Skip Navigation LinksStakeholder-and-Constituent-Organizations

Stakeholder and Constituent Organizations

Elected Officials

National Governors Association (NGA)
http://www.nga.org

NGA is the bipartisan voice of the nation's governors. It represents states on Capitol Hill and before the Administration on key federal issues. It also supports Governors and their staff senior by developing policy reports and hosting networking seminars for them. The NGA Center fr Best Practices focuses on state innovations and best practices on issues that range from education and health to technology, welfare reform, and the environment.  

National Conference of State Legislatures (NCSL)
http://www.ncsl.org

NCSL is a bipartisan organization that serves the legislators and staffs of the nation's 50 states, its commonwealths and territories. NCSL provides research, technical assistance and opportunities for policymakers to exchange ideas on the most pressing state issues.

National Association of Counties (NACo)
http://www.naco.org

NACo represents county governments on Capitol Hill and works to improve public understanding of county government and to help counties find and share innovative solutions through education and research. Its membership represents over 80 percent of the nation's population.  County governments implement many programs for people with intellectual and developmental disabilities.

National League of Cities (NLC)
http://www.nlc.org

NLC is the oldest and largest national organization representing municipal governments.  It works with a network of state municipal leagues and members to advocate through full-time lobbying and grassroots campaigns; to keep leaders informed of critical issues that affect municipalities; and to promote examples of best practices and model programs and initiatives in cities and towns.  

U.S. Conference of Mayors (USCM)
http://www.usmayors.org

USCM is the official nonpartisan organization of cities with populations of 30,000 or more of which there are over 1,100. Each city is represented in the Conference by its chief elected official, the mayor. Its primary roles are to help develop effective national urban/suburban policy; strengthen federal-city relationships; ensure that federal policy meets urban needs; and create a forum to share ideas and information.

Professional Associations

American Association on Intellectual and Developmental Disabilities (AAIDD)
http://aaidd.org

AAIDD (formerly AAMR) is the oldest and largest interdisciplinary organization of professionals (and others) concerned about intellectual and developmental disabilities. It promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.  AAIDD publishes the authoritative definition for “intellectual disability,” the currently preferred term for the disability historically referred to as “mental retardation.”

American Occupational Therapy Association (AOTA)
http://www.aota.org

AOTA is a national professional association representing more than 40,000 occupational therapists, occupational therapy assistants, and students of occupational therapy.

The American Physical Therapy Association (APTA)
http://www.apta.org

APTA is a national professional organization representing more than 72,000 members to foster advancements in physical therapy practice, research, and education.

American Psychological Association (APA)
http://www.apa.org

APA is a scientific and professional organization that represents approximately 148,000 members.

American Speech-Language-Hearing Association (ASHA)
http://www.asha.org

An association that provides information on legislative activities, conferences, reports relating to audiology, speech-language pathology and speech and hearing science.

Association of Assistive Technology Act Programs (ATAP)
http://www.ataporg.org

ATAP represents the needs and interests of the state AT Programs and is the national voice of the AT Programs. Under a cooperative agreement with RSA, ATAP established the National Information System for Assistive Technology (NISAT) to meet the data collection and reporting requirements under the AT Act. The NISAT web site can be accessed through the ATAP web site or directly through this link http://nisat.geminisbs.com/index.php/page/home. The ATAP site has a listing of laws and regulations pertinent to AT including some listings identifying the sections of the law or regulations specifically addressing AT - http://www.ataporg.org/atap/legislative?id=laws_regs.

Council for Exceptional Children (CEC)
http://www.cec.sped.org

The largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or gifted students.

Trade Associations  

American Network of Community Options and Resources (ANCOR)
http://www.ancor.org

ANCOR is a nonprofit trade association representing and advocating on behalf of the more than 800 private providers of services and supports for 385,000 Americans with disabilities in 49 states and Washington, D.C.

Association of University Centers on Disabilities (AUCD)
http://aucd.org

AUCD is a national, non-profit membership organization that supports a national network of interdisciplinary centers advancing policy and practices through research, education and services for and with individuals with developmental and other disabilities, their families, and communities. Its network represents every state and most territories and over 100 universities and medical schools. 

