U.S. Department of Health and Human Services

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Developmental Disabilities

Administration for Children and Families, U.S. Department of Health and Human Services

The Administration for Children and Families (ACF) is a federal agency funding state, territory, local, and tribal organizations to provide family assistance (welfare), child support, child care, Head Start, child welfare, and other programs relating to children and families. Actual services are provided by state, county, city and tribal governments, and public and private local agencies. ACF assists these organizations through funding, policy direction, and information services.

Review Date: June 22, 2011

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Administration on Developmental Disabilities

The Administration on Developmental Disabilities (ADD) ensures that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promotes independence, productivity, and integration and inclusion into the community. ADD does not provide direct consumer support or financial assistance. ADD provides funding, monitoring, and policy guidance to it's programs Nationwide. To obtain services, contact the program offices in your state.

Review Date: June 22, 2011

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Disability and Health Programs, National Center on Birth Defects and Developmental Disabilities/CDC

Working within CDC's National Center on Birth Defects and Developmental Disabilities' Division of Human Development and Disability, the mission of the Disability and Health Team is to promote the health, well-being, independence, productivity, and full participation in society by people with disabilities. Program activities include assessing and monitoring the prevalence of disability in the United States; assessing the health status of people with disabilities; describing the risk factors and costs associated with secondary conditions and poor health; developing health promotion interventions to reduce secondary health issues and reduce disparities between people with and without disabilities; evaluate the effectiveness and cost of health interventions; offering training to health professionals who are interested in the field of disability and public health; and supporting conferences to facilitate and stimulate dialogue, disseminate and exchange information, establish research and policy priorities, and outline and undertake next steps.

Review Date: July 13, 2011

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National Center on Birth Defects and Developmental Disabilities, CDC

The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. The center includes three divisions - the Division of Birth Defects and Developmental Disabilities, the Division of Human Development and Disability, and the Division of Blood Disorders. It works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. NCBDDD seeks to accomplish these goals through research, partnerships, and prevention and education programs. .

Review Date: July 13, 2011

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National Dissemination Center for Children with Disabilities

NICHCY is the center that provides information (in English and Spanish) to the nation on: - disabilities in children and youth; - programs and services for infants, children, and youth with disabilities; - IDEA, the nation’s special education law; and - research-based information on effective practices for children with disabilities. NICHCY’s special focus is children and youth (birth to age 22). Anyone can use their services—families, educators, administrators, journalists, students.

Review Date: October 27, 2011

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NIH National Institute of Child Health and Human Development - NICHD

The NICHD is part of the National Institutes of Health (NIH), a component of the U.S. Department of Health and Human Services (HHS). The NICHD has primary responsibility for conducting and supporting basic, translational, and clinical research in the biomedical, behavioral, and social sciences related to child and maternal health, in medical rehabilitation, and in the reproductive sciences. Information specialists are available to answer your calls Monday through Friday, 8:30 a.m. to 4 p.m., EST.

Review Date: February 26, 2013

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President’s Committee for People with Intellectual Disabilities

The President’s Committee for People with Intellectual Disabilities (PCPID), formerly The President's Committee on Mental Retardation, has served in an advisory capacity to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities. PCPID has led the charge to improve the lives of people with intellectual disabilities and uphold their right to enjoy a quality of life that promotes independence, self-determination, and full participation as productive members of society. These goals include the assurance of full citizenship rights, the reduction of the occurrence and severity of intellectual disabilities and the promotion of forward thinking programs and services and cutting edge assistive technologies to improve the lives of people with intellectual disabilities.

Review Date: January 12, 2012

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American Academy for Cerebral Palsy and Developmental Medicine

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), founded in 1948, is a multidisciplinary scientific society devoted to the study of cerebral palsy and related neurological disorders and to professional education in developmental medicine. The Academy seeks to stimulate professional education, research, and interest in the problems involved in understanding these disorders and improving care and rehabilitation. Toward these ends AACPDM holds a variety of instructional courses and scientific plenary sessions designed to help professional people improve their knowledge and skills. AACPDM is funded by fees from its over 1,500 members.

