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Health and Functional Status of Children with Special Health Care Needs

In this Section:
Type of Special Need | Impact on the Child | Missed School Days

The population meeting the broad definition of children with special health care needs is diverse, including children with a wide range of conditions with varying levels of impact. This section describes the types of special needs these children have and the impact of their conditions on both children and their families.

Types of special health care needs are defined here not by the types of conditions or diagnoses that children have, but by the consequences of their conditions—that is, the types of services or treatments that children require or the effect of the condition on the child’s functional abilities.

The survey also asked families about the impact of children’s conditions on their ability to do the things most children of the same age do. This question provides a general measure of the magnitude of the challenges that children with special health care needs experience in their daily lives. Families were also asked to rate the severity of their child’s condition on a 0 to 10 scale.

Finally, the survey measured one specific aspect of impact that is important to all children of school age: the number of days of school missed due to both chronic and acute conditions during the year.

Type of Special Need

The screening questions used in the survey to identify children with special health care needs included five major components. In addition to the existence of a condition that has lasted or is expected to last at least one year, the respondent must report that the child had at least one of the following consequences of the condition:

• The use of or need for prescription medication;
• The use of or need for more medical care, mental health services, or education services than other children of the same age;
• The use of or need for treatment or counseling for an emotional, developmental, or behavioral problem;
• A limitation in the child’s ability to do the things most children of the same age do; or
• The use of or need for special therapy, such as physical, occupational, or speech therapy.

Of these five qualifying criteria, need for prescription drugs is by far the most common, reported for nearly three-fourths of children with special health care needs. The next most frequently reported consequence is the use of or need for extra medical, mental health, or educational services (46 percent of CSHCN), followed by the use of or need for emotional, behavioral, or developmental services (29 percent), limitation in activities (21 percent), and the use of specialized therapies (17 percent). These percentages do not add to 100 because each child may experience more than one consequence of his or her condition.

The proportion of specific health care needs varies across income levels. Among children with special health care needs living in poverty, 40 percent of parents report a need for emotional, behavioral, or developmental services, compared to 23 percent of CSHCN in the highest-income families. The prevalence of limitation in activities also varies by income: 28 percent of poor children report this consequence compared to 17 percent of children in high-income families. While prescription drug need is the most prevalent consequence among all income groups, the percent of CSHCN needing prescription drugs ranges from 82 percent of CSHCN with family incomes above 400 percent of poverty to 64 percent of CSHCN with family incomes below the poverty level.

The proportion of specific health care needs varies across income levels. Among children with special health care needs living in poverty, 40 percent of parents report a need for emotional, behavioral, or developmental services, compared to 23 percent of CSHCN in the highest-income families. The prevalence of limitation in activities also varies by income: 28 percent of poor children report this consequence compared to 17 percent of children in high-income families. While prescription drug need is the most prevalent consequence among all income groups, the percent of CSHCN needing prescription drugs ranges from 82 percent of CSHCN with family incomes above 400 percent of poverty to 64 percent of CSHCN with family incomes below the poverty level.

Impact on the Child

The survey measured the impact of the child’s special need through three questions:

• How often the child’s condition affects his or her ability to do the things other children of the same age do;
• The degree to which the condition affects the child’s ability to do things; and
• The severity of the child’s condition, ranked on a scale of 0 to 10, where 10 is the most severe.

On average, parents rated the severity of their children’s conditions as 4.2. This average rating was higher for CSHCN in families with incomes below the poverty level (5.3) and lower among CSHCN in
families with incomes of 400 percent of poverty or more (3.5). We cannot say, however, whether there is a causal relationship between family income and the reported severity of their children’s conditions.

Based on parents’ responses, nearly 40 percent of CSHCN are never affected in their ability to do things other children do, and another 37 percent are sometimes affected in their abilities. Twenty-three percent—nearly one quarter—are affected usually, always, or a great deal by their conditions.

The percent of children who are affected by their conditions usually, always, or a great deal is twice as high among children in low-income families as among those in families in the highest income group. Overall, 37 percent of children in poverty are affected usually, always or a great deal, compared to 16 percent of children in families with incomes of 400 percent of poverty or more.

The impact of the children’s conditions also varies across racial/ethnic groups. Non-Hispanic White children are the most likely to report never being affected by their conditions, and the least likely to be affected usually, always, or a great deal.

Missed School Days

The number of days of school a child misses is another measure of the impact of a child’s condition on his or her ability to function as other children do. In general, the average child misses three school days annually due to acute conditions.⁵  In comparison, among children with special health care needs, the average is more than seven school days annually (due to both chronic and acute conditions). However, this average is affected by a relatively small group of children who miss many school days: 16 percent of children with special health care needs miss 11 or more school days each year, while half miss three or fewer.

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Home | Table of Contents | Introduction | Prevalence of CSHCN |
Health and Functional Status of CSHCN | Health Insurance Coverage |
Health Care Needs and Access to Care | Care Coordination | Family-Centered Care | Impact on Families | State Data Pages | Appendix | Footnotes