HEALTH POLICY CENTER RE S E AR C H RE P O R T Assessing Health Care Access among Medicaid/CHIP-Enrolled Children in Illinois Changes in Policy and Practice to Improve Access Jennifer M. Haley Carla Willis Genevieve M. Kenney Emily M. Johnston Julia Long Kristen Brown April 2023 AB O U T T HE U R BA N I NS T I T U TE The Urban Institute is a nonprofit research organization that provides data and evidence to help advance upward mobility and equity. We are a trusted source for changemakers who seek to strengthen decisionmaking, create inclusive economic growth, and improve the well-being of families and communities. For more than 50 years, Urban has delivered facts that inspire solutions-and this remains our charge today. Copyright © April 2023. Urban Institute. Permission is granted for reproduction of this file, with attribution to the Urban Institute. Cover image by Tim Meko. Contents Acknowledgments iv Assessing Health Care Access among Medicaid/CHIP-Enrolled Children in Illinois 1 Background 3 Data and Methods 8 Results 11 Discussion and Policy Implications 20 Conclusion 26 Appendix Tables 27 Notes 31 References 34 About the Authors 37 Statement of Independence 39 Acknowledgments This report was funded by the J. B. and M. K. Pritzker Family Foundation. We are grateful to them and to all our funders, who make it possible for Urban to advance its mission. The views expressed are those of the authors and should not be attributed to the Urban Institute, its trustees, or its funders. Funders do not determine research findings or the insights and recommendations of Urban experts. Further information on the Urban Institute's funding principles is available at urban.org/fundingprinciples. We appreciate the insights and perspectives of the national and state-based key informants we interviewed. We also thank Natalie Lawson, Andy Schneider, and Kelly Whitener for helpful comments and Liza Hagerman and Lauren Lastowka for excellent editorial assistance. iv ACKNOWLEDGMENTS Assessing Health Care Access among Medicaid/CHIP-Enrolled Children in Illinois Extensive evidence shows that coverage through Medicaid and the Children's Health Insurance Program (CHIP) improves access to and receipt of health care that children need, with benefits that extend throughout a child's life (Boudreaux et al. 2016; Brown et al. 2015; Howell and Kenney 2012; MACPAC 2021; Miller and Wherry 2018; Thompson 2017; Wagnerman et al. 2017; Wherry et al. 2018). 1 At the same time, there is concern that some children with Medicaid/CHIP coverage may face systematic barriers that constrain their access to care, potentially because of factors such as insufficient provider payments that limit provider participation, cumbersome administrative practices, and transportation and other logistical hurdles when seeking care (Bishop et al. 2014; Children's Health Fund 2016; MACPAC 2011; Petersen and Miller 2016; Zero to Three and CLASP 2022). Understanding how Medicaid and CHIP are working in individual states is important because service delivery systems as well as the health, demographic, and socioeconomic composition of the target population vary across states and because states have considerable latitude over the policy choices that shape the program. In this study, we used a mixed-methods approach to examine access patterns for children enrolled in Medicaid/CHIP in Illinois as part of a larger project identifying and assessing strategies for increasing family economic stability and opportunities in the state (Giannarelli et al. 2023; Giannarelli, Minton, and Wheaton 2023; Hahn, Pratt, and Knowles 2023). Illinois has a number of features that make it particularly important for study: it has a large and expansive Medicaid/CHIP program for children, in 2019 it had the seventh largest child enrollment level among all states, and it was the first state to cover children regardless of immigration status (Brooks et al. 2020; Coughlin and Cohen 2007). 2 In this report, we draw on 2016–19 3 National Survey of Children's Health (NSCH) data among Medicaid/CHIP-enrolled 4 children in Illinois and interviews with national and Illinois-based child health key informants to assess access experiences and potential barriers faced by Medicaid/CHIP-enrolled children, reasons for these barriers, how barriers vary across subgroups of children in the state, and changes in policy and practice that could improve access to care. Key takeaways are as follows:  Though most Medicaid/CHIP-enrolled children ages 2 to 17 in Illinois obtained basic care and few were reported to have unmet health service needs, more than 4 in 10 experienced at least one potential access barrier-which includes reports of a parent always or usually feeling frustrated when trying to obtain health care for their child, the child not receiving preventive medical care in the past 12 months, the child not receiving preventive dental care in the past 12 months, and/or having an unmet need for health care services. This rate was not statistically significantly different from the rate for Medicaid/CHIP-enrolled children nationwide. » The NSCH further suggests that reported access barriers for Medicaid/CHIP- enrolled children in Illinois were larger than for privately insured children in the state, but these differences were explained by differences in observed health status and socioeconomic characteristics between the two groups.  Key national and state-level informants we interviewed indicated that the NSCH findings resonated with their impressions that most Medicaid/CHIP-enrolled children's basic health needs are being met, but they also shared that several challenges remain. They reported feeling confident that few Medicaid/CHIP-enrolled children in the state have unmet needs for primary care and that most have access to basic care. But several key informants shared that many Illinois families face logistical challenges obtaining care for their children and were concerned that children with Medicaid/CHIP coverage in the state were not obtaining sufficient ongoing preventive care.  