PEDIATRICS Vol. 107 No. 4 April 2001, pp. 736-743

Impact of the Oregon Health Plan on Children With Special Health Care Needs

Janet B. Mitchell, PhD^*, Galina Khatutsky, MS^*, and Nancy L. Swigonski, MD, MPH

From ^* Health Economics Research, Inc, Waltham, Massachusetts, and the  Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana.

	ABSTRACT

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Objective.  Although an increasing number of Medicaid children are enrolled in Medicaid managed care plans, little is known about how children with special health care needs fare under such programs. Of particular concern is the ability of such children to navigate a managed care system and gain access to specialty and other services. This study compares the managed care experiences of children with and without special care needs in the Oregon Health Plan.

Methodology.  Telephone surveys were conducted with a sample of parents of children enrolled in the Oregon Health Plan. Three groups of children were sampled: Supplemental Security Income (SSI) children with disabilities, children with asthma, and children without special health care needs. Descriptive and multivariate analyses were conducted to determine the impact of Medicaid managed care on access and satisfaction.

Results.  Children with disabilities in managed care plans did not experience any more difficulty accessing needed specialty care than did those without special health care needs. Children with asthma, however, reported higher levels of unmet need. There were no differences in access between children with disabilities enrolled in managed care and those children with disabilities remaining in fee-for-service.

Conclusions.  Unlike SSI children with disabilities, children who were not SSI-eligible but had asthma seemed to have difficulty obtaining some services. These children were not eligible for the same consumer protections afforded SSI children by Oregon. If states want to enroll all children with special health care needs into managed care programs, they must develop mechanisms for identifying such children and ensuring that they receive medically necessary services.  Key words:  children with special health care needs, Medicaid managed care, access to care, satisfaction with care.

Many states have implemented Medicaid managed care over the past few years, but the majority have limited mandatory managed care enrollment to those populations covered under Aid For Dependent Children (now Temporary Assistance for Needy Families [TANF]) and the Sixth Omnibus Budget Reconciliation Act (SOBRA) (ie, relatively healthy women and children).¹ Relatively few states have enrolled their disabled populations, either adults or children, into managed care. In fact, federal policymakers were so concerned about the potential vulnerability of children with special health care needs (CSHCN) that, when the Balanced Budget Act permitted states to enroll their Medicaid populations into managed care without a waiver, they specifically defined and excluded certain categories of vulnerable children.^a

However, CSHCN have been defined in a variety of ways, including use of services,² functional status,³ limitations in social role activities such as school or play,^4,5 conditions or categories,^6,7 or a combination of these. Hence, estimates of the prevalence of CSHCN vary according to the definition used, ranging from 6.5%⁴ to 18%^8,9 of noninstitutionalized children. A generally accepted, noncategorical definition of CSHCN has been adopted by the Maternal and Child Health Bureau 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."¹⁰ Medicaid-eligible children may be at particular "increased risk," as the prevalence of disabilities is higher among minorities, children from families with low incomes, and children living in single-parent families.⁴

Nevertheless, a small number of states have not only enrolled their TANF and SOBRA populations but, with the appropriate waivers from the Health Care Financing Administration, have also enrolled children eligible for Supplemental Security Income (SSI) into managed care plans. Managed care, with its emphasis on primary, preventive, and coordinated care, has great potential benefit for CSHCN.^11,12 Concerns primarily center on 3 issues: 1) the difficulties that CSHCN may have in working through complex organizational structures (the hassle factor) that may result in decreased quality¹³ and satisfaction with care;¹⁴ 2) the financial incentives to restrict use of services, especially specialty services;^12,15-17 and 3) because of the first 2 concerns, an increase in unmet need.¹⁸ Despite the many voiced concerns, there remains a paucity of data on how children enrolled in SSI or with other special health care needs fare under Medicaid managed care.

