PEDIATRICS Vol. 105 No. 4 April 2000, pp. 760-766

Access to Health Care for Children With Special Health Care Needs

Paul W. Newacheck, DrPH^{*, ,} , Margaret McManus, MHS^{, , ¶}, Harriette B. Fox, MSS^{, #}, Yun-Yi Hung, PhD^*, and Neal Halfon, MD, MPH^{, §,}

From the ^* Institute for Health Policy Studies, San Francisco, California;  Department of Pediatrics, and ^§ School of Public Health, University of California, San Francisco, California; and  Maternal and Child Health Policy Research Center, ^¶ McManus Health Policy, Inc, and ^# Fox Health Policy Consultants, Washington, DC.

	ABSTRACT

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Objective.  To assess the role health insurance plays in influencing access to care and use of services by children with special health care needs.

Methods.  We analyzed data on 57 553 children younger than 18 years old included in the 1994-1995 National Health Interview Survey on Disability. The survey obtained information on special health care needs, insurance status, and access to and use of health services. Bivariate and multivariate analyses were used to assess the association of insurance with several measures of access and utilization, including usual source of care, site of usual care, missed or delayed care, and use of ambulatory physician services.

Results.  Using the federal Maternal and Child Health Bureau definition of children with special health care needs, we estimate that 18% of US children under 18 years old had an existing special health care need in 1994-1995. An estimated 89% of these children had some form of health insurance coverage, most often private health insurance. Insured children were more likely than uninsured children to have a usual source of care (96.9% vs 79.2%). Among those with a usual source of care, insured children were more likely than uninsured children to have an identified regular clinician (87.6% vs 80.7%). Insured children were less likely to report unmet health needs, including medical care (2.2% vs 10.5%), dental care (6.1% vs 23.9%), prescriptions, and/or eyeglasses (3.1% vs 12.3%), and mental health care (.9% vs 3.4%). Insured children were also more likely to have a physician contact in the past year (89.3% vs 73.6%) and have more physician contacts on an annual basis (8.5 vs 4.1 contacts). Unexpectedly, no differences were found between insured and uninsured children in availability of after hours medical care (evenings and weekends) or satisfaction with care. We also found some modest differences in access between publicly and privately insured children. Privately insured children were more likely to have a usual source of care (97.6% vs 95.3%) and a regular clinician (91.0% vs 81.1%). Privately insured children were also less likely to report dissatisfaction with care at their usual site of care (14.9% vs 21.0%) and have access to care on evenings and weekends (6.8% vs 13.4%). No substantial differences were found between privately and publicly insured children in prevalence of unmet health needs or delays in obtaining care due to cost.

Conclusions.  This study illustrates the importance of health insurance for children with special health care needs. Continued efforts are needed to ensure that all children with special health care needs have insurance and that remaining access and utilization barriers for currently insured children with special health care needs are also addressed.  Key words:  access, utilization, insurance, chronic conditions, special health, care needs.

An extensive body of literature has demonstrated that health care access and use by children is influenced by insurance coverage, family income, race and ethnicity, among other factors.^1-6 Few studies, however, have examined these issues with respect to children with special health care needs. Those that have done so have relied on data collected during the 1980s, before a series of dramatic changes in health care, including the widespread adoption of managed care, a contraction in private health insurance coverage of children, and a rapid expansion of Medicaid enrollment for children.⁷ Findings from these studies, similar to those for children generally, suggest access and utilization problems are most prevalent among poor, uninsured, and minority children.^8-12

Because most of these studies are now dated, the populations studied do not reflect the broader conception of children with special health care needs that has evolved in recent years. For example, none of these studies encompass the entire population of children with special health care needs as recently defined by the federal Maternal and Child Health Bureau. Its definition, promulgated in 1997, includes "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." This definition attempts to be inclusive by including physical, developmental, behavioral, and emotional conditions. It is also consequence based; that is, only children who have elevated needs for routine services (eg, physician monitoring) or specialized services (eg, home nursing care) are categorized as having a special health care need.¹³

This article provides new information from the 1994 and 1995 National Health Interview Survey (NHIS) on access to care and use of services by children with special health care needs using this new definition. Several research questions are addressed: How many children with special health care needs have insurance? What are the characteristics of those who are uninsured? What is the effect of insurance on the presence of a usual source of care? How is insurance related to service use and unmet needs? Does access vary by type of insurance coverage? and What are the primary reasons for not having health insurance?