Council of State Administrators (CSVAR)
http://www.rehabnetwork.org

CSVAR is composed of the chief administrators of the public rehabilitation agencies serving individuals with physical and mental disabilities in the States, District of Columbia, and the territories. These agencies are the state partners in the State-Federal program of rehabilitation services authorized by the Rehabilitation Act of 1973, as amended. The Council's members supervise the rehabilitation of some 1.2 million persons with disabilities.

National Alliance for Direct Support Professionals (NASDSP)
http://www.nadsp.org

NADSP is a coalition of organizations and individuals committed to strengthening the quality of human service support by strengthening the direct support workforce. The group has representatives from the fields of mental health, developmental disabilities, child welfare, education, and many others in the human services community. It has a national agenda to address conditions chronicled for 25 years that are harmful to people who rely on human services.

National Association of Councils on Developmental Disabilities (NACDD)
http://www.nacdd.org/index.html

NACDD is a national, member-driven organization consisting of 55 State and Territorial Councils. It advocates for positive system change on behalf of individuals with developmental disabilities and their families.

National Association of State Directors of Developmental Disabilities Services (NASDDDS)    
http://www.nasddds.org/index.shtml

NASDDS is the nonprofit trade association for state agencies that provide services and supports for individuals with intellectual and development disabilities. It provides member state agencies with analyses of federal statutory and regulatory policies that affect people with disabilities; shares information on service delivery practices; and works to develop state and national policy initiatives.
 
National Association of State Directors of Special Education (NASDSE)
http://www.nasdse.org

NASDE supports the states and territories in their delivery of education to children and youth with disabilities through training, technical assistance, research, policy development and program initiatives.

National Disability Rights Network (NDRN)
http://www.ndrn.org

NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. NDRN provides training and technical assistance, legal support, and legislative advocacy, for a wide range of individuals with disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities.

Advocacy Organizations for Individuals with Intellectual Disabilities 

Alliance for Full Participation (AFP)
http://www.allianceforfullparticipation.org

AFP is a formal partnership of leading organizations serving the developmental disabilities field that share a common vision- to help create a better and more fulfilling quality of life for people with developmental disabilities. It held a Summit in 2005 and is working on another Summit for 2011.

The Arc of the United States
http://www.thearc.org

The Arc provides an array of services and support for families and people with intellectual and developmental disabilities. Its national office and more than 850 state and local chapters across the nation work to promote and improve supports and services for all people with intellectual and developmental disabilities. It is a partner with UCP in the Disability Policy Collaboration, based in Washington. 

Autism Society of America (ASA)
http://www.autism-society.org

ASA, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

Autism Speaks
http://www.autismspeaks.org

Founded in 2005, Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. It works to raise the funds necessary to support these goals.

Coleman Institute: State of the States in Developmental Disabilities https://www.cu.edu/ColemanInstitute/stateofthestates/aboutSOS.html

Established in 1982 to investigate the determinants of public spending for intellectual/developmental disabilities (I/DD) services in the United States, the project maintains a 28-year longitudinal record of revenue, spending, and programmatic trends in the 50 states, the District of Columbia, and the United States as a whole.

Council on Quality and Leadership (CQL)
http://www.thecouncil.org

CQL works to inspire quality and excellence in the individuals, organizations and systems that serve people with intellectual disabilities and people with mental illness.

Epilepsy Foundation (EF)
http://www.epilepsyfoundation.org

EF is the national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the U.S. and their families. It works to ensure that people with seizures are able to participate in all life experiences and to promote research for a cure. In addition to its national programs, there are more than 50 EF affiliates around the country.

National Down Syndrome Congress (NDSC)
http://www.ndsccenter.org

NDSC is a not-for-profit organization governed by a 22 member Board of Directors composed of parents and family members of individuals with Down syndrome, self-advocates and other concerned individuals.  It works to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information dissemination on all aspects of Down syndrome.

