ISSUE

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.

POSITION

To make applied and basic research related to intellectual and/or developmental disabilities a national priority, the following must occur:

• Government and private entities must provide adequate funding to support research;
• Advocacy, service provider and professional organizations, government agencies, the research community, and people with intellectual and/or developmental disabilities and their families must work together in defining, evaluating, and promoting a research agenda;
• Results of research must be available in multiple formats, easily accessible and understandable for a wide audience, including people with intellectual and/or developmental disabilities and their families;
• Stringent scientific and ethical standards must be enforced to ensure efficient and effective use of limited research funds and to prevent exploitation or harm of people with intellectual and/or developmental disabilities and members of their families; and
• For all basic and applied research involving persons with intellectual and/or developmental disabilities:
  • Specific procedures must be implemented to ensure their full voluntary, informed, initial, and ongoing agreement to participate;
  • 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;
  • 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
  • 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).

Rev’d 2015
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

¹Basic 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 disability 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.