Recommendations for Research, Advocacy and Supports Relating to Siblings of People with Developmental Disabilities (2008). Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J. & Dufresne, D.
This white paper was developed by The Sibling Leadership Network (SLN), a national organization that provides adult siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. The SLN was founded by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, the Nisonger Center at The Ohio State University, the Sibling Support Project, and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.
A Community Coming Together to Support Children and Adults with Developmental Disabilities and Their Families: Project for Family Support 360 Final Report (2007). Heller,T., Connolly, K. & Lacey, B. Chicago: Institute on Disability and Human Development, University of Illinois at Chicago.
This report describes the development and outcomes of a one-stop center that meets the information and support needs of unserved and under-served Chicago area Latino families of children and adults with developmental disabilities. The center is a unique family driven model that demonstrates how advocacy training enabled these families to obtain long-term funding to sustain the center’s operations. This report is available in English and Spanish.
Sibling Leadership Network Update (2007), Kramer, J., & Heller, T.
Highlights of the RRTCADD’s first Sibling Leadership Conference for siblings of people with disabilities held on November 9-10, 2007 at Washington, D.C. The conference featured over 80 brothers and sisters of individuals with intellectual disabilities.
Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning (2006). Kramer, J. & Heller, T.
Little is known about the role adult siblings play in planning for the future care of their sibling with a developmental disability. This research brief presents the results of a sibling survey to find out the extent siblings are involved in future planning and designated as the future caregiver, the resources they need to assume these responsibilities, and their concerns for the future.
Use of State Institutions for People with Intellectual Disabilities in Illinois (2006). Nelis, T. & Rizzolo, M.
This brief describes residential services in Illinois. It reports the number of people with I/DD in different types of residential settings and compares the cost of institutional care to living in small homes in the community.
RRTCADD Disability Research Brief: Body Weight Status of Adults with Intellectual Disabilities (2006). Yamaki, K., Heller, T. & Rimmer, J.
This brief compares the rates of obesity between adults with and without I/DD from 1985 to 2000. It is based on an analysis of the National Health Interview Surveys.
Can be downloaded at no charge (doc file) (pdf)
Sibling Connections Newsletter (Fall 2005). Kramer, J. & Heller, T. RRTC on Aging with Developmental Disabilities.
Highlights of the RRTCADD’s first conference for siblings of people with disabilities held on October 29-30, 2004. The conference featured nationally known experts on the lifelong relationships of people with disabilities and their siblings and also provided siblings the chance to hear local experts in the field of disability and the opportunity to network with each other.
Information About Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project) (2005). Janicki, M., Dalton, A., McCallion, P., Baxley, D., & Zendell, A.
A preliminary report about the NIDRR funded research project on how community agencies adapt their services for adults with intellectual disabilities.
Healthy Aging and Community Participation: National Goals, Current Knowledge, and Future Research (2005). Heller, T., Janicki, M. & Hawkins, B. In K. C. Lakin, & A. Turnbull (Eds.), National Goals and Research for Persons With Intellectual and Developmental Disabilities (pp 311-322). Washington, DC: American Association on Mental Retardation.
Aging with a Developmental Disability: 2005 White House Conference on Aging Listening Session Testimony (2005). Factor, A.
This brief identifies the issues that aging adults with I/DD and their families face, indicating why their service and support needs should be included in the 2005 White House Conference on Aging Agenda.