Resources

Administration for Community Living (ACL )

• Administration on Intellectual and Developmental Disabilities  - Developmental Disabilities Act Projects
  • University Centers of Excellence in Developmental Disabilities (UCEDD ), 
  • State Protection and Advocacy Systems ,
  • State Councils on Developmental Disabilities (DD Councils )
  • Projects of National Significance
• The Lifespan Respite Care Program  was authorized by Congress in 2006 with the intention of expanding respite services, improving coordination of and access to respite programs, and improving the quality of respite programs.

National Organizations Related to ACL Projects:

• Association of University Centers on Disabilities (AUCD ), the organization for University Centers of Excellence in Developmental Disabilities (UCEDD s), 
• National Disability Rights Network (NDRN ), the organization for State Protection and Advocacy Systems ,
• National Association of Councils on Developmental Disabilities (NACDD ), the organization for State Councils on Developmental Disabilities (DD Councils )
• Projects of National Significance include RISP, the State of the States in Developmental Disabilities (stateofthestates.org ), and Access to Integrated Employment (statedata.info ), and the National Core Indicators project.

Centers for Medicare and Medicaid Services (CMS )

• Medicaid
  • Long-Term Services and Supports (LTSS )
  • Home and Community Based Services (HCBS )
  • Managed Care Authorities

National Organizations related to Medicaid

• HCBS Advocacy Coalition , State and national resources

Resources for Families

• PACER's Fast Family Support  - Training materials for families and a report of the 2010 national survey of parents of transition-aged youth.
• The Beach Center  - The Beach Center on Disability, part of the University of Kansas, was founded in 1988 to "make a significant and sustainable difference in the quality of life for families and individuals affected by disabilities." The Beacn Center accomplishes it's mission through collboration with families, individuals with disabilities, community members, professionals and policy-makers to conduct research, provide training and technical assistance, and service locally, nationally, and international. See their website for a description of the current and past activities.
• Parent Center Network  - Parent Training and Information Centers and Community Parent Resource Centers are funded through the US Department of Education’s Office of Special Education Programs and provide technical training and assistance to families of people with disabilities (birth to age 26). Each state has at least one Parent Training and Information Center. 
• AARP's Research Issues & Topics related to Long-Term Care and Livable Communities often relates people of all ages who use supports and services.
• Siblings
  • Easterseals Sibling Study  looked at the experiences of sibling caregivers.

Resources for (and by) People with ID/DD

• Self-Advocacy Online  includes video stories from self advocates, information about self advocacy, and research for all
• Tuesdays with Liz , a weekly video series produced by AUCD and hosted by Liz Weintraub about current issues in disability policy.
• Self Advocates Becoming Empowered (SABE ). SABE's mission is to "To ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends, and to learn from their mistakes."