OBJECTIVE. We examined potential barriers to enrollment in public programs among low-income children with special health care needs who are uninsured. Barriers considered include parents not knowing about the Medicaid and State Children's Health Insurance programs, not believing that their child is eligible for public coverage, not perceiving the enrollment processes as easy, and not wanting to enroll their child in a public program.
METHODOLOGY. The source of data is the 2001 National Survey of Children With Special Health Care Needs. A series of 5 questions about the child's health needs, known as the Children With Special Health Care Needs Screener, was used to identify children with special health care needs. Uninsurance is defined as having no insurance coverage at the time of the survey. Low-income families are defined as those with household incomes below 200% of the federal poverty level. The analytic sample consists of 968 low-income uninsured children with special health care needs. We examined the socioeconomic and demographic characteristics of the sample, the reasons the children lack coverage, and the awareness and perception measures, both individually and combined as a summary measure.
RESULTS. Many low-income parents with uninsured children with special health care needs do not have full information about Medicaid and State Children's Health Insurance programs or do not have positive perceptions of the application processes. Although 93.5% had heard of at least 1 of the 2 programs, only 54.6% believed that their child was eligible for public coverage, and just 48.1% believed that the application processes were easy. Almost all said that they would enroll their child if told he or she was eligible for public coverage.
CONCLUSIONS. Understanding why uninsured children with special health care needs do not participate in public programs is important, because these programs have the potential to cover almost all of this population. Initiatives to increase enrollment should yield real dividends given that the vast majority of low-income uninsured children with special health care needs have parents who say they would enroll their children in public coverage.
Of the estimated 9.4 million children with special health care needs (CSHCN) in 2000–2001, 12% (or over 1 million children) were without health insurance coverage for at least part of the year.1 Of particular concern is that such a high share of children (as many as 4 of 5) with SHCN who lack coverage live in low-income families.2 Although many of these children lack access to affordable private health insurance, it seems that the majority could qualify for some type of public program, either because of their income or because of the nature of their health problems.3 Lack of insurance coverage is deleterious for all types of children, but it is especially worrisome for CSHCN whose medical problems often require ongoing monitoring and potentially expensive services.
Although children with health problems participate in public health insurance programs at higher rates than healthier children3,4 and their parents are much less likely to say that their child does not need health insurance coverage,5 many low-income CSHCN remain uninsured. Previous research has examined the underlying reasons that low-income uninsured children are not enrolled in public coverage through Medicaid or the State Children's Health Insurance Program (SCHIP),6,7 but less is known about why uninsured children with special needs, those who are the sickest and would seem to benefit most from having coverage, are not enrolled in public coverage.8,9
As is the case for all uninsured children,10 CSHCN who remain uninsured face many more problems obtaining needed health care than their counterparts with coverage.8,11 Compared with low-income insured CSHCN, those without coverage are less likely to have a usual source of care, less likely to have seen a doctor or other health professional in the previous 12 months, twice as likely to have an unmet need, and far more likely to have respondents say that the cost of the child's health care caused financial hardship for the family.7 It seems that enrolling in public coverage improves access to care for this group12 and that expansions in eligibility under SCHIP improved access to care along a number of different dimensions for low-income children with chronic health problems.9
Although it may not be surprising that children with special needs who lack coverage are worse off than those with coverage, it is notable that uninsured CSHCN face worse access problems than other uninsured children. On the one hand, children with health problems report more contact with the health care system and higher utilization levels than those without such problems.7 On the other hand, despite these higher utilization rates, unmet needs and financial burdens are much higher for uninsured CSHCN than for other uninsured children.7,10 The greater access problems experienced by uninsured CSHCN may be attributable, in part, to their greater health care needs. But, the access problems may also be because they are more likely to live in poverty, have single parents, have parents in poor health, and receive cash assistance,3 indicating they are disadvantaged in other areas of life beyond their disabilities.
