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Insurance for Children With Special Health Care Needs: Patterns of Coverage and Burden on Families to Provide Adequate Insurance

From the Health Policy Center, Urban Institute, Washington, DC

	ABSTRACT

TOP ABSTRACT METHODS RESULTS DISCUSSION REFERENCES

 
Objective. To update national estimates of insurance coverage for children with special health care needs (CSHCN) to reflect better the current economic and policy environment and to examine the burden on families and adequacy of coverage.

Methods. I analyzed data on children who were aged 0 to 17 and included in the sample child files of the 2000 and 2001 National Health Interview Survey (NHIS). CSHCN were identified using a noncategorical approach. Various measures of insurance coverage type, premium contributions, unmet need for care, and out-of-pocket spending were compared for CSHCN and children without special needs across all incomes and stratified by poverty status.

Results. Compared with other children, CSHCN had higher rates of public insurance (29.8% vs 18.5%), lower rates of private insurance (62.5% vs 69.1%), and a smaller percentage without insurance (8.1% vs 11.5%). More than 13% of low-income CSHCN were uninsured. Most (78.1%) families of CSHCN contributed to private insurance premiums. Family premium contributions for employer-sponsored insurance plans averaged $2058, or 4.4% of income; premiums for private nongroup insurance were higher ($3593) and consumed a larger percentage of income (6.6%). For children with insurance, rates of unmet need for specific services were relatively low, suggesting that insurance coverage was adequate. However, almost 20% of low-income CSHCN experienced some form of unmet need and of out-of-pocket spending was significantly higher for families with CSHCN compared with those without CSHCN.

Conclusions. CSHCN are more likely to have insurance coverage, but among low-income CSHCN, lack of insurance remains a problem. In addition, the burden on families of CSHCN to provide insurance is greater, yet coverage purchased is not always adequate to meet the needs of many children and places addition burdens on families to pay directly for care.

Key Words: health insurance • children • chronic conditions • premiums

Abbreviations: CSHCN, children with special health care needs • NHIS, National Health Interview Survey • SCHIP, State Children's Health Insurance Program • FPL, federal poverty level • SSI, Supplemental Security Income • ESI, employer-sponsored insurance

Health insurance coverage plays a critical role in ensuring adequate access to care for children with special health care needs (CSHCN). Insured CSHCN are much more likely than their uninsured counterparts to have a usual source of care and to obtain needed medical care, dental care, mental health services, and prescription medications.^1–3 The important role played by insurance in enabling access, as well as the reduced risk of large out-of-pocket expense, provides strong incentives for eligible CSHCN to be enrolled in public insurance and for parents of ineligible children to seek employer-sponsored or other private coverage. However, ensuring that CSHCN have access to insurance, that the insurance is adequate to meet the needs of the child, and that there is not an undue burden on the family to provide coverage may be a substantial challenge.

Although many studies have described patterns of insurance coverage for children in the United States, relatively few studies have focused specifically on insurance coverage of CSHCN, and little emphasis has been placed on the burden on families to provide insurance. According to estimates from Silver and Stein³ using the 1994 National Health Interview Survey (NHIS), 27.6% of CSHCN reported Medicaid coverage, substantially higher than the 17.9% Medicaid enrollment among children without special health care needs; 59.1% reported private insurance; and 12.3% were uninsured, less than the 15.8% reported for other children. Other estimates using the same data are qualitatively similar but use different definitions of CSHCN and different groupings of insurance coverage.^2,4 However, these estimates based on data from 1994 do not reflect significant changes in public insurance policy and the economic environment over the past 10 years, such as welfare reform, the Health Insurance Portability and Accountability Act, and the State Children's Health Insurance Program (SCHIP) expansions.