Review Date: September 28, 2011

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American Association on Intellectual and Developmental Disabilities

Since 1876, the American Association on Intellectual and Developmental Disabilities (AAIDD) has been providing worldwide leadership in the field of mental retardation. We're a powerful community of leaders with a strong voice and important mission. AAIDD, (formerly AAMR -- American Association of Mental Retardation) is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities.

Review Date: August 13, 2009

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American Occupational Therapy Association, Inc.

The American Occupational Therapy Association is a national professional society established in 1917 to represent the interests and concerns of occupational therapy practitioners, and to improve the quality of occupational therapy services. Occupational therapy is a vital health care service whose practitioners help to restore and sustain the highest quality of productive life to persons recovering from illnesses or injuries, or coping with developmental disabilities or changes resulting from the aging process. Current AOTA membership numbers approximately 42,000, including occupational therapists, occupational therapy assistants, and occupational therapy students. Members reside in all 50 states, the District of Columbia, Puerto Rico, and 65 foreign countries. AOTA's major programs and activities are directed toward assuring the quality of occupational services; improving consumer access to healthcare services, and promoting the professional development of members.

Review Date: February 14, 2013

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Easter Seals Inc.

Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for nearly 90 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life's challenges and achieve personal goals. Easter Seals offers help, hope and answers to more than a million children and adults living with autism and other disabilities or special needs and their families each year. Services and support are provided through a network of more than 550 sites in the U.S. and through Ability First Australia. Each center provides exceptional services that are individualized, innovative, family-focused and tailored to meet specific needs of the particular community served. Easter Seals also advocates for the passage of legislation to help people with disabilities achieve independence, including the Americans with Disabilities Act (ADA). Passed in 1990, the ADA prohibits discrimination against anyone who has a mental or physical disability, guaranteeing the civil rights of people with disabilities.

Review Date: May 31, 2011

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Federation for Children with Special Needs

The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. The Federation is committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities. The Federation promotes active and informed participation of parents of children with disabilities in shaping, implementing, and evaluating public policy that affects them. The Federation believes in the power of parents helping parents and has infused a proven model of peer support throughout all its work. Most Federation staff members are parents or family members of children with disabilities and people with disabilities.

Review Date: June 08, 2011

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National Birth Defects Center

Established in 1984, the Center provides diagnosis and treatment to children born with Birth Defects, Genetic Diseases and Mental Retardation. The Center consists of physicians and consultants in pediatrics, genetics, orthopedics, cardiology, neurology, ophthalmology, endocrinology, craniofacial surgery, plastic surgery, and other specialties. The Center houses the Pregnancy Environmental Hotline, a toll-free service which provides information concerning the effects that drugs, medications, radiation, infections, or environmental agents may have on the fetus.

Review Date: August 27, 2008

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National Down Syndrome Congress

The National Down Syndrome Congress (NDSC), founded in 1974, promotes the welfare of people with Down syndrome and their families. Made up of parents, professionals, and other interested persons, the NDSC advocates for the improvement of human services and civil rights for people with Down syndrome, encourages research, and promotes public understanding of the condition. It also serves as a clearinghouse for information on the syndrome.

Review Date: November 04, 2010

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National Down Syndrome Society

The National Down Syndrome Society (NDSS) envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome. The mission of NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. NDSS serves individuals with Down syndrome and their families, as well as health care professionals, educators and others who work to provide services to this population, and the general public. The Society publishes and distributes information pamphlets and clinical care booklets; produces educational videos; and sponsors scientific symposia and national and international conferences on Down syndrome. Information and referrals are provided on an 800 hotline, and free information packets are available. NDSS and the Down syndrome community celebrate National Down Syndrome Awareness Month each October and established the Buddy Walk program to promote acceptance and inclusion of all people with Down syndrome.

