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National Healthcare Disparities Report, 2004

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Individuals With Special Health Care Needs

Individuals with special health care needs include individuals with disabilities, individuals who need chronic care or end-of-life health care, and children with special heath care needs. In the 2003 NHDR, a small amount of information about each of these groups was reported; in the 2004 NHDR, one of these groups, children with special health care needs, is highlighted. The recently available 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) is used to provide more detailed information about disparities in health care for this group. In future iterations of the NHDR, it is anticipated that detailed information about other individuals with special health care needs will be provided.

Studying access to and quality of care for children with chronic conditions is difficult due to the low prevalence of most conditions in children79,80,81. A standard definition of CSHCN was developed in 199580,82. This definition was subsequently used to develop the CSHCN Screener Questionnaire80 and included in the 2001 NSCSHCN83,84. The 2001 NSCSHCN estimated that 12.8% of all noninstitutionalized children, or 9.4 million children, had special health care needs in the United States in 200184.

By definition, children with special health care needs are children that require more medical care because they are less healthy. As a result of requiring more medical care, CSHCN have higher medical expenses, on average, than other children, and their medical expenses make up a disproportionately higher share of children's total health care dollars80,85,86. According to the 2001 NSCSHCN, costs of care for 20.9% of CSHCN caused financial problems for their families84. In addition to financial burdens, families of CSHCN spend considerable time caring for them. An estimated 13.5% of CSHCN had families who spent 11 or more hours per week providing or coordinating care84.

Having higher health care needs makes CSHCN susceptible to access, cost, quality, and coverage weaknesses in the health care system. Studies have documented that poor and racial and ethnic minority children with chronic conditions may experience lower quality care87,88. Children with chronic conditions are reported by their parents to be less likely than other children to receive the full range of needed health services89. Among CSHCN, minorities are more likely than white children to be without health insurance coverage or a usual source of care90.

Many measures of relevance to CSHCN are tracked in the NHDR. The section on children in this chapter includes comparisons of CSHCN with other children on receipt of counseling about physical activity (Figure 4.20) and on parent-provider communication (Figure 4.24). Findings presented here seek to focus on family-centered care and to highlight topics in access to health care of particular importance to CSHCN including:

  • Health insurance
  • Usual source of care
  • Patient perceptions of need
  • Difficulty getting care



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