Key informants also added further context to these findings, identifying the subset of children with chronic, intense health needs as often being underserved and at higher risk of experiencing access challenges, as well as certain types of care (e.g., specialty care, behavioral health care, and oral health care) where access is more challenging and subgroups (e.g., children of color, children in immigrant families, and children in rural areas) who face larger barriers. » NSCH data do not allow for a precise assessment of variation in barriers across subgroups of Illinois children, but some of the subgroups that key informants mentioned face more access challenges in Illinois were found to face higher barriers in national survey data (Haley et al. 2023).  While reasons for some of these problems were described by key informants as universal across the country, several informants identified reasons for access challenges 2 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS among Medicaid/CHIP-enrolled children that were specific to Illinois and its managed care program. Many cited the insufficiency of providers, in part because of inadequate payment rates and cumbersome reimbursement procedures in Illinois's Medicaid/CHIP program, as a key factor driving provider shortages and reduced access to care, while inadequacies in available data were identified as a reason for insufficient understanding of where and why access gaps exist.  Key informants identified several changes to policy and practice in Illinois that they thought would improve access and better meet children's needs. In addition to increased provider reimbursement rates in Medicaid/CHIP managed-care contracting (either through targeted or general increases), other changes in payment policies, and improved data collection and data-driven changes in policy and practice, informants raised needs for incentivizing plans to support consistent use of pediatric preventive care, increases in provider capacity for types of care with greater unmet need such as pediatric/adolescent behavioral health care, reductions in logistical burdens families face obtaining care, and targeted efforts to improve access for subgroups at higher risk of barriers-in addition to broader changes to support families' work, transportation, child care, and other needs. In the following sections, we provide background on the state's public health insurance programs for children, existing evidence on access and quality in the programs, and our study methodology, followed by study results. We conclude with policy implications, including recommendations from key informants on changes that would lower access barriers and target needs that our research identified. This analysis, along with a companion report on quantitative findings nationally (Haley et al. 2023), highlights challenges that remain in ensuring that Medicaid/CHIP-enrolled children have access to health care that addresses their needs in a timely way. Background Public Health Insurance Coverage for Illinois Children Medicaid/CHIP programs for children in Illinois differ from other states in a few important ways. As shown in box 1, eligibility guidelines for children in Illinois's Medicaid/CHIP program, known as All Kids, are more expansive than in most states. With an upper Medicaid/CHIP income eligibility threshold of 318 percent of the federal poverty level (FPL) in 2019, only eight states extended eligibility higher (Brooks, Roygardner, and Artiga 2020). Like about two-thirds of states, Illinois covers immigrant children lawfully residing in the country without a five-year waiting period. But it was also among only HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 3 seven states in 2019 that extended coverage to all children regardless of immigration status, including undocumented immigrant children, using state funds. In fact, the state's program was the first in the nation to offer coverage to all children regardless of immigration status, along with a buy-in option for children above income cutoffs, when it was implemented in 2006 (Coughlin and Cohen 2007). Medicaid/CHIP enrollees can be served either through fee-for-service arrangements or through managed care organizations (MCOs), and most enrollees nationwide are served through MCOs, with 36 states serving more than three-quarters of children in MCOs. 5 Illinois is distinct in its relatively recent transition to statewide mandatory managed care for most Medicaid enrollees. 6 In 2010, only 3 percent of program expenditures went to MCOs; a decade later, this rate was about 70 percent. 7 In 2019, the Illinois Department of Healthcare and Family Services (HFS) spent $14.0 billion on enrollee health benefits and related services, and MCO payments accounted for approximately 68 percent or $9.6 billion (HFS 2020). In that year, 81 percent of child enrollees were enrolled in MCOs. 8 And by 2021, the state had transitioned young people in or formerly in foster care into managed care via the YouthCare program. 9 Historically, payments to providers have been lower for Medicaid than Medicare or private coverage, which can affect providers' willingness to serve Medicaid-enrolled patients (Decker 2012; Zuckerman and Goin 2012; Zuckerman, Skopec, and McCormack 2014; Zuckerman, Williams, and Stockley 2009). Fee- for-service Medicaid payments to providers in Illinois were lower than the national median, likely indicating that the capitated rates paid by the state to MCOs are also relatively low (Zuckerman, Skopec, and Epstein 2017). While the state has implemented increases for certain services including children's vaccines, dental care, and early intervention services over recent years and maintains a value-based purchasing program, in 2019, reimbursement rates for physicians were only 59 percent of Medicare rates across all services in Illinois, compared with a median of 72 percent nationwide (Zuckerman, Skopec, and Aarons 2021). 