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Out of the shadows of institutional life

Breanna Benz

Sy Zielinski has been a leader in the developmental disability field for 40 years.

Zielinski knew early in his career that he wanted to make major changes in Rochester and surrounding areas as he began to recognize the geographic locations of care for the developmentally disabled.

When Zielinski became director of the Office for People with Developmental Disabilities Service Office in the Finger Lakes area, a position to which he dedicated most of his career, people received services in large, isolated and culturally uninformed institutions set apart from their families and communities.

“The services that were evolving were basically in the shape of a doughnut: Rochester in the middle with few services. It was most obvious with people from different cultures; they were unserved or underserved,” he said.

Some cultural populations within inner-city Rochester rejected remote care for a family member with special needs, despite lacking alternative local support.

As the state of New York became interested in providing a different infrastructure of options for those with developmental disabilities and their families, Zielinski managed the closure of institutions, rebuilding care in individual communities.

He reached out to community-based service providers already in existence, like local colleges, special interest clubs, travel and volunteer groups, recreation centers, cultural organizations, religious and municipal establishments, independent housing and local corporations.

These partnerships began allowing for a naturally occurring blend of disabled and non-disabled community members participating alongside each other, outside the confines of any one centralized building or entity, something Zielinski said is indispensable for healthy communities.

“It’s our job to empower these folks, to give them opportunity to make choices, learn what’s out there and have the confidence and motivation so that they can do what they want to do,” Zielinski said.

Zielinski retired from his position at the Office for People with Developmental Disabilities and in 2006 became chief operating officer for CDS Monarch Inc., a human services agency that assists people with intellectual and developmental disabilities, veterans and seniors.

He is a key adviser to Sankar Sew-nauth, the organization’s president and CEO. Sewnauth says Zielinski’s forethought and persistence in discovering the best solutions are essential to the organization.

“Any decisions we make at CDS, Sy asked, ‘What positive difference is this going to make in their lives?’ If we can’t answer that question, then why are we doing it?” Sewnauth said.

In addition to helping the agency transition to community-based services and leading several departments, Zielinski led CDS Monarch’s relocation project as well as senior housing application processes, attaining significant funding for the agency to build affordable senior living facilities.

Zielinski doesn’t see people who have developmental disabilities as people who need to be treated differently, Sewnauth said, but as human beings that happen to have unique challenges; he is passionate about breaking down barriers to see beyond disabilities.

“One particular individual I’ve known for years. He was at one time in one of the institutions. I was very proud to be the best man at his wedding. He now has three children,” Zielinski said. “The contact with that individual, it brings tears to my eyes, to see what is now for him. He is employed full time, and what it could have been if these changes didn’t happen, if he was still in the institution.”

Families’ willingness to sacrifice and labor to establish services near or in their homes similarly impacted Zielinski, reinforcing his own commitment.

“It was a pleasure working in the early days and through the years with parents of people who were developmentally disabled,”he said. “Right in their living rooms they built a direction for services with virtually no resources, but a commitment to their children.”

Zielinski said services for people with development disabilities have come “a long, long way, in terms of the quality of life for folks” from the days of institutionalization.

“And I’m proud to be a part of that; I’m still a part of it, I have been a part of it as a leader in this community, and it has been very satisfying to me, and a source of pride, that the outcome has been so good.”

Added Sewnauth: “His whole life has been dedicated to this, the people and community.”

Breanna Benz is a New York City freelance writer.

3/20/15 (c) 2015 RBJ Health Care Achievement Awards. Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email rbj@rbj.net.

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