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Family-Centered
Care
 Family
Centered Care in a Medical Home
- The medical home physician is known to the child or
youth and family.
- Mutual responsibility and trust exists between the patient
and family and the medical home physician.
- The family is recognized as the principal caregiver
and center of strength and support for child.
- Clear, unbiased, and complete information and options
are shared on an ongoing basis with the family.
- Families and youth are supported to play a central role
in care coordination.
- Families, youth, and physicians share responsibility
in decision making.
- The family is recognized as the expert in their child’s
care, and youth are recognized as the experts in their
own care. 1
 A
New and Improved Definition of Family Centered Care
The definition has been improved to guide and assist you
to infuse professional practice, heighten family expectations,
and withstand the test of time and the changing environments.
These fact sheets also include principles of family centered
care and the role of cultural competence. From The MCHB
Division of Services for Children with Special Health Care
Needs.
Web sites/ Organizations
Beach Center on Families and Disability: www.beachcenter.org/
The mission of The Beach Center on Families and Disability
at The University of Kansas is to enhance the quality of
life of families who have children with disabilities.
Bravekids.org: www.bravekids.org/
1) An online community for children with special needs
and their caretakers that includes: Medical Information
for family members, as well as providing illness-related
information to the children in a fun, interactive way so
they can understand what's happening to them; Message Boards;
Directory of Healthcare Resources; Interactive Games and
Contests for children with special needs
2) MSN TVs to seriously ill children with emphasis on those
from low-income families. This enables these children to
establish e-mail communication with teachers and links the
child to school work so they can maintain their studies.
3) Brave Kids Resource Centers to pediatric wards of hospitals,
which enables parents to locate medical information and
local resources while they are in the hospital with their
child.
The Center for Children with Special Needs: www.cshcn.org
This site offers information and resources for parents and
professionals who advocate and care for children with special
health care needs. Check out the Linkages Newsletter in
News and Events, the Asthma fact sheets in Resources,
or the Families-As-Teachers Program description in Programs.
Child Development Institute: www.childdevelopmentinfo.com/
Online Information: Child Development, Parenting, Child
Psychology, Teenagers, Health, Safety and Learning Disabilities
including Attention Deficit Disorder and Dyslexia.
Designs for Change: www.designsforchange.org/
Designs for Change (DFC) is a 23-year-old, multi-racial,
educational research and reform organization.
Exceptional Parent: www.eparent.com
Exceptional Parent Magazine's online resource. Continuing
30 award winning years of providing information, support,
ideas, encouragement and outreach for parents and families
of children with disabilities and the professionals who
work with them.
Family to Family Health Connections Theme Page
This new resource provides information for individuals and grantees interested in topics related to Family-to-Family Health Information Centers. The theme page is at Family to Family Health Connections Theme Page.
Family Education: www.familyeducation.com/home/
Parenting advice, Child development and family references
Family Resource Center on Disabilities (FRCD): www.frcd.org/
FRCD was organized in 1969 by parents, professionals, and
volunteers who sought to improve services for all children
with disabilities.
Family Resource Coalition of America: www.frca.org/
The Family Resource Coalition of America is an alliance
of people and organizations convinced that in order to do
the best we can by our nation's children, we need to support
and strengthen America's families.
Families USA: www.familiesusa.org
Families USA is a national nonprofit organization advocating
high-quality, affordable health and long term care for all
Americans. This site includes publications and advocacy
information on Medicaid, Medicare, children's health care
reform, and managed care.
Family Support Network: www.familysupportnetwork.org/
The mission of the Family Support Network is to unify individuals
with disabilities and their families to advocate for funding,
services, and community resources that strengthen and support
the individual and the family directly by responding to
their individual needs and empowering them to live in their
own homes. The Family Support Network further seeks to ensure
the continuation of all individual supports throughout the
life span of the individual.
The Family Village: 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. Our
community 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,
much more!
Family Voices: familyvoices.org
This site is where advocates of children with disabilities
join to offer stories, current events, links, and opportunities
for others to help.
Federation for Children with Special Needs: www.fcsn.org
The Mission of the Federation for Children with Special
Needs is to provide information, support, and assistance
to parents of children with disabilities, their professional
partners, and their communities
Institute for Child Health Policy: www.ichp.ufl.edu/
The Institute for Child Health Policy focuses its attention
on issues of access, utilization, cost, quality and family
involvement in both their policy and program development
and health services research.
Institute for Family-Centered Care: www.familycenteredcare.org
The Institute for Family-Centered Care, a non-profit organization,
provides essential leadership to advance the understanding
and practice of family-centered care. This site shares information,
facilitates problem-solving and promotes dialogue among
individuals and organizations working toward family-centered
care.
The Kid's Domain: www.kidsdomain.com/
Kids Domain is a kid-oriented site, with fun stuff for kids
to make, do and see. Kids, parents, caregivers and educators
will all find items of interest here.
Maternal and Child Health Bureau:
www.mchb.hrsa.gov/
Maternal and Child Health Bureau provides leadership,
partnership, and resources to advance the health of all
mothers, infants, children and adolescents-including families
with low income levels, those with diverse racial and ethnic
heritages and those living in rural or isolated areas without
access to care.
