Children and Youth with Special Health Care Needs

Knowledge Path

This knowledge path about caring for children and youth with special health care needs presents 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.

Resources for Professionals

Overview

See the Maternal and Child Health Bureau (MCHB) publication, National Survey of Children with Special Health Care Needs Chartbook 2009–2010 (2013) 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 and youth, the types of health and support services they and their families need, and their access to health care and the quality of the care they receive. The introduction 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."

See Children with Disabilities (Future of Children; v. 22, no. 1, spring 2012) for a series of articles exploring the prevalence, nature, treatment, and consequences of childhood disability for families and within the context of the nations's educational, health insurance, and medical systems. Includes recommendations for researchers and policymakers.

Websites

  • American Academy of Pediatrics (AAP): Council on Children with Disabilities.Policies, articles, webinars, training materials,toolkits, and guides about caring for children andyouth with disabilities and supporting their families within a medical home. Topics include policy, advocacy, autism, surveillance, screening, early intervention, and health care transitions.
    Also see the National Center for Medical Home Implementation.
  • Association of University Centers on Disabilities (AUCD). Program, funding, legislative, training, and conference information to advance policy and practice for and with people with developmental and other disabilities, their families, and communities. Resources include reports, brochures, program directories, and other publications; newsletters and discussion groups; a webinar library; a portrayal of people with disabilities; and resources on public policy issues of concern to people with disabilities, such as health care reform, abuse and neglect, civil rights, emergency preparedness, postsecondary education, transition, and prevention and wellness.
  • Centers for Disease Control and Prevention (CDC). A wealth of information and resources in English and Spanish about diseases, disabilities, health risks, and health promotion. Use CDC's A to Z Index to find information.
    National Center on Birth Defects and Developmental Disabilities (NCBDDD). Information about surveillance, research, technical assistance, and health education activities on birth defects and developmental disabilities and promoting health and well-being among people of all ages with disabilities. Includes screening and diagnostic tools and information, guidelines and recommendations, journal articles, developmental milestone checklists, materials for families, andpersonal stories from people affected by disability.
  • Georgetown University Center for Child and Human Development (GUCCHD). Program, conference, and training information; publications; and other resources about developing effective services and supports within comprehensive service delivery systems to improve quality of life for children and youth with special health care needs and their families. Topics include cultural and linguistic competence, early childhood development, early intervention, developmental disabilities, mental health, advocacy, and leadership.
  • National Institutes of Health (NIH). A wealth of resources for those seeking information about people with special health care needs. Navigate using the program summary that links to each of NIH's 27 institutes and centers. See the NIH RePORTER for access to reports, data, and analyses of NIH research activities.

Core Components of an Effective System of Care

Family-professional partnerships, medical home, insurance and financing, early and continuous screening and referral, easy to use services and supports, transition to adulthood, cultural competence

This section presents resources to support the core components of the structure and process of an effective system of care for children and youth with special health care needs identified by the National Consensus Framework for Systems of Care for Children andYouth with Special Health Care Needs Project. See Standards for Systems of Care for Children and Youth with Special Health Care Needs (2014) and its companion background white paper, DevelopingStructure and Process Standards for Systems of Care Serving Children and Youthwith Special Health Care Needs (2014).

1. Family-Professional Partnerships

Families of children and youth with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive.

Family Voices (FV). 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.
National Center for FamilyProfessional Partnerships. Tools and resources to help families andprofessionals partner in decision-making abouthealth carefor children and youth with specialhealthcare needs.
Also see FV's IMPACT on Health and Wellness for Families, Kids As Self-Advocates (KASA), Family to Family Health Information Centers (F2F HICs) and Family Voices in Your State.

2. Medical Home

Children and youth with special health care needs will receive family-centered, coordinated, ongoing comprehensive care within a medical home.

National Center for Medical Home Implementation. Resources about the medical home approach to high-quality, comprehensive health care for all children, including those with special health care needs. Includes tools for developing and implementing a medical home, training programs and materials, information about national and state initiatives, screening tools, and an electronic newsletter.

Medical Home Portal. Information and tools to help build a better medical home, screen for medical problems, prevent chronic conditions and their complications, learn about medical devices, and help children and their families get the most from their school experience and plan for transitions. Includes information about newborn screening and specific diagnoses and conditions.

3. Insurance and Financing

Families of children and youth with special health care needs have adequate private and/or public insurance and financing to pay for the services they need.