Because of the serious access problems found for uninsured CSHCN and the potentially large benefits of enrolling them in public coverage, it is important to better understand why these children remain uninsured. Such analysis could yield insights to help guide outreach and enrollment efforts for public programs, because current efforts may not be meeting the needs of CSHCN.3
This article uses data from the National Survey of Children With Special Health Care Needs to explore potential barriers to enrollment in public programs among low-income CSHCN who are uninsured.
This analysis draws on the 2001 National Survey of Children With Special Health Care Needs, which was sponsored by the Department of Health and Human Services' Maternal and Child Heath Bureau and conducted by the Centers for Disease Control and Prevention's National Center for Health Statistics between October 2000 and April 2002. The survey is a module of the State and Local Area Integrated Telephone Survey. It is a random digit-dial telephone survey, with interviews conducted in English or Spanish, or 1 of 10 other languages. Households were screened to identify those having at least 1 child under age 18 with SHCN; detailed interviews were conducted for 1 randomly selected child with SHCN in the household. Interviews were conducted with the adult (usually a parent) most knowledgeable about the health and health care of the sampled child.
Identification of Low-Income Uninsured CSHCN
A series of 5 questions about the child's health needs, known as the Children With Special Health Care Needs Screener, was asked to identify CSHCN.13 The 5 stem questions were: (a) “Does your child need or use more medical care, mental health, or educational services than is usual for most children of the same age?”; (b) “Does your child currently need or use medicine prescribed by a doctor, other than vitamins?”; (c) “Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do?”; (d) “Does your child need or get special therapy, such as physical, occupational, or speech therapy?”; and (e) “Does your child have any kind of emotional, developmental, or behavioral problem for which he or she needs treatment or counseling?” If a respondent answered yes to any of these 5 questions, he/she was asked whether the child's need for the type of care identified was “because of any medical, behavioral, or other health condition” and whether the condition “has lasted or is expected to last 12 months or longer.” If both of these conditions were true for any of the 5 situations described in the stem questions, then the child was identified as having a SHCN. A total of 38886 CSHCN were identified. The national response rate on this component of the survey was 61%.14
Uninsurance was defined as having no health insurance coverage at the time of the survey. Insurance coverage was identified through a series of questions inquiring about potential sources of insurance coverage, including coverage provided through an employer, union, or directly from an insurance company; Medicaid; SCHIP; military health care; Title V; or any other kind of health insurance (in addition, coverage had to be comprehensive, paying for both doctor visits and hospital stays). If a child was not indicated as having any of these types of coverage, a confirmation question was asked. Low-income was defined as having a household income of 200% of the federal poverty level (FPL) or lower, calculated by comparing the household's total income in the past calendar year (which was ascertained through a single question) to the federal poverty guidelines for that household size and for the appropriate year. Respondents who did not answer the income question were asked a series of questions to determine whether their income fell within certain income ranges that represent multiples of the poverty level for the specified household size. For the cases that did not provide a response, we used an income imputation created by the National Center for Health Statistics to identify which of these cases were likely to be from low-income households15 and only included those cases that were imputed to have low incomes. Notably, the imputation only designates whether a household is below or above 200% of the FPL; more detailed information (such as whether the household is above or below poverty level) is unavailable for these cases. A total of 968 low-income uninsured CSHCN were identified.
The survey included questions about demographic and socioeconomic characteristics of children and their families, including race/ethnicity/interview language; educational attainment of the mother; household income; receipt of cash assistance; age of the child; number of children in the household; number of adults in the household; region; residential location; length of uninsurance; previous experience with Medicaid/SCHIP; relationship of respondent to child; and severity, stability, and impact of the child's health problem. For low-income uninsured children, additional questions were asked about awareness and perceptions of public health insurance programs and the reason the child was uninsured.
