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Parents of Children with Special Needs

Parents of children with special needs are often advocates for their children’s education and medical care. The following Federal agencies, national organizations, publications, and Web sites provide a sample of information for parents of children with special needs. These resources focus on issues such as inclusion, parent support, parent advocacy, and medical conditions.

Federal Agencies

  • Americans with Disabilities Act (ADA) Home Page
    U.S. Department of Justice
    800-514-0301
    World Wide Web: www.usdoj.gov/crt/ada/adahom1.htm

    The ADA Home Page contains Federal resources and ADA publications on how to comply with the ADA. ADA specialists are available to answer questions through a toll-free hotline; Spanish language services are also available. This Web site contains information about ADA requirements; enforcement procedures and how to file complaints; available technical assistance; legal information; the ADA Mediation Program; new or proposed regulations; and other technical assistance resources. The Web site includes the Child Care Centers and the Americans with Disabilities Act Information Sheet available on the Web at www.usdoj.gov/crt/ada/chcaflyr.htm, and Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act, available on the Web at www.usdoj.gov/crt/ada/childq%26a.htm.

  • Learn the Signs: Act Early
    NationalCenter on Birth Defects and Developmental Disabilities (NCBDDD)
    World Wide Web in English: www.cdc.gov/ncbddd/autism/actearly/
    World Wide Web in Spanish: www.cdc.gov/ncbddd/autism/actearly/spanish/default.htm

    Learn the Signs: Act Early has information about milestones children should reach in how they play, learn, speak, and act. This information is designed to help parents recognize potential delays in any of these areas so they can help their children reach their full potential.

  • Office of Special Education Programs (OSEP)
    U.S. Department of Education
    800-872-5327
    World Wide Web: www.ed.gov/about/offices/list/osers/osep/index.html?src=mr

    OSEP is dedicated to improving results for infants, toddlers, children, and youth with disabilities ages birth through 21 by providing leadership and financial support to assist States and local school districts. IDEA authorizes formula grants to States, and discretionary grants to institutions of higher education and other nonprofit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers.

  • National Center on Birth Defects and Developmental Disabilities (NCBDDD)
    Centers for Disease Control and Prevention (CDC)
    770-488-7150
    World Wide Web: www.cdc.gov/ncbddd/

    NCBDDD works to improve the health of children and adults by preventing birth defects and developmental disabilities, promoting optimal child development, and promoting health and wellness among children and adults living with disabilities. This mission incorporates the mission of the former Division of Birth Defects, Child Development, and Disability and Health which was in the National Center for Environmental Health.

National Organizations

  • Child Care Law Center (CCLC)
    415-394-7144
    World Wide Web: www.childcarelaw.org/

    CCLC is a national nonprofit organization that focuses exclusively on the complex legal issues surrounding the establishment and provision of child care. CCLC provides information on the Americans with Disabilities Act (ADA) for child care programs and publications on legal rights under the ADA for families. A list of CCLC publications is available on CCLC’s Web site. Some of the materials are available in Chinese and in Spanish. Information specific to children with disabilities is available on the Web at http://www.childcarelaw.org/pubs-issue.shtml#disabilities.

  • Circle of Inclusion Home Page
    World Wide Web: http://circleofinclusion.org

    The Circle of Inclusion Web page is for early childhood professionals and families of young children with special needs. The Web site offers demonstrations of and information about the effective practices of inclusive educational programs for children birth through age 8. It has forms and articles developed by the project and online demonstration programs.

  • Family & Advocates Partnership for Education (FAPE) Web Site
    World Wide Web: www.fape.org

    FAPE aims to inform and educate families and advocates about the Individuals with Disabilities Education Act of 1997 (IDEA). The Web site contains a Weekly Newsline and IDEA Regulations in Spanish.

  • Medem Medical Library
    World Wide Web: www.medem.com/medlb/medlib_entry.cfm

    Medem was founded by leading medical societies, including the American Academy of Ophthalmology; the American Academy of Pediatrics; the American College of Allergy, Asthma & Immunology; the American College of Obstetricians and Gynecologists; the American Medical Association; the American Psychiatric Association; and the American Society of Plastic Surgeons. Their medical library represents the full range of patient education information from partner medical societies and other trusted sources.

  • The National Dissemination Center for Children with Disabilities
    800-695-0285
    World Wide Web: www.nichcy.org

    The Dissemination Center provides information and referral services on children and youth with special needs to families, caregivers, professionals, and others for the purpose of improving the educational outcomes of all children and youth. The organization has links to resources in each State, as well as a national hotline and a Web site used for information exchange. NICHCY has published on topics such as basics for parents; information on specific disabilities; and parenting guides that include information on accessing parent groups as well as accessing programs for infants, toddlers, and preschoolers with disabilities.

  • Technical Assistance ALLIANCE for Parent Centers
    Alliance National Center
    888-248-0822 or 952-838-9000
    World Wide Web: www.taalliance.org

    The Technical Assistance ALLIANCE for Parent Centers supports a unified technical assistance system in order to assist and coordinate Parent Training and Information Projects and Community Parent Resource Centers under the Individuals with Disabilities Education Act (IDEA). This project is funded by the U.S. Department of Education, Office of Special Education Programs and consists of one national center and six regional centers. The project strengthens connections to the larger technical assistance network and fortifies partnerships between parent centers and State education systems at regional and national levels.

    Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in each State provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with children. This assistance helps parents participate with professionals in meeting the educational needs of children and youth with disabilities more effectively. The Parent Centers work to improve educational outcomes for children and youth with all disabilities (emotional, learning, mental, and physical). Additional information on publications and links to a variety of resources (such as national disability agencies and organizations) are available on their Web site.

  • The Arc
    301-565-3842
    World Wide Web: www.thearc.org

    The Arc has materials on mental retardation and other disabilities, as well as information on where to find help and other resources that may be of interest to parents. The Arc’s Web site contains many full-text documents on children with special needs.

Additional Resources

  • The Including Children with Disabilities in Child Care document under the Children with Disabilities topic of NCCIC’s Web site in the Popular Topics section at http://nccic.acf.hhs.gov/poptopics/includingchildren.html includes information about organizations, publications, and Web sites that have information about strategies for including children with disabilities in child care settings.
  • Children with Special Needs: Internet Guide for Parents and Professionals (2002), by the Birth to Three Early Intervention System, Delaware Department of Health & Social Services, was produced to help parents and professionals seeking information about children with special needs gain access to the various Web sites that address needs or questions they may have. National resources are listed. This resource is available on the Web at www.state.de.us/dhss/dms/epqc/birth3/files/internetguide.pdf.
  • The Benefits of an Inclusive Education—Making It Work (1996), an Early Years are Learning Years release, published by the National Association for the Education of Young Children (NAEYC), highlights the benefits of inclusive care for children with and without disabilities. This resource is available on the Web at www.naeyc.org/ece/1996/07.pdf.
  • A Place For Me: Including Children with Special Needs in Early Care and Education Settings (1994), by Phyllis Chandler, published by NAEYC, provides a descriptive summary of how inclusive programs for children ought to work. Additional information is available on the Web at www.naeyc.org/shoppingcart/Itemdetail.aspx?Stock_No=237.

Updated April 2007

 
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