Children with special health care needs (CSHCN) are defined by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB) as:
“...those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1
This definition is broad and inclusive, and it emphasizes the characteristics held in common by children with a wide range of conditions. The National Survey of Children with Special Health Care Needs (NS-CSHCN) provides a consistent source of both national- and State-level data on the size and characteristics of the population of CSHCN. This survey, sponsored by the MCHB and carried out by the National Center for Health Statistics, provides detailed information on the prevalence of CSHCN in the Nation and in each State, the demographic characteristics of these children, the types of health and support services they and their families need, and their access to and the quality of the care they receive.
The survey conducted in 2009-2010 represents the third round of the NS-CSHCN. While many indicators were measured consistently over the three rounds of the survey, many of the survey’s questions were revised or re-ordered, some of the composite indicators have been re-defined, and the sample design was changed to incorporate cell-phone-only households in 2009-2010. Consequently, the indicators described here generally cannot be compared directly with the findings of the previous surveys.
Overall, the survey shows that 15.1 percent of U.S. children, or 11.2 million children, have special health care needs, and 23.0 percent of households with children include at least one child with a special health care need. These rates represent a slight increase from the percentages reported in 2005-2006, which, in turn, represented an increase from 2001. However, the reasons for this trend are unknown. While it is possible that the number of CSHCN is actually increasing, it is equally possible that children’s conditions are more likely to be diagnosed, due to increased access to medical care, or growing awareness of these conditions on the part of parents and physicians, or that the changes in the composition of the sample affected the likelihood that CSHCN would be identified by the survey.
CSHCN are as diverse as our Nation, representing all racial and ethnic groups, ages, and family income levels. The children meeting the definition also represent a range of levels of functional abilities, from those who are rarely affected by their conditions to those who are significantly affected. However, what they all share in common is the consequences of their conditions, such as reliance on medications or therapies, special educational services, or assistive devices or equipment. They also share a need for systems of care that are comprehensive, coordinated, community-based, family-centered, and accessible—that is, a medical home and a set of supports that help families to navigate the various services that their children need.
These services include preventive, acute, and chronic medical care; prescription medications; specialty therapies; medical equipment; and mental health services, among others. The survey documents the breadth and extent of these needs, including prescription medications (needed by 86 percent of CSHCN), specialty medical care (48 percent), vision care (35 percent), mental health care (28 percent), specialized therapies (27 percent), and medical equipment (11 percent). Most CSHCN receive the services they need; however, the parents of 24 percent report at least one unmet need for services.
Families of CSHCN often require support in coping with the consequences of their children’s conditions. Overall, the parents of 6.7 percent of CSHCN report a need for respite care, 6.5 percent for genetic counseling, and 12 percent need family counseling to help deal with the stresses involved in having a child with special health care needs. Again, while most families receive the services they need, 7.2 percent report at least one unmet support service need.
The MCHB’s six Core Outcomes provide a framework for examining the needs of CSHCN and their families and the quality of the systems that serve them throughout childhood, from screening and identification of special health care needs through transition to adulthood. These are measures that can be used to monitor the Nation’s progress toward the goal of a comprehensive, family-centered, community-based, coordinated system of services for CSHCN, and the outcomes can be monitored through the questions asked in the National Survey. Moreover, the individual indicators that make up the Core Outcomes provide useful detail about CSHCN’s access to the systems and services they need. For example, one of the Core Outcomes addresses the need among CSHCN for coordinated, comprehensive care within a medical home. Overall, 43 percent of CSHCN receive care that meets this standard. This outcome incorporates a wide range of indicators that provide insight into various aspects of the care that CSHCN receive. Nearly all CSHCN have at least one personal doctor or nurse, the foundation of a medical home, and 75 percent have a usual place they go when they are sick. However, only 56 percent of those who needed coordination among their various sources of care received it, and only 65 percent reported receiving care that was family-centered. Of those CSHCN who needed referrals to specialists, 23 percent had problems receiving them. Thus, while most CSHCN have some basic elements of a medical home—a personal doctor or nurse and a place they go when they are sick—fewer receive care that encompasses all essential elements of the comprehensive medical home.
Another important element of access to care, and one of the Core Outcomes, is the availability and adequacy of health insurance coverage. CSHCN are more likely than the population of children as a whole to have insurance; at the time of the survey, only 3.6 percent of CSHCN were uninsured, and 9.3 percent were uninsured at some time over the previous 12 months. However, one-third of insured respondents report that their child’s insurance is not always adequate to meet their children’s needs, either because the benefits do not meet their needs, the charges are not reasonable, or they do not have access to the providers they need. Thus, despite the fact that 90 percent of CSHCN have continuous health insurance, only 60 percent met all of the standards for this Core Outcome.
While the NS-CSHCN is not a longitudinal survey, looking at the six Core Outcomes as snapshots across a child’s life span can provide a life-course perspective on the care of CSHCN. Early and continuous screening for special health care needs, which should begin at birth and continue throughout childhood, is the Core Outcome most likely to be achieved, with 78.6 percent of CSHCN meeting the standards. Transition to adulthood, at the other end of childhood, is the outcome that is least often met, with 40.0 percent of CSHCN aged 12-17 receiving the services necessary to make transitions to adult health care.
Another important set of indicators reflects the impact of having a child with a special health care need on the family’s time, finances, and employment status. The financial impact of the care of CSHCN can be substantial: the families of one-third of CSHCN report that they spend more than $500 per year on their child’s care. Moreover, the parents of 22 percent of CSHCN report that their child’s condition has caused them financial problems. These problems can be exacerbated if parents must stop working or reduce their work hours to care for their children, as the parents of 25 percent of CSHCN report that they do. Conversely, the parents of 18 percent of CSHCN report that they have avoided changing jobs because they are concerned about losing access to health insurance for their children.
Taken together, the indicators presented here paint a picture of a system of services for CSHCN that meets the needs of many children and their families. However, room for improvement still exists, especially in the systems that serve the most vulnerable children, such as those in low-income families and those who receive coverage through public programs. In addition, the group with the greatest challenges is often the children who are most affected by their conditions in their daily lives. This chartbook presents the major findings of the survey on the national level, stratifying each indicator by selected sociodemographic variables such as age, race/ethnicity, income level, and type of insurance. The specific demographic variables used on each page were selected to highlight those of greatest interest or strongest association with each particular indicator; the full set of findings for each indicator are available at the Data Resource Center for Child and Adolescent Health.
The second section of this chartbook shows the indicators for each of the 50 States and the District of Columbia. All indicators are displayed for each state, except in cases where the sample size would compromise the respondents’ confidentiality. The chartbook concludes with a technical description of the survey methodology.
1 McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland B. A new definition of children with special health care needs. Pediatrics, 102(1):137-140, 1998. Return to text.