Disparities in Use of and Unmet Need for Therapeutic and Supportive Services among School-Age Children with Functional Limitations: A Comparison across Settings

Disparity in access to and use of medical services has plagued the U.S. health care system for decades. Children with chronic conditions are particularly vulnerable, given their extensive needs for health and related services. Although Medicaid and the State Children's Health Insurance Program (SCHIP) have improved the system for many children, inequities persist and some children continue to have unmet needs for services (Davidoff, Yemane, and Lesko 2003; Szilagyi et al. 2003; Mayer, Skinner, and Slifkin 2004). Beyond traditional medical services, disparities in access are also apparent in related service use such as mental health treatment, dental services, and care coordination (Weller, Minkovitz, and Anderson 2003; Witt, Kasper, and Riley 2003). Children obtain related services through education as well as health care systems. However, policies and programs vary across service settings and it is not known what effect the different systems have on the use of services or unmet need. When needed services are not received, children and their families often suffer consequences including poor health, secondary disabilities, or unnecessary limitations in daily activities. The purpose of the study reported here was to determine the extent to which children with special needs and their families use therapeutic and supportive services, how family resources, specifically the child's type of health insurance, household education level, and poverty status, affect service use and unmet need, and whether disparities in therapeutic service use and unmet need persist across service settings. The 1994–1995 Disability Supplement to the National Health Interview Survey (NHIS-DS) provided an unprecedented opportunity for studying the use of therapeutic and supportive services among children with disability. An estimated 10–14 percent of all U.S. children have impairments in mobility, communication, learning, or self-care abilities that affect their participation in the home, school, or community activities (Hogan et al. 1997; Newacheck et al. 1998b; Stein and Silver 1999). Therapeutic and supportive services assist children with functional limitations and their families to maximize basic living skills, increase social participation, and improve the quality of their lives. Eligibility for services varies across programs and service settings and depends on criteria such as the child's diagnosis, location, or family income (Morreale and English 2003). In U.S. public schools, Individuals with Disability Education Act Amendments of 1997 (IDEA'97, P.L. 105-17) mandates provision of related services necessary for a child to be educated in the least restrictive environment. Up to three quarters of the children using therapeutic services obtain at least some services in school (Walker et al. 1988; Palfrey et al. 1990). Services to support the family in caring for the child at home or the child's ability to participate in community activities are not included in the education mandate and must be obtained through other means. Thus, while some children may receive services only through the educational system, many children receive at least some therapeutic or supportive services through out-of-school providers. Children with special needs consume a disproportionate amount of child health care dollars, and some children regularly use services while others do not (Boyle, Decoufle, and Yeargin-Allsopp 1994; Newacheck et al. 1994, 1998b; Ireys et al. 1997; Ray et al. 2000). Therapeutic services are commonly included in health plans but copayments, or restrictions on the amount of services covered, can be barriers to use, and result in unmet need (Walker et al. 1988; Fox, McManus, and Reichman 2002). Supportive services, such as respite care and transportation, are less commonly included as health insurance benefits. Furthermore, some children who would benefit from therapeutic or supportive services do not fulfill the diagnostic criteria required for health insurance reimbursement and must either pay for services out-of-pocket or forego treatment. The Health Behavior Model (Andersen 1995; Aday et al. 1998) suggests that need, predisposing, and enabling characteristics influence access to health care services. Living in a higher income family or having health insurance promotes the use of medical services (Dubay and Kenney 2001; Silver and Stein 2001). However, little is known about factors that facilitate or impede access to therapeutic and supportive services or whether all needs for services are being met. Previous studies using the NHIS-DS provide evidence that service use and unmet need are associated with predisposing and enabling characteristics of the child and family (Maag 2003; Stein and Silver 2003; Weller, Minkovitz, and Anderson 2003; Witt, Kasper, and Riley 2003). Among children with chronic conditions, public health insurance and family educational attainment predict the rate of health and related service use (Weller, Minkovitz, and Anderson 2003). Child age and ethnicity are associated with use of some types of services such as mental health but others, such as care coordination, have no apparent relationship. There are, however, limitations to this previous work. Most studies do not distinguish between the types of settings providing services. One exception is Stein and Silver's work (2003), which found that the association between family socioeconomic status and service use varied across traditional medical, special education, or mental health settings. Children living in higher income families used traditional medical services at a higher rate than children living in poverty, while lower income children used special education and mental health services at a higher rate. However, therapeutic services, specifically occupational and physical therapies, were grouped with traditional medical services. Thus, it was not possible to distinguish in what ways factors affecting use of therapeutic services might differ from factors affecting use of other types of services either within or across settings. Another limitation is that previous studies include all children participating in the NHIS-DS in the analysis of service use. Estimates of health service use will vary according to the chosen operational definition of special need. The NHIS-DS included children experiencing at least one consequence of a chronic condition. However, the need for therapeutic and supportive services is likely to be restricted to a subset of these children. An earlier paper discusses the rationale for focusing on children with functional limitations (Benedict and Farel 2003). Briefly, alternative definitions of special health care needs include children for whom the only consequence of the condition is an elevated use of traditional medical services or prescription drugs with no associated functional implications. It is unlikely that these broader definitions will truly capture the population most likely to benefit from therapeutic and supportive services. Using data from the 1994 to 1995 NHIS-DS, three questions were addressed. First, is there an association between greater family resources, specifically a child's type of health insurance, family income above poverty level, and household educational attainment and use of therapeutic and supportive services among children with functional limitations? It was expected that children in families with greater resources would be more likely to use services than those in families with fewer resources. Second, is any observed association consistent across service settings? Third, what factors predict unmet need for therapeutic and supportive services, and are there disparities across service settings in the level of unmet need?