Oregon's Medicaid program, the Oregon Health Plan (OHP), provides an opportunity to examine the impact of managed care on CSHCN. In February 1995, Oregon enrolled its SSI disabled beneficiaries, including children, into capitated managed care plans. All other Medicaid eligible children had been enrolled a year earlier. Advocates worried not only about the ability of CSHCN to navigate a managed care system, but how they would be affected by Oregon's use of a priority list to define Medicaid benefits. Under OHP, paired medical conditions and treatments are ranked hierarchically from most to least medically necessary. Covered services are those at or above a cutoff line that is established based on the State's budget. Advocates and politicians worried that this rationing of services would mean that some children would be denied medically necessary treatment.^19-22

In this study, we evaluate the impact of OHP on CSHCN in 2 ways. First, we compare access and satisfaction with care for a sample of SSI children with disabilities, a sample of children eligible for Medicaid through TANF or SOBRA, and because not all CSHCN qualify for SSI or fit the more restrictive BBA definition of CSHCN, we also include a group of TANF/SOBRA-eligible children who have a chronic condition: asthma. We hypothesize that if concerns regarding restricted access and satisfaction for vulnerable populations under managed care are warranted, then there may be a gradient effect with the more severely impaired group, ie, the SSI population, having the most difficulty with access and the least satisfaction, those with asthma intermediate, while those in the general population fare the best. Second, we compare access and satisfaction with care for the children enrolled in SSI who are also enrolled in managed care with those who have remained in fee-for-service.

Virtually all TANF/SOBRA children (98%) are enrolled in managed care plans; the remaining children have been exempted either because they live in 1 of the 2 rural counties in the State without a managed care plan or because they are Native American. The State has a more liberal exemptions process for persons with disabilities. People with disabilities may also be exempted for continuity of care reasons (eg, if their primary care physician does not participate in any of the OHP plans in their county, if they require services from multiple specialists who do not all participate in the same plan, etc). Another common exemption for children with disabilities is that they already have health insurance (usually through a parent's employer); in this case, OHP is the secondary payer providing wrap-around services. About one third of all SSI children with disabilities in Oregon remain in fee-for-service. Capitated payment rates from the State to health plans vary by the age of the child and by eligibility category. Payments for SSI children are ~3.5 times higher than those for TANF children, and 8 times higher than for SOBRA children. However, health plans have considerable flexibility in how they take these differential rates into account when they contract with physicians.

	METHODS

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Sample

Samples of children 1 to 17 years old were selected from OHP eligibility files. Children in the general OHP population included those eligible under the TANF, SOBRA, and New Families programs. (As part of its New Families program, Oregon expanded Medicaid eligibility to all families with incomes below 100% of poverty. This expansion primarily affected adults, as the SOBRA expansions of the late 1980s had extended eligibility to all children below poverty who were born after September 30, 1983. However, teenagers born before this date became eligible for OHP for the first time.) The sampling frame was defined as all children meeting these eligibility categories as of January 1998 and who had been enrolled in OHP for at least 10 of the preceding 12 months. Children with asthma were first identified based on claims and encounter data (international classification of diseases diagnosis of 493.xx), and then had to meet the same sampling criteria as children in the general OHP population. Six cases were excluded because their parents responded that they did not have asthma and did not experience any symptoms related to asthma.

The sampling frame for children with disabilities was also drawn from OHP eligibility files. It included all noninstitutionalized children who were eligible for OHP as of September 1998 because they received SSI. A stratified random sample was designed with 8 strata based on Medicaid delivery system (managed care vs fee-for-service) and type of disability. Four categories of disability type were created from the International Classification of Health Diseases, Ninth Revision diagnosis codes: mental illness, mental retardation/developmental disability, physical disability, and diagnosis unknown. These diagnoses represented the principal reason the child became eligible for SSI. The diagnostic data were obtained from the Social Security Administration and merged onto OHP eligibility files.

Data

The survey was conducted by telephone, using computer-assisted telephone interviewing techniques. Two weeks before data collection began, introductory lead letters were mailed to all sample members to inform them about the survey. All interviews were conducted with an adult informant, usually the child's mother. Interviews took place between March and October 1998 for the sample in the general OHP population and between June and October 1998 for the sample of children with asthma. Interviews with parents of children with disabilities took place between February and September 1999. Over the 1998 to 1999 period, there were no important programmatic changes in OHP; most importantly, there were no changes in the priority list during this time period or in where the line was drawn on the list to determine coverage.