Association of Maternal and Child Health Programs (AMCHP): State Title V Profiles. Summaries of how the Title V Maternal and Child Health Services Block Grant works in each state and territory. Each state profile lists the federal Title V funds appropriated, programs funded with Title V dollars, and the number of pregnant women, infants under one, children and adolescents, children with special health care needs, and others served.

Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs. Publications, data, presentations, and tutorials for policymakers, program administrators, and health professionals about improving health care coverage and financing for children and adolescents with special health care needs. Presents strategies to cover more children and youth, close benefit gaps, pay for additional services, and build capacity. Includes resources about the impact of the ACA on children and adolescents with special health care needs and their families.

National Disability Navigator Resource Collaborative (NDNRC). Information to assist Navigators and other health insurance enrollment specialists in helping people with disabilities and their families obtain accurate information when selecting and enrolling in insurance through the ACA Marketplaces.

Also see NCEMCH knowledge paths, Health Insurance and Access to Care for Children and Adolescents and Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid and the resource brief, Patient Protection and Affordable Care Act (ACA).

4. Early and Continuous Screening and Referral

Children are screened early and continuously for special health care needs.

See NCEMCH resource brief, Screening, and the knowledge path, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid.

5. Easy to Use Services and Supports

Services for children and youth with special health care needs will be organized in ways that families can use them easily and include access to patient and family-centered care coordination.

National Center for Ease of Use of Community-Based Services. Information on policy and practice solutions that improve ease of use of community-based services for families with a child with special health care needs. Includes an ease-of-use framework, a bibliography, and tools to secure funding, measure success, and identify innovative solutions.

Also see the CommunityServices Locator: An Online Directory for FindingCommunity Services for Children and Families.

6. Transition to Adulthood

Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

Got Transition. Tools and guidance for implementing best practices to support the transition from pediatric to adult health care for all youth including those with special health care needs. Includes transition information and resources for youth and families and data and information about transition innovations at the state level for policymakers.

Healthy Transitions. Tools in English and Spanish to help youth with developmental disabilities, families, and health professionals develop skills for transitioning from pediatric to adult health care. Resources cover scheduling an appointment, scheduling transportation, completing paperwork at the sign-up desk, calling in a prescription refill, 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.

HEATH Resource Center at the National Youth Transitions Center: Online Clearinghouse on Postsecondary Education for Individuals with Disabilities. Publications, a toolkit, and online learning modules for people with disabilities, guidance and career counselors, and college faculty and administrators about educational support services, policies, procedures, adaptations, and opportunities in college or university campuses, career-technical schools, or other postsecondary programs.

Institute for Community Inclusion (ICI). Tools and publications for people with disabilities, families, educators, employment specialists, community groups, and policymakers about including people with disabilities in school, work, and community activities. Topics include disability policy, education and transition, employer issues, employment data, employment success stories, health care, job search and career advancement, national and community service, work-force centers, organizational change, self-determination, Social Security and other benefits, and state systems and employment.

National Collaborative on Workforce and Disability for Youth (NCWD/Youth). Resources for state and local work-force development systems to help transition-age youth gain education and employment and achieve independent living. Includes a framework for the five critical components of youth transition and innovative strategies for implementation; strategies and tools for professional development, youth development and leadership, and work-force development; legislative information; research reviews; an electronic newsletter; and more.

National Council on Independent Living (NCIL). Legislative and policy news, advocacy tools, and training information to secure full inclusion and equality for people with disabilities. Includes a directory of Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) in each state and territory.

National Secondary Transition Technical Assistance Center (NSTTAC). Evidence-based practices, capacity-building tools, lesson plan starters, publications, and other resources to help state agencies, educators, students, and families improve transition planning, services, and outcomes for youth with disabilities.

Social Security Ticket to Work. Career development resources for people with disabilities and their families, employers, health and social services professionals, and advocates.

7. Cultural Competence

All children and youth with special health care needs and their families will receive care that is culturally and linguistically appropriate (attends to racial, ethnic, religious, and language domains).

See NCEMCH resource brief, Culturally Competent Services.

Resources on Other Aspects of Care and Development: advocacy; chronic illnesses and disabilities; general health, wellness, and safety; hospitals and patient travel and lodging; nutrition; rehabilitation; sports, physical activity, recreation, and the arts; universal design

Advocacy

Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS). Information and 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 challenging behavior in schools, treatment programs, and residential facilities. Includes steps parents can take to protect their children from abusive interventions.

The Arc. Information and resources for people with intellectual and developmental disabilities and their families, educators, advocates, lawmakers, and the media to advocate for civil rights, education, employment, health care, housing, long term supports and services, transition, and more for people with intellectual and developmental disabilities. Includes contact information for state and local chapters.

