cancer.duke.edu/btc  
The Preston Robert Tisch Brain Tumor Center at Duke

Community and National Resources | Organizations Serving Special Needs Populations

Administration for Children and Families
370 L’Enfant Promenade, SW
Washington, DC 20447
Website: http://www.acf.hhs.gov/

  • This department carries out programs which promote the self sufficiency and protect the rights of persons with disabilities. This could be a great starting point. It helps to know what the law requires and what people are entitled to.

ERIC Clearinghouse on Disabilities and Gifted Education
(800) 328-0272
1920 Association Drive
Reston, VA 22091-1589
Website: http://ericec.org/

  • ERIC is a resource listing center for publications. They have a national database and lists of FAQ’s (Frequently Asked Questions) and Answers. They also develop products.

Federation for Children with Special Needs
(617) 236-7210
1135 Tremont Street, Suite 420
Boston, MA 02120
Website: http://www.fcsn.org/

This organization really focuses on parent empowerment! They have three main projects:

  1. Parent Training and Information Centers (PTICs) provide training and materials to help parents understand their child’s special needs, the laws that protect and provide services to meet those needs, and their parental rights. These centers are found in every state. To locate the center nearest you, call the number above.
  2. Technical Assistance for Parents Programs (TAPP): They have a wide variety of parent contacts. This area coordinates a national network of parents centers.
  3. Collaboration Among Parents and Health Professionals (CAPP): Here they provide development training and information resources to promote professional/parent partnerships, parent access to information, and peer support.

Learning Disabilities Association of America (LDA)
(412) 341-1515
4156 Library Road
Pittsburgh, PA 15234-1349
Website: http://www.ldanatl.org/

  • LDA is a nonprofit association of parents of children with learning disorders and other interested professionals. They provide free information and referrals to local chapters throughout the country. Annual membership fee ($25.00) includes newsletter subscription.

National Information Center for Children and Youth with Disabilities (NICHCY)
(800) 695-0285
PO Box 1492
Washington, DC 20013-1492
Website: http://www.nichcy.org/

  • This is a favorite resource! NICHCY is an information clearinghouse that provides information on disabilities and disability-related issues. Children and youth with disabilities, including brain tumors, birth to age 22, are their special focus. The staff is nice and happy to help you. Anyone may contact NICHCY for information - just tell them your situation and they will tell you what publications they can send you. They can give you personal responses to questions about specific disabilities, special educational and related services, Individualized Education Programs (IEP’s), family issues, transition to adult life, multicultural issues, legal issues, and much more! They can also give you referrals to other organizations, including parent groups, advocacy groups, regional and state organizations that can help you.

National Parent Network on Disabilities
(202) 463-2299
1130–17th Street, NW, Suite 400
Washington, DC 20036

  • This is a coalition of parent organizations and individuals united to serve children with special needs and their families.

US Department of Education
(800) 872-5327
330 C Street, SW, Room 3132
Washington, DC 20202-2524
Website: http://www.ed.gov/

  1. Office of Special Education Programs (OSEP)
    330 C Street, SW, Room 3086
    Washington, DC 20202-2570
    The US Department of Education’s Office of Special Education and Rehabilitative Services support programs that assist in educating children with special needs and provides for the rehabilitation of youth and adults with disabilities. It also supports research for improving the lives of individuals with disabilities. OSEP deals with free appropriate public education for children with disabilities. They have a great book called Summary of Existing Legislation Affecting People with Disabilities. It explains all sorts of issues and laws affecting people with disabilities.
  2. Rehabilitative Services Administration (RSA)
    330 C Street, SW, Room 330
    Washington, DC 20202-2531
    RSA deals with employment and independence for individuals with disabilities. Ask for the "Pocket Guide to Federal Help for Individuals with Disabilities." It lists programs and funding available to you.
  3. National Institute on Disability and Rehabilitation Research (NIDRR)
    330 C Street, SW, Room 3086
    Washington, DC 20202-8133
    NIDRR deals with leadership support for national programs on disabilities and rehabilitation research.

Family Support Network of North Carolina
(800) 852-0042
Website: http://fsnnc.med.unc.edu/

  • This is a statewide organization that can provide information for parents and families who have children with disabilities, developmental delays, and chronic illnesses. They can help to connect you with resources in your own community.

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