National Down Syndrome Society (NDSS)
http://www.NDSS.org

NDSS works to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. It has a National Policy Center in Washington that works with Congress and educates parents and self-advocates to advocate on the local, state, and national levels on key issues across the lifespan of individuals with Down syndrome and other intellectual disabilities. 

National Leadership Consortium on Developmental Disabilities
http://www.nlcdd.org

The Leadership Consortium was established at the University of Delaware to support the next generation of leaders in the field of intellectual and developmental disabilities. It works in partnership with major national organizations to offer a variety of intensive leadership development experiences, undergraduate and graduate programs, distance learning opportunities, mentoring opportunities and research and technical assistance.

Self-Advocates Becoming Empowered (SABE) 
http://www.sabeusa.org

SABE’s mission is 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.

United Cerebral Palsy
http://www.ucpa.org

UCP has a national office to support its affiliates through fundraising, marketing, communications, best practices, and programmatic support.  The national network of affiliates serves more than 170,000 children and adults with disabilities and their families every day. UCP is a partner with The Arc in the Disability Policy Collaboration, based in Washington. 

Other Disability Advocacy Organizations 

American Association of People with Disabilities (AAPD)
http://www.aapd.com/index.php

AAPD is a national nonprofit cross-disability member organization that works to ensure economic self-sufficiency and political empowerment for Americans with disabilities. AAPD works with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act and the Rehabilitation Act.

The Bazelon Center for Mental Health Law
http://www.bazelon.org

The Bazelon Center for Mental Health Law was founded in 1972 by a group of committed lawyers and professionals in mental health and intellectual disability. Bazelon has led the way in efforts to define and advance the rights of people with mental disabilities in a number of areas, including the right to treatment, services in the most integrated setting, living in the community, education, and federal entitlements.

Consortium for Citizens with Disabilities (CCD)
http://www.c-c-d.org/index.htm

CCD is a coalition of national consumer, advocacy, provider and professional organizations headquartered in Washington, D.C. Since 1973, the CCD has advocated on behalf of people of all ages with physical and mental disabilities and their families. CCD has worked to achieve federal legislation and regulations that assure that the 54 million children and adults with disabilities are fully integrated into the mainstream of society.  It conducts its work by identifying and researching public policy issues; developing testimony and policy recommendations;  educating members of Congress effort to improve public policies and programs that foster independence, productivity, integration and inclusion of people with disabilities; and encouraging people with disabilities and their families to advocate for themselves and coordinating grass roots efforts to support their efforts.

Posted on the CCD website, listed above, is the full list of Task Forces that implement its public policy work. The co-chairs of each Task Force also appear on this site along with an alphabetical listing of all CCD members with links to their individual web sites.  

The CCD Task Forces prepared a transition document for the new Administration elected in November 2008 and it appears on the CCD web site as well.  

National Organization on Disability (NOD)
http://www.nod.org/

NOD works in partnership with businesses, government, national philanthropies and local organizations to promote the inclusion of people with disabilities in American society. Its goal is to raise awareness through programs and information to close participation gaps for children and adults with disabilities. It sponsors a number of programs, described on its website, including work with the Harris Poll to provide timely survey research data on the participation of people with disabilities in American life. See its website for easy access to an assortment of other disability-related surveys and studies.

Service Organizations for Individuals with Intellectual Disabilities

Best Buddies
http://www.bestbuddies.org

Best Buddies is a nonprofit 501(c) (3) organization dedicated to enhancing the lives of people with intellectual disabilities by providing opportunities for one-to-one friendships and integrated employment. Founded in 1989 by Anthony Kennedy Shriver, Best Buddies is a vibrant, international organization that has grown from one original chapter to more than 1,300 middle school, high school, and college campuses across the country and internationally.

Special Olympics
http://www.specialolympics.org
Special Olympics is an international nonprofit organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition. Special Olympics programs offer children and adults with intellectual disabilities year-round training and competition in 30 Olympic-type summer and winter sports. It currently serves 2.5 million people with intellectual disabilities in more than 200 Programs in over 180 countries.