Objective. The purpose of this article is to report the findings of the 2001 National Survey of Children With Special Health Care Needs regarding the extent to which children with special health care needs (CSHCN) have access to public or private health insurance that meets their needs.
Methodology. As part of its effort to develop systems of care for CSHCN, the US Maternal and Child Health Bureau established a health insurance core outcome. Successful attainment was measured on the basis of whether the child met 3 distinct components at the time of the interview: presence of public or private coverage; continuity of coverage over the previous 12 months; and adequacy of coverage. Adequacy of coverage was measured from the family's perspective of whether their insurance covered needed services, covered a reasonable share of costs, and allowed families to see the providers they felt were best for their child. Bivariate and multivariate statistical methods were used to assess independent predictors of respondents meeting the health insurance core outcome.
Results. Results of the survey indicated that 59.6% of CSHCN nationally met the health insurance core outcome using the 3 components of presence of insurance coverage, continuity of coverage, and adequacy of coverage. Poverty status, race/ethnicity, and functional ability were significant factors in whether a child met the health insurance core outcome as well as each of the 3 components. Of Hispanic and non-Hispanic black CSHCN, 45.2% and 57.6%, respectively, met the health insurance core outcome, compared with 62.5% of their white counterparts. Children with the most limited functional ability were 50% less likely to meet the health insurance core outcome than CSHCN without limitations. More than 10% of Hispanic CSHCN were uninsured at the time of the interview, and 20% of Hispanic CSHCN experienced gaps in coverage. Although insurance met the needs of most families, more than one fourth of families reported that uncovered costs were not reasonable. Children who did not meet the health insurance core outcome were also more likely to have unmet needs.
Conclusions. Results of the survey demonstrated that although the majority of CSHCN have adequate health insurance, additional work is needed to improve the adequacy of insurance, particularly for children below the poverty line, Hispanic children, and children with the most limited functional ability. The survey results also demonstrated the importance of continuous and adequate health insurance, because children who met the health insurance core outcome had fewer unmet needs.
- children with special health care needs
- adequate health insurance
- National Survey of Children With Special Health Care Needs
During the past decade, significant effort has been made at the federal and state levels to expand health care coverage for all children, including those with special health care needs.1–4 The State Children's Health Insurance Program (SCHIP) enacted in 1997, the final phase-in of the Medicaid eligibility expansions enacted in the late 1980s, and other federal and state efforts have created unprecedented opportunities to ensure that children have access to the care they need to be healthy and ready to learn.5,6 Having insurance coverage is associated with improved access and utilization patterns for children, including fewer unmet needs, increased likelihood of having a usual source of care, and higher rates of use of well-child care for children with special health care needs (CSHCN) and those without special health care needs.2,5–11
Studies have demonstrated that continuity of coverage is also an important determinant of good access to care. In 1 study, children who had insurance gaps of ≥6 months were at increased risk of experiencing discontinuous care, as evidenced by receipt of care in multiple sites. Indeed, the prevalence of fragmented care for children with gaps in coverage was similar to those who were uninsured for a full year.7 Hence, continuity of coverage becomes an important goal in ensuring that children receive the services they need.
Beyond the presence and continuity of insurance, there is a third important aspect of health insurance for children: the adequacy of that coverage from the family's perspective, ie, whether the family perceives that the insurance covers the services their child needs, whether families are able to see the providers they think are most appropriate for their children, and whether the family reports that the costs of uncovered services and coinsurance payments (including deductibles and copayments) are reasonable in relation to their family income. These later concerns are particularly relevant to CSHCN, because, by definition, they use greater amounts and types of health services than other children.3,12–14
For more than a decade the US Maternal and Child Health Bureau (MCHB) has played a major role in promoting adequate health insurance for all CSHCN and their families. Beginning in 1988, A National Goal: Building Service Delivery Systems for Children With Special Health Care Needs and Their Families15 laid the groundwork for legislative change in 1989. This legislative change (OBRA 1989) established the authority of the MCHB to facilitate a community-based system of services for CSHCN and their families. The set of core outcomes adopted by the MCHB16 and later reiterated in the President's New Freedom initiative17 include:
families and providers work together as partners at all levels of decision-making;
children have access to ongoing comprehensive health care through a medical home;
children and families have adequate insurance coverage for the services they require;
children are screened early and continuously for special health care needs and receive the early intervention services that they require;
community services are organized so that families can use them easily; and
youth receive the services and support necessary to transition to adult health care, work, and independence.