10 Primary care services were reimbursed at the lowest rate-only 44 percent for a similar set of services compared with Medicare, lower than an average of 67 percent nationwide (Zuckerman, Skopec, and Aarons 2021). 4 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS BOX 1 Illinois's Medicaid/CHIP Program at a Glance Overview: The Illinois Department of Health Care and Family Services (HFS) administers medical assistance programs for Illinois, which includes traditional Medicaid, CHIP, and state-funded coverage for children regardless of immigration status, together known as All Kids. In FY 2021, these programs combined provided health care services for 3.4 million members across the state and accounted for $26.3 billion in state and federal spending.a During this same period, children accounted for 1.5 million, or 43 percent, of all enrollees. Income eligibility rules: Illinois's upper threshold in 2019 was 318 percent of the federal poverty level (FPL) or $67,800 annual for a family of three in 2019, higher than the national median of 255 percent of FPL. For federally supported Medicaid/CHIP, children with family incomes below 147 percent of FPL are covered by Medicaid, while those with incomes above this level but below 318 of percent of FPL are covered by CHIP. Immigration eligibility rules: Like 34 of 51 Medicaid programs and 23 of 36 CHIP programs in 2019, Illinois has adopted the Immigrant Children's Health Improvement Act (ICHIA) option to cover immigrant children lawfully residing in the country without a five-year waiting period. In addition, Illinois was one of only six states (along with California, Massachusetts, New York, Oregon, and Washington) and the District of Columbia in 2019 to use state-only funds to cover all children regardless of immigration status, including undocumented immigrant children. The program applies the same income thresholds as Medicaid/CHIP and was the nation's first state to cover such children.b Enrollment period and renewals: Illinois provided 12-month continuous eligibility for Medicaid/CHIP- enrolled children without the need to renew even if family income changes, like 24 other Medicaid programs and 26 of 36 CHIP programs in 2019. Like nearly all (46) states, Illinois attempts to process renewals automatically using external data sources (known as ex parte renewal) and uses renewal forms prepopulated with known data. Premiums and cost-sharing: Like 30 states that charged premiums or enrollment fees for children's enrollment and 23 that required cost sharing, some CHIP enrollees in Illinois with higher incomes paid premiums for coverage in 2019 (as described below, these have since been rescindedc). Benefits: Illinois provides a comprehensive benefit package, covering both outpatient care and inpatient hospital care, including primary and specialty care and prescription drugs. Like all Medicaid programs, Illinois Medicaid covers comprehensive Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefits. As with 16 of 36 other separate CHIP programs in 2019, Illinois's CHIP program also covered the full array of EPSDT benefits in CHIP.c Care delivery: HFS mandates enrollment in capitated managed care for most children through the HealthChoice Illinois Managed Care Program. In 2019, 81 percent of children were enrolled managed care programs.a HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 5 Sources: Brooks, Roygardner, and Artiga (2020); "MR #22.14: All Kids Share, Premium 1 and 2 Programs are Ending," Illinois Department of Human Services, July 22, 2022, https://www.dhs.state.il.us/page.aspx?item=128210; "Moms and Babies," Illinois Department of Healthcare and Family Services, accessed March 20, 2023, https://www2.illinois.gov/hfs/MedicalPrograms/AllKids/Pages/MomsAndBabies.aspx. Notes: CHIP = Children's Health Insurance Program. a "Number of Persons Enrolled in the Entire State," HFS, accessed March 20, 2023, https://www2.illinois.gov/hfs/info/factsfigures/Program%20Enrollment/Pages/Statewide.aspx. b Terri Coughlin and Mindy Cohen, A Race to the Top: Illinois's All Kids Initiative (San Francisco: Kaiser Family Foundation, 2007), https://www.kff.org/wp-content/uploads/2013/01/7677.pdf. c Effective July 1, 2022, the state's CHIP program changed from a separate program to a Medicaid expansion program; among other changes, this eliminated premiums and copayments. The state's Medicaid/CHIP program has also used design features that can serve as barriers or facilitators to children's enrollment and access. In 2019, Illinois employed both a 90-day waiting period for CHIP and collected premiums and cost-sharing for enrollees beginning at 142 percent of FPL. Research finds that waiting periods during which many children must be uninsured before they can enroll in a state's CHIP program, as well as premiums and cost-sharing policies, can contribute to coverage instability and reduce access to care (Artiga, Ubri, and Zur 2017; MACPAC 2017). At the same time, the state provided 12-month continuous eligibility for children and takes advantage of other federal options such as presumptive eligibility to streamline enrollment. Moreover, benefits in both Medicaid and CHIP are comprehensive, including the full array of EPSDT (or Early and Periodic Screening, Diagnostic and Treatment) benefits. Several changes affecting Medicaid/CHIP enrollment and retention have occurred since 2019, related to both the COVID-19 pandemic and state policy changes. During the pandemic, states were prohibited from disenrolling people from Medicaid under the Families First Coronavirus Response Act's continuous coverage requirement beginning in March 2020. During that time, enrollees did not have to undergo periodic renewals, which could have changed patterns of coverage continuity and stability of access to care. Utilization patterns also likely shifted as stay-at-home orders and virus exposure concerns kept many parents from seeking health care for their children (McMorrow et al. 2020). 