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Joint Position Statement of AAIDD and the Arc

Statement

The nation must continue to investigate the causes, reduce the incidence and limit the consequences of intellectual and developmental disabilities (IDD)* through education, clinical and applied research, advocacy, and appropriate supports. Prevention activities do not diminish the value of any individual, but rather strive to maximize independence and enhance quality of life for people with IDD.

Issue
Knowledge about biomedical causes of disability, preventative healthcare options and the consequence of exposure to environmental hazards is increasing rapidly, yet practical application of this information is lacking. In addition, when individuals with IDD do not receive adequate therapies, education, healthcare, and access to assistive technology, preventable secondary conditions can occur. The incidence of conditions such as depression, obesity and related disease, is higher among people with IDD. These conditions are also associated with living or spending time in institutional and segregated environments.

Position
The nation must reduce the incidence and limit the consequences of IDD through prevention programs which must include:

  • Research into the causes of IDD;
  • Information and care before, during and following birth, including frequent physical/developmental checks, referral to community resources and genetic counseling if appropriate;
  • Programs to ensure that pregnant women, infants and children receive adequate nutrition;
  • Expansion of newborn screening and early childhood developmental screening programs to identify conditions that require specialized medical treatment at birth or soon after, and to provide for timely referral to early intervention services;
  • Immunizations of children for preventable contagious diseases that are associated with intellectual and/or developmental disabilities;
  • Programs to reduce the effects of poverty upon children's health and development;
  • Continued research into and application of promising interventions, best practices and community-based supports that maximize independence and enhance quality of life for individuals with intellectual and/or developmental disabilities;
  • Dissemination of knowledge about research-based best practices; and
  • Appropriate funding for interventions, preventative health care, therapies, educational services, community-based supports, and assistive technology to maximize independence and lessen the development of preventable secondary conditions.

Community awareness and advocacy must include:

  • Education of professionals and the public on the risks of prenatal and childhood exposure to agents that may harm brain development, such as alcohol, drugs, tobacco, bisphenol A(BPA) and environmental hazards such as lead and mercury. In addition, professionals, families and self-advocates should be made aware that individuals with intellectual and/or developmental disabilities who experience compromised health or limited access to healthcare may be uniquely vulnerable to environmental hazards;
  • Promotion of folic acid supplementation among women of child bearing age, with emphasis in communities where the incidence of neural tube defects is higher;
  • Efforts to prevent accidental childhood injuries, through programs to promote the use of car seats, seatbelts and bicycle helmets;
  • Programs and education to reduce the incidence of disabilities resulting from child abuse, particularly Shaken Baby Syndrome;
  • Proactive efforts to prevent health disparities and the development of secondary conditions in persons with intellectual and/or developmental disabilities;
  • Elimination of and protection against environmental hazards known to cause or contribute to IDD, such as lead and mercury; and
  • Enforcement of existing public policy designed to prevent IDD.

Adopted:

Board of Directors, AAIDD 
July 18, 2010

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

*
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.