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Children and Youth with Special Health Care Needs
Knowledge Path

October 2009

Table of Contents

Introduction

Overview

General Resources for Professionals

Resources for Families

Resources on Specific Aspects of Care and Development

Please provide feedback on this knowledge path.

Introduction

This knowledge path about caring for children and youth with special health care needs has been compiled by the Maternal and Child Health Library at Georgetown University. It offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and special education, financing services, rehabilitation, screening, and transition. This knowledge path for health professionals, program administrators, policymakers, educators, researchers, and families will be updated periodically.

Related knowledge paths:
Asthma in Children and Adolescents
Autism Spectrum Disorders
Community Services Locator: An Online Directory for Finding Community Services for Children and Families
Diabetes in Children and Adolescents
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents

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Overview

For information on the prevalence of children and youth with special health care needs in the United States and in each state, the demographic characteristics of these children, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive, see the introduction to the Maternal and Child Health Bureau (MCHB) publication, National Survey of Children with Special Health Care Needs Chartbook 2005–2006 (2008). The overview includes MCHB's widely accepted definition of children with special health care needs: "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."

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General Resources for Professionals

Web Sites

Additional Electronic Publications

Databases

The databases listed below are excellent tools for identifying data, additional literature and research, and programs about the care and development of children and youth 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.

Data
Literature and Research Databases
Programs Databases

Resources for Families

Find Care, Services, and Support

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 Web site that supports and connect 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.

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Web Sites for Families

  • ARCH National Respite Network and Resource Center. Presents 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. Presents 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, children who have received cochlear implants, and individuals seeking customized employment.

  • Center for Children with Special Needs. Provides tips and tools to help families plan, organize, coordinate, and keep track of important information about their children's care. Includes a guide to getting started after a new diagnosis, strategies for coping, emergency preparedness information, care plans for youth, and resources to help families prepare for their children's adjustment and interaction in child care and school.

  • Disability.gov. Links to government resources for people with disabilities on the following topics: civil rights, community life, education, emergency preparedness, employment, health, housing, income support, technology, and transportation. Also find information by state.

  • Exceptional Parent (EP). Contains articles about technology, health care, education, family and community, financial planning, mobility, sports and recreation, and other issues for families. Also see EP's annual resource guide.

  • Family Support Center on Disabilities: Knowledge and Involvement Network (KIN). Presents information about many issues faced by individuals with disabilities and their families. Includes a set of online discussion forums, a monthly electronic newsletter, personal stories, resources for getting involved, and links to Spanish-language resources.

  • 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. Offers materials for families and communities to promote and improve the health and well-being of all children. Also see FV's state contacts and family advocacy tools.

  • Medical Home Portal. Presents information about responding to a diagnosis, siblings of children with special health care needs, managing and coordinating care, family supports, advocacy, terminology, record keeping, newborn screening, and specific diagnoses and conditions.

  • Sibling Support Project. Presents information about its program and workshops for the siblings of children with special health care needs and developmental needs. Includes online discussion groups for siblings and for parents of the siblings. Also presents publications for purchase that are for and about siblings.

  • Social Security Online: Benefits for Children With Disabilities. Presents information for the parents, caregivers, or representatives of children and youth under age 18 who have disabilities that might make them eligible for Supplemental Security Income payments. Also presents information for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance benefits.

  • Specialized Training of Military Parents (STOMP). Presents fact sheets and other materials and an online discussion group for military families of children with special health care needs. Search by state to find contact information for volunteers in each state who are parents of children with special health care needs and have experience in raising their children in military communities and traveling with their spouses to different locations.

  • Also see MedlinePlus and the Drug Information Portal. See too the Maternal and Child Health Library's knowledge path, Health Insurance and Access to Care for Children and Adolescents and the organization list, Family Resource Centers.

  • Note: Many of the resources presented in the following section of this knowledge path, Resources on Specific Aspects of Care and Development, contain information for families.

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Resources on Specific Aspects of Care and Development

Adoption

  • Child Welfare Information Gateway: Adoption. Offers an electronic resource guide on all aspects of domestic and intercountry adoption, including adoption from foster care. Includes information for prospective and adoptive parents; information about searching for birth relatives; and resources for professionals on recruiting adoptive families, preparing children and youth, supporting birth parents, and providing post-adoption services. The gateway is a service of the Department of Health and Human Services (DHHS).

  • North American Council on Adoptable Children (NACAC). Presents information and materials about how to adopt a child, state adoption subsidy programs, parent support groups and other forms of post-adoption support, and adoption-policy education and advocacy. NACAC promotes and supports permanent families for children and youth in the United States and Canada, many of whom have special health care needs and have been in foster care.