11 Moreover, in addition to shifts in policies under pandemic-related flexibilities, cost-sharing and premiums for children's coverage have been rescinded as of 2022 going forward. 12 Finally, the state has a unique history of litigation related to access to children's medical services in Medicaid. In 1992, lawyers from the Legal Assistance Foundation of Metropolitan Chicago representing Medicaid-eligible children filed a case against Illinois HFS for failing to provide equal health care access for children covered by Medicaid, in violation of the federal Medicaid Act. 13 However, the case was stayed while Illinois Medicaid underwent reform. The case was restored in 2004 and representatives 6 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS for Medicaid-enrolled children argued successfully that the state failed to communicate the availability of and provide preventative services (e.g., immunizations and hearing exams) as part of the EPSDT program, and a consent decree was negotiated between parties to rectify the inequitable health care access. Among the terms of the agreement were increasing reimbursement rates to treat Medicaid beneficiaries and for a study to be conducted investigating access to specialist services, and enforcement of the terms was the subject of continuing litigation. 14 Quality and Access to Care for Medicaid/CHIP-Enrolled Children in Illinois In addition to Illinois's broad eligibility for children and value-based payment arrangements, the state has instituted a range of quality-improvement initiatives. 15 The Centers for Medicare & Medicaid Services (CMS) requires state Medicaid and CHIP programs that contract with MCOs to develop and maintain a Medicaid and CHIP quality strategy to assess and improve the quality of health care and services provided by managed care plans (CMS 2021). According to CMS, "quality strategies offer states an opportunity to describe their population health and quality-improvement priorities, to articulate their vision for health delivery reform, and to provide a road map for how to achieve those goals" (CMS 2021). HFS developed the Comprehensive Medical Programs Quality Strategy with an expressed purpose to improve outcomes in the delivery of health care at a community level. The Quality Strategy focuses on improving equity, prevention, and public health; paying for value and outcomes; tracking analytics and making data-driven decisions; and keeping people connected to communities (HFS 2021). As shown in box 2, the state has pursued several goals, two of which are related to pediatric health care access. BOX 2 2021–24 Illinois HFS Comprehensive Medical Programs Quality Strategy Roadmap for Quality Framework The roadmap includes five pillars of improvement that indicate the areas where HFS intends to strategically focus their efforts over a three-year period. Each pillar is accompanied by goals and targets designed to operationalize the pillar concept. The pillars include maternal and child health, adult behavioral health, child behavioral health, equity, and community-based services and supports. Several goals regarding maternal and child health and child behavioral health are most relevant for children, including the following:  Decrease preterm birth rates and infant mortality. HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 7  Increase rates of well-child visits.  Improve immunization rates.  Better integrate physical and behavioral health services for children.  Improve children's transitions of care between behavioral health inpatient and community- based settings.  Increase access to community-based behavioral health care to reduce children's avoidable psychiatric hospitalizations.  Leverage mobile crisis response to reduce avoidable behavioral health emergency department visits. Source: Illinois Department of Healthcare and Family Services (HFS), 2021–2024 Comprehensive Medical Programs Quality Strategy (HFS, 2021), https://www2.illinois.gov/hfs/SiteCollectionDocuments/IL20212024ComprehensiveMedicalProgramsQualityStrategyD1.pdf. Notes: CHIP = Children's Health Insurance Program. HFS = Illinois Department of Health Care and Family Services. However, several measures of access to and utilization of care among Medicaid/CHIP-enrolled children fell below the national average in 2019, according to annually reported quality metrics from the Healthcare Effectiveness Data and Information Set (HEDIS, the national standard for quality measurement that allows programs to track their progress over time and benchmark their rates to other programs or private plans) and Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys (nationally recognized surveys that ask Medicaid enrollees to report on their health care experiences using composite measures and global ratings). 16 Illinois fell at or below the 49th percentile nationally for 69 percent (11 of 16) of HEDIS measures and for 78 percent (18 of 23) of CAHPS survey measures (table A.1) (HFS 2020). Below we describe the methodology used for both components of this report, followed by findings from the survey analysis and key informant interviews. We conclude with a discussion of the implications of our findings. Data and Methods For this mixed-methods study, we used (1) quantitative data from the 2016–19 National Survey of Children's Health (NSCH) and (2) qualitative data collected from key informant interviews. 