Questions about Medicaid and SCHIP used state-specific program names (the SCHIP awareness question was not asked in states whose 2 programs use the same name, and responses were only analyzed in states with separate stand-alone SCHIP programs). Perceptions of Medicaid and SCHIP were obtained for those respondents who were familiar with Medicaid and/or SCHIP. These included whether they believed the child was eligible for the programs (“Based on what you know about [the programs], do you think your child is eligible now?”) and whether they would want to enroll the child (“If you were told your child was eligible for [the programs], would you want to enroll [him/her]?”). For the analysis of these 2 questions and the Medicaid and SCHIP awareness questions, responses of “don't know” were treated as negative responses. An additional question asked respondents whether they thought applying for the program(s) was easy or difficult. Children whose parents have heard of both programs and think the application processes for both are easy, or who have heard of just 1 program and believe its application process is easy, were classified as “seeing the application process as easy.” All others (who believe the application process for at least 1 of the programs is difficult or do not know about the application process for at least 1 program) are classified as “not seeing the application process as easy.”
A summary measure of potential barriers to enrollment in Medicaid/SCHIP was constructed by classifying children into 1 of 5 mutually exclusive categories according to the responses their parents provided: (a) no reported reason, including those whose parents have heard of at least 1 program, would enroll the child, are not confused about eligibility, and see the application process as easy; (b) lack of interest, including those whose parents have heard of at least 1 program but said they would not enroll the child or do not know whether they would want to enroll the child; (c) lack of knowledge about the programs only, including those whose parents have not heard of either program and those who have heard of at least 1 program, would enroll the child, and see the application process as easy, but are confused about eligibility; (d) enrollment not considered easy only, including those whose parents have heard of at least 1 program, would enroll the child, are not confused about eligibility, but do not see the application process as easy; or (e) both lack of knowledge and enrollment not considered easy, including those whose parents have heard of at least 1 program, would enroll the child, are confused about eligibility, and do not see the application process as easy.
The analysis uses weights that include adjustments for the number of telephone numbers in the household, unit nonresponse, and exclusion of households that lack telephones. Poststratification adjustments were made to population totals by race/ethnicity, age, gender, household income, mother's education, and number of children in the household. Analysis consisted of bivariate tabulations, and standard errors and tests of statistical significance take into account the complex sample design of the survey14; Stata 9 (Stata Corp, College Station, TX) was used to perform all analyses.
Characteristics of Low-Income Uninsured CSHCN
Low-income uninsured CSHCN came from a variety of backgrounds (Table 1). They were racially and ethnically diverse: a majority (71.9%) of these children were non-Hispanic (mostly white), although a significant minority (21.1%) were Hispanic and had parents who chose to be interviewed in Spanish. Consistent with previous studies,2 many uninsured CSHCN were in families with low socioeconomic status. A third (34.3%) of the mothers of these children had not completed high school or its equivalent, and about as many lived in families with incomes below poverty (13.6% were below 50% of the FPL, and 23.7% were 51%–100% of the FPL). However, just 7.7% received cash assistance in the previous year. Consistent with other studies indicating that older children are more likely to be reported as having SHCN,11 most low-income uninsured CSHCN were school-aged; 42.3% were 6 to 12 years of age, and 37.9% were teenagers. More than half (52.7%) lived in the South, and a majority (76.1%) lived in metropolitan statistical areas.
Nearly all of these children were covered by insurance at some point in the past, and many had been enrolled in Medicaid or SCHIP. Just 15.3% had always been uninsured, and 41.1% had been uninsured for less than a year. Nearly two-thirds (63.8%) had been enrolled in Medicaid and/or SCHIP at some point in the past, 11.4% had applied for coverage but had not enrolled, and 24.8% had no experience with the programs.
The severity of the children's health problems varied. Parents reported that 49.2% of these children had health conditions that affected their activities sometimes, and an additional 25.7% were affected usually or always. Most rated their condition as mildly or moderately severe, and most had health care needs that changed once in a while or rarely.
