Care of Children with Special Health Care Needs

Abstract

One measure of a society's goodness is how well it cares for its children. This standard has particular importance for vulnerable groups of children, such as those facing health challenges. Thus, the level of care that children with receive through public programs could be seen as a critical marker of the success of the nation's publicly funded health insurance programs. This article reviews the characteristics of children with health care needs, the types of publicly funded programs that serve them, and the challenges and opportunities involved with providing them with quality health care. It concludes by offering suggestions for improvement, such as enhancing outreach strategies and fostering collaboration across programs. Who Are Children with Special Health Care Needs? The term special health care needs (SHCNs) has been defined in a number of ways. In general, the children in this category tend to have a high need for services with correspondingly high health care costs. They also rely heavily on care and ancillary services. In addition, they are especially vulnerable to adverse health outcomes. (See Profile of Children with Special Health Care Needs for a profile of this group of children.) To plan and evaluate health care coverage for children with SHCNs, policymakers and administrators require information about the size and of this population. Yet, no uniformity exists in the way different states or programs identify children with SHCNs. Box 1 Profile of Children with Special Health Care Needs * Prevalence by Demographic Characteristics: Compared with other children, children with SHCNs are more likely to be over age three, white, and living with parents with low incomes and educational levels. * Burden of Illness: Children with SHCNs have poorer health status and more days in bed or absences from school than other children. The burden upon some families is enormous. * Access to Services: Compared with other children, children with SHCNs seem to have similar rates of health insurance coverage and similar rates of having a usual source of care. (a) However, children with SHCNs have higher rates of unmet health care needs. * Use of Services: Children with SHCNs use more outpatient, inpatient, pharmacy, and ancillary services than other children; some use extremely intensive services. * Special Services: The range of services needed by children with SHCNs varies widely, with many requiring high-technology care, highly specialized services, and extensive ancillary (wraparound) services. * Co-Morbidities: Many children with SHCNs have more than one chronic health problem, and many also have developmental, behavioral, and social problems. * Costs: Because children with SHCNs tend to use services more, the cost of caring for these children is higher than for the general population of children; however, the distribution of costs across types of services varies widely with the diagnosis and severity of illness. * Burden of Cost: Families with children having SHCNs often spend a considerable amount of their own income (as much as 9% to 12%) for expenses not covered by insurance, (b) and they may use up an insurance policy's lifetime limit on benefits. (5) (a) Having a usual source of care is not the same as having a medical home, but it is a first step (see Box 3). (b) Leonard, B., Buret, J.D., and Sapianza, J.J. Financial and time coots to parents of severely disabled children. Public Health Reports (1992) 107:302-12. (c) Edmunds, M., and Coye, M.J., eds. America's children. Washington, DC: National Academy Press, 1998. Sources: Stein, R.E.K., and Silver, E.J. Operationalizing a conceptually based noncategorical definition: A first look at US children with chronic conditions, Archives of Pediatrics and Adolescent Medicine (1999) 153:68-74; Newacheck, P.W., Strickland, B., Shonkoff, J. …