These 6 core outcomes for CSHCN are also incorporated under objectives 16–23 of Healthy People 2010.18 The target is to reach 100% success for each outcome by 2010. In addition, the Maternal and Child Health Block Grant has established adequate health insurance as a required program-reporting measure for state Title V programs.
COMPONENTS OF THE HEALTH INSURANCE CORE OUTCOME
The MCHB has articulated component parts for each of the 6 core outcomes that can be measured at the national and state levels using population-based survey data and other data sources. In this way, baselines can be established and progress measured in achieving 100% success for each core outcome. In the case of the health insurance core outcome, successful attainment is based on meeting 3 distinct components: (1) presence of public or private coverage; (2) continuity of coverage; and (3) adequacy of coverage. Adequacy of coverage is measured by the parent's perception of whether the insurance (1) covered needed services, (2) covered a reasonable share of costs including uncovered services and coinsurance, and (3) allowed families to see the providers they felt were best for their child. Questionnaire items were included in the 2001 National Survey of Children With Special Health Care Needs19 specifically to measure attainment of the health insurance core outcome by CSHCN. For a child to be counted as meeting the health insurance goal, all 3 components had to be met. That is, coverage must have been present at the time of the interview, the child must have been covered continuously for the previous 12 months, and the coverage must have been adequate from the family's perspective (as described above).
This article reports the findings of the National Survey of Children With Special Health Care Needs regarding the extent to which CSHCN met the health insurance core outcome. We used bivariate and multivariate statistical methods to assess independent predictors of success in meeting the health insurance outcome and develop policy recommendations for improving success rates based on these findings.
The 2001 National Survey of Children With Special Health Care Needs19 was conducted by the MCHB and National Center of Health Statistics. The survey used the sampling frame of the National Immunization Survey and the State and Local Area Integrated Telephone Survey mechanism developed by the National Center of Health Statistics. The State and Local Area Integrated Telephone Survey mechanism provided a ready sample and economized on the cost of selecting and screening households by allowing all households contacted for the National Immunization Survey to be potentially eligible for the National Survey of Children With Special Health Care Needs. The survey screened >373000 CSHCN and completed 38866 telephone interviews to identify and conduct interviews with a minimum of 750 CSHCN per state. The overall response rate was 62.4%. With data from the US Bureau of the Census, the data were adjusted to be representative of each state's population of children <18 years old.
The survey interview consisted of 3 parts: (1) identifying CSHCN by using the Children With Special Health Care Needs Screener20 developed by the Foundation for Accountability; (2) gathering demographic information; and (3) obtaining information on aspects of health care for CSHCN in the areas of health and functional status, access to care, insurance coverage, satisfaction with care, adequacy of health care coverage, and impact on care.21 The respondent was the parent or guardian who was the most knowledgeable about the health and health care of the sample child, and respondents were given the option to complete the survey in a variety of languages, including Spanish.
Using the Children With Special Health Care Needs Screener to operationalize the MCHB definition of CSHCN, children were classified as having a special health care need if they had a condition that had lasted or was expected to last at least 1 year and reported at least 1 of the following consequences of the condition: use of or need for more medical care, mental health services, or educational services other than children of the same age; used or needed prescription medication; had a limitation in their ability to do the things most children of the same age do; used or needed special therapy such as physical, occupational, or speech therapy; or used or needed emotional, developmental, or behavioral treatment or counseling.22
Children were classified as insured if they were covered by any private or public plan or program at the time of the interview. If the child was uninsured at any time during the year, they were coded as having a gap in coverage. Health insurance was assessed as adequate if, from the respondent's perspective, it usually or always covered services that met the child's needs, the costs of noncovered services and coinsurance were reasonable, and the health insurance plan allowed the child to see the health providers he or she needed. Children who met the 3 health insurance components of coverage, continuity, and adequacy were categorized as having met the health insurance core outcome.