8 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 2016–19 National Survey of Children's Health We use 2016–19 data from the NSCH to assess issues with accessing care among Medicaid/CHIP- enrolled children in Illinois and how they differ from Medicaid/CHIP-enrolled children in the US overall, privately insured children in Illinois, and privately insured children in the US overall. The NSCH is an annual household survey conducted by the US Census Bureau that collects information on the physical and emotional health of children ages 17 and under. Estimates from the NSCH are meant to be representative of children younger than 18, nationally and at the state level, who are not institutionalized and are living in a housing unit. 17 We obtained publicly available datasets for each year of the survey between 2016 and 2019. 18 All estimates are pooled across four years, from 2016 to 2019, to increase sample sizes and allow for more accurate estimates. 19 Observations missing data on insurance coverage or access measures are not included in our estimates. We refer to responses reported by a "parent" but note that some responses were provided by nonparent caregivers. Our primary analytic sample is children with Medicaid/CHIP coverage in Illinois, defined as children whose parent reported that the child was covered by "Medicaid, Medical Assistance, or any kind of government assistance plan for those with low incomes or a disability." We examine outcomes at the state and national levels, specifically, rates of children with any unmet need for services in the past year; children whose parent reported being always or usually frustrated when obtaining care for their child in the past year; children without a preventive medical visit in the past year; and children without a preventive dental visit in the past year. We consider these barriers individually as well as whether a child experienced any of the four barriers. More information about the precise survey instrument language used to construct each of these subgroups is available in a corresponding national chartbook (Haley et al. 2023). Based on US Preventive Services Task Force recommendations, we further restricted the "no preventive dental visit" group to children ages 2 to 17 to reflect later initiation of dental care, compared with medical care. To accommodate this sample restriction, our measure of any of the four barriers is similarly limited to children ages 2 to 17. We test the significance of differences between children in Illinois with Medicaid/CHIP coverage and all US children enrolled in Medicaid/CHIP, and between Medicaid/CHIP-covered children in Illinois and privately insured children in Illinois using two-tailed t-tests. We also estimate adjusted differences between these groups using multivariable analysis controlling for individual and family socioeconomic characteristics. 20 These results are presented in appendix table A.3. HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 9 Key Informant Interviews To better understand the patterns we observed in the NSCH data, in late 2022 and early 2023, we also conducted interviews with national- and state-level key informants as well as representatives of the Illinois Medicaid program. In total, we conducted one national interview and five state-level interviews and also communicated by email with follow-up questions. Interviews with key informants explored their overall impressions regarding health care utilization and unmet needs for children in the Medicaid/CHIP program in Illinois, comments on whether the findings we observed in the NSCH align with their observations in the state, their perception of variation in barriers to care across subgroups of children, the extent to which patterns in Illinois are consistent with national patterns, and actions the state Medicaid/CHIP program could take to help ensure enrollees' needs are met. The research team then analyzed findings by classifying key informants' observations on the range of topics covered in each interview and identifying common themes across interviews. Study methods for the interviews were approved by the Urban Institute's Institutional Review Board. Limitations Our analysis has several limitations. First, the measure of health insurance coverage in the NSCH refers to coverage at the time of the survey, whereas the access measures refer to experiences over the prior 12 months, and the data do not indicate whether the access challenges identified occurred when the child had the coverage identified at the time of the survey. For instance, if a child who was covered part of the year with Medicaid/CHIP and part with private coverage experienced an unmet need, we cannot determine whether that occurred during the time they had Medicaid/CHIP or private coverage, or an access barrier could have occurred during a time a child was uninsured. Access challenges may be smaller if the analysis had been limited to only those with continuous Medicaid/CHIP coverage over the course of a year. Second, our analysis of NSCH data relies on the definition of Medicaid in the survey instrument, which is broad and not limited to Medicaid, and it does not specifically mention CHIP. It also does not make specific reference to state-specific Medicaid or CHIP program names like All Kids, which could result in parents misreporting their child's insurance coverage. 