This article updates national estimates of insurance coverage for CSHCN and provides important new information concerning the burden on families to provide insurance and the adequacy of existing coverage for CSHCN. The estimates are based on data from the NHIS. The rich information on health status of children available on the NHIS provides the means to identify CSHCN using a noncategorical approach, consistent with other recent research on CSHCN.⁵ Comparisons are conducted for children of all income levels and then stratified by income relative to the federal poverty level (FPL). Stratification by income is important because low-income children have fewer economic resources either to obtain private health insurance or to pay for the care that they need.³ However, eligibility for public insurance is limited in most states to children below 200% of FPL. As available insurance options change with income, patterns of coverage and family burden are expected to differ.

Historically, public programs have been a particularly important source of insurance for CSHCN. The Supplemental Security Income (SSI) program provides cash assistance to families with children who have severe physical or mental impairments and who meet the stringent income and resource limits imposed by the program. SSI-eligible children are estimated to represent 18% of all CSHCN.⁶ Once children are eligible for SSI, they are also automatically eligible for Medicaid in most states, with the exception of 11 "209(b)" states that have more restrictive eligibility criteria.⁷ Other low-income CSHCN are eligible for the Medicaid program through mechanisms generally available to children, for example, Section 1931 family Medicaid coverage, child poverty expansions to Medicaid, and, more recently, the SCHIP. In the 35 states with programs for the "medically needy," children who do not otherwise meet income thresholds for Medicaid but whose condition results in high levels of out-of-pocket spending may also qualify after the out-of-pocket medical costs are subtracted from family income.^7,8 In the 19 states that have implemented Katie Beckett model waivers, children who require institutional levels of care and remain at home can qualify for Medicaid regardless of family income, subject to enrollment caps in some states. Finally, state Maternal and Child Health Title V block grants for CSHCN provide selected supplemental services, such as case management and family support, but do not generally cover or provide comprehensive medical care services.

For CSHCN who are not eligible for public insurance, however, the incentives to obtain private insurance coverage are equally strong, yet access to private insurance may be limited and the burden on the family to provide private coverage is greater. Although most workers have access to group insurance through an employer and most CSHCN have a working parent in the home, a smaller percentage of parents of CSHCN work full time compared with other parents, and part-time workers are less likely to be eligible for that coverage.^4,9,10 Coverage for workers in small firms may be subject to underwriting, if permitted by state regulation; thus, having a family member with a chronic health condition may reduce the likelihood that an employer offers coverage or may increase premiums. Finally, private nongroup insurance coverage is difficult to obtain for children with any major chronic condition or disability.^11,12

Because private coverage often contains fairly substantial cost-sharing requirements and coverage limits or exclusions, parents of CSHCN may be more likely to pursue a strategy of double coverage, or joint private-public coverage, to maximize the range of covered services and minimize out-of-pocket costs.¹³ Low-income families with children who are eligible for Medicaid programs have the option of using Medicaid coverage to "wrap around" private coverage, in other words, to pay for services not covered by the private insurance and to pay for out-of-pocket costs associated with covered services.

For all children but particularly those with chronic conditions, the presence of insurance does not guarantee that coverage is adequate to meet the child's needs. Public insurance programs tend to cover a broad spectrum of services, including specific services such as screening, transportation, and respite care, that are particularly valuable for children with chronic health conditions.⁶ Public insurance coverage for children generally has minimal or no out-of-pocket cost-sharing requirements, although most freestanding SCHIPs have implemented copayments.¹⁴ However, low participation rates among providers and bureaucratic barriers may limit access to some extended benefits. Furthermore, the advent of managed care may have exacerbated the problem of access for CSHCN, if capitated managed care contracts lack specific access protections or are not designed to foster integration of special services.¹⁵

Private insurance plans vary tremendously in the scope of covered services and the level of coverage. People who have chronic conditions and private insurance typically face problems such as high out-of-pocket costs in the form of deductibles, additional cost sharing for covered services, exclusion of particular benefits, use of a medical necessity standard that does not reflect the developmental needs of children, and annual or lifetime limits imposed on other benefits.¹⁶ Problems of inadequate insurance will be reflected in the prevalence of unmet needs reported by families of children with insurance and reports of high out-of-pocket spending by families.