  • See the Maternal and Child Health Library's organizations resource list, Adoption and Foster Care, which includes several organizations focused on expanding adoption opportunities for infants, children, and youth with special health care needs.

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Advocacy

  • Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS). Presents fact sheets, articles, position papers, and other resources for families, educators, and policymakers about the risks of using aversive interventions, restraints, and seclusion and the benefits of using positive behavior supports to respond to or control the behavior of children and youth in schools, treatment programs, and residential facilities. Includes steps parents can take to protect their children from abusive interventions.

  • Department of Justice: Americans with Disabilities Act (ADA). Presents information and technical assistance about the ADA. Includes a guide to disability rights laws.

  • Family Voices (FV). Presents resources in English and some in Spanish to help families make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. FV is a national grassroots organization working to achieve family-centered care for all children and youth with special health care needs. Resources and initiatives include

    Families Partnering with Providers: Tips to Help Families Build Effective Partnerships with Their Child's Health Care Providers. (2007). [Booklet].

    Family-Centered Care Self-Assessment Tools. (2008). [Family Tool, Provider Tool, User's Guide].

    Friday's Child. [Electronic newsletter]. Contains information for existing and emerging family leaders on topics such as leadership, mentoring, partnering, and team building.

    Kids As Self-Advocates (KASA). Offers articles, fact sheets, personal narratives, and Spanish-language resources about leadership and self-advocacy from this national grassroots network of youth with special health care needs.

    Title V Toolbox for Family Participation. Includes a collection of state materials and program models to strengthen family involvement in state MCH and children with special health care needs programs.

    Also see FV's Bright Futures for Families, Family to Family Health Information Centers (F2F HICs) and Family Voices in Your State.

  • Federation for Children with Special Needs (FCSN). Presents resources for parents and parent organizations working together on behalf of children and youth with special health care needs and their families. FCSN operates a parent center in Massachusetts that offers a variety of services to parents, parent groups, and others who are concerned about children with special health care needs.

  • National Council on Disability (NCD). Presents reports, position papers, an electronic newsletter, and an online discussion group about guaranteeing equal opportunity for all individuals with disabilities and empowering individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. Topics include the ADA and other civil rights laws, emergency preparedness, employment, health care, technology, and transportation. NCD is an independent federal agency that makes recommendations to the president and Congress on issues affecting all Americans with disabilities and their families.

  • National Disability Rights Network (NDRN). Offers training information, legislative news, and other resources for people with disabilities, their families, and disability advocates for guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, and transportation, as well as within the juvenile and criminal justice systems. NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy Systems and Client Assistance Programs for individuals with disabilities. Recent publications include

    School Is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools. (2009).

  • National Organization on Disability (NOD). Offers information and links to resources about employment, community involvement, politics, religion, education, transportation, health care, technology, and emergency preparedness for individuals with disabilities and their families. Includes guidelines for writing about disability and disability etiquette tips. NOD aims to increase the participation of people with disabilities in all aspects of life by raising disability awareness through programs and information.

  • Kutz GD. 2009. Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers. Washington, DC: Government Accountability Office (GAO). This report provides an overview of seclusion and restraint laws applicable to children in public and private schools, reports on allegations of student death and abuse from the use of these methods, and examines the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained.

  • Also see the Association of University Centers on Disabilities (AUCD) newsletter, Legislative News in Brief, which features weekly updates on what is happening in Congress on issues affecting people with disabilities and their families. See too the Technical Assistance Alliance for Parent Centers (The Alliance).

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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

Use these Web sites to identify resources about a wide range of health, wellness,and safety topics that are applicable to all children and youth, not just those with special health care needs.

Genetics

Hospice and Palliative Care

  • Center to Advance Palliative Care (CAPC). Provides health professionals with tools and training for developing hospital palliative care programs, including pediatric palliative care. CAPC is a national initiative directed by the Mount Sinai School of Medicine, New York.

  • Initiative for Pediatric Palliative Care (IPPC). Presents a curriculum, videotapes, and quality-improvement tools for health professionals aimed at enhancing family-centered care for children and youth living with life-threatening conditions. IPPC is an initiative of the Center for Applied Ethics (CAE), a division of the Education Development Center, Inc.

  • National Hospice and Palliative Care Organization (NHPCO). Offers a national program directory, information about end-of-life care, and tools for quality assessment and performance improvement. NHPCO is a national membership organization that works toward improving end-of-life care and expanding access to hospice care with the goal of enhancing quality of life for individuals dying in the United States and their loved ones.