Department of Health and Human Services: Health Information Privacy. Information about the rights and protections provided by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule.

Department of Justice: Americans with Disabilities Act (ADA). Information and resources about the ADA and disability rights laws, ADA requirements, and ADA enforcement. ADA Information Line: Telephone (800) 514-0301; (800) 514-0383 (TTY).

Family Voices (FV): Kids As Self-Advocates (KASA). Articles, tip sheets, guides, personal narratives, and Spanish-language resources about leadership and self-advocacy from this national grassroots network of youth with special health care needs.
Also see Family Voices in the Family-Professional Partnership section above.

National Council on Disability (NCD). Reports and policy briefs advising the president, Congress, and other federal agencies about policies, programs, practices, and procedures that affect people with disabilities. Topics include abuse and neglect, appropriations and the federal budget, assistive technology, community integration, criminal justice, disaster management, education, employment, housing, juvenile justice, Medicare and Medicaid, mental health, traumatic brain injury, vocational rehabilitation, voting. civil rights, cultural diversity, education, emergency preparedness, employment, financial assistance and incentives, health care, housing, long term services and supports, technology, transportation, and youth perspectives.

National Disability Rights Network (NDRN). Training information, legislative news, and other resources for people with disabilities, their families, and disability advocates. Topics include abuse and neglect, appropriations and the federal budget, assistive technology, community integration, criminal justice, disaster management, education, employment, health care, juvenile justice, mental health, immigration, traumatic brain injury, vocational rehabilitation, and voting.

Chronic Illnesses and Disabilities

KEY RESOURCE National Library of Medicine (NLM): MedlinePlus. Links to information in English and Spanish on over 900 diseases, illnesses, health conditions, and wellness issues. Also includes prescription and nonprescription drug information; a medical encyclopedia; a medical dictionary; health news; health directories; video clips, tutorials, health calculators, and other tools on common conditions, tests, and treatments; and health information in multiple languages.

Center for Parent Information and Resources (CPIR): About Specific Disabilities. Fact sheets in English and Spanish on specific disabilities and a collection of resources on topics ranging from accommodations to transition. Also presents contact information for the Parent Training and Information Center (PTI) and Community Parent Resource Center (CPRC) in each state and a national PTI for military families. PTIs and CPRCs offer information about disabilities, early intervention (for babies and toddlers), school services (for school-aged children), therapy, local policies, and much more. PTIs and CPRCs also offer free advocacy and training on a variety of topics such as advocacy in schools and how to partner with professionals to meet children's needs.

Exceptional Parent Magazine Annual resource guide containing directories of organizations, associations, products, and services for families who have children with disabilities.

National Organization for Rare Disorders (NORD): Patient Organizations Database. Information about organizations that help people with rare diseases.

General Health, Wellness, and Safety Resources

American Association on Health and Disability (AAHD). Information and resources for professionals and families to improve overall health and reduce health disparities for children and adults with disabilities through health promotion and wellness. Includes best practices program information, data, journal articles, a newsletter, fact sheets, webinars, policy updates, and state resources.

Bright Futures. Guidelines and tools for preventive health supervision and health screening for infants, children, and adolescents, including those with special health care needs. Includes health visit forms; developmental, behavioral, and psychosocial screening and assessment forms; an oral health risk assessment tool; and practice guides.

Centers for Disease Control and Prevention (CDC): Disability and Health. Tips, fact sheets, and other resources for people with disabilities and their families about nutrition, physical activity, healthy weight, and other aspects of healthy living; accessibility; and emergency preparedness.

FamilyVoices (FV): IMPACT on Health and Wellness for Families.Information about physical and emotional health and wellnessbyagegroup or stages of development and by theme(i.e., family support, child development, mental health,healthy weight,healthy foodand eating, physical activity, oral health, healthy sexualdevelopment and sexuality, safety and injury prevention,and community relationshipsand resources). A guide for families is available in English and Spanish.

Healthy People 2020. Information about this national health-promotion and disease-prevention initiative of the Department of Health and Human Services. View the overview, objectives, recommended interventions and resources, a national statistical snapshot, and national data for disability and health. Scan the topics and objectives index for specific conditions.

KidsHealth. A wealth of physician-approved information in English and Spanish for parents, children, and youth about health, emotions and behavior, growth and development, and positive parenting. The site contains articles about specific disabilities and chronic illnesses as well as information pertinent to all families.

See MedlinePlus.