	METHODS

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Data Source

The NHIS is a continuing nationwide household survey conducted by the Bureau of the Census for the National Center for Health Statistics.¹⁴ The purpose of the survey is to collect information on the health status and use of health services by the US civilian noninstitutionalized population. Each year, the survey instrument consists of a core questionnaire on health status, use of services, and demographic characteristics, as well as a set of supplemental questionnaires on topics of current interest. In 1994-1995, 3 supplemental questionnaires were includedone on disability, another on access to care, and a third on health insurance coverage. Data from the core questionnaire and all 3 supplements were used in the analysis.

We used data collected in the disability supplement to identify children with special health care needs and data from the insurance and access supplements, as well as the core survey, to assess the role of insurance in influencing access to care and use of services for children with special health care needs. Estimates are based on 57 553 completed interviews for children under 18 years old during 1994 and 1995. An adult knowledgeable about the health of the sample child, usually the mother, served as a respondent for this survey. Seventeen-year-olds were permitted to respond for themselves.

Identification of Children With Special Health Care Needs

Children with special health care needs were defined using the federal Maternal and Child Health Bureau definition described above. However, because of difficulties in operationalizing 1 component of the populationthose at riskwe limited our analysis to children with existing special health care needs (n = 10 169). A complete description of the approach used to identify these children has been published elsewhere.¹⁵ In addition, due to the design of the NHIS, institutionalized children with special health care needs are excluded from this analysis. The number of children residing in health related institutional settings is small, however, totaling <100 000 in the 1990 Census.

Insurance Status

Insurance status was assessed based on responses to questions included in the health insurance supplement about coverage during the month before the interview. Children were classified as publicly insured if they were reported to have coverage during that month through Medicaid, CHAMPUS, Medicare, Indian Health Service, or other public assistance programs. Children were classified as privately insured if they were reported to have private insurance during the month before the interview. Persons reporting no coverage from any of these sources were classified as uninsured. Children with special health care needs who had unknown or unreported insurance status (n = 490) were excluded from the insurance comparisons, but included in the table totals. Because the NHIS asks about insurance coverage at a fixed point in time (the month before the interview), our estimates are point prevalence estimates. Period prevalence estimates would yield somewhat different figures.

Access and Utilization Measures

The supplemental questionnaire on access to care provided a number of indicators, including presence or absence of a usual source of care, the site of the usual source of care, characteristics of care provided at the site, and indications of missed or delayed care. Using the NHIS core questionnaire, we also obtained data on the volume of ambulatory physician services received by children. Two indicators were used: whether a child had a contact in the past year and the total number of physician contacts in the past year. These measures of physician contacts exclude physician services provided during inpatient hospital episodes but include telephone contacts. Additional access and utilization measures for specialized services (eg, special equipment or home nursing care) were collected in a follow-up survey of a subset of the population with special health care needs. However, incomplete coverage of children identified with special health care needs in the primary survey, inconsistencies in questionnaire wording, and insufficient numbers of sample children using specialized services precluded using these data.

Statistical Analysis

All estimates presented in the text and tables have been statistically weighted to reflect national population totals. Bivariate analyses are used to demonstrate differences in access and utilization by insurance status. However, because these results may be confounded by other variables associated with health insurance, we also conducted multivariate analysis using logistic and linear regression techniques. Results from both sets of analyses are presented. Standard errors used in computing test statistics were calculated using a variance estimation technique developed by the Research Triangle Institute that takes into account the complex sample design of the NHIS.¹⁶ Standard t tests were used to identify statistically significant differences. Unless otherwise noted, all differences discussed in the text were significant at the .05 level or higher.