Several sociodemographic variables were included in this analysis to control for confounding relationships. Race and ethnicity were separated into 4 mutually exclusive categories: non-Hispanic white, non-Hispanic black, Hispanic, and non-Hispanic other. The child's family income was expressed as a percentage of the Department of Health and Human Services federal poverty guidelines for the year in which the interview was conducted and grouped into 4 categories: 0% to 99%, 100% to 199%, 200% to 399%, and ≥400% of the federal poverty level (FPL).23 The functional impact of the child's health condition(s) was divided into 3 levels according to how the child was reported to be affected in his or her ability to do things that other children of the same age can do. The child was reported to have a condition that “usually/always,” “sometimes,” or “never” affects activity.
The impact of health insurance on access and financial burden was measured by 5 variables. Children with ≥1 unmet health needs were defined as those who reported needing a specific service but did not report receiving that service in the past year. Difficulty receiving referrals for specialty care was defined as children who needed a referral for specialty care and whose families reported that obtaining a referral was a problem in the past year. The presence of a usual source of care was defined as having 1 place to which the sample child would usually go when sick or when his or her parent(s) needed advice about their child's care. Having a personal doctor or nurse was defined as having 1 person whom the respondent considered to be the child's personal doctor or nurse. The financial impact of the child's condition on the family was measured by whether the parent reported that the child's condition had caused financial problems for the family.
Using bivariate analyses, demographic characteristics were compared against the components of the health insurance core outcome. Analysis was based on the weighted data, with standard errors adjusted for the complex, multistage sample design.24 The strength of association between demographic and functional status characteristics and meeting the health insurance core outcome was assessed by using logistic regression analyses. Unadjusted and adjusted odds ratios (ORs) for meeting the health insurance core outcome were calculated. All confidence intervals (CIs) are shown at the 95% level. Confounding variables including race/ethnicity, age, gender, poverty status, and impact of condition were included in the models. Finally, bivariate and multivariate regression analyses were used to assess the association between meeting the health insurance core outcome and the variables related to health services and financial burden.
Table 1 presents information on the percentage of CSHCN meeting the health insurance core outcome and its components according to demographic characteristics and degree of adverse impact on the child's activity. Almost two thirds (59.6%) of CSHCN met the health insurance core outcome using the 3 components of presence of coverage, continuity of coverage, and adequacy of coverage. Among the demographic and health characteristics, poverty status, race/ethnicity, and functional ability influenced whether a child met the health insurance core outcome. Non-Hispanic white children were more likely to have met the health insurance core outcome than those of any other race and ethnic group. Less than half (45.2%) of Hispanic CSHCN and 57.6% of non-Hispanic black CSHCN met the outcome, whereas >60% of their non-Hispanic white counterparts met the outcome (P < .01). Children living in poverty were also far less likely to have met the health insurance core outcome. Only 50% of children living at ≤200% of the FPL met the core outcome, whereas 70% of those children living at ≥400% of the FPL met the outcome (P < .01). Less than half (48.5%) of children with limited functional ability met the core outcome, whereas 68.1% of children whose condition has no impact on their activity met the outcome (P < .01).
Presence of Coverage
As shown in Table 1, almost all (94.8%) of CSHCN had public or private insurance coverage at the time of the interview. Hispanic children, adolescents, and children at <200% of the FPL were less likely to have insurance at the time of their interview. More than 10% of Hispanic CSHCN were uninsured at the time of the interview, compared with non-Hispanic whites, non-Hispanic black, and non-Hispanic other children (4.4%, 5.3%, and 5.2%, respectively; P < .01). Rates of uninsurance were also higher for children whose condition sometimes or greatly affected their activities.
Continuity of Coverage
One in 10 CSHCN had gaps in coverage during the year before the interview. Race/ethnicity, age, poverty status, and functional ability level were all factors in whether the child had continuous coverage. More than 20% of children at ≤200% of the FPL had gaps in coverage, compared with only 4% of children at ≥400% of the FPL (P < .01). Fifteen percent of children whose condition affected their level of activity experienced gaps in coverage. Infants (0–5 years old) were slightly more likely to have gaps in insurance when compared with older children (P < .01) and adolescents (P < .05).
Compared with non-Hispanic white children, all other racial/ethnic groups were more likely to have gaps in coverage. Almost 20% of Hispanic children experienced gaps in coverage, compared with 10% of non-Hispanic white children (P < .01) and 14% of non-Hispanic black (P < .01) and non-Hispanic other (P < .05) children.