Tracing procedures were used for cases that could not be contacted given the information on the sampling (eligibility) files. This included cases where the introductory letters were returned because of incorrect address information, cases with no telephone numbers on the sampling files, cases with disconnected or incorrect telephone numbers, and cases that could not be located after repeated call attempts. Tracing procedures included calls to directory assistance, calls to family members and neighbors, and electronic searches of numerous commercial databases.

A total of 966 completed interviews were conducted across all 3 samples. This includes 351 children in the general OHP population (response rate of 67.2%), 205 children with asthma (response rate of 67.2%), and 410 children with disabilities (response rate of 47.5%). Low-income populations tend to be highly mobile and often do not leave forwarding address information. Our response rates for children in the general OHP population and for children with asthma are as high or higher as those achieved in other published surveys of Medicaid populations.^23-28 Lower response rates for the sample of children with disabilities reflects the greater difficulty of tracing these children. (We are unaware of any other published surveys of SSI children with disabilities.) Unlike other Medicaid children, children receiving SSI are often the only family member eligible for Medicaid. As a result, state eligibility files may contain little information about the parent, such as the parent's name (which may be different), parent's social security number, etc. Tracing, however, needs to be done through the parent, as the child is unlikely to be listed in directory assistance, to have a credit history, or to have a driver's license. Despite the greater difficulty tracing, once located, almost all parents of eligible children on SSI participated in the survey. Only 2.9% of contacted children's parents refused to participate. Limited information on all children was available from the eligibility files, allowing us to examine certain characteristics of children who could not be located. There were no differences between these children and those who participated in the survey with regard to age, gender, race/ethnicity, county of residence, or type of disability.

The sample sizes listed in the above paragraph are for all sampled children, including those in fee-for-service. For most of the comparisons described in this report, we restricted the analyses to those children enrolled in capitated managed care plans. The total sample for these children was 752, including 333 children in the general OHP population, 177 children with asthma, and 242 children with disabilities. The second set of comparisons was based on all children with disabilities, including the 242 enrolled in managed care and 168 in fee-for-service.

Sociodemographic and Health Status Variables

Child's age, sex, and race as reported by the mother are included. Current health status of the child was reported as excellent, very good, good, fair or poor. In the fee-for-service versus managed care comparison of the children enrolled in SSI, we also report the reason for disability (mental illness, mental retardation or developmental disability, a physical disability or unknown), the mean number of activities of daily living the child needs help with, and whether or not the child has health insurance in addition to OHP.

Outcome Variables

Satisfaction Satisfaction with OHP was measured with 2 variables. Parents were asked how satisfied they were with the overall quality of care under OHP. Quality was rated as very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied. Parents were also asked first whether they had lodged a formal complaint with their physician or health plan over the past year, and if not, whether they had ever thought about filing a complaint.

Access Access was measured both as a general question and as unmet need. Parents were asked how easy or hard it is to get care with response categories of very easy, somewhat easy, somewhat hard, or very hard. Parents were asked if there was any time during the past 12 months when their child needed a specific service but was not able to get it. These questions were asked for 3 services: 1) visit to a medical specialist; 2) visit to a dentist or dental hygienist; and 3) prescription medicine.

Impact of the Priority List We particularly wanted to determine if some OHP children were not receiving needed services because these services fell below the line of the priority list. All parents were asked the following question: "As you may know, OHP doesn't pay for all treatments. During the past 12 months, has OHP ever refused to pay for care that your child's doctor said your child needed?" Parents answering yes were then asked the following 2 open-ended questions: "What treatment was it?" and "Why wouldn't they pay for it?" Using the verbatim responses to both questions, we categorized each child reporting an uncovered service along 2 dimensions: 1) the reason for the denial; and 2) the type of treatment. (This methodology is described elsewhere.²⁹) We also asked whether the child got the service anyway, who paid for the service, and whether or not the child's health had gotten worse as a result of the denial of the service.