	RESULTS

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Insurance Status

We estimate that 18% of US children under 18 years old in 1994-1995, or 12.5 million children nationally, had an existing special health care need, as defined by the presence of a chronic physical, developmental, behavioral, or emotional condition and a need for health and related services of a type or amount beyond that required by children generally. Some 88.8% of children with special health care needs (subsequently referred to simply as children) had public or private health insurance in 1994-1995 (Table 1). This left 11.2% or 1.3 million children nationally without any form of insurance coverage.

Insurance coverage was related to the socioeconomic and demographic characteristics of children. Specifically, older children, Hispanics, children from poor and near poor households, those in families where the household head was not highly educated, and children living in the South and West were more likely than their counterparts to be uninsured (all comparisons, P < .01). The most pronounced differences are related to poverty status. Both poor children (below 100% of poverty) and near poor children (between 100% and 200% of poverty) were more than 4 times as likely to be uninsured as children in families with incomes at or above 200% of the poverty level (both comparisons, P < .01).

Among children with health insurance, nearly twice as many were covered by private insurance than public insurance. The sociodemographic characteristics of the 2 groups differed substantially. Compared with those with public coverage, privately insured children tended to be older, white, in higher income categories, in households where the parents had attainted higher levels of education, and in households with 2 parents present (all comparisons, P < .01 ).

Usual Source of Care

An estimated 95% of children had a usual source of care in 1994-1995 (Table 2). A usual source of care is defined in the survey as a place where a child can obtain routine care and care in response to illness. Those who were uninsured were far more likely to be without a usual source of care compared with their insured counterparts (21.8% vs 3.1%; P < .01). Publicly insured children were also somewhat more likely than privately insured children to be without a usual source of care (4.7% vs 2.4%; P < .01).

A series of questions concerning access to a particular clinician, availability of care outside of normal business hours, and satisfaction with services at the usual site of care were asked for children who visited their usual source of care in the 3 months before the interview (Table 2). A small proportion of children with a usual source of care seemed to experience substantially restricted access given that they had no a regular clinician (13.3%) and did not have access to evening and weekend care at their usual site of care (9.8%). Almost 1 in 5 families (17.8%) expressed dissatisfaction with at least 1 aspect of their child's care. Uninsured children were more likely than insured children to be without a regular clinician (19.3% vs 12.4%; P < .01). Differences between insured and uninsured children in access to after-hours medical care and satisfaction with care failed to reach statistical significance.

Although children with private insurance were only slightly more likely than children with public insurance to have a usual source of care (97.6% vs 95.3%; P < .01), there were more substantial differences in the characteristics of their usual sources of care. Specifically, publicly insured children were twice as likely as privately insured children to be without a regular clinician (18.9% vs 9.0%; P < .01). They were also twice as likely to be without access to after-hours medical care at their usual source (13.4% vs 6.8%; P < .01). Finally, respondents for publicly insured children indicated higher levels of dissatisfaction with care than those responding for privately insured children (21.0% vs 14.9%; P < .01).

Missed Care

Several questions were asked in the NHIS concerning children's ability to get needed medical care, dental care, prescriptions and eyeglasses, and mental health care (Table 3). Overall, 12.2% of children were unable to get at least 1 of these needed services during the year before the interview. The most prevalent unmet needs were for dental care (8.1%), prescriptions and eyeglasses (4.1%), and medical care (3.2%). A surprisingly low percentage of families (1.2%) reported unmet needs for mental health care. There were substantial differences in prevalence of unmet needs according to insurance status. Uninsured children were on average more than 3 times as likely to report at least 1 unmet health need compared with insured children (32.4% vs 9.8%; P < .01).

We also examined unmet health needs of privately and publicly insured children in Table 3. In general, the differences were modest and failed to reach statistical significance, except that publicly insured children were somewhat more likely to have unmet medical care needs compared with privately insured children (2.8% vs 1.9%; P < .05).