Review Date: December 29, 2010

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National Early Childhood Technical Assistance Center

NECTAC is the national early childhood technical assistance center supported by the U.S. Department of Education's Office of Special Education Programs (OSEP) under the provisions of the Individuals with Disabilities Education Act (IDEA). NECTAC serves Part C-Infant and Toddlers with Disabilities Programs and Part B-Section 619 Preschool Programs for Children with Disabilities in all 50 states and 10 jurisdictions to improve service systems and outcomes for children and families. NECTAC also provides comprehensive topical information related to the Part C Early Intervention Programs and Preschool Special Education programs, as well as state contacts for these programs and other early childhood programs. Finally, NECTAC publishes an electronic newsletter, eNotes, that is available free to subscribers.

Review Date: October 18, 2011

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National Lekotek Center

The National Lekotek Center is a non-profit 501(C)3 organization based in Chicago, Illinois, and is the administrative and training center for a nationwide network of Lekotek centers housing family play facilities, toy lending libraries and computer play resources. Clinical evidence affirms that early intervention using strategic play techniques profoundly affects a child's learning capacity. Lekotek uses interactive play experiences, and the learning that results, to promote the inclusion of children with special needs into family and community life.

Review Date: November 15, 2011

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Special Olympics

Special Olympics, created in 1968 by Eunice Kennedy Shriver, is a global movement dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition. Special Olympics offers more than 1.3 million children and adults with intellectual disabilities year-round training and competition in 26 Olympic-type summer and winter sports. In addition to its sports programming, Special Olympics offers related initiatives, such as Healthy Athletes®, which provides a variety of health services through clinics conducted in welcoming environments at Special Olympics competitions. There is no charge to participate in Special Olympics.

Review Date: June 10, 2010

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TASH: Equity, Opportunity and Inclusion for People with Disabilities

TASH is an international grassroots leader in advancing inclusive communities through research, education and advocacy. Founded in 1975 as a 501(c)(3) non-profit organization, TASH advocates for human rights and inclusion for people with the most significant disabilities and support needs-those most vulnerable to segregation, abuse, neglect and institutionalization. The inclusive practices they validate through research have been shown to improve outcomes for all people.

Review Date: January 16, 2009

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The Arc

Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. Arc encompasses all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities. With more than 140,000 members and more than 700 state and local chapters nationwide, Arc works to ensure that people with intellectual and developmental disabilities and their families have the support they need to be members of the community.

Review Date: December 20, 2011

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The Autism Society

The Autism Society and its nationwide network of chapters educates parents, professionals, and the public regarding the autism spectrum; improves the welfare of people with autism spectrum disorders; and supports research regarding autism. The Autism Society’s information and referral service, AutismSource, provides accurate information to parents, health professionals, and concerned citizens. Parents can obtain information on understanding autism spectrum disorders, developing necessary skills for advocating for children or adults with autism, as well as assistance with locating Federal and State programs and education services, appropriate health facilities for children with autism, and other resources.

Review Date: June 12, 2012

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The Nemours Foundation

Since 1940, the Foundation has operated non-profit health care institutions. It provides health care services to the children of Delaware, Florida and the surrounding states; and selected health services for the elderly of Delaware, regardless of their financial means. Operationally, The Nemours Foundation is a not-for-profit knowledge corporation, which conducts nonprofit programs and excels in the provision of health, education and research services. Nemours provides health education through KidsHealth, a Web site dedicated to the health of children, research and professional education, prevention through Nemours Health and Prevention Services, and adjunct programs dealing with detection and intervention such as Nemours BrightStart! Dyslexia Initiative.

Review Date: June 12, 2012

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Williams Syndrome Association, Inc.

The Williams Syndrome Association, Inc., is a national, non-profit organization whose purpose is to provide support and the latest medical and educational information to individuals with Williams Syndrome and their families. WSA also strives to increase awareness and knowledge of Williams Syndrome among the professional community and the general population. Williams Syndrome is a rare, genetic disorder which is present at birth and affects males and females equally. It can occur in all ethnic groups and has been identified in countries throughout the world. Inquiries are accepted by the WSA via telephone, mail, electronically or in person.

Review Date: April 12, 2011

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