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Children and Adolescents with Special Health Care Needs
Knowledge Path

March 2006

Table of Contents

General Resources

Resources on Specific Aspects of Care and Development

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General Resources

Introduction

This knowledge path has been compiled by the Maternal and Child Health Library at Georgetown University. It points to recent, high-quality resources for health professionals and families about caring for children and adolescents with special health care needs. The volume of materials for and about children and adolescents with special health care needs and their families is vast. In this knowledge path, we aim to identify the best resources for each topic. Our criteria for evaluating resources include the accuracy and currency of the information, the authority of the creator of the resource, the objectivity of the material, how well the resource covers the topic, and how easy the resource is to access or obtain. We have tried to identify resources that are available electronically, since electronic information can be accessed by most users at any time and by those without Internet connections in the home or the workplace at the nearest public library or medical facility. We have also tried to identify those resources that serve as the hub for high-quality information on a particular topic (i.e., Web link pages or bibliographies that direct users to other high-quality resources on a topic).

Related knowledge path topics:
Asthma in children and adolescents
Autism spectrum disorders
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
Diabetes in children and adolescents
Locating community-based services to support children and families

Health Hotlines

Web Sites: A-Z

Additional Electronic Publications

Print Publications

See MedlinePlus for a medical encyclopedia, dictionary, and physician directory online.

Databases

The databases listed below are excellent tools for identifying additional literature and research, organizations, Web resources, programs, and other information about the care and development of children and adolescents with special health care needs. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.

Also see the
Americans with Disabilities Act (ADA) Technical Assistance Program, assistivetech.net, the Education Resources Information Center (ERIC) Database, the Education Resource Organizations Directory (EROD), Exceptional Parent (EP), the Family Center on Technology and Disability (FCTD), the Genetic Alliance, healthfinder®, the National Organization for Rare Disorders (NORD), the National Rehabilitation Information Center (NARIC), OMIM™ Online Mendelian Inheritance in Man™, Parents Helping Parents: Helping Children with Special Needs, and the Self-Help Group Sourcebook Online. In addition, several databases are listed in the data section.

Electronic Newsletters and Online Discussion Groups

Also see Health Care Transitions, Kids As Self-Advocates (KASA) , LD Online, the National Dissemination Center for Children with Disabilities (NICHCY), and the National Organization for Rare Disorders (NORD).

  • Connect with Other Kids. Lists online discussion groups for children and adolescents with special health care needs that includes groups for those with specific chronic illnesses and disabilities and those for siblings of children and adolescents with special needs. This service is provided by the National Dissemination Center for Children with Disabilities (NICHCY).

  • Discussion Groups. The list by Assistivetech.net includes online communication opportunities for individuals with disabilities and their families. Some sites address specific health conditions, while others are for certain populations, such as parents of children and adolescents with special health care needs.

  • Family Village. Offers the Coffee Shop, which lists many online communication opportunities for individuals with special health care needs and their families via disability-related mailing lists, discussion groups, family Web sites, and parent-to-parent and sibling-to-sibling matching programs. Also offers a Post Office with electronic bulletin boards to connect parents who are experiencing similar issues related to their children.

  • Friday's Child. This weekly electronic newsletter by Family Voices contains information for existing and emerging family advocates of children and adolescents with special health care needs on topics such as leadership, mentoring, partnering, and team building.

  • Friends' Health Connection (FHC). Provides two support networks: one that connects individuals with similar health care needs and the other that connects family members, friends, and caregivers of those with special health care needs.

  • Linkages. This electronic newsletter from the Center for Children with Special Needs contains articles, resource lists, and news for professionals and families caring for children and adolescents with special health care needs.

  • Links to Other Disability Resources: Magazines, Periodicals, and Other Media. This list by the Center on Human Policy (CHP) includes online magazines, newsletters, and radio programs for and about people with disabilities.

  • Mothers United for Moral Support (MUMS) National Parent-to-Parent Network. Provides a networking system for parents or caregivers of children and adolescents with special health care needs that matches them with other parents whose children have the same or a similar condition. The network includes over 10,000 families from 54 countries covering over 3,500 disorders. Parents can exchange medical information and contact information for doctors, clinics, and medical resources or research programs and can provide each other with emotional support. MUMS also offers a newsletter for families to share and speak out about issues affecting their lives.

  • NCD Bulletin. Published monthly by the National Council on Disability (NCD), this electronic newsletter reports on federal news, issues, and publications about people with disabilities. NCD also offers the NCD Listserv, an electronic discussion group addressing public policy that affects people with disabilities.

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Resources on Specific Aspects of Care and Development
Adolescent Transition
Adoption
Advocacy
Child Care/Early Childhood Programs
Chronic Illnesses and Disabilities
Community Interactions: Community-Based Care and Service Coordination
Cultural Competence
Data About Children and Adolescents with Special Health Care Needs
Education/Early Intervention
Environment
Financing Services and Health Insurance
Foster Care
General Health and Safety Resources
Genetic Services
Hospice and Palliative Care
Hospitals and Patient Travel and Lodging
Medical Home
Mental Health
Nutrition
Oral Health
Parenting and Family Supports
Rehabilitation
Screening
Sports, Recreation, and the Arts
State Information

Adolescent Transition

Includes resources about health care, education, employment, and independent living for adolescents with special health care needs who are transitioning to adult services. Also see the Center for Children with Special Needs, Consortium for Children and Youth with Disabilities and Special Health Care Needs, DisabilityInfo.gov, the National Center for Cultural Competence (NCCC), the National Dissemination Center for Children with Disabilities (NICHCY), the National Institute on Disability and Rehabilitation Research (NIDRR), and the Parent Advocacy Coalition for Educational Rights Center (PACER).

Adoption

  • Child Welfare Information Gateway: Adoption. Offers an electronic resource guide for prospective parents about adopting a child with special health care needs. Also offers program information, publications, and other resources on a wide range of adoption topics for professionals, prospective parents, adoptive parents, adopted people, pregnant women, and birth mothers, fathers, and relatives. The gateway is a service of the Department of Health and Human Services (DHHS).

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Advocacy

Also see the Americans with Disabilities Act (ADA) Technical Assistance Program, DisabilityInfo.gov, Easter Seals, the Genetic Alliance, the National Dissemination Center for Children with Disabilities (NICHCY), the National Health Law Program (NHeLP), the Parent Advocacy Coalition for Educational Rights Center (PACER), Parents Helping Parents: Helping Children with Special Needs, and the Technical Assistance Alliance for Parent Centers (The Alliance).

  • Center on Human Policy (CHP). Contains an extensive collection of bibliographies, fact sheets, position statements, and links to additional resources for and about people with disabilities on topics such as alternative day activities, community supports, disability studies, faith communities and spirituality, family supports, friendships and relationships, gender and disability, housing, education, health care, membership on decision-making bodies, multiculturalism and disability, recreation and leisure, self-advocacy, supported employment, and supported living. CHP is an advocacy and research organization that promotes the rights of people with disabilities to be fully included in community life.

  • Family Voices. Contains resources supporting family involvement in Title V programs; updates on issues affecting the health care of children and adolescents with special health care needs such as SCHIP, managed care, Supplemental Security Income (SSI), and Medicaid; national data; contact information for state programs; and grassroots organizing tip