Delayed and Missed Care Due to Cost

The NHIS questionnaire also included a series of probes concerning delays in seeking needed care and the inability to obtain it due to cost (Table 4). Overall, 5.9% of children were reported to have delayed or been unable to get needed medical care due to cost in 1994-1995. Most of these children experienced delays in getting care (5.6%) rather than a complete inability to obtain needed medical services (1.4%). There were substantial differences between insured and uninsured children in obtaining medical care due to cost. Uninsured children were more than 5 times as likely as insured children to experience delays or an inability to get needed medical care because of its cost (19.0% vs 4.0%; P < .01).

Table 4 also supplies information concerning differences between privately and publicly insured children in delay or inability to obtain medical care due to cost. As was the case for the unmet need variables, there were only small differences between children with private and public coverage in delay or inability to get care due to cost. Moreover, none of these differences reached statistical significance.

Use of Physician Services

Table 5 presents data on use of physician services as indicated by whether children had a physician contact in the past year and the volume of contacts over the past year. Insured children were more likely to have had at least 1 physician contact during the year (89.3% vs 73.6%; P < .01) and have had twice as many physician contacts on an annual basis compared with uninsured children (8.5 vs 5.1; P < .01).

Data in Table 5 also permit examination of differences between children with private insurance and public insurance in their use of physician services. There was no significant difference between privately and publicly insured children in the likelihood of having at least physician contact in the past year. There was a modest difference in the volume of physician contacts, such that publicly insured children had ~1 additional physician contact per year compared with privately insured children (9.1 visits vs 8.0 visits; P < .05).

Reasons for Absence of Health Insurance Coverage

When children were reported to be without any form of health insurance, respondents were asked to identify the primary reason for absence of coverage (Fig 1). The high cost of health insurance was cited as the primary reason for 3 of every 4 uninsured children. The next most common reason for absence of coverage was job loss or other employment concerns (10.0%). Families of the remaining uninsured children cited a variety of other reasons including not needing health insurance and an inability to obtain health insurance due to health.

View larger version (40K): [in this window] [in a new window]   Fig. 1.   Major reasons for lack of health insurance coverage among children with special health needs: United States, 1994-1995.

Multivariate Analysis

Logistic and ordinary least-square regressions were performed to examine the effects of insurance status on access to and utilization of health care, while controlling for other confounding factors including age, sex, race/ethnicity, poverty status, parental education, living arrangement, region, place of residence, and health status (Table 6). The salutary effect of insurance found in the preceding bivariate analyses remained statistically significant in the multivariate analyses for each access and utilization measure studied.

	DISCUSSION

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Results presented in this analysis of the NHIS indicate that health insurance coverage plays a critical role in ensuring appropriate access to care for children with existing special health care needs. Insured children were much more likely than uninsured children to have the primary elements of a medical home, including a usual source of care and a regular clinician. Insurance coverage was also strongly associated with the ability to get needed medical care, dental care, mental health services, and prescription medications. Specifically, uninsured children were 4 times more likely than insured children to have unmet needs for these services. Insurance coverage was also closely associated with use of ambulatory care services. Insured children used approximately twice as many physician services as uninsured children, even after adjusting for health status. Of particular concern, more than 1 in every 4 uninsured children went without a physician contact in the year before the interview date.

Despite the clear importance of health insurance, an estimated 1.3 million children with special health care needs were uninsured during 1994-1995. These children were disproportionately represented among low-income families (below 200% of the federal poverty level [FPL])the target population for expanded coverage under the new State Children's Health Insurance Program (SCHIP). Indeed, our estimates indicate that 4 of 5 uninsured children with special health care needs had incomes below 200% of poverty. Hence, SCHIP has great potential for improving access to care for children with special health care needs by expanding access to insurance.

Although SCHIP is a promising vehicle for expanding health insurance coverage for children, it is unclear how many children with special health care needs will ultimately be enrolled.¹⁷ Not all states are extending SCHIP eligibility to children in families with incomes up to 200% of the FPL. At the end of 1998, 23 of the 48 states that submitted SCHIP applications set their eligibility levels below 200% of poverty. Moreover, in many states, enrollment rates in SCHIP are well below expected levels. For example, in California an estimated 400 000 children (including those with and without special needs) are eligible for the state's new Healthy Families program. Yet, after 3 months of operation, only 56 000 were actually enrolled (San Francisco Chronicle, January 15, 1999). Although enrollment trends appear to be improving, these preliminary data suggest that more aggressive outreach and enrollment efforts are needed.