	METHODS

TOP ABSTRACT METHODS RESULTS DISCUSSION REFERENCES

 
Source of Data
Data from the 2000 and 2001 NHIS for children aged 0 through 17 were pooled for the analysis. The NHIS is an ongoing household survey that collects data on health status, health insurance, and use of health care services, as well as demographics and income for a nationally representative sample of the noninstitutionalized US population. The NHIS asks more detailed information on medical conditions and activity limitations, as well as additional questions on access to care, for a sample child in each family. An adult who is knowledgeable about the children in each family serves as the respondent for them.

Measurement
Identifying CSHCN
CSHCN were defined in a manner consistent with the federal Maternal and Child Health Bureau definition as "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."¹⁷ Those who were at risk of developing a condition were excluded, because of difficulties in operationalizing this portion of the definition.

For identifying CSHCN on the NHIS, an algorithm that replicates the CSHCN screener was created.¹⁸ This screening instrument identifies children who experience consequences associated with having a chronic condition in the form of elevated service need or functional limitations. The screener asks explicit questions about whether a child needs or uses prescription medications, needs or uses more medical care or educational services than is usual for most children of the same age, is limited or prevented in his or her ability to do the things that most children the same age can do, needs or receives special therapy, and needs mental health treatment or counseling, all associated with a chronic health problem. A child who meets any of the 5 criteria is identified as having a special health care need.

Following the organizational structure of CSHCN screener, survey items and responses from the NHIS designate children who meet each of the 5 screening criteria.⁵ An estimated 12%, or 8.7 million children, in 2000–2001 had special health care needs. The unweighted sample in the 2 years of pooled data includes 2879 CSHCN and 21 909 children without special needs.

Measures of Insurance Coverage, Adequacy, and Family Burden
The NHIS collects information on the type of health insurance coverage for each member of the household. Information is collected about current coverage through Medicaid, SCHIP, other state-sponsored plans, Medicare, military coverage, other government plans, employer-sponsored insurance (ESI), nongroup insurance, and single-service plans. Summary categories were created for public (Medicaid, SCHIP, other state-sponsored plans) and private (ESI, including military coverage for dependent children, and nongroup) insurance. The number of private plans was calculated, and indicators were created for children with both private and public insurance.

To measure burden on the family to provide private insurance, I used data collected on the NHIS for up to 4 private health insurance plans. Information on who pays for the plan (employer, family, public source) was used to create a hierarchy indicating whether any plans were paid for entirely by the family, partially by the family, or with no family contribution. Data on the family's premium contribution for private plans were used to calculate the total out-of-pocket premium amounts for any private plans covering the child, as well as the premiums paid as a percentage of total family income. Because some families may have reported premiums for part-year coverage, I excluded children who were uninsured at some point during the year and trimmed the lowest 5% of premium values from this analysis.

To measure the adequacy of insurance for the children, I used data from the NHIS to identify whether there was any period during the previous 12 months when the child was uninsured. The NHIS also collects data, for each child, on the presence of unmet need as a result of cost, for general medical care, prescription drugs, dental care, mental health services, and vision care. These separate indicators were summarized to create an indicator for any unmet need as a result of cost. Also reported are NHIS data on family out-of-pocket spending for medical care services. For currently uninsured children, the duration and reason for being uninsured available on the NHIS is reported.

Identifying Low-Income Children
The NHIS collects total previous-year family income for the legal family and sources of income but not amounts for each person. A substantial proportion of observations in the NHIS (26% in 1999) did not report total family income at all or reported only that income was above or below $20 000. Furthermore, reported previous-year income may not be consistent with current labor force participation of adults in the family. Sources of income were updated on the basis of current labor force participation, and total income was imputed for families for whom total income was not reported, using a regression-based hot-deck method.¹⁹ Low-income children were defined as those with total family income <200% of the FPL.

