Links to Related Sites

Alliance for Full Participation (AFP)

The Alliance for Full Participation (AFP) is 13 national organizations that work together in the field of intellectual and developmental disabilities. The AFP recently began a national effort focusing on employment in the U.S. for people with developmental disabilities.

Alliance of Genetic Support Groups

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.

Arc of the US

The national organization of and for people with mental retardation and related disabilities and their families.

Association of Maternal and Child Health Programs (AMCHP)

Association of Maternal and Child Health Programs (AMCHP) is a non-profit national health organization representing state public health leaders and others working to improve the health and well being of women, children and youth, including those with special health care needs. AMCHP members also include academic, advocacy and community-based maternal and child health professionals, as well as families.

AMCHP builds successful programs by disseminating best practices; advocating on their behalf in Washington; providing technical assistance; convening leaders to share experiences and ideas; and advising states about involving partners to reach our common goal of healthy children, healthy families, and healthy communities.

AMCHP members serve one million of the estimated 12 million children who have a disability or chronic illness. AMCHP works to ensure that children with special health care needs receive high quality, family-centered and integrated health services. We work with national and state partners to link children identified with a special need to appropriate health care and support services.

Beach Center on Families and Disability

The Beach Center website provides a summary of parent to parent research.  Scroll down to view Knowledge to Action Guide and link to Parent to Parent Support, click on Research, print and share.

Disability News

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

Disability Resources

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

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.

Family to Family Health Information Centers

Family to Family Health Information Centers help families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. As parents themselves, staff at F2F HICs understand the issues that families face, provide advice, offer a multitude of resources, and tap into a network of other families and professionals to help CYSHCN receive quality health care.

Family Support Center on Disabilities: Knowledge & Involvement Network (KIN)

The Family Support Center on Disabilities: Knowledge & Involvement Network (call us KIN for short!) offers you a centralized resource on the full range of options available to individuals with disabilities and their families. Get information on such topics as early intervention and education, employment, legislation and policy, different disabilities, quality family supports and programs, health and mental health, housing, transportation, recreation, and lots more. Family Forum is an on-line place for individuals with disabilities, family members, friends and providers to meet, share interests, concerns, ask questions, and offer advice. Family Support Center on Disabilities is funded by the Administration on Developmental Disabilities and is housed at the Academy for Educational Development.

Family Village

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.

Family Voices

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.

Federation of Families for Children's Mental Health

A national parent-directed organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families.

Help your baby walk

A web site created for parents with a child who is delayed in the ability to walk. Includes an eBook with a detailed personal account of the authors' experiences helping their daughter learn to walk and 50 games and activities to enjoy with a baby that help develop the strength, balance, coordination and confidence needed to walk. Web site also includes links to research, resources, toys, and products related to helping your baby walk.

Housing & Mortgages for People with Disabilities

This guide has been created to help individuals living with disabilities, and their family members, in the process of buying a home of their own. Here you can learn more about the five important steps in buying a home and about financial assistance programs that are available for individuals living with disabilities, who want to buy a home.

Institute for Patient and Family-Centered Care

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. The Institute hosts a variety of Webinars and Seminars with national leaders  successfully implementing patient and family-centered policies and practices. The Institute will host its International Conference on Patient and Family-Centered Care in Washington DC, June 2012.

March of Dimes

One of the goals of the March of Dimes is to be the one-stop source that provides mothers with reliable information about pregnancy and baby health I the most convenient way possible. The March of Dimes web site is packed with practical information as well as the latest medical and scientific research findings. Individual questions can be e-mailed directly to health information specialists in both English and Spanish. Expectant mothers can get daily text messages with health pregnancy tips. March of Dimes offers a podcast series offering health information topics available "on demand," and online scrapbooking in celebration of babies through Every Baby Has a Story® campaign.

Share your Story

This is an online community for NICU families. You may participate in online discussions, start a blog, or just make friends. On this site be sure to click on Share with Care to find 10 tips for safe online interaction.

MCH Neighborhood

The MCH Neighborhood, administered by the Institute for Child Health Policy.

Mothers United for Moral Support National Parent to Parent Network (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 Center for Parent Directed Family Resource Centers

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 Dissemination Center for Children with Disabilities (NICHCY)

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).

National Fathers Network

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.

National Organization for Rare Disorders (NORD)

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.

National Respite Locator Service

Maintains a database of respite services for those looking for childcare for children with special needs.

PACER Technical Assistance Alliance for Parent Centers

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.

Parlerai

Parlerai creates a secure network of family, friends and caregivers surrounding a child with special needs using innovative and highly personalized tools to enhance collaboration and provide a safe means of communicating via the Internet.

Quality Mall Website

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.

Sibling Support Project

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.

Support Groups and Specific Disability Groups

www.eparent.com -Annual Resource Directory produced by Exceptional Parent magazine

www.selfhelpgroups.org - American Self-Help Clearinghouse

www.familyvillage.wisc.edu - Family Village website

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.

Syndromes Without A Name USA (SWAN)

Syndromes Without A Name USA (SWAN) is a non-profit organization dedicated to providing support to the families of children living with an undiagnosed medical condition.

The Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention has launched a web site for the National Center on Birth Defects and Developmental Disabilities.

The Maternal and Child Health Library

The Maternal and Child Health Library is a virtual guide to MCH information. It offers a wide variety of electronic resources, including the MCH Alert, knowledge paths, databases, and other materials developed for professionals and families. The library is located at the National Center for Education in Maternal and Child Health at Georgetown University.