States should be encouraged to raise their income eligibility thresholds (up to and beyond 200% of the FPL) to allow more uninsured children, including those with special health care needs, to gain access to health insurance coverage. States should also consider eliminating or limiting health insurance premiums under their SCHIP programs. Data from this study indicate that the cost of insurance is the primary barrier to obtaining coverage. In addition, more aggressive outreach and enrollment efforts are required, including special efforts targeted at families with children who have special needs. Finally, a comprehensive monitoring effort is needed to examine the extent to which potentially eligible children with special health care needs are enrolling in SCHIP.

Although pursuing expanded insurance coverage of children with special health care needs is of key importance, our results indicate that problems in access are present even for those with insurance. For example, among those with private insurance, 9% did not have a regular clinician, 7% were without after-hours care, and 15% of families were dissatisfied with at least 1 aspect of their child's care. Moreover, 9% of privately insured children with special health care needs were unable to obtain needed health services in the year before the interview.

Publicly insured children were found to fare even worse than privately insured children. They were significantly less likely to have a regular clinician or access to after hours care at their usual site of care compared with privately insured children. In addition, families of publicly insured children reported higher rates of dissatisfaction than families of privately insured children.

These residual access problems experienced by insured children with special needs could be attributable to underinsurancethat is, inadequate breadth and depth of service coverage in the case of private insurance and inadequate reimbursement in the case of public insurance. Previous studies examining the scope of private health insurance benefits for children with special health care needs have identified consistent gaps in coverage for services, including but not limited to ancillary therapies, home health care, mental health services, and durable medical equipment.^18-20 Other studies have documented the low reimbursement levels provided under public programs, especially Medicaid.²¹

In addition to coverage limitations and inadequate reimbursement, access problems for insured children could be attributable to managed care service authorization policies. The issue may be that coverage exists, but access to particular services may not be considered medically necessary by the insurer. Moreover, gaining service access can be complicated, time-consuming, and expensive. Insurers may, for example, offer a pharmacy benefit option that provides generous coverage for generic drugs but requires additional medical authorization and higher co-payments for brand-name medications, even when physicians deem them necessary. Such policies obviously have a disproportionate effect on families whose children have special needs.

Finally, nonfinancial barriers, such as language and cultural barriers,²² may also interfere with access. With unprecedented levels of new immigrants in the United States, language and cultural barriers may be playing a significant role in health care access. Effectively communicating in many languages and understanding different cultural perspectives related to chronic childhood illness is a growing challenge, particularly in certain regions of the country. Moreover, immigrant families often find it difficult to negotiate complex public insurance eligibility and enrollment processes.

	CONCLUSION

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The results presented here indicate insurance is a critical determinant of access to care and use of services by children with special health care needs. In our view, efforts to expand eligibility and enrollment in private and public insurance programs are of critical importance for this population, as are efforts to ensure that children with special health care needs, even when insured, have access to needed services.

	ACKNOWLEDGMENTS

This work was supported by the Maternal and Child Health Bureau, US Department of Health and Human Services Grant MCU-06MCP1.

We appreciate the helpful research assistance of Margaret Hayden and manuscript preparation of Chellene Wood.

	FOOTNOTES

Received for publication Mar 2, 1999; accepted Jun 30, 1999.

Reprint requests to (P.W.N) Institute for Health Policy Studies, 3333 California St, Suite 265, San Francisco, CA 94118. E-mail: pauln{at}itsa.ucsf.edu

	ABBREVIATIONS

NHIS, National Health Interview Survey; FPL, federal poverty level; SCHIP, State Children's Health Insurance Program.

