Children and Youth with Special Health Care Needs
The Maternal & Child Health Bureau describes children with special health care needs as “those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.”1 It is estimated that nearly14% of children, totaling more than 10 million children, in the United States have special health care needs, accounting for one in five households.2 It is likely that increased screening, improved diagnosis, and improved management of chronic conditions allows children to live longer, therefore contributing to increased rates of children diagnosed with special health care needs. However, it is likely that many more children with special health care needs remain unidentified by the health care system for a variety of reasons. For example, as with many health outcomes, communities of color are likely to experience underreporting and greater barriers in accessing services and health care, and thus face a greater burden from chronic conditions. Furthermore, while researchers have learned a great deal about the experiences of children with special health care needs, it is crucial we gain a deeper understanding about the resources these children and families need to be successful. Currently, some of the most salient issues for families of children with special health care needs are identification and treatment of secondary conditions, access to services, improved coordination of services (medical home), family-centered care, and the mental health of children and their families.
Within the Healthy People 2010 objectives, three goals are specifically directed at children with special health care needs:
• Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed. (Baseline 1997: 31% of children aged 4-11; Target 2010: 17%)
• Increase the proportion of children with special health care needs who have access to a medical home. (No baseline figure)
• Increase the proportion of Territories and States that have service systems for children with special health care needs. (Baseline 1997: 15.7% of territories and states; Target 2010: 100%)
There are also several goals related to early screening/intervention, children's mental health, oral health, and maltreatment that are also relevant to children with special health care needs.
Achieving & Measuring Success: A National Agenda for Children with Special Health Care Needs , from the Maternal & Child Health Bureau, outlines the six critical indicators of progress that serve as a foundation for State Title V Children with Special Health Care Needs Programs. These six indicators are: medical home, insurance coverage, screening, organization of services, families' roles, and transition to adulthood.
Programming for Children with Special Health Care Needs
Advocacy :
Early Childhood Intervention:
Federal:
Medical Home:
Minnesota :
Screening:
Transition to Adulthood:
Policy
“Medical home,” a fairly new concept, is one of the most prominent issues surrounding children with special health care needs. The framework, pioneered by advocates for families with special health care needs has become increasingly relevant for several populations. Within the health care reform movement, “medical home” is also being considered as a way to manage the health care of adults with chronic diseases and conditions. For a concise definition of a patient-centered medical home for children with special health care needs, see the framework described by the National Center of Medical Home Initiatives at the American Academy of Pediatrics.
The Women's Policy Center at John Hopkins University has a special project dedicated to the promotion of comprehensive, family-centered systems of care for children with special health care needs and their families. The National Policy Center for Children with Special Health Care Needs is a cooperative agreement between the Maternal and Child Health Bureau, the Health Resources & Services Administration, and the Department of Health & Human Services.
In Minnesota , the Minnesota Governor's Council on Developmental Disabilities is an excellent resource for information regarding the history of and current legislation affecting people with developmental disabilities and their families.
Emerging Issues in Research While much research is still needed to better understand the impact of special health care needs on children and their families, there are a few data sources available to individuals interested in learning more about what we now at present. One resource for data about children with special health care needs and their families is the Survey of Children with Special Health Care Needs . Conducted every four years, alternating with the National Survey of Children's Health, the survey's databank offers national, state, and condition-specific profiles. There are also data available from the National Health Interview Survey on Disability National Health Interview Survey on Disability . Child Stats.gov is a wonderful resource for all data concerning children, with an interactive matrix of health topics and corresponding data sources.
University of Minnesota Involvement
Faculty:
• Ann Garwick, PhD : children with special health care needs, caregiving experiences of families from diverse cultural backgrounds
• Barbara Leonard, PhD, RN : children and adolescents with type 1 diabetes
• Joan Patterson, PhD, MA : behavioral risk factors among youth with cystic fibrosis, child and family adaptation to childhood chronic illness and disability Courses :
• Chronic Illness & Disability in Childhood
Healthy Generations :
• Childhood Asthma, February 2003
• Mental Health of CYSHCN, October 2004
- McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998; 102(1): 137–140.
- U.S. Department of Health & Human Services. Health Resources and Services Administration. Maternal & Child Health Bureau. The national survey of children with special health care needs chartbook 2005-2006. Rockville , MD : U.S. Department of Health & Human Services, 2008.
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