Reasons for Absence of Insurance Coverage
Most of these children lacked access to affordable private insurance coverage, although the reasons reported for lacking coverage varied (Table 2). For 31.4%, cost was the main reason. Employment-related issues, such as no one in the family working or the family being unable to get insurance through the employer, were reported for 19.6% of the sample, and eligibility-related problems were the main reason given for 14.8% of the children. Thus, for 65.8%, the main reason for being uninsured was not being able to afford or qualify for coverage. Another 14.9% were in between types of coverage, and, for 3.7%, the respondent cited application difficulties or lack of knowledge of coverage options. Just 2.2% said the child did not need insurance, and the remainder gave other reasons. The lack of available private coverage emphasizes the need to increase enrollment in public coverage if the goal is to reduce uninsurance among this group.
Awareness and Perceptions of Public Health Insurance Programs
Many low-income parents with uninsured CSHCN do not have full information about Medicaid and SCHIP coverage or lack positive perceptions of the application processes (Table 3). Almost all of these children had parents who had heard of Medicaid or SCHIP: 93.5% had heard of one of the programs. However, awareness of the newer separate SCHIP programs was much lower than awareness of Medicaid programs (51.1% vs 91.2%). Moreover, of those whose parents were familiar with either Medicaid or SCHIP, just 54.6% had parents who believed that their child would qualify for public coverage. Strikingly, almost all (92.0%) of these low-income uninsured CSHCN had parents who said that they would enroll their child in Medicaid or SCHIP coverage if told that he or she was eligible. A sample of these cases received a follow-up question about why the child was not enrolled in the programs. Although the sample for this subgroup was too small to analyze separately, analysis of the entire sample of low-income uninsured children, both with and without SHCN, revealed that most had already applied for coverage, intended to apply, had been denied coverage in the past, or lacked information about or had issues with the application process.7
Less than half (only 48.1%) believed that applying for the programs was easy. The remainder either did not believe applying was easy or did not know enough about the process to have an opinion. Interestingly, attitudes about the Medicaid application process were more negative than about SCHIP: over one third (36.9%) of those who were familiar with Medicaid said applying for Medicaid was difficult, compared with just 25.2% of those who had heard of SCHIP saying applying for SCHIP was difficult (data not shown). Parents were more likely to say they did not know about the application process for SCHIP, perhaps because the SCHIP programs are newer, and thus fewer families have had experiences with them.
Combining the information on awareness of the programs, beliefs about eligibility and the application process, and interest in enrolling, Table 4 categorizes low-income uninsured CSHCN into the stated barrier or combination of barriers to Medicaid/SCHIP enrollment. Just over a quarter (26.7%) had parents who did not believe that applying for the programs was easy. For 24.8%, the barrier was lack of knowledge: either their parents were not familiar with the programs (6.5%) or did not believe the child was eligible (18.3%). For 21.8%, there was no barrier identified: their parents had heard of the programs, were willing to enroll, believed their child was eligible, and thought applying would be easy. About one fifth (19.2%) of these children faced multiple barriers: their parents believed they were not eligible and also did not see the application process as easy. For just 7.5%, the reason they were not enrolled was that they did not want to enroll the child in Medicaid/SCHIP or that they did not know whether or not they wanted to enroll.
CSHCN face a variety of problems in addition to their health conditions: for example, 18% have an unmet need for medical care, almost 21% live in families with financial problems caused by the child's condition, and, for nearly 30%, someone in the family had to reduce their working hours or stop working because of the child's condition.11 Only 60% of CSHCN have satisfactory coverage, characterized by insurance coverage, continuity of coverage, and adequacy of coverage.8
Furthermore, these problems are worse if the child is low-income or uninsured.8,11 Among CSHCN, being uninsured is associated with worse access problems, such as greater unmet needs and less likelihood of having a usual source of care or a personal doctor or nurse.2,11,16
Thus, this population faces a number of challenges related to their health care, and increasing their coverage rates would help eliminate some of their problems accessing needed care. Fortunately, the parents of CSHCN are more likely to have heard of Medicaid/SCHIP and think their children are eligible, express more willingness to enroll their child in public coverage, and have better perceptions of the application processes than the parents of children without SHCN.7 In particular, despite the variety of backgrounds of this population, almost all CSHCN have families that are interested in obtaining public coverage for them: 92% have parents who say they would enroll them in Medicaid/SCHIP if told they were eligible. Because all of them are low-income, and thus almost all fall below state SCHIP eligibility thresholds, the vast majority should be eligible for coverage. Although the survey does not collect information to determine a child's immigration status, national data indicate that the majority of uninsured children who are eligible for public coverage are citizens (unpublished tabulations of the 2005 Current Population Survey). Moreover, the fact that such a small number of families interviewed as part of this survey identified citizenship or social security number concerns as the reason the child is uninsured indicates that this is not the decisive reason that these children lack coverage. Thus, the high levels of interest in enrolling could lead to substantial enrollment increases if the families' interest in applying could be tapped.