Also see NCEMCH knowledge paths, Health and Wellness for Adolescent Girls and Women with Mental and Behavioral Health Conditions and Social and Emotional Development in Children and Adolescents.

Hospitals and Patient Travel and Lodging

Chai Lifeline. Hospital and home based services, including meals and transportation, for families with seriously ill children. Also offers counseling, educational assistance, camps, recreational activities, and trips.

Children's Hospital Association. 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 presents resources about quality, patient safety, health promotion, and public policy; analytics and research; and information about conferences and educational opportunities.

Healthcare Hospitality Network (HHN). National directory of nonprofit organizations that provide lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities.

National Patient Travel Center. Information about charitable long-distance medical transportation to specialized medical evaluation, diagnosis, or treatment.

Ronald McDonald House Charities (RMHC). Services for families of children with special health care needs including Ronald McDonald houses located near hospitals that host families who have a hospitalized child at little or no cost. Offers an online directory of local chapters worldwide.

Shriners Hospitals for Children. Information about this network of hospitals that provide care to children and youth with orthopedic conditions, burns, spinal cord injuries, or cleft lip and palate, regardless of a family's ability to pay.

Transportation Security Administration (TSA): TSA Cares. Toll-free helpline to provide information and assistance to passengers with disabilities and medical conditions and their families before they fly. Telephone: (855) 787-2227. E-mail: TSA-ContactCenter@dhs.gov.

Nutrition

Rehabilitation

ABLEDATA. Information about assistive technology (AT) products and rehabilitation equipment; the companies that make or sell the products and equipment; conferences; and organizations, publications, research literature, and news about AT and other disability-related issues.

assistivetech.net: National Public Website on Assistive Technology. Online library of AT and disability-related resources that is browsable by function, activity, and vendor. Includes information about state AT programs, an AT Wiki, and a list of discussion groups about AT and disability.

Family Center on Technology and Disability (FCTD). Information about AT, AT and Individualized Education Programs (IEPs), AT laws, and AT solutions. Includes AT and instructional technology resource reviews, a glossary, an organizations database and Spanish-language materials.

National Rehabilitation Information Center (NARIC). Online library of articles, reports, curricula, guides, and other publications and tools; organizations; and research projects about disability and rehabilitation.

Pass It On Center: National AT Reuse Center. Contact information for organizations that facilitate used AT product exchange.

Tots 'n Tech Research Institute (TnT). Research-based information and tools to help state agencies, early intervention programs, and families use adaptations, including AT, to enhance the development of infants and young children with disabilities.

Sports, Physical Activity, Recreation, and the Arts

BlazeSports America. Resources for families, coaches, and communities about providing children and adults with physical disabilities the chance to play sports and live healthy, active lives. Includes program and event information and tools for creating accessible sport, fitness, and physical activity environments. Also includes information about advocacy, program development, and coaching.

Disabled Sports USA. National network of community-based chapters offering a variety of sports and recreation programs to people with disabilities.

National Center on Accessibility (NCA). Resources for families, health professionals, parks and recreation facility managers, and the business community about access and inclusion for people with disabilities in parks, recreation, and tourism. Includes technical reports, educational materials, and a directory of accessible products and services.

National Center on Health, Physical Activity, and Disability (NCHPAD). Fact sheets, articles, and other resources about physical activity, recreation, and sports for people with disabilities. Includes a personalized online physical activity and nutritionprogram for people with disabilities.

Special Olympics. Program and event information for year-round sports training and athletic competitions for children, youth, and adults with intellectual disabilities. Includes sports rules, program guides, coaching guides, articles, and a program locator. Special Olympics also offers health screenings and education to its athletes and trains health professionals about the needs and care of people with intellectual disabilities.

VSA: The International Organization on Arts and Disability. Initiative to provide arts and education opportunities for people with disabilities and increase access to the arts for all. Includes contact information for national and international program affiliates and tips, guides, and other resources for educators, parents, artists, and arts administrators.

Universal Design

Center for Inclusive Design and Environmental Access (IDeA Center). Publications, training tools, and research information about making environments and products more usable, safer, and healthier for groups who have been marginalized by traditional design practices, such as people with disabilities and older adults.

Institute for Human Centered Design (IHCD). Resource lists, newsletters, and events about the role of design in expanding opportunity and enhancing experience for people of all ages and abilities. Includes information about the history and principles of universal design.

United States Access Board. Guidelines and standards for accessible design for people with disabilities and information and communication technology, the built environment, recreation facilities, streets and sidewalks, transportation, and health care.

