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
Parent Magazine. An annual resource guide containing
of organizations, associations, products,
and services for families who have
kids with disabilities.
To receive a free copy, call (800)
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.
Links to each state's
child and teen health insurance
program website. Available in
English and Spanish. Telephone:
(877) 543-7669 (KIDS-NOW).
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
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
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.
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,
and experienced veteran parents
who have shared the experience
of disability in the family. P2P
also offers technical assistance
resources to parents interested
in building, improving, and evaluating
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.
Create a free, personal, private
web page to help families and friends
communicate when someone is receiving
care. Also offers
discussion forums, blogs, stories of inspiration, and tips on how
to support a loved one.
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.
Resources include message boards,
blogs, and online lectures.
National Respite Network and Resource
Fact sheets, training
manuals, and evaluation guides
about respite services for caregivers
Also contains contact information
for state respite
a tool for
locating community respite services.
Center on Disability: Wisdom-Based
for families about planning
the transition from early intervention
advocating for care coordination,
and gaining emotional well-being.
Also includes resources that address
needs of Asian-American families, kids who
have cochlear implants,
and people seeking customized
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 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.
Articles about technology,
health care, education, family
and community, financial planning,
mobility, sports and recreation,
and other issues for families.
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,
activities, education, legal issues,
respite care, disability-related
media and literature, online discussion
groups, and parent-to-parent matching
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.
Home Portal. Information about responding to
a diagnosis, siblings of kids with special health
care needs, managing and coordinating
terminology, record keeping, newborn
screening, and specific
diagnoses and conditions.
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.
Support Project. Information about its program and
workshops for the siblings of kids
with special health care needs and
developmental needs. Includes online
groups for siblings and parents. Also presents
publications for purchase that are
for and about siblings.
Security Online: Benefits
for Children With Disabilities.
Information for the
of kids and teens under age
18 who have disabilities that
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
Training of Military Parents (STOMP).
Fact sheets and other
materials and an online
discussion group for military
families of kids with
care needs. Search by state to
parents of kid with special
health care needs and have experience
in raising their kids in military
and traveling with their spouses
to different locations.
- Also see the MCH Library's knowledge
Insurance and Access to Care for Children
and Adolescents and the organization list, Family
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.