Statistical Analysis
All estimates in the text and tables were weighted to reflect national population totals. Bivariate analyses test whether there were differences in characteristics and patterns of health insurance coverage between CSHCN and other children and between low-income and higher-income children in both categories. For selected measures, multivariate probit models were estimated to test the effects of having special health needs while controlling for child and family characteristics such as age, gender, race, ethnicity, citizenship status, parent education, and income. These factors have been shown in previous research to affect insurance or access to care. Marginal effects associated with being a child with special health care needs were calculated at the sample means for all observations. The multivariate adjusted results are discussed primarily when they are different from the unadjusted comparisons. All standard errors were adjusted for the complex survey design used by the NHIS. All analyses were conducted using Stata software. Results discussed in the text all are statistically significant, unless noted otherwise.

	RESULTS

TOP ABSTRACT METHODS RESULTS DISCUSSION REFERENCES

 
Before examining the differences in insurance coverage, it is important to note that CSHCN differ from children without special needs in key characteristics that are likely to affect insurance coverage and access to care (Table 1). CSHCN tend to be more economically disadvantaged, with a greater percentage living in single-parent families, living with nonworking parents, living with a parent in fair or poor health or with a limitation in activity, living in poverty, and receiving cash assistance through either SSI or Temporary Assistance for Needy Families. These factors all suggest a greater likelihood that the child would be eligible for and enrolled in public insurance. CSHCN are also less likely than children without special needs to be Hispanic, noncitizen, or have immigrant parents, characteristics generally associated with low rates of private insurance and with restricted public insurance eligibility in the case of immigrants. These characteristics, along with lower income, rates of parent employment, and rates of ESI offer, suggest lower rates of private coverage. Even when stratifying into low- versus higher-income groups, most differences between CSHCN and other children persist, suggesting that patterns of insurance would differ within income groups.

In contrast to expectations, a relatively small percentage of CSHCN (7.5%) were covered by multiple health insurance plans. More than half (57%) of the double coverage for CSHCN resulted from multiple private plans covering the child, with an additional 38% having joint public-private coverage (data not shown). Among children without special needs, those with double coverage were more likely to have multiple private plans (76%), reflecting the higher rates of ESI coverage in this population. Likewise, higher-income children in each group were more likely to have higher rates of multiple private plan coverage compared with low-income children.

Relatively few families faced the full financial burden to provide private insurance to their child (Table 3). Only 14.1% of CSHCN had a plan paid for entirely by their family. Families who shared the cost with employers were much more common (64.0%), and more than one fifth of families did not have to pay anything for the child's private insurance. There were few significant differences in the distribution of premium sharing across the groups; among higher- income children, families of CSHCN were more likely to pay the full premium compared with other children.

A major concern of policy makers is whether insurance coverage for CSHCN is consistent over time and adequate to meet the needs of the child. The results presented in Table 4 suggest that most (95%) CSHCN with insurance had insurance for the full year. Low-income children with and without special needs had a greater likelihood of being uninsured at some point during the year compared with higher- income children.

The gap in unmet need would likely be greater if families of CSHCN were not also paying more out of pocket for health care. The proportion of CSHCN with family out-of-pocket spending >$2000 was 21.5%, compared with 13.9% for children without special needs. Higher-income families with CSHCN were almost twice as likely as low-income families to spend $2000 (27.1% vs 13.9%), reflecting lower rates of enrollment in Medicaid and greater resources available to the family. Despite the disproportionate enrollment in Medicaid, out-of-pocket spending was still higher for CSHCN compared with other children, for both low- and higher-income children.

With its broader coverage and reduced out-of-pocket burden, it would be reasonable to expect that public insurance would provide more adequate coverage than private insurance, but for low-income children, there is little evidence that public insurance does a better (or worse) job in meeting the needs of CSHCN compared with privately insured children, although the distribution of out-of-pocket costs is substantially lower among publicly insured children (data not shown). The only significant difference is that privately insured CSHCN are twice as likely to report unmet need for dental care compared with publicly insured children (18% vs 9%). Selection may play a role in the failure to find differences: if CSHCN who are enrolled in public insurance have more serious and disabling conditions, then the coverage may be better, but their level of need may be higher than privately insured children.