Statistical Analyses

² tests were used to determine the unadjusted statistical significance of all variables. However, some differences shown in bivariate analyses for CSHCN might be explained by their poorer health status or by differences in their age and gender composition. To test the differential impact of OHP on satisfaction and access, we used regression analysis to hold these and other covariates constant. Nine regressions were estimated: whether the parent was somewhat or very dissatisfied with overall quality of care; whether the parent did file, or thought about filing, a complaint; whether care was somewhat or very hard to get; unmet need for specialist visit, dental care, or prescription medicine, respectively; whether OHP refused to pay for a needed service; and whether OHP refused to pay because the service was below the line. Because all of these dependent variables are bivariate, logistic regression was used for estimation.

Two dummy variables were used to capture CSHCN: 1 for children with disabilities and 1 for children with asthma. Children in the general OHP population constituted the reference group. Covariates included age, gender, race/ethnicity, general health status, parent's education, parent's employment status, and geographic location. Because of the complex sample design, weighting and standard error adjustments were made using SUDAAN software (Research Triangle Institute, Research Triangle Park, NC) for all analyses. The weights also include an adjustment for nonresponse.

	RESULTS

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Comparison of CSHCN With Those in the General OHP Population

Descriptive Analysis: Sociodemographics and Health Status Table 1 compares sociodemographic characteristics and health status for the 3 groups of OHP children. Children with disabilities were significantly older than other OHP children, probably reflecting the different eligibility requirements of the programs. The greater prevalence of boys among the children with disabilities is consistent with other studies.^4,30 Reflecting the population of the State as a whole, the majority of all children were white and non-Hispanic.

Satisfaction

Parents were also asked how satisfied they were with the overall quality of care under OHP. Again, the vast majority of all parents reported that they were very or somewhat satisfied. However, a relatively small but statistically significant number of parents of children with disabilities were dissatisfied: 9% versus 3% of the other 2 groups of parents.

Parents had also been asked to rate their satisfaction with a wide range of individual factors associated with their child's care, including their ability to see a given doctor, availability of after-hours care, travel and waiting times, and amount of time spent with the doctor. The majority of parents rated these aspects of care as very good or excellent, with no differences across groups (data not shown).

Finally, parents were asked first whether they had lodged a formal complaint with their physician or health plan over the past year, and then whether they had ever thought about filing a complaint. Hardly any parents had filed a formal complaint, but considerably more had thought about doing so (Table 2). Parents of children with asthma were more than twice as likely to have thought about complaining as parents of children in the general OHP population. The most common reason for complaint (for all 3 groups) was that their child's plan did not cover, or would not pay for, certain services.

Access

Parents were asked how easy or hard it was to get the care they thought their child needed over the last 12 months (Table 2). The vast majority of parents reported that it was very or somewhat easy, with no significant differences across the 3 groups.

Most studies of access include utilization measures. We do not examine utilization here, as we expect utilization to be naturally higher for CSHCN than for those without. This is, in fact, the case. Children with disabilities and children with asthma both report significantly higher use rates for hospital and physician services than do children in the general OHP population (analysis not shown). Instead, we compare unmet need for services (Table 3). Although OHP CSHCN report receiving more health care services than other OHP children, they still may not receive as many as they need.

Relatively few parents of children with disabilities report that they were not able to obtain needed access to a specialist, but a surprisingly high proportion of parents of children with asthma reported unmet need for specialist care. Children with asthma were significantly more likely to need, but not receive, a specialist visit: 12.9% compared with 3.6% for children in the general OHP population. There were no differences across the 3 groups of children with regard to unmet need for dental care or prescription medicine.

Priority List

Parents of CSHCN were significantly more likely to report that OHP had refused to pay for a treatment that their child needed. This occurred particularly frequently among children with disabilities; one fifth of these children had an uncovered servicetwice as many as children in the general OHP population (19.1% vs 9.8%). The priority list accounted for only some of these uncovered services; parents of only 4% to 5% of CSHCN reported that OHP would not pay for a service because it was below the line. Overall, most uncovered services were denied because of managed care plan policies and procedures and not because of the priority list (eg, the desired brand-name drug was not in the plan's formulary, child went to the emergency department without previous authorization from his/her primary care physician, etc). For all 3 groups of children, prescription drugs were by far the most frequently mentioned treatment that OHP would not pay for. Allergy medications were specifically mentioned by many of the children with asthma reporting uncovered services. All allergy-related treatments are below the line on the priority list.

