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Caring for Your Child

Partnering With Your Child's Provider

Tips on communicating with your child’s providers focused in the following areas: Preparing For An Office Visit, Talking With Your Child’s Provider, Learning More (after the visit with the provider), and Helping Your Provider Help Other Families.

Bright Futures

Resources and materials for families and communities to promote and improve the health and well-being of all children.

Dental Health Issues for Children, Including Children with Special Health Care Needs

Thoughts and tips for families to ensure good dental health for their children.

Disasters and Emergencies: Keeping Children and Youth Safe

Tips & Links to resources for planning for emergencies.

Quality Health Care for Children with Special Health Care Needs

A one page handout for families, providers, and professionals that defines key elements of quality health care for children with special health care needs, based on 6 Family Voices principles.

Employment and Benefits

Resources to help families explore work benefits, and balance work with caring for their children with special health care needs developed from interviews with employers and parents.

Who are Children with Special Health Care Needs?

Definition of Children with Special Health Care Needs from the Maternal and Child Health Bureau.

Family-Centered Care

Definition and Principles of Family-Centered Care from the Maternal and Child Health Bureau.

Family-to-Family Health Information Centers

A description of Family-to-Family Health Information Centers, including contact information for centers in the states.

Bridges Not Boundaries: Family Voices in SCHIP Telehealth Report

A 10-page booklet for families which includes a report summary, a Family Checklist of Questions to Ask, a Family Satisfaction Questionnaire, Recommendations from Family Voices, and further Questions.

Kids As Self Advocates

A bi-monthly newsletter with information of interest to children and youth with disabilities and special health care needs and those who work with us and care about us.

"What Does Normal Mean?"

Three award-winning documentary filmmakers visited elementary, middle, and high schools in urban and rural communities in New Mexico. The 60 minute documentary film "What Does Normal Mean?" follows seven students with disabilities through an academic year as they attend regular classes with their friends.

Family Voices in Your State

For families caring for children and youth with special health care needs, other families are often the best source of information and support. Family Voices Network Members in each state often provide information to other families and/or referral to parent to parent centers or other community resources.

Beach Center

Through excellence in research, teaching and technical assistance, and service in Kansas, the United States of America, and globally, and through collaborations with those individuals and entities dedicated to the same ends, the Beach Center on Disability will make a significant and sustainable difference in the quality of life of families and individuals affected by disability and of those who are closely involved with them

CEC ERIC Clearinghouse on Disabilities and Gifted Education

Information center on disabilities and gifted education; fact sheets, searchable database, FAQs, etc.

Disability Resources on the Internet

Disability Resources, inc. is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently. Provides information about books, pamphlets, magazines, newsletters, videos, databases, government agencies, nonprofit organizations, telephone hotlines and on-line services that provide free, inexpensive or hard-to-find information to help people with disabilities live independently.

Exceptional Parent Magazine

Online magazine site providing information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them

Internet Resources for Special Children (IRSC)

The IRSC web site is dedicated to children with disabilities and other health related disorders worldwide. Providing numerous categories and links, Online Communities - a place where you can ask questions or share information, access to recent news articles, and books.

National Dissemination Center for Children with Disabilities (NICHCY)

A federally-funded center information on: disabilities in infants, toddlers, children, and youth; IDEA, which is the law authorizing special education; No Child Left Behind (as it relates to children with disabilities); and research-based information on effective educational practices.

SHARE Network

Purpose: To enable families and friends of persons with special needs to acquire services or equipment without financial restriction. This includes respite, transportation, home help, personal care, equipment and/or any other service an individual may need. Providing education. To allow those who want to make a difference and volunteer their time and skill, services, or equipment, to have an avenue to do so. To provide a means for exchanging equipment or services. To provide a free advertising of low cost or free services and equipment, or services and equipment available for exchange.

Alphabetic List of Specific Diseases/Disorders

Alphabetical Index of diseases and disorders providing links to a variety of information (medical, patient info, support groups, etc) for each listing

American Medical Association

The largest physician's group in the U.S.; find physicians, literature, information about initiatives, and more.

CEC ERIC Clearinghouse on Disabilities and Gifted Education

Information center on disabilities and gifted education; fact sheets, searchable database, FAQs, etc.

Drug Infonet

Provides drug and disease information.

Hospitality Homes in Boston

Helping to provide no cost housing to the families of patients traveling to Boston for medical treatment at one of the areas medical facilities.

Kids' Health

KidsHealth provides doctor-approved health information about children from before birth through adolescence. Created by The Nemours Foundation's Center for Children's Health Media. Separate areas for kids, teens, and parents - each with its own design, age-appropriate content, and tone. Features articles, animations, games, and resources.

Medline (National Library of Medicine) National Databases

PubMed, a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950's. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.

National Medical Association

The NMA promotes the collective interests of physicians and patients of African descent. This mission is carried out by serving as the collective voice of physicians of African descent and a leading force for parity in medicine, elimination of health disparities and promotion of optimal health.

National Medical Society's Multimedia Reference Library

Info and links to medical journals, textbooks, resource books, and online databases.

National Organization for Rare Diseases (NORD)

The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD provides information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.

Neonatology on the Web

Reference materials, resources, job listings in the field of neonatology (medical care of newborns).

National Institutes of Health

The National Institutes of Health is the steward of medical and behavioral research for the Nation. It is an Agency under the U.S. Department of Health and Human Services.

RxList - The Internet Drug Index

Information about medications.

American Public Health Association

Oldest and largest organization of public health professionals in the world, representing more than 50,000 members from over 50 occupations of public health. Focuses on a broad set of issues affecting personal and environmental health, including federal and state funding for health programs, pollution control, programs and policies related to chronic and infectious diseases, a smoke-free society, and professional education in public health. Find publications, links, state and world organizations.

Bazelon Center for Mental Health Law

The mission of the Judge David L. Bazelon Center for Mental Health Law is to protect and advance the rights of adults and children who have mental disabilities. The Center envisions an America where people who have mental illnesses or developmental disabilities exercise their own life choices and have access to the resources that enable them to participate fully in their communities.

Council for Exceptional Children (CEC)

The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. CEC advocates for appropriate governmental policies, sets professional standards, provides continual professional development, advocates for newly and historically underserved individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

Court Appointed Self Advocates

The National Court Appointed Special Advocate (CASA) Association mission is to speak for the best interests of abused and neglected children who are involved in the juvenile courts.

Community Catalyst

Community Catalyst is a national non-profit advocacy organization working to build the consumer and community leadership that is required to transform the American health system. The organization works with advocates across the country to make sure consumers have a role in transforming health care in their communities.

Families USA

A national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.