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Joint Position Statement of AAIDD and The Arc

Statement

Basic and applied research* on the causes, challenges and treatment of intellectual and developmental disabilities (IDD)**, as well as research on interventions and services which could improve the lives of people with IDD, 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.

Issue
Government and private funding is insufficient to support the broad research agenda that includes issues most important to people with IDD and their families. Through basic and applied research, scientists and researchers can learn about causes of IDD, address its preventable causes, improve the quality of life of people with IDD 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 IDD 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 IDD and their families.

Few groups are more vulnerable to potential exploitation in research than individuals with IDD. Without comprehensive, clear policies, standards and safeguards in place to protect them, people with IDD may be subject to exploitation and harm.

Postion
To make applied and basic research related to IDD 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 IDD 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 IDD 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 IDD and members of their families; and
  • For all basic and applied research involving persons with IDD:

          o Specific procedures must be implemented to ensure their full voluntary, informed, initial, and ongoing agreement
             to participate;
          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 IDD unless
             there is reasonable likelihood that the treatment would address unique IDD medical issues or apply differentially to  them; and
          o Persons with IDD 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 IDD 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).

Adopted:

Board of Directors, AAIDD 
July 18, 2010

Board of Directors, The Arc of the United States
August 23, 2010

Reviewed and extended without revision, 2015

* 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.

**

Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act,”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.