A surprising number of children got the treatment anyway, including the majority of children with disabilities. In most of these cases, the parents paid for the treatment themselves. Of those children who did not succeed in getting the service, about half of their parents reported that their health had gotten worse as a result. This represents approximately 3% to 4% of all CSHCN, and 2% of other OHP children.

Regression Analyses

Some of the differences shown earlier for CSHCN might be explained by their poorer health status or by differences in their age and gender composition. To test the impact of OHP on satisfaction and unmet need, we used regression analysis to hold these and other covariates constant.

Table 4 presents the adjusted odds ratios only for the 2 variables capturing CSHCN to focus the presentation. When significant, the covariates are nearly always in the expected direction (eg, children in poorer health status are more likely to report unmet need for services). The complete regression results are available from the authors on request.

The logistic regressions confirm the descriptive results. Parents of children with asthma were significantly more likely to have filed, or thought about filing, a complaint; they also were significantly more likely to report an unmet need for specialist care. Parents of children with disabilities were more likely than parents of children in the general OHP population to report that OHP would not pay for a service that their child needed (although the odds ratio was significant only at the 10% level). Children with asthma were not any more likely to have a service denied by OHP, once we controlled for health status and other factors. However, they were more likely to have a service denied because it was below the line on the priority list (albeit only significant at the 0.10 level). Descriptive results had shown that parents of children with disabilities had been more dissatisfied with quality of care; this finding disappeared once we controlled for other factors. There were also no differences between CSHCN and comparison children with regard to how easy or hard it was to get care, unmet need for dental care, or unmet need for prescription medicine.

Children With Disabilities in Managed Care Versus Fee-for-Service

As noted earlier, about one third of children with disabilities in Oregon remain in fee-for-service. Table 5 compares the characteristics of those children with those children with disabilities enrolled in managed care plans. There were no differences between the 2 groups of children with regard to age, gender, race/ethnicity, or current general health status as reported by their parents. Children with disabilities in fee-for-service were significantly more likely to have become SSI eligible because of a physical disability, whereas those in managed care were relatively more likely to be eligible because of mental illness or mental retardation/developmental disabilities. Consistent with their higher rate of physical disabilities, parents of children in fee-for-service reported that their children require significantly more help with activities of daily living.

Finally, children with disabilities in fee-for-service were significantly more likely than children in managed care plans to have health insurance in addition to OHP (48% vs 10%), usually through a parent's employer. We suspect that this is why many of these children were exempted from enrolling in a managed care plan.

Using both descriptive statistics and logistic regression, we found no differences in utilization, satisfaction, or unmet need between these 2 groups of children. Children with disabilities experienced the same 12-month utilization rates of hospital, physician (including specialist), dentist, and prescription drug services as children in fee-for-service (data not shown). Parents of both groups of children expressed similar levels of satisfaction with OHP and with their physicians (data not shown). Similarly, as shown in Table 6, there were no differences in the abilities of the 2 groups of children with disabilities to secure access to specialists or other needed services. Children in fee-for-service were just as likely to have OHP refuse to pay for a given service because it was below the line as were children in managed care. Nevertheless, almost one fifth of both groups of children reported that, for whatever reasons, OHP would not pay for a needed service. Prescription drugs were the most frequently mentioned such service, but services of specific concern to CSHCNs (such as medical supplies, durable medical equipment, and physical therapy) were also cited.

It is possible that managed care might have a disproportionate impact on children with certain disabilities but not others. To test this, we reestimated the logistic regressions, including not only dummy variables for type of disability but also interaction terms of disability type with managed care. None of these interaction terms were statistically significant (data not shown).

	CONCLUSION

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The ideal quasi-experimental design would consist of pre- and post-OHP measures of access for both OHP CSHCN and those without. Unfortunately, it was not possible to collect baseline measures of access before implementation of OHP. However, our main goal was not to compare children in fee-for-service with those in managed care, but to compare the managed care experience of CSHCN with the managed care experience of other children. Thus, we compared 2 groups of CSHCN: 1) children eligible for OHP because they received SSI because of a disability; and 2) children not on SSI but who had a diagnosis of asthma documented through medical claims or encounter data. The experiences of these 2 groups of children were contrasted with those of a third: children in the general OHP population.