Adequacy of Coverage
As noted previously, adequacy of coverage was measured by whether the family was satisfied that the insurance met their child's needs, the costs were reasonable, and their child was able to see needed providers. A majority of the families interviewed (85.5%) indicated that insurance usually or always met their child's needs. Differences existed across all demographic factors except age and gender. Parents of Hispanic children were far less likely to be satisfied with their child's health plan. Nearly 90% of non-Hispanic white families were satisfied with their health plan compared with only 70% of their Hispanic counterparts (P < .01). Satisfaction with their child's insurance was also associated with poverty status. Families of children living in poverty, especially children at ≤100% of the FPL, were far less likely to report that insurance met their child's needs. More than one fourth of parents of children with the most limited functional ability reported that insurance did not meet their needs.
Affordability was the most difficult component of the adequacy criteria for children across all demographic groups to meet. Almost 1 in 4 (28.4%) families reported that costs of services not covered by their insurance plan and coinsurance were not reasonable. Families living at ≤200% of the FPL were more likely than families at ≥400% of the FPL to report that costs were not reasonable (P < .01). Almost 40% of Hispanic families reported that uncovered costs were an issue.
The majority of respondents (87.8%) reported that the insurance plan usually or always permitted their child to see needed providers. Poverty status, race/ethnicity, and functional ability influenced whether a child met this component of adequacy of coverage. Of the poorest children living at ≤100% of the FPL, 21.2% reported insurance-related difficulties in seeing needed providers, compared with 1 in 10 (8.1%) nonpoor children (P < .01). Parents of Hispanic children were also more likely to report that insurance did not permit their child to see needed providers. One in 5 (19.8%) children with limited functional ability reported difficulty seeing needed providers.
Multivariate Findings on Meeting the Health Insurance Core Outcome
Table 2 presents unadjusted and adjusted ORs of CSHCN meeting the health insurance core outcome according to demographic and functional status characteristics. The adjusted findings take into account confounding variables and show the independent effect of each demographic and functional status indicator. The key results from the bivariate analyses described above are confirmed in the multivariate analysis: Hispanic children, those living in poor, near-poor, and moderate-income families, and children who are most affected by their conditions were significantly less likely to meet the core outcome on health insurance.
Impact of Health Insurance on Access and Financial Burden
The availability and adequacy of health insurance can influence a child's access to needed health services (Table 3). More than one quarter (28.8%) of CSHCN who did not meet the health insurance core outcome had ≥1 unmet needs, compared with only 1 in 10 (9.5%) of CSHCN meeting the core outcome (P < .01). Similarly, when compared with CSHCN meeting the core outcome, those not meeting the core outcome were more likely to experience problems in obtaining referrals (32.7% vs 14.1%; P < .01) or to not have a usual source of care (8.1% vs 7.0%; P < .05) or personal doctor/nurse (13.5% vs 8.8%; P < .01). Not meeting the core outcome put families of CSHCN at particularly high risk of experiencing financial problems (34.6% vs 11.8%; P < .01). All of these findings remained significant after using multivariate analysis to account for confounding variables.
Impact of Type of Insurance on Meeting the Health Insurance Core Outcome
Table 4 illustrates the impact and ORs of the type of insurance on meeting the health insurance core outcome by type of insurance. Two thirds (66.4%) of CSHCN with private health insurance met the core outcome versus slightly more than half (55.3%) of CSHCN with public insurance (P < .01). Although this finding was significant in the bivariate analysis, after adjusting for the confounding effects of poverty and other variables the effect became statistically insignificant. Additional analyses on the impact of the type of insurance on meeting the health insurance outcome will be presented in another article.
The National Survey of Children With Special Health Care Needs provides baseline data on whether CSHCN have adequate health insurance. The majority of parents reported that their child had continuous and adequate health insurance coverage. The benefits of having continuous and adequate health insurance coverage are also clearly reflected in the survey's results, because children who met the health insurance core outcome had fewer unmet needs than those children who did not meet this outcome.