21 Second, estimates of the total number of Medicaid/CHIP-enrolled children differ between the NSCH and other data sources and are lower than in administrative data (Haley et al. 2023). Third, the NSCH does not have an overall measure of experiencing barriers to care, and the low rates of reported unmet need compared with the other measures reported here suggest that not all barriers to care are captured by this measure. We report 10 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS multiple measures in this analysis to explore the range of factors that may represent barriers to care. Fourth, the NSCH provides a general assessment of access among Medicaid/CHIP-enrolled children overall and does not allow for an assessment of how well Medicaid and CHIP programs are specifically meeting the health needs of children with chronic or acute needs, with serious mental health needs, or who are medically fragile. Other research would be needed to explore concerns about access to specialty or other care for these children. Fifth, small sample sizes do not allow for reliable investigation of differences in access among Illinois children enrolled in Medicaid/CHIP by subgroup or across regions of the state, and as with all survey data, responses are self-reported and subject to error and bias. In addition, we did not speak directly with enrollees or their parents or caregivers about their experiences accessing care through Illinois's Medicaid/CHIP program, and we conducted only a small number of key informant interviews and may well be missing important insights. Finally, while the survey measures access experiences in Medicaid/CHIP during the 2016–19 period (before the pandemic, associated economic and health care access changes, and several national and state-level policy changes), our conversations with key informants occurred during 2022 and 2023 and included their reflections of more recent years. Results Below, we describe patterns of access barriers for children in Illinois according to the NSCH, followed by analysis of interviews with key informants. Children's Unmet Needs and Reported Challenges Accessing Care in Illinois Though most Medicaid/CHIP-enrolled children ages 2 to 17 in Illinois obtained basic care and few were reported to have unmet health service needs, more than 4 in 10 experienced at least one potential access barrier. We find that children enrolled in Medicaid/CHIP in Illinois faced similar rates of access barriers compared with children enrolled in Medicaid/CHIP nationally during the 2016 to 2019 period (figure 1). 22 Among Medicaid/CHIP-enrolled children in Illinois, 5.1 percent were found to have any unmet need for services, 5.2 percent had parents who reported being very or somewhat frustrated when obtaining care for their children, 22.7 percent received no preventive medical visits during the past 12 months, and 20.9 percent of children ages 2 to 17 had not received any dental care visit-rates that HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 11 were not significantly different from those for Medicaid/CHIP-enrolled children nationally. Overall, 43.2 percent of Medicaid/CHIP-enrolled children in Illinois ages 2 to 17 experienced one or more of these issues, similar to a rate of 40.1 percent nationally. FIGURE 1 Children's Unmet Health Service Needs, Parental Frustration Obtaining Care, and Utilization of Preventive Services in the Prior 12 Months, by Insurance Type and Geography, 2016–19 Illinois Medicaid/CHIP US Medicaid/CHIP Illinois private US private 5.1% Reported any unmet need for services, past 12m 4.0% (ages 17 and under) 1.6%* 1.7%* 5.2% Parent always or usually felt frustrated when trying to get 3.7% care for child, past 12m (ages 17 and under) 1.4%* 1.4%* 22.7% No preventive medical visits, past 12m 22.2% (ages 17 and under) 14.5%* 15.3%* 20.9% 19.1% No preventive dental visits at all, past 12m (ages 2 to 17) 13.0%* 13.1%* 43.2% Faced any of the four barriers to care, past 12m (ages 2 to 40.1% 17) 27.0%* 27.8%* Source: Authors' analysis of the National Survey of Children's Health, 2016–19. Notes: "12m" = 12 months. * indicates estimate for privately insured Illinois children is significantly different from Illinois children with Medicaid/CHIP at the 0.05 level or that estimate for privately insured US children is significantly different from US children with Medicaid/CHIP at the 0.05 level. 12 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS Comparisons between Medicaid/CHIP-Enrolled Children and Privately Insured Children The NSCH further suggests that access barriers for Medicaid/CHIP-enrolled children in Illinois were larger than for privately insured children in the state but that these differences were mostly explained by differences in observed health status and socioeconomic characteristics between the two groups, which is similar to national patterns. Compared with privately insured children in Illinois, children enrolled in Medicaid/CHIP in Illinois were more likely to have had an unmet need for health services (5.1 percent compared with 1.6 percent), more likely to have faced frustration when trying to access care (5.2 percent compared with 1.4 percent), and more likely to not have had either a preventive medical visit (22.7 percent compared with 14.5 percent) or a preventive dental visit (20.9 percent compared with 13.0 percent) in the past 12 months, contributing to a significantly higher rate of children ages 2 to 17 experiencing any of these issues among Medicaid/CHIP-enrolled children compared with privately insured children (43.2 percent and 27.0 percent, respectively). However, differences in rates of these access barriers were no longer significant after adjusting for differences in characteristics between Illinois children with Medicaid/CHIP and those with private insurance (table A.2). This suggests these differences are largely attributed to differences in the two groups' health and socioeconomic characteristics. These differences within Illinois between Medicaid/CHIP-enrolled and privately insured children are consistent with differences observed nationally. In the US, 40.1 percent of Medicaid/CHIP-enrolled