Although many of these children have been enrolled in the past and some seem to be in the process of applying, many of their parents do not understand that their children are likely to be eligible for coverage or have concerns about the enrollment process. In addition, knowledge of SCHIP is lower than knowledge of Medicaid. As SCHIP programs have matured and grown over time, awareness of them may be growing as well, thus the share of this group whose parents are familiar with SCHIP may have increased since 2001. Nevertheless, it is likely that knowledge gaps persist. Lack of knowledge of the programs or not believing the child is eligible could be remedied through additional outreach activities targeting this population, and by explaining that eligibility was expanded for older children and for those in higher-income families and that eligibility is even broader for children with health problems. In addition, the recent passage of the Family Opportunity Act, a provision of the Deficit Reduction Act of 2005, provides a new avenue for covering some CSHCN under Medicaid, targeted at families with incomes below 300% of the FPL.17 This provides states with the option to allow families with disabled children to “buy-in” to Medicaid, with caps on cost-sharing. However, another provision of the Deficit Reduction Act requires proof of citizenship for enrollment and reenrollment in Medicaid, which may deter and even prohibit some eligible children from gaining or retaining public coverage. Indeed, a recent survey found that 1 in 10 US-born low-income adults did not have the required documentation for their children.18
Concerns about the enrollment process could be addressed through additional simplifications to application and renewal processes or by publicizing the application process simplifications that have already been enacted. Indeed, the finding that parents were less negative about the SCHIP application process than the Medicaid application process could reflect the fact that more enrollment simplifications were made in SCHIP than in Medicaid in some states. In addition, this population could be more effectively reached by using the information that is available on their characteristics to devise outreach strategies; for instance, over one-fifth live with respondents who chose to be interviewed in Spanish, so outreach materials in languages beyond English will help target more low-income CSHCN. Most of these children are school-aged, so publicizing the availability of coverage for older children could ease concerns about restricted eligibility as children age. Most have had insurance and many have even had Medicaid/SCHIP coverage in the past; thus, targeting former enrollees and those whose coverage lapses are short-term would help reach this population of uninsured children. Other research indicates that community-based case managers and application assistors can increase enrollment, particularly among racial/ethnic minorities and non-English speakers.19,20
Although the National Survey of CSHCN provides useful information about why low-income uninsured CSHCN are not enrolled in public coverage, it is not without its limitations. Most notably, it has a low uninsured rate when compared with other national surveys.21 Although much of the discrepancy may be explained by question differences, and it is not clear whether this survey or other data sources are closer to the “true” uninsured rate for children, it presents the possibility of bias in the sample of uninsured children. Because of this concern, we examined the robustness of the estimates of awareness and perceptions of Medicaid and SCHIP programs by using alternative estimation procedures.7,21 Although there were some important differences in the composition of the children in the low-income uninsured group found on the National Survey of CSHCN and other surveys, both the national picture and differences across subgroups with respect to the awareness and perceptions measures were extremely robust.
This study provides important new information about why low-income uninsured CSHCN are not enrolled in Medicaid and SCHIP coverage. Targeting outreach efforts to these children could yield large gains, especially given the adverse impacts these children and their families are likely to experience if they continue going without coverage.
