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Research Participation and People with Intellectual and Developmental Disabilities. Sue Swenson [email protected] October 28, 2008. Like All Others: People with Intellectual and Developmental Disabilities. May over- or under-estimate risk Have rights Civil Individual and institutional - PowerPoint PPT Presentation
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Research Participation and Research Participation and People with Intellectual and People with Intellectual and Developmental DisabilitiesDevelopmental Disabilities
Sue SwensonSue Swenson
[email protected]@gmail.com
October 28, 2008October 28, 2008
Like All Others: People with Intellectual Like All Others: People with Intellectual and Developmental Disabilitiesand Developmental Disabilities
May over- or under-estimate riskMay over- or under-estimate risk Have rightsHave rights
CivilCivil• Individual and institutionalIndividual and institutional
HumanHuman• Cultural Cultural
Deserve and require accommodationsDeserve and require accommodations
US Disability PolicyUS 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
Four Interpretations of Four Interpretations of DisabilityDisability
MedicalMedical Diagnose, cure, ameliorateDiagnose, cure, ameliorate
RehabRehab Assess, accommodate, supportAssess, accommodate, support
RightsRights Empowerment, organizationEmpowerment, organization
SocietalSocietal Universal design, dialecticUniversal design, dialectic
SIIDR Recommendations: SIIDR Recommendations: CommentsComments
Recommendation 1Recommendation 1. . Discussions of “consent capacity” should consider, Discussions of “consent capacity” should consider,
support, document and periodically review how a support, document and periodically review how a person’s decision-making and participation are person’s decision-making and participation are accommodated. accommodated.
Guidance should address the concepts of Guidance should address the concepts of supported decision-making, supported supported decision-making, supported participation and the general impact of support in participation and the general impact of support in the life of a person with intellectual or the life of a person with intellectual or developmental disability.developmental disability.
SIIDR Recommendations: SIIDR Recommendations: CommentsComments
Recommendation 2.Recommendation 2.
Guidance should provide information on Guidance should provide information on inclusion of people with intellectual, inclusion of people with intellectual, developmental and other disabilities and developmental and other disabilities and their advocates on IRBs.their advocates on IRBs.
. .
SIIDR Recommendations: SIIDR Recommendations: CommentsComments
Recommendation 3.Recommendation 3.
Guidance should address the evolving Guidance should address the evolving contributions of communications contributions of communications technology. technology.
SIIDR Recommendations: SIIDR Recommendations: CommentsComments
Recommendation 4.Recommendation 4.
People with disabilities should be able to People with disabilities should be able to participate in research that is specific to participate in research that is specific to their primary disability as well as specific their primary disability as well as specific to other health concerns. to other health concerns.
SIIDR Recommendations: SIIDR Recommendations: CommentsComments
Recommendation 5.Recommendation 5.
Guidance should help IRBs consider training Guidance should help IRBs consider training of potential participants and their of potential participants and their supporters as an adjunct to recruitment to supporters as an adjunct to recruitment to serve in studies and boards.serve in studies and boards.
Recommended references on Recommended references on supported decision-makingsupported decision-making
Convention on the Rights of Persons with Convention on the Rights of Persons with Disabilities (UN), Article 12Disabilities (UN), Article 12
Montreal Declaration on Intellectual Montreal Declaration on Intellectual Disability (PAHO/WHO), Article 6Disability (PAHO/WHO), Article 6
Developmental Disabilities Act (Oct. 2000)Developmental Disabilities Act (Oct. 2000)