children reported any of the four access barriers, compared with 27.8 percent of privately insured children. But these differences were reduced after adjusting for differences in characteristics between children with Medicaid/CHIP and those with private insurance nationally, indicating that they were mostly explained by differences in observed health status and socioeconomic characteristics between the two groups (Haley et al. 2023). In contrast, comparing Medicaid/CHIP-enrolled children nationally with their uninsured counterparts finds much larger access barriers for uninsured children than Medicaid/CHIP-enrolled children-with many of these gaps remaining even when adjusting for differences in characteristics between the two groups (Haley et al. 2023). Though NSCH sample sizes do not allow for an assessment of variation in these measures across subgroups of Medicaid/CHIP-enrolled children in Illinois, considering patterns in the US overall may be informative given that levels of access barriers were relatively similar between Illinois and the national average. In addition, the characteristics of Medicaid/CHIP-enrolled children in Illinois are fairly similar to Medicaid/CHIP-enrolled children overall (table A.3). However, the population of Illinois HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 13 Medicaid/CHIP-enrolled children is older than the US average and has a smaller share of white enrollees than Medicaid/CHIP enrollees nationally (28.8 percent and 33.9 percent, respectively) and a larger share of children with at least one parent born outside of the US than nationally (40.1 percent and 35.1 percent, respectively). This may owe in part to the more expansive eligibility for immigrant children in Illinois than in most states. For example, among Medicaid/CHIP-enrolled children in the US overall, rates of reporting any barrier were significantly higher for non-Hispanic Black, American Indian/Alaska Native, and Asian/Pacific Islander children than for non-Hispanic white children; higher for children in fair or poor health than for those in excellent or very good health; higher for those with a gap in coverage in the past year than those with 12 months of coverage; and higher for those living in poverty than those in families with incomes above 400 percent of FPL (Haley et al. 2023). Additional comparisons by subgroup are discussed in Haley and colleagues (2023). Overall, 2016–19 NSCH data indicate that 40.9 percent of Medicaid/CHIP-enrolled children in Illinois are Hispanic, 24.0 percent are non-Hispanic Black, 28.8 percent are non-Hispanic white, 2.1 percent are non-Hispanic Asian/Pacific Islander, and 4.0 percent are another or multiple race or ethnicity, while 4 in 10 have at least one parent born outside the US and a quarter live in households for which English is not the primary language. In addition, nearly 2 in 10 were reported to be in fair or poor health, about 8 in 10 were in families with incomes below 200 percent of FPL, and about 4 in 10 were adolescents. Key Informants' Perceptions of Access to Basic Care among Medicaid/CHIP- Enrolled Children in Illinois National and state-level informants indicated that the NSCH findings resonated with their impressions that most Medicaid/CHIP-enrolled children's basic health needs are being met, but they expanded upon several access challenges. FEW UNMET NEEDS IN THE GENERAL POPULATION FOR PRIMARY CARE According to several key informants we interviewed, relatively few children enrolled in Medicaid/CHIP in Illinois have unmet health needs for primary care and most have access to basic care. As one key informant indicated, it is "very rare that a child will not have a primary care doctor on Medicaid" in Illinois. But some also indicated that not reporting unmet needs does not necessarily mean that they do not exist. For instance, families without regular interactions with providers may not have gotten services 14 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS that would identify health problems that need to be addressed. Some key informants indicated that most children are believed to be healthy, and thus it is not surprising that many parents report that their children do not lack needed care. More broadly, one key informant shared that individuals who do not feel empowered to advocate for themselves or their children would not necessarily indicate that their children's needs were not met unless the situation was dire. As noted above, quality metrics also indicate some relatively low rankings of family-reported access among Medicaid/CHIP-enrolled children in Illinois compared with other states. One key informant stated that such rankings could be indicative of access problems: "If you look at some of those rankings, some of them are very low….that indicates…either they're not getting access, or they're getting access and they don't feel it's appropriate or at an appropriate level." GENERAL LOGISTICAL CHALLENGES TO OBTAINING CARE Additionally, even when families technically can access care for their children, general barriers to balancing children's health care needs and other responsibilities, as well as logistical challenges, can mean that in practice they often cannot obtain it. As described by one key informant, parents face many "factors that make it more difficult for people to…have the capacity or bandwidth to either make or keep appointments." Challenges include  parents' responsibilities as part of their busy lives, especially work (getting to providers during working hours means taking time off work and often lost income, and we heard that providers do not offer care during convenient hours, sometimes necessitating emergency department use for routine or preventive care);  insufficient transportation, especially in areas outside of Cook County where public