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Strengthening the evidence for maternal and child health programs

Children and Youth with Special Health Care Needs

Professional Resource Guide

This professional resource guide 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

Websites

Reports, Guides, and Other Electronic Resources

Resources on the Core Components

This section presents resources on the Core Components of an Effective System of Care for Children and Youth with Special Health Care Needs for 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 and 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 and Youth 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, Developing Structure and Process Standards for Systems of Care Serving Children and Youth with 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.

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.
  • Further reading: Search the MCH Digital Library's online catalog MCHLine® using the online search form. In the keyword field, type "special health care needs" "medical home". Set publication date limits to further limit your search.

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.

4. Early and Continuous Screening and Referral

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

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.

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.
  • Further reading: Search the MCH Digital Library's online catalog MCHLine® using the online search form. In the keyword field, type "special health care needs" transition. Set publication date limits to further limit your search.

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).

Resources on Other Aspects of Care and Development

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.
  • MCH Digital Library: MCH Organizations Database. Information about government, professional, and voluntary organizations involved in MCH activities, primarily at a national level. To identify information about a chronic illness or disability, type its name in the keyword field of the search form.
  • 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.
  • Family Voices (FV): IMPACT on Health and Wellness for Families. Information about physical and emotional health and wellness by age group or stages of development and by theme (i.e., family support, child development, mental health, healthy weight, healthy food and eating, physical activity, oral health, healthy sexual development and sexuality, safety and injury prevention, and community relationships and 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 the MCH Digital Library professional resource guides, 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 nutrition program 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.
  • Search the MCH Digital Library's online catalog MCHLine® using the online search form. In the keyword field, type "special health care needs" "physical activity".

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

Journal Articles and Other Literature and Research

Programs

MCH Digital Library Guides on Related Topics

Resources for Families

See the MCH Digital Library family resource brief Kids and Teens with Special Health Care Needs.

Resources for Child Care, Early Childhood Programs, and Schools

See the MCH Digital Library resource brief Children and Youth with Special Health Care Needs.



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

Author: Susan Brune Lorenzo, M.L.S., MCH Digital Library.
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., MCH Digital Library.
Contributors: Beth DeFrancis Sun, M.L.S., MCH Digital Library; Tracy Lopez, M.S.L.S., MCH Digital Library.
Editor: Ruth Barzel, M.A., MCH Digital Library.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.