	REFERENCES

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1. Lieu T, Newacheck PW, McManus MA Race, ethnicity, and access to ambulatory care among US adolescent. Am J Public Health 1993; 83:960-965 [Abstract/Free Full Text]
2. Wood DL, Hayward RA, Corey CR, Freeman HE, Shapiro MF Access to medical care for children and adolescents in the United States. Pediatrics 1990; 86:666-673 [Abstract/Free Full Text]
3. Kogan MD, Alexander GR, Teitelbaum MA, Jack BW, Kotelchuck M, Pappas G The effect of gaps in health insurance on continuity of a regular source of care among preschool-aged children in the United States. J Am Med Assoc 1995; 274:1429-1435 [Abstract]
4. St. Peter RF, Newacheck PW, Halfon N Access to care for poor children: separate and unequal? J Am Med Assoc 1992; 267:2760-2764 [Abstract]
5. Weinick RM, Weigers ME, Cohen JW Children's health insurance, access to care, and health status: new findings. Health Aff 1998; 17:127-136 [Abstract]
6. Simpson G, Bloom B, Cohen RA, Parson PE. Access to health care. I. Children. National Center for Health Statistics. Vital Health Stat 10. 1997;196. Department of Health and Human Services Publication PHS 97-1524
7. Newacheck PW, Hughes DC, Cisternas M Children and health insurance: An overview of recent trends. Health Aff 1995; 14:244-254 [Abstract]
8. Aday LA, Lee ES, Spears B, Chung CW, Youssef A, Bloom B Health insurance and utilization of medical care for children with special health care needs. Med Care 1993; 31:1013-1026 [Medline]
9. Newacheck PW Poverty and childhood chronic illness. Arch Pediatr Adolesc Med 1994; 148:1143-1149 [Abstract]
10. Halfon N, Newacheck PW Childhood asthma and poverty: differential impacts and utilization of health services. Pediatrics 1993; 91:56-61 [Abstract/Free Full Text]
11. Holl JL, Szilagyi PG, Rodewald LE, Profile of uninsured children in the United States. Arch Pediatr Adolesc Med 1995; 149:398-406 [Abstract]
12. Newacheck PW, Stoddard JS, McManus MA Ethnocultural variations in the prevalence and impact of childhood chronic conditions. Pediatrics 1993; 91:1031-1039 [Abstract/Free Full Text]
13. McPherson M, Arango P, Fox HB, A new definition of children with special health care needs. Pediatrics 1998; 102:137-140 [Free Full Text]
14. Benson V, Marano M. Current estimates from the National Health Interview Survey. National Center for Health Statistics. Vital Health Stat 10. 1994;189. Department of Health and Human Services PHS 94-1517
15. Newacheck P, Strickland B, Shonkoff J, An epidemiologic profile of children with special health care needs. Pediatrics 1998; 102:117-123 [Abstract/Free Full Text]
16. Shah BV, Barnwell BG, Hunt PN, LaVange LM. SUDAAN User's Manual: Professional Software for Survey Data Analysis for Multi-stage Sample Designs, Release 6.0. Research Triangle Park, NC: Research Triangle Institute; 1992
17. Edmunds M, Coye MJ. Systems of Accountability: Implementing Children's Health Insurance Programs. Washington DC: Institute of Medicine, National Research Council, National Academy Press; 1998.
18. Fox H, Newacheck P Private health insurance of chronically ill children. Pediatrics 1990; 85:50-57 [Abstract/Free Full Text]
19. Fox H, Wicks L, Newacheck P Health maintenance organizations and children with special health care needs: a suitable match? Am J Dis Child 1993; 147:546-552 [Abstract]
20. McManus M, Fox H, Perry M, Stark E, Kannel S. Private Health Insurance Coverage for Children: A Survey of 450 Employers. Washington DC: Maternal and Child Health Policy Research Center; 1999
21. McManus M, Flint S, Kelly R The adequacy of physician reimbursements for pediatric care under Medicaid. Pediatrics 1991; 87:909-920 [Abstract/Free Full Text]
22. Halfon N, Inkelas M, Wood D Nonfinancial barriers to care for child and youth. Ann Rev Public Health 1995; 16:447-472 [Medline]