The 2001 National Survey of Children with Special Health Care Needs paints a positive picture of access to care for this population of children. Overall, 95 percent of children with special health care needs had health insurance at the time of the survey, 82 percent reported receiving all of the services they needed, and 89 percent had a personal doctor or nurse.
Consistent access to a wide range of services is particularly important for children with special health care needs (CSHCN), who have been defined as:
This definition is one way of describing CSHCN for specific research and programs. It was developed by the Maternal and Child Health Bureau (MCHB) during 1994 and 1995. The definition is purposefully broad and inclusive, recognizing that children with many different diagnoses and conditions have some important, common needs. MCHB’s goal in developing this definition was to help States carry out the mission given them under Title V of the Social Security Act to develop and implement comprehensive, community-based systems to serve children and families with special needs. This mission has been affirmed in the President’s New Freedom Initiative and in the Surgeon General’s report “Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation.” The definition was published in Pediatrics in July 19981 and has been accepted and used extensively in the child health arena. However, because this definition is so broad, it is not appropriate for every purpose or program. Other programs, such as Supplemental Security Income for people with disabilities, use other definitions to identify eligible children.
Because of the breadth of the MCHB definition, estimating the prevalence of CSHCN in the population has presented a challenge to researchers and program planners until now. The National Survey of Children with Special Health Care Needs represents the first source of both national- and State-level data on the size and characteristics of the population of children with special health care needs. This survey, sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration and carried out by the National Center for Health Statistics of the Centers for Disease Control and Prevention, provides detailed information on the self-reported 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 satisfaction with the care they receive. A total of 38,866 families of CSHCN were interviewed by telephone between October 2000 and April 2001. It should be noted that these findings are based on a sample survey, and while they are nationally representative, they are subjective and are based only on families’ experiences and perceptions.
Overall, the survey shows that 12.8 percent of U.S. children have special health care needs, as defined by MCHB, and 20 percent of households with children include at least one child with a special health care need. These children 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 severely impaired. However, what they all share are the consequences of their conditions, such as reliance on medications or therapies, special educational services, or assistive devices or equipment.
Another common characteristic of children with special health care needs is their need for access to a wide range of medical and support services to maintain their physical health, mental and emotional health, and development. The survey documents the breadth and extent of these needs, including prescription medications (needed by 88 percent of CSHCN), specialty medical care (51 percent), vision care (36 percent), mental health care (25 percent), specialized therapies (24 percent), and medical equipment (11 percent). Most CSHCN receive the services they need; however, 18 percent did not receive at least one service that they needed, as perceived and reported by their parents.
Families of CSHCN provide extensive support and care to their children, and they often need help as well. Nine percent of CSHCN live in families with a need for respite care, 7 percent need genetic counseling, and 13 percent need family counseling to help deal with the stresses involved in having a child with special health care needs. Again, while the vast majority of families receive the services they need, 5 percent of families of CSHCN reported at least one family support service that they needed but did not obtain.
A variety of factors influence children’s access to needed health and support services. One is the availability and adequacy of health insurance coverage. At the time of the survey, 5 percent of CSHCN had no insurance; twelve percent were uninsured at some time during the previous 12 months. In addition, the families of one-third of CSHCN with insurance find that this coverage is not always adequate to meet their 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.
Another indicator of access to care is the presence of a usual source of care that families can turn to when their child is sick, as well as a personal doctor or nurse who knows the child and his or her particular needs. Again, while most CSHCN have a usual source of sick care and a personal doctor or nurse, some do not: 8 percent of CSHCN have no regular source of care when they are sick, and 11 percent do not have a personal doctor or nurse.
In addition to being accessible, care for CSHCN should also be family-centered; that is, it should respect the family as the constant in the child’s life and family members as the child’s primary caretakers. To assure that care is family-centered, providers must spend enough time with the family; assure that they have the information they need; listen to the family’s concerns; be sensitive to the family’s values and customs; and make the parents feel like partners in their children’s care. Again, while a majority of children’s care meets all of these criteria, the families of one-third of CSHCN report receiving care that does not.
A final set of indicators reflects parents’ perceptions of 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: more than one in five CSHCN are in families who spend more than $500 per year on their care. Moreover, one in five CSHCN live in families where their condition has caused financial problems. These problems can be exacerbated if parents must stop working or cut their work hours to care for their children; 30 percent of CSHCN have parents whose employment has been affected by their condition.
Taken together, these indicators paint a picture of an adequate system of care for CSHCN that meets the needs of the majority of these children. However, room for improvement still exists, especially where systems serve the most vulnerable children, such as those for low-income families and those who receive insurance coverage through public programs. 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, household income as compared to the Federal poverty guidelines, 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; however, the full set of findings for each indicator are available online at www.mchb.hrsa.gov.
The second section of this chartbook shows selected indicators for each of the 50 States and the District of Columbia. These indicators are displayed for each State, except in cases where the sample size would compromise the respondents’ confidentiality. Finally, this chartbook concludes with a technical description of the survey methodology. More detailed information on the survey is available elsewhere.2
The data presented in the chartbook are designed to show the basic information on CSHCN. More in-depth analysis should be used to examine specific issues further.
This chartbook was developed with the active participation of Peter van Dyck, M.D., M.P.H., Merle McPherson, M.D., Michael Kogan, Ph.D., Bonnie Strickland, Ph.D., and Gloria Weissman of the Maternal and Child Health Bureau; Marcie Cynamon, Stephen Blumberg, Ph.D., Matthew Bramlett, Ph.D, Julian Luke and Kathleen O’Connor of the National Center for Health Statistics; consultant Paul Newacheck, Dr.P.H.; Renee Schwalberg, Isha Fleming and Rebecca Nyman of Health Systems Research, Inc.; and Ryan LaLonde and Sarah Waters of Vanguard Communications. All of the contributors would particularly like to thank the nearly 200,000 families who shared information about their children’s health for this survey.
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