Intellectual and Developmental Disabilities (IDDs) Resources

General Information

• Centers for Disease Control and Prevention
  • National Center on Birth Defects and Developmental Disabilities
  • What Are Developmental Disabilities?
  • Kids’ Quest: On Disability and Health
• American Academy of Pediatrics: Children with Intellectual Disabilities
• Medline Plus, Birth Defects
• U.S. Department of Education: Individuals with Disabilities Education Act (IDEA)
• Equal Employment Opportunity Commission: Questions & Answers About Persons with Intellectual Disabilities in the Workplace and the Americans with Disabilities Act
• National Dissemination Center for Children with Disabilities: IDEA-the Individuals with Disabilities Education Act

Services, Resources, and Support

• Safe Return to School For All summarizes current evidence and best practices to help administrators, educators, and families and students—including students with disabilities—return to school safely in the context of COVID-19. The information provided is based on collaborative research from the NICHD-funded Washington University Intellectual and Developmental Disabilities Research Center, the University of Missouri-Kansas City Institute of Human Development, and the Kennedy Krieger Institute (Maryland), in collaboration with the Special School District of St. Louis County, Missouri.
• Association of University Centers on Disabilities : This organization provides support services, education, and service activities for families and their loved ones affected by developmental and other disabilities.
• HHS, Administration on Disabilities strives to ensure that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent and needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.
• The Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities (NCBDDD): This center was established in 2001 following the passage of The Children’s Health Act of 2000. It measures the incidence and prevalence of congenital anomalies and developmental disabilities in the U.S. population and disseminates related health information.
• The Arc is a reference website supporting families and their loved ones affected by intellectual and developmental disabilities.
• The March of Dimes is an informative resource on child health and welfare.
• The American Speech-Language-Hearing Association supports and promotes speech, language, and hearing programs and initiatives.
• NIH, Office of Rare Diseases Research, provides research information as well as links to patient advocacy groups for rare diseases.
• Special Olympics : This organization supports and promotes athletic activities among those with congenital anomalies and intellectual disabilities and disorders.
• Genetic Alliance : This group provides information and support for those affected by genetic diseases and conditions.
• Office of Disability Employment Policy: This website provides resources and other information on disabilities and other conditions, including information about programs that help support people with these conditions.
• National Organization for Rare Disorders : This federation of voluntary health organizations provides information, resources, and other information on rare disorders.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

• NICHD
  • Autism Centers of Excellence (ACE) Program
  • Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (EKSIDDRCs)
  • Centers for Collaborative Research in Fragile X Syndrome and FMR1-related Conditions
  • Paul D. Wellstone Muscular Dystrophy Specialized Research Centers (MDSRCs)
  • Rare Diseases Clinical Research Consortia Supported by NICHD
• HHS Administration on Intellectual and Developmental Disabilities: https://acl.gov/about-acl/administration-disabilities
• Centers for Disease Control and Prevention: National Center on Birth Defects and Developmental Disabilities: Supports research and data collection on congenital anomalies and developmental disabilities.
  • Autism and Developmental Disabilities Monitoring (ADDM) Network
  • Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE)
  • Study to Explore Early Development (SEED)
  • Research and Tracking Birth Defects
  • Research on Developmental Disabilities
  • Monitoring Developmental Disabilities
• American Association on Intellectual and Developmental Disabilities (AAIDD) : Professional society on intellectual and developmental disabilities geared toward researchers and healthcare providers.
  • American Journal on Intellectual and Developmental Disabilities
  • Intellectual and Developmental Disabilities
• Association of University Centers on Disabilities : This organization supports research on many different types of developmental disorders.
  • University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD)
  • Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
  • Intellectual and Developmental Disabilities Research Centers (IDDRCs)
• American Speech-Language-Hearing Association : This organization supports and promotes research on speech, language, and hearing.
  • Research
  • Publications
• American Psychological Association: Intellectual and Developmental Disabilities (IDDs) : Supports research and other interest areas in IDDs.
• Journal of Intellectual Disability Research : This journal publishes research papers, review articles, and commentary on research in intellectual disabilities.
• World Health Organization (WHO):
  • "Global Resources for Persons with Intellectual Disabilities" (2007) (PDF 5.59 MB)
  • "World Report on Disability" (2011) (PDF 10.44 MB)
• NIH, Office of Rare Diseases Research: This office provides research information and links to patient advocacy groups for rare diseases.

Selected Publications for Researchers

• Trends in the use of standardized tools for developmental screening in early childhood: 2002-2009.
  Radecki, L., Sand-Loud, N., O'Connor, K. G., Sharp, S., & Olson, L. M. (2011). Trends in the use of standardized tools for developmental screening in early childhood: 2002-2009. Pediatrics, 128, 14-19. PMID: 21708798
• Aging adults with intellectual disabilities
  Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities. Journal of the American Medical Association, 304, 91-92. PMID: 20606156
• The renaming of mental retardation: Understanding the change to the term intellectual disability.
  Schalock, R. L., Luckasson, R. A., Shogren, K. A., Borthwick-Duffy, S., Bradley, V., Buntinx, W. H., et al. (2007). The renaming of mental retardation: Understanding the change to the term intellectual disability. Intellectual and Developmental Disabilities, 45, 116-124. PMID: 17428134

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.