Also see the National Center on Accessibility (NCA).

Training

Data and Statistics

Child and Adolescent Health Measurement Initiative (CAHMI): Data Resource Center for Child and Adolescent Health (DRC). Data from the National Survey of Children's Health and the National Survey of Children with Special Health Care Needs. Browse national and state findings on hundreds of child health indicators, or download state snapshot profiles. See National Survey of Children with Special Health Care Needs Chartbook 2009–2010 (2013).

Research and Training Center on Disability Statistics and Demographics (StatsRRTC): Annual Disability Statistics Compendium. Disability statistics published by various federal agencies. Topics include population and prevalence, employment, time trend population statistics, poverty, earnings, veterans, health insurance coverage, health, Social Security Administration programs, Medicaid and Medicare, special education, vocational rehabilitation, federal government spending and employment, international disability statistics, and population statistics by disability type.

Search the following databases for access to additional data and statistics about children and youth with special health care needs. NCEMCH resource brief, Maternal and Child Health Data and Statistics, describes these databases and offers tips for searching them.
Child Trends DataBank
Healthcare Cost and Utilization Project (HCUP): HCUPnet
Healthy People 2020: DATA2020
Medical Expenditure Panel Survey (MEPS)
National Center for Education Statistics (NCES)
National Quality Measures Clearinghouse(NQMC)
Title V Information System (TVIS)

Journal Articles and Other Literature and Research

Search the following databases for access to journal articles and other literature and research about children and youth with special health care needs. NCEMCH resource brief, Maternal and Child Health Literature and Research Databases, describes these databases and offers tips for searching them.
Child Care and Early Education Research Connections: Research Collection
Child Welfare Information Gateway
ClinicalTrials.gov
Educational Resources Information Center (ERIC) Database
HuGE Literature Finder
Maternal and Child Health Research Program: Funded Projects Search
Morbidity & Mortality Weekly Report (MMWR)
National Guideline Clearinghouse (NGC)
National Institutes of Health (NIH) Research Portfolio Online Reporting Tool (RePORT): NIH RePORTER
PubMed
PubMed Health
Rare Disease Database
REHABDATA

Programs

Maternal and Child Health Bureau (MCHB). Information about MCHB's projects and initiatives on behalf of America's women, infants, children, adolescents, and their families. MCHB programs include the Title V block grant to states (see the Title V Information System for state and federal budget and expenditure data for programs and services for children and youth with special health care needs). NCEMCH and the Discretionary Grant Information System (DGIS) offer additional information about initiatives and programs supported by MCHB that pertain to children and youth with special health care needs.

Search the following databases to identify additional programs for children and youth with special health care needs. NCEMCH resource brief, Maternal and Child Health Programs Databases, describes these databases and offers tips for searching them.
Community Pediatrics Grants Database
Discretionary Grant Information System (DGIS)
Health Care InnovationsExchange
Health Services Research Projects in Progress (HSRProj)
National Institute on Disability and Rehabilitation Research (NIDRR): NIDRR Program Database
National Organization for Rare Disorders (NORD): Patient Organizations Database

NCEMCH Guides on Related Topics

Asthma in Children and Adolescents knowledge path, family resource brief, school resource brief

Autism Spectrum Disorder knowledge path, family resource brief, school resource brief

Bullying resource brief

Child Maltreatment resource brief

Diabetes in Children and Adolescents knowledge path, family resource brief, school resource brief

Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents knowledge path, family resource brief, school resource brief

Environmental Health resource brief

Family Health History resource brief.

Fetal Alcohol Spectrum Disorders resource brief

Genetics resource brief

Lead Poisoning Prevention resource brief

Medications resource brief

Resources for Families

See NCEMCH family resource brief Kids and Teens with Special Health Care Needs.

 

Resources for Child Care, Early Childhood Programs, and Schools

See NCEMCH resource brief Children and Youth with Special Health Care Needs.


Children and Youth with Special Health Care Needs: Knowledge Path, 8th ed. (April 2014). (Updated: August 2014)

Author: Susan Brune Lorenzo, M.L.S., NCEMCH.
Reviewers: Lauren Agoratus, M.A., parent of a child with special health care needs, Family Voices and Family-to-Family Health Information Resource Center at the Statewide Parent Advocacy Network of N.J.; Olivia K. Pickett, M.A., M.L.S., NCEMCH.
Contributors: Beth DeFrancis Sun, M.L.S., NCEMCH; Tracy Lopez, M.S.L.S., NCEMCH.
Editor: Ruth Barzel, M.A., NCEMCH.