  • Visiting Nurses Association of America (VNAA). Offers a national directory and information about the services offered by home health and hospice care services. Includes tips on how to select a provider. VNAA is a national association of nonprofit visiting nurse agencies and home healthcare and hospice providers.

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Hospitals and Patient Travel and Lodging

  • National Association of Children's Hospitals and Related Institutions (NACHRI). Offers hospital profiles accessible by geographic region, pediatric specialty, care-delivery program, community-outreach program, camps for children with special health care needs, and current research programs. Also contains materials about financing, quality of care and patient safety, research, and advocacy. NACHRI is a national membership organization of children's hospitals, large pediatric units of medical centers, and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses.

  • National Association of Hospital Hospitality Houses (NAHHH). Contains a national directory of nonprofit organizations that provide family-centered lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities.

  • National Patient Travel Center. Provides information about charitable medical air transportation to specialized medical evaluation, diagnosis, or treatment.

  • Shriners Hospitals for Children. Contains a hospital directory and eligibility and admission guidelines for this network of hospitals that provide no-cost care to children and youth up to age 18 with orthopaedic conditions, burns, spinal cord injuries, or cleft lip and palate.

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Mental Health

Nutrition

Oral Health

Rehabilitation

Screening

Sports, Recreation, and the Arts

  • Disabled Sports USA. Contains program information for this national network of community-based chapters offering a variety of sports rehabilitation and recreation programs to anyone with a permanent disability.

  • National Center on Accessibility (NCA). Presents a webinar series, technical reports, educational materials, articles, products listings, and program information for consumers; health professionals; and the parks, recreation, and tourism industries about recreation-related accessibility issues for people with disabilities. NCA is part of Indiana University's School of Health, Physical Education, and Recreation.

  • National Center on Physical Activity and Disability (NCPAD). Offers a virtual library of resources about physical activity and disability. Includes fact sheets about activities, games, camps, recreational pursuits, and sports that have been adapted to the needs of people with disabilities. NCPAD is located at the University of Illinois at Chicago.

  • Special Olympics. Contains program and event information for year-round sports training and athletic competitions for children, adolescents, and adults with intellectual disabilities. Includes sports rules, program guides, coaching guides, articles, and a program locator. Also describes its Healthy Athletes initiative, which offers health screenings and education to Special Olympics athletes and trains health professionals about the needs and care of people with intellectual disabilities. Special Olympics serves more than 2.5 million individuals with intellectual disabilities in more than 180 countries.

  • VSA arts. Contains information about this national arts-based program in creative writing, dance, drama, music, and the visual arts for people with disabilities to increase disability awareness, encourage expression, improve learning, and grow self-esteem. Resources include publications, guides, and tools for educators, parents, and artists to support arts programming in schools and communities; an artists registry, a database of educational research about the arts and people with disabilities; and links to online interactive exhibits and other Web sites. VSA arts is an affiliate of the John F. Kennedy Center for the Performing Arts. Each year millions of people participate in VSA arts programs through a nationwide network of affiliates and in more than 60 countries around the world.

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Transition

Includes resources about health care, education, employment, and independent living for youth with special health care needs who are transitioning to adult services.

  • Department of Housing and Urban Development (HUD): People with Disabilities. Offers information in English and Spanish for people with disabilities about renting, buying, and making a home accessible, and about fair housing rights.

  • Health Care Transitions. Offers program information, training materials, and other resources for families and professionals about transitioning from pediatric to adult-oriented health care for youth with special health care needs. Health Care Transitions is a project of the Institute for Child Health Policy (ICHP). Recent resources include

    Now That You're In High School: A Health Care Transition Guide for Teens in High School. (2008).

    Talking with Your Doctor. (2008). This online video teaches youth how to communicate more effectively with their health professionals.

    This Is Health Care Transition. (2007). This online video helps youth and young adults with chronic health conditions and their families prepare for the move from pediatric to adult-oriented health care.

  • Healthy and Ready to Work National Resource Center (HRTW). Presents annotated links to a wealth of resources to inform and guide efforts to build a system of care that will ensure successful transitions for youth with special health care needs to the activities and concerns of adult life. Resources include a conference call series and archive, PowerPoint presentations, tools and checklists, and youth-involvement materials. HRTW is headquartered at the Maine State Title V Program. Recent publications include

    Title V MCH 5-Year Needs Assessment & Transition: A Primer for CYSHCN Programs (rev. ed.). (2008). [Issue brief].

    Transition for Youth with Special Health Care Needs: How Do We Get This Done? (rev. ed.). (2009). [Issue brief].

