Studies of disparities in medical care access have typically focused on traditional measures of health service use such as hospitalizations, physician, or emergency room visits and have not captured the range of health and related services required by children with special needs and their families (Newacheck et al. 1998a
). The findings of the study reported here suggest that disparities exist in the use of therapeutic and supportive services but that patterns of disparity are not consistent across medical and educational settings. Public health insurance predicted greater use of supportive services and therapeutic services outside of the school setting, a finding that may be attributable to the commitment of public programs to serve vulnerable populations such as children with special needs (Davidoff, Yemane, and Lesko 2003
). However, as need was determined based on respondent report, the accuracy of the measure is unknown. Children with more severe functional limitations may be overrepresented in the public insurance category, thus resulting in greater need among this population. Further research is needed to shed light on the association between public insurance, need, and service use. In contrast to public insurance, private insurance provided children no advantage in accessing therapeutic and supportive services relative to their uninsured counterparts. Children with private insurance were less likely than those with public coverage to use therapeutic services if their need extended beyond the school setting. The type and extent of services covered by Medicaid are known to exceed private plans (Newacheck et al. 1994
; Shatin et al. 1998
; Ray et al. 2000
; Dubay and Kenney 2001
; Fox and McManus 2001
). Private plans differ widely in the degree to which they provide access to therapeutic and supportive services. Many managed care plans do not cover supportive services or impose restrictions on access to therapeutic services by requiring preauthorization, limiting definitions of medical necessity, or placing caps on the frequency and duration of services (Fox and McManus 2001
). Managed care had just begun to penetrate state Medicaid programs at the time of the NHIS-DS and, in many cases, children with special needs were covered through “carve-out” arrangements in which needed services are reimbursed through alternative arrangements, thus providing added protection for publicly insured children (Deal and Shiono 1998
; Szilagyi 1998
). Given the disadvantage that children covered by private insurance appear to have in access to therapeutic and supportive services, it seems important to explore models of coverage or an expansion of public programs that will ensure access to needed services.
Children having no insurance are at a distinct disadvantage in accessing therapeutic and supportive services. In an attempt to provide health insurance to a significant proportion of the nation's uninsured children, Congress implemented the SCHIP in 1997. SCHIP appears to promote access to at least some therapeutic and supportive services in many, but not all, states (Fox, McManus, and Limb 2000
; Hill, Lutzky, and Schwalberg 2001
; Fox, Levtov, and McManus 2003
). However, benefits are primarily aimed at services provided after acute illness or injury, and coverage of longer-term conditions such as those experienced by children with functional limitations is not common. Further research is needed to determine whether children are actually using therapeutic and supportive services at a higher rate as a result of enrollment in SCHIP. The National Survey of Children with Special Health Care Needs (NSCSHCN) includes information on enrollment in SCHIP for 750 children with special needs in each state. Using the NSCSHCN, Mayer, Skinner, and Slifkin (2004)
examined the prevalence of unmet need for routine and specialty physician care. Some of the findings are consistent with those of studies based on NHIS-DS data, namely that income is associated with disparities in service use. Another study by Dusing, Skinner, and Mayer (2004)
found that children from low-income families are more likely to report unmet needs for eyeglasses, hearing aids, or communication aids and devices than children from higher income families. Lack of insurance was associated with unmet need for therapy services or mobility devices, a result consistent with the findings presented here. The NSCSHCN may shed some light on the relationship between lack of insurance, SCHIP, and use of therapeutic and supportive services. However, there are several limitations that prevent an analysis comparable with the one reported here. The NSCSHCN is less comprehensive than the NHIS-DS with regard to: (1) type and severity of functional limitation, (2) inclusion of the breadth of therapeutic and supportive services, or (3) access to special education resources.
Household income was associated with use of therapeutic services beyond school but not among children who were only using school services. Public schools mandate that children identified as having a special educational need to receive related services, a policy that appears to eliminate or reduce inequities in access to and use of therapeutic services. Beyond the school setting, however, therapeutic and supportive services are generally accessed through a combination of health insurance plans, out-of-pocket expenses, or community-based service programs with varying financial arrangements. As noted above, insurance plans frequently place limits on reimbursement for services. Families must pay for uncovered services out of pocket or find other alternatives. This is particularly problematic for families with limited financial resources or for children requiring long-term or ongoing therapies to maintain or improve their functional status. Thus, gaining access to services beyond the school setting may be dependent on having a higher income, or at least, knowing more about the service system and how to access resources.
A high level of education in the household increased the likelihood that a child would be reported to be using supportive services and therapeutic services beyond the school setting. Having an unmet need for supportive or therapeutic services was also associated with a high level of education, regardless of setting, a finding consistent with the findings of Newacheck et al. (2000a)
of more traditional medical services. In their paper, they argue that the family must first recognize a problem and then make an effort to seek help in order for a need to be met. Education may contribute to greater knowledge of health conditions, their consequences, and the availability of services. Parents of children with functional limitations, particularly those related to communication, behavior, or learning, often must advocate for services when the child does not meet traditional categorical eligibility criteria. The success of these advocacy efforts is dependent on having knowledge of the interventions or supports available for managing the child's condition and what must be done to gain access. Families that are knowledgeable about a child's condition, the signs and symptoms requiring intervention, and how the service system works may be more likely to recognize a need and advocate for services to be provided. However, further investigation is needed to clarify the nature of the association observed here. It is also possible that reports of unmet need are biased by recall or parent willingness to report.
Using data from the NHIS-DS, Maag (2003)
concluded that for the population of children needing supportive services, health insurance alone does not ensure access. As with service use, overrepresentation of children with more severe functional limitations or poorer health status in the population of publicly insured may explain some of the increase in unmet need. For example, results of the study reported here suggest that children with self-care limitations, usually associated with more severe disabilities, were two to 10 times more likely to both use services and have an unmet need than children with other types of limitations.
The NHIS-DS provides an insight into the use of and unmet need for therapeutic and supportive services. Nevertheless, the cross-sectional nature of the data prevents determination of causal relationships between the various predictors and service use. Questions on the survey regarding service use and limitations of function were not exhaustive, which may contribute to either selection bias or inaccurate representation of outcomes. Some variables having the potential to affect service use, such as the amount of informal social support provided to a family, were not measured. Future research would benefit from data collection methods that include direct measures of child health and function and documented service provision.
The findings presented here clearly demonstrate the need for greater access to therapeutic and supportive services among children with functional limitations. Further, disparities in use of services are apparent across type of health insurance, level of family income, and household educational attainment. Particularly evident among children using therapeutic services are disparities in access to services in the health care arena as opposed to that in an educational setting. The findings have implications for policies that will protect children whose full participation in society is compromised by limitations in functional ability. Policies that promote access to therapeutic and supportive services have the potential to benefit some of our most vulnerable children and their families. Current initiatives, such as SCHIP or the Family Opportunity Act of 2005 (Senate Bill 183), are intended to help families of disabled children access needed health and related services. What remains to be seen is whether such initiatives provide all children and families equitable access to therapeutic and supportive services and eliminate unmet needs.