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
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.
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 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
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 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
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,
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.
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
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.
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.
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
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
-Annual Resource Directory produced by Exceptional Parent magazine
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
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.