1. Research Participation and People with Intellectual and Developmental Disabilities Sue Swenson sue.swenson@gmail.com October 28, 2008

2. Like All Others: People with Intellectual and Developmental Disabilities  May over- or under-estimate risk  Have rights Civil Civil Individual and institutionalIndividual and institutional Human Human CulturalCultural  Deserve and require accommodations

3. US Disability Policy Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society. -- DD Act PL 106-402, Oct. 30, 2000

4. Four Interpretations of Disability  Medical Diagnose, cure, ameliorate Diagnose, cure, ameliorate  Rehab Assess, accommodate, support Assess, accommodate, support  Rights Empowerment, organization Empowerment, organization  Societal Universal design, dialectic Universal design, dialectic

5. SIIDR Recommendations: Comments Recommendation 1. Recommendation 1. Discussions of “consent capacity” should consider, support, document and periodically review how a person’s decision-making and participation are accommodated. Guidance should address the concepts of supported decision-making, supported participation and the general impact of support in the life of a person with intellectual or developmental disability.

6. SIIDR Recommendations: Comments Recommendation 2. Guidance should provide information on inclusion of people with intellectual, developmental and other disabilities and their advocates on IRBs..

7. SIIDR Recommendations: Comments Recommendation 3. Guidance should address the evolving contributions of communications technology.

8. SIIDR Recommendations: Comments Recommendation 4. People with disabilities should be able to participate in research that is specific to their primary disability as well as specific to other health concerns.

9. SIIDR Recommendations: Comments Recommendation 5. Guidance should help IRBs consider training of potential participants and their supporters as an adjunct to recruitment to serve in studies and boards.

10. Recommended references on supported decision-making  Convention on the Rights of Persons with Disabilities (UN), Article 12  Montreal Declaration on Intellectual Disability (PAHO/WHO), Article 6  Developmental Disabilities Act (Oct. 2000)