However, disparities continue to exist for our nation's most vulnerable children, including children in poverty, Hispanic children, and children with the most limited functional ability. Even with the enactment of SCHIP and the Medicaid eligibility expansions, these children are more likely to be uninsured, and when they are insured, their parents are more likely to report that their coverage is not adequate.
The results of the survey also support existing research findings showing that poverty is a barrier to assuring adequate health insurance. We found a strong relationship between poverty status and meeting each of the 3 components of the health insurance core outcome. Despite current Medicaid eligibility standards set at ≥100% of the FPL in every state and up to 200% of the FPL under most SCHIP plans, 10% of CSHCN living at ≤200% of the FPL were uninsured at the time of the interview. It is unfortunate that the survey did not provide data on the eligibility status for these uninsured children. An unknown proportion of uninsured CSHCN may also be undocumented and therefore are not eligible for public coverage. One in 5 children at ≤200% of the FPL also experienced gaps in coverage, although once enrolled in public insurance, most state programs attempt to provide continuous coverage. Additional research is needed to determine who these uninsured CSHCN are and why they remain uninsured despite expansion of public insurance and outreach to enroll them.
Because children with the most limited functional abilities are likely to be using the health care system more, they are a barometer for how well the system is working for CSHCN. Yet, less than half of these children met the health insurance core outcome. One in 4 parents reported that insurance did not meet their child's needs. Fifteen percent of parents reported gaps in coverage. This group of children was 4 times more likely to have unmet needs than children without limitations. Clearly, access to care is critical for this group of children, and inadequacies in their insurance can potentially affect whether they receive the services they need.
Hispanic CSHCN are also among those at the highest risk for not meeting the health insurance core outcome and face a number of barriers. Hispanic CSHCN had the highest rate of uninsurance, and nearly 20% had gaps in their coverage. Families of Hispanic CSHCN were also the least satisfied among all racial/ethnic groups. Additional research is needed to determine the source of these disparities, including the relationship between insurance status and income, primary language spoken, country of origin, and immigration status. This research should guide policy makers on strategies and to overcome the barriers to assure adequate health insurance for this population of children.
Although age, for the most part, did not influence whether a child met the health insurance core outcome, certain findings should be examined more closely. Gaps in insurance among infants may indicate problems in enrolling this population at birth. Adolescents were also slightly less likely to be insured, which could hinder successful achievement of the MCHB companion core outcome that youth with special needs will transition successfully to adulthood.
Insurance also provides families with important protection against financial problems. Affordability, however, is a major problem across all demographic groups. One in 10 children who met the health insurance core outcome still experienced financial problems. Given recent trends in both the private and public markets, affordability will continue to remain an issue for many families.
There are certain limitations to our analyses, especially because the data are obtained from a cross-sectional study. First, children who are homeless, living in an institution, and migrants were not interviewed and therefore are not represented. Families without telephones are also underrepresented, although survey weights were adjusted to account for this factor. There are also limitations related to the impact of culture and language on how families responded to the interview questions. Finally, outcome variables such as unmet need and problems obtaining referrals are intertwined, to a certain extent. This definition of adequate health insurance, which could affect the causal relationship between dependent and independent variables.
The results of the survey also raise many questions worthy of additional research regarding the adequacy of health insurance for CSHCN. Perhaps most important, as noted previously, is the source of disparities among Hispanic CSHCN. Other areas requiring additional research include an analysis of state and regional variations (not discussed here), private versus public coverage, and the relationship between health insurance status, ethnicity, and income.
Overall, the survey results confirmed that although the majority of CSHCN currently have adequate health insurance, additional work is still needed to eliminate disparities among our nation's most vulnerable children. Assuring adequate health insurance to all CSHCN will require a strong and committed partnership that involves numerous stakeholders in the public and private sectors, including federal, state, and local agencies, purchasers, insurers, employers, providers, and families. Over the next few years, the MCHB will focus on fostering this private-public partnership so that the target of 100% success for the health insurance outcome is reached by 2010.
- Accepted January 7, 2005.
- Address correspondence to Lynda Honberg, MHSA, Division of Services for Children With Special Health Care Needs, Health Resources and Services Administration, Parklawn Building 18-A-18, 5600 Fishers Lane, Rockville, MD 20857.
No conflict of interest declared.
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- Copyright © 2005 by the American Academy of Pediatrics