1. Caregiving, Services, and Advocacy Among Siblings of Individuals with Disabilities
Recommendations for new directions in sibling research
AAIDD Annual Meeting
June 2, 2015
John Kramer, PhD
Institute for Community Inclusion, University of Massachusetts Boston
Ariella Meltzer
Social Policy Research Centre, UNSW Australia
Brief summary of where we are nationally
We have challenges at three levels:
Systems that establish a priority for employment
Organizations that get there
Supports that are innovative, flexible, and creative

2. Today! What is sibling research? What does it do?
What are some problems with the state of the knowledge?
What are some new approaches that might help people with I/DD and their families?

3. Sibling disability research
study of siblings where one has a disability
impact of disability on the psychology of siblings of people with disabilities
Highly individualized experience, outcomes

4. How did we get here
During institutionalization, psychologists used siblings as one of the justifications for segregated settings
Now researchers want to know the impact that they themselves warned about…
Contemporary research framings reflect the history of de/institutionalization

5. Two problems with the knowledge
Voices of people with disabilities are excluded
Failure to assess/understand impacts of policy/structures/environments on the changing family structures, including siblings, of people with I/DD

6. Expanding the knowledge base
One option is studying the impact of structural and economic policy on individuals and families

7. Key questions to ponder
Problem – siblings are worried about the costs associated with supporting themselves, their siblings as they age, so…
The impact of economic participation on sibling relationships
Employment
Reliance on government benefits

8. Approach 1: Siblings and employment
Online asynchronous focus groups
Findings
Employment leads to better quality of life
Siblings emphasized the importance of being abilities-based
Siblings developed expertise in employment as a result of being a sibling
Siblings mobilized this expertise to support their brother or sister’s employment efforts

9. Approach 2: Knowledge translation of employment
Currently underway…
Focusing on the knowledge barriers preventing individuals with I/DD from full potential
Where do people get information from?
How can we streamline and improve systems to get people with I/DD and siblings what they want/need?

11. John Kramer Ariella Meltzer
(617)
Ariella Meltzer
(612)
Portions of this presentation were developed under a grant from the Department of Education, NIDRR grant number H133B and National Institute on Disability and Rehabilitation Research, Grant #H133F Mary E. Switzer Research Fellowship. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government