CSHCN tend to have shorter spells of being uninsured as reflected in the results presented in Table 5. Among CSHCN who are uninsured, 34.9% were uninsured for 6 months or less, whereas 10.1% never had insurance. Among uninsured children without special needs, the current spell of insurance tended to be longer, with only 21.4% reporting that they had been uninsured for <6 months and 29.7% reporting that they never had insurance.

	DISCUSSION

TOP ABSTRACT METHODS RESULTS DISCUSSION REFERENCES

 
Consistent with expectations, this analysis finds that CSHCN had different patterns of insurance coverage than other children. Rates of public insurance coverage were higher, likely as a result of both higher rates of eligibility and higher rates of participation associated with expected greater need for services. Rates of private insurance coverage were lower among CSHCN, consistent with lower rates of parent employment, lower rates of ESI offer, and lower incomes. Higher rates of public coverage more than compensated for lower rates of private insurance, resulting in smaller proportions of CSHCN going uninsured. However, 8.1% of all and 13.2% of low-income CSHCN were uninsured at the time of the survey, many of whom had been uninsured for >1 year.

The analysis finds that families with CSHCN tended to face greater burdens securing coverage adequate to meet their child's needs. CSHCN were more likely than other children to have double coverage, especially public-private coverage. Double private coverage requires the financial outlay associated with addition premium expense, and any double coverage situation likely involves greater time spent obtaining and coordinating providers and benefits. There is evidence that families of CSHCN paid more for ESI coverage and low-income families of CSHCN paid more for nongroup premiums compared with families of children without special needs. Even absent any difference in premium outlays for nongroup insurance, similarly priced private nongroup policies being purchased for CSHCN are likely to be less comprehensive than policies that cover other children—with greater cost-sharing requirements and coverage exclusions.¹¹ Thus, the comparisons likely understate what would be real differences between CSHCN and other children in the cost for comparable coverage. Providing care for CSHCN also places a greater burden on the family with respect to out-of-pocket spending, and CSHCN are more likely to forego various types of care as a result of cost.

The limited measures of insurance adequacy available on the NHIS (unmet need for various basic services and out-of-pocket spending) suggest that most CSHCN have adequate insurance, but a larger proportion have inadequate coverage compared with children who are not identified as having special health care needs. However, there may be other, more specialized services of particular importance to CSHCN and where insurance adequacy is likely to be even more of a problem. These services include case management, special therapies, home health, respite care, and special equipment and supplies. These more specialized measures are captured in the National Survey of CSHCN, which can provide an important resource for additional analysis.²⁰ The National Survey of CSHCN also captures information concerning effects of having a child with special health care needs on parent labor force participation, an issue linked to but not directly addressed in this analysis.

The failure to find even greater differences in the burden associated with providing insurance and in the adequacy of the coverage may also be attributable to heterogeneity within the population of CSHCN itself and selection of children into different types of insurance. Only a portion of the CSHCN identified using the Maternal and Child Health Bureau definition have serious medical problems that require ongoing medical monitoring and/or interventions. These children may be even more likely than other CSHCN to be enrolled in Medicaid when eligible and may face greater barriers to private nongroup coverage and thus may be underrepresented in that group. Likewise, children with more serious medical problems are more likely to experience unmet needs and other access problems. Given the data available in the NHIS, it is difficult to identify a group with conditions that are particularly health or life threatening, but it may be possible to identify children who have a greater variety of health care service needs associated with their condition. Future research is needed to explore this issue and to examine the adequacy of coverage for more homogeneous subgroups of children.

Not only is there heterogeneity within the population of CSHCN identified in this study, but also the overall sample is limited in scope, excluding children who do not currently have but are at risk for developing a chronic condition. The at-risk group has been excluded by most researchers who examine characteristics of CSHCN, because of the difficulty in operationalizing this aspect of the Maternal and Child Health Bureau definition.^2–4,18 This diverse group includes children who are at increased risk as a result of genetics, environmental exposures, behaviors, limited family resources, and poor access to health care. The variety of risk factors and the varied implications for health insurance coverage make it difficult to draw any conclusions about likely patterns of health insurance for the at-risk group.

