halt.

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“So it was all the more important that I make this donation now,” she said. “They can use it for staffing, or programs or their vehicles – I leave it to their good judgment. They’ve done a great job so far.”

 

Martha’s donation came from her family’s trust, which was funded by her parents’ hard work on separate manufacturing shifts, and their thrifty ways.

 

Allen Steven Kustesky worked first shift at General Dynamics Electric Boat in Groton and Elvira Sculco Kustesky worked second shift at the George C. Moore Company in Westerly. Elvira would take home discarded copies of the Wall Street Journal and taught herself about the bond market and finance.

 

“She was a mathematical whiz,” Martha said.

 

Martha’s investment coaching – she’s a former banker who was awarded for her work in helping to write IRA legislation -- certainly helped. But the foundation of the trust came from her parents’ simple lifestyle, coupon clipping, and bargain shopping, according to Martha. Allen died in 2007 at 92 and Elvira died in December 2020 at 98.

 

They lived on Riverview Avenue in Westerly and had two children. At seven weeks of age, Steven contracted spinal meningitis that caused intellectual and physical disabilities. He underwent surgery to relieve pressure on his brain but left him without the ability to speak or hear.

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Martha was Steven’s primary caregiver between her parents’ work schedules, but she also became his best friend.

 

“Caring for Steven taught me to be empathetic and responsible,” she said. “The neighborhood kids would come over and ask if I could play and I’d ask if Steven could come. If they said no, I didn’t go.”

 

“We were a package deal growing up. We’d shoot hoops and do arts and crafts, and I’d help him with math and reading and teach him what I was learning in school. We communicated in sign language,” she explained.

 

“Without ever speaking a word, Steven taught us volumes about living and loving and having hopes and dreams. He taught us a lot,” Martha said. “He was very gentle and caring. If I got scolded, he would cry!”  

 

Steven attended the Rhode Island School for the Deaf in Providence in the early 1960s, and that’s when the Kusteskys met Frank Olean and his family.

 

“I was in elementary school and Frank Olean talked about this vision he had for a center for people with special needs,” Martha explained. “It really was cutting edge thinking in the 60s.”

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“It was very exciting for my parents, and they got involved once it opened.”

 

Steven lived to 62, much longer than anyone anticipated. He lived in a group home in Westerly and independently in Babcock Village for a while.

 

Martha sees Steven’s legacy as much more than the financial donations made by the family. She explains that his disabilities inspired their uncle, the late Mario Sculco, to become a neuro-surgeon. “He wanted to understand the brain because of Steven,” she said of her uncle, who practiced at the William Backus Hospital in Norwich.

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And her cousin, Tom Sculco, now a leading orthopedic surgeon in New York City, was inspired to become a doctor because of his uncle Mario.

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“I believe it was a ripple effect that started with Steven,” she says, adding that she studied psychology and counseling at the undergraduate and graduate levels at the University of R.I. based on Steven’s life.

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As for Martha’s legacy -- in addition to her contributions and her children, David and Emily and grandchildren Olivia and Cole – her volunteer work with various organizations is sure to leave a lasting effect for many. She has worked with the Special Olympics organization and with breast cancer and domestic violence support groups. She was named Volunteer of the Year by the New Hampshire chapter of the Arthritis Foundation when she worked in Nashua, NH.

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Her most passionate work, however, is on behalf of Lyme Disease patients. She suffered two strokes, at ages 34 and 40, which her physicians attributed to stage 3 Lyme Disease, Bartonella, and Babesia (two other tick-borne diseases) that went undiagnosed for more than a decade.

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Martha lives in Wakefield and Florida now, “but my heart will always be in Westerly,” she said. “I have lots of fond memories of Westerly,” she said with a laugh. And when she visits the Olean Center her fond memories of teaching -- and learning from -- Steven come rushing back as well.

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