Here you will find links to resources about care, services, support, and communicating online and websites about kids and teens with special health care needs.

Care, Services, and Support

• Exceptional Parent Magazine. An annual resource guide containing directories of organizations, associations, products, and services for families who have kids with disabilities. To receive a free copy, call (800) 372-7368 (E-PARENT).
  
  
• Family Voices (FV). Family Voices in Your State and Family to Family Health Information Centers (F2F HICs) help families find resources and services to provide and finance health care for their kids.
  
  
• Insure Kids Now. Links to each state's child and teen health insurance program website. Available in English and Spanish. Telephone: (877) 543-7669 (KIDS-NOW).
  
  
• Mothers United for Moral Support (MUMS) National Parent-to-Parent Network. A networking system for parents or caregivers of kids with special health care needs that matches them with other parents whose kids have the same or similar conditions. The network includes over 21,000 families from 56 countries covering over 3,500 disorders. Parents can exchange medical information and contact information for doctors, clinics, and research programs and can provide each other with emotional support.
  
  
• National Association of Councils on Developmental Disabilities. Contact information for state and territorial councils on developmental disabilities, which aim to develop and sustain inclusive communities and self-directed services and supports for people with developmental disabilities and their families.
  
  
• National Dissemination Center for Children with Disabilities (NICHCY): State Organizations. Contact information for state agencies and organizations, disability-specific organizations, parent groups and parent training and information centers, and other organizations within each state that address disability-related issues.
  
  
• Parent Technical Assistance Center Network: Find a Parent Center in Your State. Contact information for centers that offer training and information to parents of kids, teens, and young adults with disabilities (emotional, learning, mental, and physical) to help parents participate more effectively with professionals in meeting their kids' educational needs. Separate centers serve military families and Native American families.
  
  
• Parent to Parent USA (P2P USA). Contact information for statewide parent to parent programs. The programs provide emotional support and information to families of kids with special health care needs. In particular, the programs match parents seeking support with trained and experienced veteran parents who have shared the experience of disability in the family. P2P USA also offers technical assistance and resources to parents interested in building, improving, and evaluating a program.
  
  
• Self-Help Group Sourcebook Online. Information on over 1,100 national and international self-help support groups for chronic illnesses and disabilities, bereavement, parenting, caregiver concerns, and other stressful life situations. Includes information about starting self-help groups.
  
  
• See the MCH Library's Community Services Locator: An Online Directory for Finding Community Services for Children and Families.
  

Communicate Online

• CarePages. Create a free, personal, private web page to help families and friends communicate when someone is receiving care. Also offers online discussion forums, blogs, stories of inspiration, and tips on how to support a loved one.
  
  
• 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. Resources include message boards, blogs, and online lectures.
  

Websites

• ARCH National Respite Network and Resource Center. Fact sheets, training manuals, and evaluation guides about respite services for caregivers and families. Also contains contact information for state respite coalitions and a tool for locating community respite services.
  
  
• Beach Center on Disability: Wisdom-Based Action. Resources for families about planning the transition from early intervention to preschool, advocating for care coordination, and gaining emotional well-being. Also includes resources that address the special needs of Asian-American families, kids who have cochlear implants, and people seeking customized employment.
  
  
• 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.
  
  
• Disability.gov. Links to government resources for people with disabilities on the following topics: benefits, civil rights, community life, education, emergency preparedness, employment, health, housing, technology, and transportation.
  
  
• Drug Information Portal. Information for health professionals, researchers, and consumers about more than 17,000 drugs. Search by drug name or category. Drug information records include a description of the drug and links to resources for additional information.
  
  
• Exceptional Parent (EP). Articles about technology, health care, education, family and community, financial planning, mobility, sports and recreation, and other issues for families.
  
  
• Family Village. Links to a wealth of resources for people with cognitive and other disabilities, their families, and their service providers. Includes resources about specific diagnoses, adaptive products and technologies, adaptive recreational activities, education, legal issues, respite care, disability-related media and literature, online discussion groups, and parent-to-parent matching programs.
  
  
• Family Voices (FV): Bright Futures for Families. Materials for families and communities to help families make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as resources on health care.
  
  
• Medical Home Portal. Information about responding to a diagnosis, siblings of kids with special health care needs, managing and coordinating care, family support, advocacy, terminology, record keeping, newborn screening, and specific diagnoses and conditions.
  
  
• National Dissemination Center for Children with Disabilities (NICHCY). Information about disabilities in babies, kids, and teens; early intervention and special education; and effective educational practices. Materials are available in English and Spanish.
  
  
• Sibling Support Project. Information about its program and workshops for the siblings of kids with special health care needs and developmental needs. Includes online discussion groups for siblings and parents. Also presents publications for purchase that are for and about siblings.
  
  
• Social Security Online: Benefits for Children With Disabilities. Information for the parents, caregivers, or representatives of kids and teens under age 18 who have disabilities that may make them eligible for Supplemental Security Income payments. Also presents information for adults who became disabled in childhood and who may be entitled to Social Security Disability Insurance benefits.
  
  
• Specialized Training of Military Parents (STOMP). Fact sheets and other materials and an online discussion group for military families of kids with special health care needs. Search by state to find contact information for volunteers in each state who are parents of kid with special health care needs and have experience in raising their kids in military communities and traveling with their spouses to different locations.
  
  
• Also see the MCH Library's knowledge path, Health Insurance and Access to Care for Children and Adolescents and the organization list, Family Resource Centers.
  

Learn more about caring for children and youth with special health care needs and adoption, advocacy, child care and early childhood programs, chronic illnesses and disabilities, cultural competence, early intervention and special education, environmental concerns, financing services, foster care, general health, wellness, and safety resources, genetics, hospice and palliative care, hospitals and patient travel and lodging, mental health, nutrition, rehabilitation, screening, sports, recreation, and the arts, transition, and universal design.

Need more information? Use the collection of resources that library staff have put together for you and your family.

Children and Youth with Special Health Care Needs: Family Resource Brief. (August 2010). (Updated: January 2013).
Author: Susan Brune Lorenzo, M.L.S., MCH Library.
Reviewer: Olivia K. Pickett, M.A., M.L.S., MCH Library.
Editor: Ruth Barzel, M.A., MCH Library.