Although uninsured rates are relatively low among CSHCN, there is still a residual group of uninsured low-income CSHCN. The key explanation cited for why children are uninsured is the cost of insurance, yet expansions to public insurance eligibility through implementation of SCHIP in the past 4 years have extended eligibility for this very low cost insurance to most of these uninsured children.²¹ States have taken substantial measures to inform and enroll children who are eligible for SCHIP generally. It may be that outreach efforts are not reaching CSHCN and/or that health plans that participate in the outreach efforts are particularly reluctant to enroll them. Policy makers may need to design special outreach approaches to identify and enroll CSHCN.

The distribution of insurance coverage for CSHCN in this study is similar qualitatively to estimates from 1994. The estimates of public coverage are actually close (29.8% vs earlier estimates ranging from 27.6% to 32.6%, although the high estimate is not fully comparable because it includes military coverage and Medicare). This analysis finds a higher proportion of children with private insurance than the other studies^2–4 and fewer uninsured (8.1% in this analysis compared with between 11.2% and 14% in the 1994 studies). The differences may stem from differences in the population of CSHCN identified. For example, the definition used by Heck and Makuc⁴ was more restrictive than the current definition, identifying only 7.5% of children as having special health care needs, compared with 12% for the definition applied in this study. Although there are likely to be broad overlaps in the types of children identified in the 4 analyses, there may also be differences that explain the different rates of private coverage and uninsurance in the previous analyses.

Alternatively, the higher estimates of private coverage and lower rates of uninsurance are consistent with the significant changes in the economic and policy environment for health insurance in 2000/2001 compared with 1994/1995 and are comparable to trends identified for all children.²² Improvements in the economy between these 2 periods reduced the proportion of children who live in poverty and increased the proportion of children with working parents.²³ Implementation of welfare reform also led to dramatic reductions in cash assistance case loads that were linked to declines in Medicaid enrollment for children generally.²⁴ It is likely that CSHCN were affected to a lesser degree by the changes in Medicaid eligibility and participation, because their parents had strong incentive to maintain coverage for their children, but it is likely that some families with CSHCN were affected. Declines in employment rates during 2002 and 2003 may have reversed the gains in employment-related insurance coverage suggested by these estimates from 2000 and 2001. Likewise, states have started to retrench on public insurance eligibility, although the initial changes have focused more on adults than children. The estimates presented in this article, as with all other estimates that are sensitive to changing economic and policy environments, must be viewed as snapshots in time.

Given the importance of public coverage to CSHCN, potentially the most important policy change was passage of the Balanced Budget Act of 1997 and the implementation of SCHIP. SCHIP essentially allowed states to extend the public insurance safety net to children at even higher incomes by expanding existing Medicaid programs or creating new freestanding programs that operated more like private insurance. During the past 5 years, all states have implemented some type of SCHIP.²⁵ Research in progress will assess the effects that these SCHIP expansions have on insurance coverage and access to care for CSHCN.

	ACKNOWLEDGMENTS

 
This research was funded by a grant from the Maternal and Child Health Bureau, Grant R40 MC 00292.

The opinions expressed are those of the author and do not reflect the opinions of the Maternal and Child Health Bureau, The Urban Institute, or its funders.

I acknowledge the helpful comments of 2 anonymous reviewers, as well as Urban Institute colleagues Lisa Dubay, Ian Hill, and Genevieve Kenney. Jennifer Lesko and Alshadye Yemane provided excellent programming assistance.

	FOOTNOTES

 
Received for publication Jul 28, 2003; Accepted Nov 7, 2003.

Reprint requests to (A.J.D.) Urban Institute, 2100 M St NW, Washington, DC 20037. E-mail: adavidof{at}ui.urban.org

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