Children & Youth With Special Health Care Needs (CYSHCN)

Definition of Children and Youth with Special Health Care Needs

boy with special needsChildren and youth with special health care needs (CYSHCN) are defined by the Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) as:

"those who have or are at increased risk for a chronic physical, development, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally”

This definition is broad and inclusive, and it emphasizes the characteristics held in common by children with a wide range of diagnoses.

Adopted by the AAP (October 1998). McPherson M, Arango P, Fox HB, A new definition of children with special health care needs. Pediatrics. 1998;102:137-140. [Extract] [Full text] [PDF]

Additional literature on CYSHCN can be found on the Medical Home Literature page.

Medical Home Interview Videos New
Developed by the National Center for Medical Home Implementation

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Prevalence of Special Health Care Needs in Children and Youth
  • Childhood disability is increasing and that emotional, behavioral, and neurological disabilities are now more prevalent than physical impairments.i
  • Approximately 10.2 million children in the US, which represents 15 percent of all US children, have special health care needs based on the MCHB definition;ii
  • More than a fifth of US households with children have at least one child with special needs;
  • 16 percent of CYSHCN are reported to not receive all the services they need;
  • More than 94 percent of CYSHCN have a regular source of care when they are sick. For 78 percent this is a private doctor's office; for 13 percent it is a clinic or health center; and for almost 4 percent it is another setting.

i The Future of Children, Spring 2012
ii 2009/10 National Survey of Children with Special Health Care Needs

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Health Services Use and Health Care Expenditures for Children With Disabilities
Newacheck PW, Inkelas M, and Kim WE. Pediatrics. 2004;114:79-85.
FINDINGS: Our findings demonstrate that the 7.3% of US children with disabilities used many more services than their counterparts without disabilities in 1999-2000. As a result of their greater use, children with disabilities also had much higher health care expenditures ($2669 vs $676) and higher out-of-pocket expenditures ($297 vs $189).

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National Survey of Children with Special Health Care Needs, 2001, 2005-2006, 2009-2010
The primary goals of this survey module are to assess the prevalence and impact of special health care needs among children in the US, and to evaluate change since its inception in 2001. This survey explores the extent to which children with special health care needs (CSHCN) have medical homes, adequate health insurance, access to needed services, adequate care coordination, and that parents are satisfied with their child’s care.

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Profile of Medical Charges for Children by Health Status Group and Severity Level in a Washington State Health Plan
Neff JM. Sharp VL. Muldoon J. Graham J. Myers K. Health Services Research. 2004;39(1):73-89.
Children classified as healthy (85.2 percent) had mean and median annual charges of dollar 485 and dollar 191. Children with one or more chronic conditions (9.5 percent) had mean and median charges increasing by status and severity group from dollar 2,303 to dollar 76,143 and from dollar 1,151 to dollar 19,456, and accounted for 45.2 percent of all charges.

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Prevalence and Characteristics of Children with Special Health Care Needs
Peter C. van Dyck MD, MPH, Michael Kogan, PhD, Merle McPherson MD, Gloria R. Weissman, MA, Paul W. Newacheck, DrPH. Archives of Pediatrics & Adolescent Medicine. 2004;158.

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Prevalence of Birth Defects in the United States
A study updates the national prevalence estimates for selected birth defects. Key findings include: Down syndrome was the most common condition found in this study, with a national prevalence of 14.47 per 10,000 live births (approximately 6,000 diagnoses of Down syndrome each year in the US). In addition, about 7,000 babies are born each year in the US with a cleft palate, cleft lip or both. For a table showing the estimates for all of the birth defects included in the study click here.

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Snapshots of Health Disparities for CSHCN (2007)
Nearly 1 in 5 US children now have a chronic condition requiring above routine services or special health care services. These CYSHCN are especially vulnerable to weaknesses in the health care system. Data from the most recent MCHB National Survey of Children's Health show that CYSHCN experience a wide range of disparities in health status, in accessing health care and quality of care, and in school related outcomes compared to other children. Learn about and advocate for CYSHCN in your state using new CYSHCN disparities profiles available through the Data Resource Center Web site and based on the 2007 National Survey of Children's Health. These customizable profiles allow easy comparisons between children with special health care needs and non-special needs children on numerous health indicators. Reports can be downloaded for your use and easy dissemination.

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Who Are Children with Special Health Care Needs? (2007) PDF
Data Resource Center for Child & Adolescent Health

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Information for Families

Communicating with your Pediatrician

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Additional Resources

  • The Center for Children with Special Needs—Seattle Children's
    The mission of The Center for Children with Special Needs is to improve and promote the health and well being of children with special health care needs and their families. The Center focuses on providing information to families and health care professionals.
  • Children and Youth with Special Healthcare Needs Toolkits
    National Initiative for Children’s Healthcare Quality (NICHQ)
    These toolkits help providers and families better support their care and help to develop community-based systems that address their needs. Of relevance to medical home is the General Tools and Tips for Families of Children and Youth with Special Healthcare Needs toolkit for families.
  • Family Voices
    Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through a national network, Family Voices provide families with tools to 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.
    • Family to Family Health Information Centers (F2F HICs)
      F2F HICs provide health care information to families that is family friendly and culturally sensitive, in order to help them make good health care decisions. They are run by experienced parents and supported by private and public funds. Family Voices has helped many of their volunteer network members, all of them parents, develop F2FHIC's around the country..
  • Information Connections
    A Web site for parents of children with developmental disabilities and chronic diseases was developed by the Marianjoy Medical Library with funding from the National Library of Medicine.It serves as an information portal to resources and websites with a special focus on autism, cerebral palsy, ADHD, Down syndrome, and traumatic brain injury, among others.
  • Kids Enjoy Exercise Now (KEEN)
    KEEN is a national, nonprofit volunteer-led organization that provides one-to-one recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families and caregivers. KEEN's mission is to foster the self-esteem, confidence, skills and talents of its athletes through non-competitive activities, allowing young people facing even the most significant challenges to meet their individual goals.
  • Medical Home Portal
    The Medical Home Portal aims to provide ready access to reliable and useful information for professionals and families to help them care and advocate for children with special health care needs (CSHCN), as partners in the Medical Home model. The long-range goal is to improve outcomes for CSHCN and their families by enhancing the availability and quality of healthcare, related services, and coordination of care.
  • National Center for Ease of Use of Community-Based Services
    Addresses policy and practice strategies that improve the ease of use of community-based services for families with a child with a special health care need (CSHCN). The Center focuses on four domains of ease of use: universality, access, value, and affordability.
  • Nutrition Interventions for Children with Special Health Care Needs
    Washington State Department of Health

    This report addresses the growth, nutrition, and feeding of children with or at increased risk for a broad range of chronic conditions who require intervention beyond routine pediatric care. Each chapter contains intervention strategies, outcomes, and references.

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Information for Providers

AAP Council on Children with Disabilities (COCWD)
The COCWD is composed of nearly 500 AAP Fellows who care for or have an interest in CYSHCN. Members of the COCWD are dedicated to the optimal care and development of children with disabilities and to the support of their families within a medical home.

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Additional Resources

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