This research was funded by the Urban Institute.
- Accepted September 15, 2006.
- Address correspondence to Genevieve Kenney, MA, PhD, Urban Institute, 2100 M Street NW, Washington, DC 20037. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
- ↵US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children With Special Health Care Needs Chartbook 2001. Rockville, MD: US Department of Health and Human Services; 2004
- ↵Newacheck PW, McManus M, Fox HB, Hung YY, Halfon N. Access to health care for children with special health care needs. Pediatrics.2000;105 :760– 766
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- ↵Dubay L, Kenney G, Haley J. Children's Participation in Medicaid and SCHIP: Early in the SCHIP Era. Washington, DC: Urban Institute; 2002. Assessing the New Federalism Policy Brief B-40
- ↵Blumberg S, O'Connor K, Kenney J. Unworried parents of well children: a look at uninsured children who reportedly do not need health insurance. Pediatrics.2005;116 :345– 351
- ↵Kenney G, Haley J. Why Aren't More Uninsured Children Enrolled in Medicaid or SCHIP? Washington, DC: Urban Institute; 2001. Assessing the New Federalism Policy Brief B-35
- ↵Kenney G, Haley J, Tebay A. Awareness and Perceptions of Medicaid and SCHIP Among Low-Income Families With Uninsured Children: Findings from 2001. Princeton, NJ: Mathematica Policy Research and Urban Institute; 2004. Report to the Department of Health and Human Services, Office of the Secretary, Assistant Secretary for Planning and Evaluation; Document PR04-111
- ↵Honberg L, McPherson M, Stickland B, Gage JC, Newacheck PW. Assuring adequate health insurance: results of the National Survey of Children With Special Health Care Needs. Pediatrics.2005;115 :1233– 1239
- ↵Dick AW, Brach CR, Allison A, et al. SCHIP's impact in three states: how do the most vulnerable children fare? Health Aff (Millwood).2004;23 :63– 75
- ↵Blumberg SJ, Olson L, Frankel M, et al. Design and operation of the National Survey of Children With Special Health Care Needs, 2001. Vital Health Stat 1.2003;41 :1– 136
- ↵Bramlett, MD. 2003. Imputation of Low-Income Status in the National Survey of Children With Special Health Care Needs. Hyattsville, MD: National Center for Health Statistics, Division of Health Interview Statistics; 2003. Available at: www.cdc.gov/nchs/data/slaits/Imputation.pdf. Accessed April 2, 2006
- ↵Kaiser Commission on Medicaid and the Uninsured. Deficit Reduction Act of 2005: Implications for Medicaid. Washington, DC: Kaiser Family Foundation; 2005. Publication 7465. Available at: www.kff.org/medicaid/upload/7465.pdf. Accessed April 2, 2006
- ↵Ku, L, Cohen Ross D, Broaddus M. Survey indicates Deficit Reduction Act Jeopardizes Medicaid Coverage for 3 to 5 Million US Citizens. Washington, DC: Center on Budget and Policy Priorities; 2006. Available at: www.cbpp.org/1-26-06health.pdf. Accessed September 7, 2006
- ↵Aizer A. 2006. Public Health Insurance, Program Take-up, and Child Health. Cambridge, MA: National Bureau of Economic Research; 2006. Working paper 12105. Available at: http://papers.nber.org/papers/w12105.pdf. Accessed September 7, 2006
- ↵Flores, G, Abreu M, Chaisson CE, et al. A randomized, controlled trial of the effectiveness of community-based case management in insuring uninsured Latino children. Pediatrics.2005;116 :1433– 1441
- ↵Blumberg SJ, Osborn L, Luke JV, Olson L, Frankel MR. Estimating the prevalence of uninsured children: an evaluation of data from the National Survey of Children With Special Health Care Needs, 2001. Vital Health Stat 2.2004;136:i–vi ,1– 38
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