Cornell University

July 27 2012

What Brothers, Sisters Need

Research "will help build our inclusive communities," Hinkley says

Adult siblings of people with developmental disabilities are invited to participate in a statewide survey led by the Employment and Disability Institute and opening Aug. 1.

People with disabilities now often outlive their parents due to health care advances, said Nancy Edminster Hinkley, the project's principal investigator. In addition, the current economic climate is restricting growth of some public services for people with disabilities.

"This combination may put siblings in a different position than in previous generations," she said, as they increasingly consider responsibilities for brothers and sisters.

Approximately 100,000 to 120,000 persons with developmental disabilities reside in New York state, according to estimates provided by William Erickson, EDI research specialist.

Survey results will help identify adult siblings' current knowledge of supports and what supports they need to have caring, supportive sibling relationships while balancing their own work-life needs, Hinkley said.

"This research will help build our inclusive communities. Right now, we don't know much about what siblings need and how resources should be delivered to them."

Data will also guide state policymakers and agencies who want to offer training and other resources to adult siblings of persons with developmental disabilities, she said. Also, siblings who participate in the survey will be informed about existing online support networks for siblings.

The New York State Sibling Needs Assessment Survey can be accessed through Dec. 31 at www.nyssibsurvey.org. People without Internet access can call 607-255-1109. Information is also available on Facebook @NYSSibSurvey.

By the summer of 2013, survey findings will be reported and recommendations issued. Sarah von Schrader, assistant director of research at the Employment and Disability Institute, is assisting Hinkley with the survey analysis.

The survey is sponsored by the New York State Developmental Disabilities Planning Council, a federally-funded state agency. The Advocacy Center, based in Rochester, is a survey partner.

People ages 18 and older who have siblings with developmental disabilities who live in New York state are invited to participate in the survey, which takes about 15 minutes to complete.

Participants can remain anonymous or can identify themselves in order to receive information about existing sibling organizations and new resources.

"We want to include as many siblings as possible. Siblings of persons with developmental disabilities are as diverse as the general population of New York state and we want the survey results to capture that diversity," Hinkley said.

Hinkley is urging people to share the outreach flyer in their communities and workplaces. The flyer can be found www.nyssibsurvey.org.