Basic and applied research (1) on the causes, challenges and treatment of intellectual and developmental disabilities(2), as well as research on interventions and services which could improve the lives of people with intellectual and/or developmental disabilities, must be adequately financed, well designed, focused on relevant topics, conducted with the highest ethical standards, presented in formats accessible to multiple audiences, and have a positive impact on people’s lives.
Government and private funding is insufficient to support the broad research agenda that includes issues most important to people with intellectual and/or developmental disabilities and their families. Through basic and applied research, scientists and researchers can learn about causes of intellectual and/or developmental disabilities, address its preventable causes, improve the quality of life of people with intellectual and/or developmental disabilities and their families, and address policy and service-delivery enhancements. Researchers can identify the most promising educational, social and clinical interventions that help people live meaningful lives.
Historically, most people with intellectual and/or developmental disabilities and their families have not had input into the design, methodology, dissemination, use, and evaluation of research. Moreover, most research results have not been presented in ways which are accessible, understandable and useful for multiple audiences, including people with intellectual and/or developmental disabilities and their families.
Few groups are more vulnerable to potential exploitation in research than individuals with intellectual and/or developmental disabilities. Without comprehensive, clear policies, standards and safeguards in place to protect them, people with intellectual and/or developmental disabilities may be subject to exploitation and harm.
To make applied and basic research related to intellectual and/or developmental disabilities a national priority, the following must occur:
o Specific procedures must be implemented to ensure their full voluntary, informed, initial, and ongoing agreement
o All research must be conducted by qualified researchers, in adequately monitored settings and reviewed for
potential risk and benefit by qualified, competent scientific review boards;
o No research may be conducted exclusively on persons with intellectual and/or developmental disabilities unless
there is reasonable likelihood that the treatment would address unique intellectual and/or
developmental disabilities medical issues or apply differentially to them; and
o Persons with intellectual and/or developmental disabilities should not be excluded from research that might benefit
them as members of the general population.
Entities involved in conducting and financing basic and applied research should ensure that policies and standards with specific guidelines and safeguards are in effect to protect persons with intellectual and/or developmental disabilities and their families.
The Arc and AAIDD are committed to identifying and promoting research-based best practices, setting high standards for direct services and measuring outcomes across all three levels of the organization (local, state and national).
Board of Directors, AAIDD
July 18, 2010
Board of Directors, The Arc of the United States
August 23, 2010
1 Basic research refers to the study and research of pure science that is meant to increase the scientific knowledge base. Applied research refers to scientific study and research that seeks to solve practical problems and develop innovative approaches.
2 “People with intellectual disabilities and/or developmental disabilities” refers to those defined by AAIDD classification and DSM IV. In everyday language they are frequently referred to as people with cognitive,
intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.