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.
  • Center 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 and toddlers), school 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.
  • Family 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 needs.
  • Parent 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.
  • Sibling Support Project. Programs for the siblings of kids with disabilities. Includes online discussion 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.

Communicate Online

  • CaringBridge. Create a free, personalized website that supports and connects loved ones during critical illness, treatment, and recovery.
  • Friends' Health Connection (FHC) Online Community. Join to find members with similar health care needs to exchange friendship and support. Includes groups for family members and caregivers.

Learn More

  • Center 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 information, care plans for kids and teens, and resources to help families prepare for their kids' adjustment and interaction in child care and school.
  • Links to government resources about benefits, civil rights, community life, education, emergency preparedness, employment, health, housing, technology, and transportation for people with disabilities.
  • KidsHealth. A wealth of physician-approved information in English and Spanish for parents, kids, and youth about health, emotions and behavior, growth and development, and positive parenting. The site contains articles about specific disabilities and chronic illnesses and includes a compassionate article written for kids, Kids Who Might Need Extra Help.
  • Medical 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 more.
  • 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 needs, Family Voices and Family-to-Family Health Information Resource Center at the Statewide Parent Advocacy Network of N.J.; Olivia K. Pickett, M.A., M.L.S., NCEMCH.
Editor: Ruth Barzel, M.A., NCEMCH.