  • Healthy Transitions. Presents tools in English and Spanish for youth with developmental disabilities, families, and health professionals to develop skills for transitioning from pediatric to adult health care. Resources cover scheduling an appointment, getting health insurance, deciding about guardianship, speaking up at a doctor's office, understanding my disability, managing medications, keeping a health summary, looking into service coordination, setting health goals, and finding community resources. Healthy Transitions is a service of the New York State Institute for Health Transition Training.

  • HEATH Resource Center: Online Clearinghouse on Postsecondary Education for Individuals with Disabilities. Presents an online clearinghouse for individuals with disabilities about educational support services, policies, procedures, adaptations, and opportunities in college or university campuses, career-technical schools, or other postsecondary programs. Resources include online training modules, resource lists, a toolkit, and papers. HEATH is part of the George Washington University Graduate School of Education and Human Development.

  • National Center on Secondary Education and Transition (NCSET). Offers a wealth of resources about secondary education and transition issues for youth with special health care needs. Includes issue briefs, resource compilations, and an electronic newsletter for school and transition professionals and health professionals, parent guides, and tools for youth. Topics cover academic standards, accommodations, adolescent literacy, assessment, dropout, graduation, instructional strategies, professional development, student learning strategies, universal design for learning, and work-based learning. NCSET is headquartered in the Institute on Community Integration at the University of Minnesota.

  • National Collaborative on Workforce and Disability for Youth (NCWD/Youth). Offers program information, issue briefs, white papers, guides, training materials, and other resources about employment and youth with disabilities. NCWD/Youth is based at the Institute for Educational Leadership. Resources include

    Innovative Strategies. Presents an online database of promising programs and practices in the work force development system that effectively address the needs of youth with disabilities.

  • National Council on Independent Living (NCIL). Presents legislative news, training and conference information, and links to directories of state centers for independent living. NCIL advocates for independent living and the rights of people with disabilities.

  • National Secondary Transition Technical Assistance Center (NSTTAC). Presents evidence-based practices, a guide to transition assessment, and many other resources to help states improve transition planning, services, and outcomes for youth with disabilities. NSTTAC is located in the Special Education Program at the University of North Carolina at Charlotte, in partnership with Western Michigan University and Appalachian State University.

  • NEXT STEPS Transition Program. Presents a webinar series about transition for parents, students with disabilities, and the professionals who work with them. Next Steps is a product of the Parent Educational Advocacy Training Center (PEATC) in collaboration with Virginia Commonwealth University Rehabilitative Research Training Center.

  • Social Security Online: The Work Site. Contains employment resources for individuals with disabilities and their families, employers, health and social services professionals, and advocates.

  • Technical Assistance on Transition and the Rehabilitation Act (TATRA). Includes parent training project information and resources to help families prepare youth with disabilities for employment and independent living. Topics include transition planning, the adult service system, and strategies that prepare youth for successful employment, postsecondary education, and independent living outcomes. TATRA is a part of the Pacer Center (Parent Advocacy Coalition for Educational Rights).

  • Transition Coalition. Offers resources for professionals and families about the transition from school to adult life for youth with special health care needs. Includes online training modules and materials, descriptions and contact information for models of success, a database of transition tips, and transition-planning guides and workbooks for students and families. The coalition is located at the University of Kansas Department of Special Education.

  • Williams B, Tolbert J. 2007. Aging Out of EPSDT: Issues for Young Adults with Disabilities. Washington, DC: Kaiser Commission on Medicaid and the Uninsured. This issue brief discusses the challenges and implications for young adults with disabilities when they lose their eligibility for EPSDT program benefits.

  • Also see the Rehabilitation Services Administration (RSA).

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Universal Design

  • Center for Universal Design. Contains program information and resources about accessible and universal design in housing, commercial and public facilities, outdoor environments, and products. The Center for Universal Design is a national information, technical assistance, and research center located at North Carolina State University College of Design.

  • United States Access Board. Presents accessible design criteria for the built environment, transit vehicles, telecommunications equipment, and electronic and information technology. The Access Board is an independent federal agency devoted to accessibility for people with disabilities.

  • Also see the National Center on Accessibility (NCA).

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Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health Library.
Reviewers: Lauren Agoratus, M.A., parent of a child with special needs, Family Voices and Family-to-Family Health Information Resource Center at the Statewide Parent Advocacy Network of N.J.; Cheryl Murphy, Depression and Bipolar Support Alliance of Southern Nevada; Olivia K. Pickett, M.A., M.L.S., Maternal and Child Health Library; Suzanne Ripley, parent of children with special needs, National Dissemination Center for Children with Disabilities (NICHCY); Brad Thompson, M.A., parent of a child with special needs, HALI Project and Family Voices; Jacqueline Washington, Mississippi State Department of Health.