ITHACA - Adult siblings of people with developmental disabilities are invited to participate in a statewide survey funded by the New York State Developmental Disabilities Planning Council to help state policymakers and agencies learn more about their needs.
The survey is anonymous and open to any adult who has a brother or sister with developmental disabilities who lives in New York. Siblings filling out the survey can be from any locale.
Nancy Hinkley, a Cornell Cooperative Extension associate at the Employment and Disability Institute of Cornell's ILR School, is leading implementation of the survey. Survey findings will be reported, and recommendations issued, in the summer.
"People with disabilities now often outlive their parents due to health care advances. 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, as they increasingly consider responsibilities for brothers and sisters," Hinkley said. "We need more research regarding the supports and services these adult siblings need."
The survey results will help identify what supports siblings need to care for their developmentally disabled siblings while balancing their own work-life needs. The data will also guide state policymakers and agencies who want to offer training and other resources to adult siblings of persons with developmental disabilities.
The survey continues through Dec. 31 and is available online at: www.nyssibsurvey.org.