Mayo Clinic: www.mayoclinic.com
Mayo Clinic.com provides health education to their patients
and the general public through disease self-management,
drug information, and health decision guides. All information
is developed and/or reviewed by their own researchers and
scientists.
National Association for Hospitals and Related Institutions:
www.childrenshospitals.net
NACHRI is a not-for-profit membership organization of children's
hospitals, large pediatric units of medical centers and
related health systems, including those that specialize
in rehabilitative care of children with serious chronic
or congenital illnesses.
National Parent Information Network (NPIN): npin.org/
The National Parent Information Network (NPIN) is a project
of the ERIC system, which is administered by the National
Library of Education in the U.S. Department of Education.
NPIN is designed and maintained by two ERIC clearinghouses:
the ERIC Clearinghouse on Urban Education at Teachers College,
Columbia University, New York City; and the ERIC Clearinghouse
on Elementary and Early Childhood Education at the University
of Illinois at Urbana-Champaign.
National Resource Center for Family Centered Practice:
www.uiowa.edu/%7Enrcfcp/new/index.html
The National Resource Center for Family Centered Practice,
based at the School of Social Work at the University of
Iowa, provides technical assistance, staff training, research,
and information about family-based programs and issues.
The site contains extensive bibliographies on over 60 topics,
numerous online links, an online newsletter, as well as
other publications and resources.
Our-Kids: www.our-kids.org/
Our-Kids is a "Family" of parents, caregivers and others
who are working with children with physical and/or mental
disabilities and delays. Our-Kids provides an e-mail list
for caregivers of children with special needs to provide
support and information.
Parent to Parent: www.p2pusa.org/
An alliance of Parent to Parent programs whose primary purpose
is to help emerging or established Parent to Parent programs
by: providing a clearinghouse of information and support
on best practices | offering networking and peer mentoring
experiences | mentoring future Parent to Parent leaders
| nurturing and developing key relationships that enhance
P2P programs' ability to support families, and effect policy
change.
This site has been designed for the following purposes:
- To connect parents, family members, and professionals
to a Parent to Parent program within your state or a neighboring
state.
- To provide Technical Assistance to experienced and/or
emerging Parent to Parent programs nationally and internationally
and to assist those interested in starting a program.
- To educate parents, family members and professionals
about the efficacy and methodology of parent to parent
support.
ParentPals: www.parentpals.com/
Parentpals.com Special Education Guide is a special education
community where parents and professionals share information
and offer support. Sponsored by Ameri-Corp Speech and Hearing.
Parents as Teachers: www.patnc.org/
Parents as Teachers is an award-winning non-profit parent
education and family support organization. Through a network
of more than 2,600 local programs, more than 10,000 PAT
trained and certified parent educators work with parents
to provide them with parenting support and information on
their developing child.
Parents For Inclusion: www.parentsforinclusion.org/
Parents helping parents so their disabled children can learn,
make friends and have a voice in ordinary schools and throughout
life.
Parents Helping Parents: www.php.com/
Parents Helping Parents, Meeting children's special needs
through parents helping parents since1976 Mission: Helping
children with special needs receive the resources, love,
hope, respect, health care, education and other services
they need to achieve their full potential by providing them
with strong families and dedicated professionals to serve
them.
Parents Place: www.parentsplace.com
Parents Place is a branch of iVillage.com: The Women's Network
that offers resources and outlets for families including
chat rooms, magazines, coupons, editorials, kid crafts and
parenting tips.
Research & Training Center on Family Support and
Children's Mental Health: www.rtc.pdx.edu/
Welcome to the Web site of the Research & Training Center
on Family Support and Children's Mental Health. The Center's
research and training activities focus on improving services
to children and youth who have mental, emotional, or behavioral
disorders and their families.
:
www.thearc.org/siblingsupport/
The Sibling Support Project, believing that disabilities,
illness, and mental health issues affect the lives of all
family members, seeks to increase the peer support and information
opportunities for brothers and sisters of people with special
needs and to increase parents' and providers' understanding
of sibling issues.
Shriners Hospitals for Children: www.shrinershq.org/Hospitals/index.html
Shriners Hospitals for Children is a network of pediatric
specialty hospitals, founded by the Shrine, where children
under the age of 18 receive excellent medical care absolutely
free of charge.
Special Families Guide: www.specialfamilies.com/
Children with special needs can be endearing, lovable, and
extremely challenging. On this site, psychologist, author,
and parent Robert Naseef, Ph.D., shares his insights and
experiences on family life for parents, siblings, and children
with special needs. Autism, developmental disabilities,
cerebral palsy, learning disorders, special healthcare needs,
and many other conditions are discussed--with a focus on
the special needs of families and emphasizing the role of
fathers.
Technical Assistance Alliance for Parent Centers:
www.taalliance.org/index.htm
A ssisting and coordinating 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 1 national
center and 6 regional centers. The project is funded to
strengthen the connections to the larger technical assistance
network and fortify partnerships between parent centers
and state education systems at regional and national levels.
Other Online Family-Centered Resources:
www.familycenteredcare.org/resources/index.html
1. The Medical Home. Pediatrics. 2002;
110: 184-186
Last Updated
August 13, 2008
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