Our findings confirmed those of others that access to specialty care may be problematic for some CSHCN.^15,17,31 Surprisingly, children with disabilities reported levels of unmet need for specialty care that were no different from those for children in the general OHP population. Those children in SSI may have already been linked to specialists and able to maintain those relationships. Children with asthma, however, were significantly more likely than other children to report that they had needed, but did not receive, a specialist visit during the past year. Children with asthma were also more likely to have thought about filing a complaint and to have an uncovered service.

Early fears that the priority list would restrict access to needed care seem primarily unfounded. Relatively few children (5% or less) reported that OHP would not pay for a needed service because it was below the line. Below the line services may be covered if a comorbid condition is present, an exceptions process intended to prevent the inappropriate denial of services. In the case of allergy treatment, asthma is considered a qualifying comorbid condition, ie, allergic rhinitis may exacerbate asthma symptoms resulting in increased utilization of primary care physician, emergency room, or hospital services. Despite this, the frequency of denials for allergy drugs was higher for children with asthma.

Policy Implications

Under the Oregon Health Plan, Medicaid managed care has not had a substantial differential impact on children with disabilities relative to those in the general OHP population. Similarly, children with disabilities who are enrolled in capitated plans seem to enjoy access comparable to children with disabilities who remain in fee-for-service. This is almost certainly attributable to OHP's planning, preparation, and policies surrounding the enrollment of the SSI population. Several safeguards were instituted including an exemptions procedure for children whose multiple health care needs could not be met through a single managed care plan. In addition, caseworkers assess nonexempt children's health care needs at the time of enrollment and submit a continuity of care referral form to the managed care plan to ensure that ongoing needs are not disrupted. Once enrolled in a plan, Exceptional Needs Care Coordinators (an OHP requirement of all plans) are responsible for helping children with disabilities navigate the managed care system.

Nevertheless, nearly 1 out of every 5 children with disabilities (regardless of whether in managed care or in fee-for-service) reported that OHP would not pay for a service that they needed. Some of these services were particularly relevant to children with disabilities (eg, therapies, equipment, etc.), suggesting potential unmet need resulting from the OHP benefit package, provider availability, or both. Because we rely on parent report, we do not know whether these services were in fact medically necessary. More research is needed to determine if children with disabilities are truly encountering difficulties accessing Medicaid services in Oregon, and how Oregon compares to other states.

Children, who were not SSI-eligible but who had asthma seemed to have particular difficulty obtaining services, like specialty care, that are available only by referral. These children, who qualified for OHP through TANF or SOBRA, were not eligible for the same consumer protections afforded SSI-eligible children. If States want to enroll CSHCN into managed care programs, policymakers must develop mechanisms for identifying all CSHCN, monitoring the quality of care, and ensuring that they receive medically necessary services. This will require the development of new tools, as existing measures like Health Plan Employer Data and Information Set are not adequate for this group of children.³¹

	ACKNOWLEDGMENT

The research reported in this study was conducted under Health Care Financing Administration Contract No. 500-94-0056.

	FOOTNOTES

The statements contained in this paper are those of the authors and no endorsement by HCFA should be inferred or implied.

^a The Balanced Budget Act categorically defined CSHCN as those participating in any of 5 programs: SSI, Katie Beckett plan, MCHB Title V, federal foster care or adoption assistance, and foster care or out-of-home placements funded from other sources.¹

Received for publication Sept 11, 2000; accepted Nov 13, 2000.

Address correspondence to Janet B. Mitchell, PhD, Health Economics Research, Inc, 411 Waverley Oaks Rd, Suite 330, Waltham, MA 02452. E-mail: jmitchell{at}her-cher.org

	ABBREVIATIONS

TANF, Temporary Assistance for Needy Families; SOBRA, Sixth Omnibus Budget Reconciliation Act; CSHCN, children with special health care needs; SSI, Supplemental Security Income; OHP, Oregon Health Plan.

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