• The Beach Center
  www.beachcenter.org
  The Beach Center on Families and Disability at The University of Kansas

• The Arc of the US
  www.thearc.org
  The national organization of and for people with mental retardation and related disabilities and their families.

• Alliance of Genetic Support Groups
  www.geneticalliance.org
  A partnership of self-help groups and professionals addressing communication, service delivery, and advocacy issues for member support groups that are composed of individuals and families affected by genetic disorders.

• Federation of Families for Childrens' Mental Health
  www.ffcmh.org
  A national parent-directed organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families.

• Family Voices
  www.familyvoices.org
  Family Voices is a national grassroots organization directed by parents of children/adults with special health care needs, and composed of families and professional friends who care for and about children with special healthcare needs. Family leaders organized Family Voices to ensure that children's health is addressed as public and private health care systems undergo change in communities, states, and the nation. Family Voices gathers and provides information about health care issues affecting children so that everyone can advocate for and obtain the health care that children deserve. Every state has a Family Voices coordinator who assists families at the local and state levels. The national Family Voices office can provide you with the name of the Family Voices coordinator in your state.

• The Institute for Family-Centered Care
  www.familycenteredcare.org
  The Institute for Family-Centered Care provides leadership to advance the understanding and practice of patient- and family-centered care in hospitals and other health care settings.

• National Dissemination Center for Children with Disabilities (NICHCY)
  www.nichcy.org
  NICHCY is a national clearinghouse for families and professionals that offers information about disabilities and related services, assists with referrals, produces state resource sheets that provide contacts for disability related services and programs in each state, and publishes a newsletter. Each state has several different state agencies that coordinate the provision of services to children with disabilities or special health care needs in communities across the state. For example, each state has a state education agency usually called the Department of Education) that oversees the educational services provided by local school districts for children with special needs. A state health agency (that may be called the Department of Health or the Department for Children with Special Health Care Needs) has responsibility for local health agencies in communities around the state. Your state may also have an agency that deals with mental health issues. Every state also has a developmental disabilities council that receives federal funds to support innovative services for persons with developmental disabilities and their families. These agencies will be able to help you find services for your child, and perhaps also for your family, in your community. NICHCY maintains a continually updated directory of local and state agencies. Be sure to ask them to send you the resource sheet from your state (or you can download it from the NICHCY website).

• Mothers United for Moral Support National Parent to Parent Network (MUMS)
  www.netnet.net/mums/
  If your child has a rare disability and you cannot find another parent whose child has the same disability, you may need to look nationally or even internationally. Mothers United for Moral Support National Parent to Parent Network (MUMS). MUMS provides support to parents of a child with any disability or rare disorder in the form of a networking system that matches them with other parents whose children have the same or a similar condition. A national/international database of families enables MUMS to match parents who have not been able to find match at the local or state level.

• National Fathers Network
  www.fathersnetwork.org
  The National Fathers Network provides information, support, and resources to fathers of children with disabilities or chronic illness. Supporting the efforts of 83 fathers' programs in the US, the National Fathers Network publishes a bi-yearly newsletter, a monthly column in Exceptional Parent magazine, and operates a web page.

• The Sibling Support Project
  http://www.siblingsupport.org/about/about-don-meyer
  The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. The primary goal of the Sibling Support Project is to increase the availability of peer support and education programs (through interactive workshops for siblings called Sibshops) for brothers and sisters of people with disabilities and special healthcare needs.

• National Center for Parent Directed Family Resource Centers
  www.php.com
  The National Center for Parent Directed Family Resource Centers at Parents Helping Parents provides training and technical assistance to parents and professionals who are interested in developing a parent-directed family resource center (PDFRC). PDFRCs provide emotional and informational support to parents who have a child with special needs.

• National Organization for Rare Disorders (NORD)
  www.rarediseases.org
  NORD provides callers with information about rare disorders and brings families with similar disorders together for mutual support. Single written copies of disability information sheets are available through a literature order form.

• Family Village
  www.familyvillage.wisc.edu
  Family Village Project has a family-friendly website that provides informational resources about specific disabilities and resources, and opportunities to be in touch with others with similar issues. The site is geared for individuals with disabilities, their families, and those providing services and support.

• Quality Mall Website
  www.qualitymall.org
  The primary purpose of the Quality Mall website is to collect and disseminate information related to or useful in promoting quality of life for persons with developmental disabilities. It is not a retailer or vendor of products or services, but uses the theme of a shopping mall to help connect visitors to the best products and services available. People involved with, experienced with, or simply aware of such services are invited to visit the QualityMall website to shop the many "stores," and make recommendations for new products and services.

• Disability Resources
  www.disabilityresources.org Disability Resources provide links to the best disability resources on the web, including national and international sites, documents, databases, and other informational materials.

• Exceptional Parent Magazine
  www.eparent.com
  Publishes monthly magazine for parents of children with disabilities and professionals providing services to children and families. Articles describe programs and technology that expand opportunities for children with disabilities and their families. The magazine features accounts of family experiences that focus on family strengths, and offers a forum for networking among families. The Exceptional Parent website affords parents an opportunity to connect with other parents around similar family and disability issues.

• National Respite Locator Service
  http://www.archrespite.org/index.htm
  Maintains a database of respite services for those looking for childcare for children with special needs.

• PACER Technical Assistance Alliance for Parent Centers
  www.taalliance.org

• Kids On Wheels Magazine
  www.kidsonwheels.us
  

Parent to Parent Information Pages (for each state that has a P2P) click map icon below to view map or
Click to view text page

Parent Training and Information Centers/Community Parent Resource Centers

Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC) are funded by the US Department of Education. Their stated mission is to provide training and information to parents to enable them to participate more effectively with professionals in meeting the educational needs of children with disabilities. To accomplish their mission, PTIs and CPRC's provide training and information to parents of infants, toddlers, children, and youth with disabilities and to the professionals who work with parents. PTIs and CPRC's can help parents to:

• Understand their children's specific needs
• Communicate more effectively with professionals
• Participate in the educational planning process
• Obtain information about relevant programs, services, and resources

There is at least one PTI in every state. Thirty CPRC's provide community-based family support and information services to culturally and linguistically diverse families who often live in underserved communities. Additional information about the PTI or CPRC in your state or about PTIs and CPRCs nationally can be obtained from the Technical Assistance Alliance for Parent Centers (the Alliance) at www.taalliance.org

Support Groups and Specific Disability Groups

The number of specific disability information and support groups has grown enormously over the last 20 years. Many of these groups are directed by parents, and often these groups offer support groups for parents, referrals to local resources, informational materials, advocacy efforts, networking opportunities, and perhaps a program newsletter. For some of the groups, there are local, state, and national organizations, and generally the national office can provide the names of state and/or local chapters. While there are far too many specific disability groups to list here, there are directories that contain extensive listings. Three that you might find helpful are:

1. The annual Resource Directory produced by Exceptional Parent magazine with information available at www.eparent.com
2. The American Self-Help Clearinghouse which provides information on finding and developing self-help groups for a range of health and disability issues and can be reached at www.selfhelpgroups.org and;
3. The Family Village website at www.familyvillage.wisc.edu -- a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. The Family Village website includes informational resources on specific diagnoses, communication connections, adaptive products and technology, adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much more.