Parent and Professional Organizations

  • Claire O. Burns
  • Georgia Shaheen
  • Shelley R. Upton
Part of the Autism and Child Psychopathology Series book series (ACPS)


Family involvement has been a hallmark of the field of intellectual disabilities. Organizations such as ARC and other family-centered programs are important resources for parents and caregivers of individuals with disabilities. There are also a number of professional organizations for researchers and professionals. Community programs such as the Special Olympics and Best Buddies include parent and professional involvement as well as community volunteers. A history of the field and the development of some of these organizations is reviewed, along with a description of each organization and their functions.


Intellectual disability Parent organizations Professional organizations Community 


  1. AAIDD. (2018). Mission. Retrieved April 21, 2018, from
  2. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.Google Scholar
  3. ANCOR. (2018a). About ANCOR. Retrieved April 22, 2018, from
  4. ANCOR. (2018b). Advocacy. Retrieved April 22, 2018 from
  5. Angelman Syndrome Foundation (2018). Retrieved from
  6. AUCD. (2018). About Us. Retrieved April 22, 2018, from
  7. Berkowitz, E. D. (1980). The politics of mental retardation during the Kennedy administration. Social Science Quarterly, 61(1), 128–143.PubMedGoogle Scholar
  8. Best Buddies International. (2018). Best Buddies International. Retrieved May 19, 2018, from
  9. Dempsey, I., Keen, D., Pennell, D., O’Reilly, J., & Neilands, J. (2009). Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability. Research in Developmental Disabilities, 30(3), 558–566. Scholar
  10. Dykens, E. M., & Cohen, D. J. (1996). Effects of Special Olympics International on Social Competence in Persons with Mental Retardation. Journal of the American Academy of Child & Adolescent Psychiatry, 35(2), 223–229. Scholar
  11. Easterseals. (2018). Who We Are: The Story of the Easterseals. Retrieved from
  12. Families Affected by Fetal Alcohol Spectrum Disorder. (2018). Retrieved from
  13. 22q Family Foundation. (2018). Retrieved from
  14. Gibbons, S. L., & Byshakra, F. B. (1989). Effects of special olympics participation on the perceived competence and social acceptance of mentally retarded children. Adapted Physical Activity Quarterly, 6(1), 40–51. Scholar
  15. Harada, C. M., & Siperstein, G. N. (2009). The sport experience of athletes with intellectual disabilities: A national survey of special olympics athletes and their families. Adapted Physical Activity Quarterly, 26(1), 68–85. Scholar
  16. Hardman, M. L., & Clark, C. (2006). Promoting friendship through best buddies: A National Survey of College Program Participants. Mental Retardation, 44(1), 56–63.CrossRefGoogle Scholar
  17. Harris, J. C. (2013). New terminology for mental retardation in DSM-5 and ICD-11. Current Opinion in Psychiatry, 26(3), 260. Scholar
  18. John F. Kennedy Presidential Library and Museum (n.d.) John F. Kennedy and People with Intellectual Disabilities. Retrieved from
  19. NASDDDS. (2018). About - NASDDDS. Retrieved April 22, 2018, from
  20. National Alliance for Direct Support Professionals. (2018). What we are; Who we are; Our guiding principles; Our services; Other services we offer. Retrieved from
  21. National Association for Down Syndrome. (2018). Retrieved from
  22. National Down Syndrome Society. (2018). Retrieved from
  23. National Organization on Fetal Alcohol Syndrome. (2018). Retrieved from
  24. NIH. (2018). Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers (EKS-IDDRCs). Retrieved from
  25. Special Olympics. (2018). What We Do. Retrieved April 21, 2018, from
  26. TASH. (2018). About TASH. Retrieved from
  27. The Arc. (2011). Resources: Get to Know the Arc. Retrieved from
  28. The Arc. (2018a). History of the Arc. Retrieved from
  29. The Arc. (2018b). Programs & Services. Retrieved from
  30. The Arc. (2018c). Six Decades of Advocacy. Retrieved from
  31. The Arc. (2018d). Who we are. Retrieved from
  32. United Cerebral Palsy. (2018). Retrieved from
  33. VSA. (2018). About VSA. Retrieved from
  34. Weiss, J., Diamond, T., Demark, J., & Lovald, B. (2003). Involvement in Special Olympics and its relations to self-concept and actual competency in participants with developmental disabilities. Research in Developmental Disabilities, 24, 281–305.CrossRefGoogle Scholar
  35. Wright, J., & Cowden, J. E. (1986). Changes in self-concept and cardiovascular endurance of mentally retarded youths in a special olympics swim training program. Adapted Physical Activity Quarterly, 3(2), 177–183. Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Claire O. Burns
    • 1
  • Georgia Shaheen
    • 1
  • Shelley R. Upton
    • 1
  1. 1.Department of PsychologyLouisiana State UniversityBaton RougeUSA

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