Kids and Teens with Special Health Care Needs
Resources for Families
Here you will find links to care, services, and support; communicate online; and learn more about caring for kids and teens with special health care needs.
Find Care, Services, and Support
Do you have questions about early intervention and special education?
health care and insurance? emotional support for you or your other
children? These resources will help you find people in your state who
can help answer your questions.
- American Self-Help Group Clearinghouse: Self-Help Group Sourcebook Online. Information on national and international self-help support groups for chronic illnesses and disabilities; emotional, behavioral, and mental health challenges; and family supports. Includes information about starting a support group in your community.
- Catalyst Center
Family Resources. Contact information in English and Spanish for state organizations and consumer
assistance programs that help families understand their health insurance options and help them get health insurance for children and youth with special health care needs.
for Parent Information and Resources (CPIR): Find Your Parent Center.
Contact information for the Parent Training and Information Center
(PTI) and Community Parent Resource Center (CPRC) in your state
and a national PTI for military families. PTIs and CPRCs offer
information about disabilities, early intervention (for babies
services (for school-aged children), therapy, local policies, and
much more. PTIs and CPRCs also offer free advocacy and training
on a variety of topics such as advocacy in schools and how to partner
with professionals to meet your child's needs. CPIR also offers resources on
topics ranging from accommodations to transition.
Voices (FV). Family
Voices in Your State and Family
to Family Health Information Centers (F2F HICs) are family-run centers that provide free, confidential information and can help
you find resources and services to provide and pay for
health care for kids and teens with special health care
to Parent USA (P2P USA): Support. Contact information for state parent-to-parent programs that provide emotional support and information to families of kids and teens with special needs, most notably by matching parents who need support with a trained and experienced parent who has shared the experience of disability in the family. Also offers technical assistance and resources to parents interested in building, improving, and evaluating a parent-to-parent program.
Support Project. Programs for the siblings of kids
with disabilities. Includes online
groups for siblings and parents and
publications for purchase that are
for and about siblings.
- Exceptional Parent Magazine offers
an annual resource guide containing directories of organizations, associations,
products, and services for families who have children with disabilities. To receive a free copy, call (800) 372-7368.
- See the Community
Services Locator: An Online Directory for Finding
Community Services for Children and Families.
Create a free, personalized website that supports and connects loved
ones during critical illness, treatment,
Health Connection (FHC) Online
Join to find members with
similar health care needs to exchange
friendship and support. Includes
family members and caregivers.
for Children with Special Needs.
Tips and tools to help
families plan, organize, coordinate,
and keep track of important information
about their kids' care.
Includes a guide to getting started
after a new diagnosis, strategies
for coping, emergency preparedness
kids and teens, and resources to help families
prepare for their kids' adjustment
and interaction in child care and
to government resources about benefits, civil rights,
community life, education, emergency preparedness,
employment, health, housing, technology, and transportation
A wealth of physician-approved
information in English and Spanish
for parents, kids, and youth about
behavior, growth and development, and
positive parenting. The site contains
articles about specific disabilities
illnesses and includes a compassionate article written
for kids, Kids
Who Might Need Extra Help.
Home Portal. Information about responding to a diagnosis and
learning about your child's condition, caring for your child's special
needs, working with schools and educators, using care notebooks and finding
needed forms, managing your child's transitions, taking care of yourself and your family, and more.
- My Child Without
Limits. Information about developmental milestones
for babies and kids (ages 0-5), disabilities, early intervention
services, treatments and therapies, assistive technologies, working
with experts, life planning, and family life. Includes tips from
other parents and helpful forms.
Need More Information?
- See NCEMCH's knowledge path, Children
and Youth with Special Health Care Needs, for resources about
the family-professional partnership; medical home; financing services;
screening; community services; transition; advocacy; chronic illnesses
and disabilities; general health, wellness, and safety; hospitals
and patient travel and lodging; nutrition; rehabilitation; sports,
physical activity, recreation, and the arts; universal design; and
- See NCEMCH's collection of family resources on topics that include asthma, autism, diabetes, mental health, and more.
Kids and Teens with Special Health Care Needs: Family Resource Brief, 2nd ed. (April 2014). (Updated: July 2014).
Author: Susan Brune Lorenzo, M.L.S., NCEMCH.
Reviewers: Lauren Agoratus, M.A., parent of a child with special health care
Family Voices and Family-to-Family Health Information Resource Center at the
Network of N.J.; Olivia K. Pickett, M.A., M.L.S., NCEMCH.
Editor: Ruth Barzel, M.A., NCEMCH.