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Advocating for individuals with intellectual and developmental disabilities

Roundtable on long term planning for individuals with intellectual and developmental disabilities
Assemblymember Sarah Clark
State officials visit Rochester on Tuesday, Aug. 30, for a roundtable discussion with individuals advocating for people with intellectual and developmental disabilities.

The issues surrounding long-term planning for people with intellectual and developmental disabilities were the focus of a roundtable held Tuesday with a state official in Rochester.

The event, held at a Rochester Regional Health training center, was hosted by local Assemblymembers Sarah Clark and Jen Lunsford, and it included participation by Kerri Neifeld, who is the commissioner for the New York State Office for People with Developmental Disabilities.

Among other topics, Neifeld talked about her agency’s emphasis on fostering inclusivity and diversity in the way that they provide services.

“Formalizing that work through bringing on a formal chief diversity officer who will be leading our efforts, but also thinking about it from linguistic competence,” Neifeld said. “And do we have language access? We say we have language access, what does that actually look like for the people who need that access? And wanting to understand, so it’s really important to hear your stories about access.”

Neifeld also talked about the need for the state agency to understand issues surrounding the cultural framework that various families are coming from so that it can do a better job of reaching out to people.

Kim Dooher, the parent of a 6-year-old child with intellectual and developmental disabilities, said that her family is concerned what will happen to her daughter when her parents are gone.

“Will she be supported as a valued, contributing member of our community?" Dooher asked. "Will she have safe and secure program opportunities, employment and housing?”

Dooher said that advocates on this issue strongly urge lawmakers to work with them to ensure the funding needed to recruit and retain direct support professionals.

Randy Gorbman is WXXI's director of news and public affairs. Randy manages the day-to-day operations of WXXI News on radio, television, and online.