transportation is less robust;  lack of child care for siblings and restrictions on using Medicaid/CHIP-covered nonemergency medical transportation for siblings when a parent takes a child to a provider visit; and  other social determinants of health, such as unstable housing, food insecurity, or disability, that can exacerbate difficulties accessing care. SUBOPTIMAL USE OF ONGOING PREVENTIVE CARE Some key informants we interviewed were not surprised to hear about survey findings that many children lacked ongoing preventive care, observing that some families-regardless of coverage status- assume that health care is not needed unless a child is sick. On top of logistical challenges all families HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 15 face, some key informants indicated that seeking preventive care when a child is not sick is even more difficult for many Medicaid/CHIP-enrolled families than for privately insured families because of the financial and other challenges mentioned above. Some also suggested that managed care contracts in the state do not adequately hold health plans accountable for delivering preventive care to all children or that preventive care is not reimbursed highly enough to incentivize providers to encourage it sufficiently. Access Challenges for Children with Greater Health Needs and for Certain Types of Care Key informants discussed a subset of children with chronic, intense health needs as often being underserved and certain types of care where access is more challenging. CHALLENGES FOR CHILDREN WITH INTENSE ONGOING NEEDS Several key informants described a smaller group of children with chronic and intense care needs for whom access to services is particularly challenging. One key informant said that children with acute rare conditions, such as pediatric cancers, will most likely to be seen, such as by academic institutions, regardless of their ability to pay or Medicaid/CHIP reimbursement concerns but that children with complex ongoing needs, such as intensive behavioral health needs, are likelier to face challenges. We're talking about a smaller universe of kids [facing access and quality concerns], but they have intense needs. -Key informant TYPES OF CARE THAT ARE MORE DIFFICULT TO ACCESS Key informants repeatedly noted that mental health and oral health services are among the hardest to access by Medicaid/CHIP enrollees in Illinois, including children. Access to specialty services, such as pulmonology and asthma-related services as well as a variety of therapy services, were also noted as particularly concerning for young people. Commonly, low access was attributed to insufficient providers of these types of services; in particular, one key informant noted the "very high need many youth have regarding mental health services" and insufficient behavioral health providers, while another clarified that "an adolescent or child may be able to get a service...[but not] the number of 16 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS services they need, especially around…speech therapies, language therapy, physical therapy, any of those kinds of therapies." That is, they perceived that some children do have access to some care, but it is not the full breadth of care or frequency they need for optimal health. Subgroups of Medicaid/CHIP-Enrolled Children Facing Greater Access Challenges Key informants described variation in access barriers by age, geographic location, race/ethnicity, immigration status, language, and other characteristics. National survey estimates indicated that noncitizens, children with a foreign-born parent, adolescents, Black children, children in fair or poor health, children living with a single parent, and children who experienced a period without coverage in the past year were among the groups with a higher likelihood of reporting unmet needs for care, while children who were Hispanic, Asian American/Pacific Islander, American Indian/Alaskan Native, noncitizens, or children with non-English-speaking or foreign-born parents were at higher risk of having no preventive medical and/or dental visits (Haley et al. 2023). Key informants identified several subgroups as ones they thought experienced greater access challenges. For instance, several issues for older children, including transitions from pediatric providers to adult providers, can contribute to lower use of preventive care. As one key informant noted, consequences can be dire if this means not catching early intervention opportunities. Several key informants also reported that access problems were exacerbated for enrollees who reside in the rural parts of the state that are experiencing workforce shortages (especially among specialists) and hospital consolidations. One informant noted that multi-hour travel was not uncommon for these families and that travel can be further complicated by unpredictable weather: "the bulk of the population [of] the state is in northeastern Illinois; there's a public transit system here. Not so much in central and southern Illinois. And you might need to drive two hours to get to the specialty care. [Although] people may be used to driving distances…what happens when your kid's really sick, and there's a blizzard outside? Now you've got a bigger issue." Telehealth can be helpful for children living far from providers, but one key informant was skeptical about the use of telehealth alone for meeting the full array of children's health needs. Several key informants identified discrimination, lack of language access, inadequate numbers of diverse providers, and immigration-related concerns as factors that can limit families' willingness or ability to obtain health services for their children, resulting in children in marginalized racial/ethnic groups, immigrant families, and families with limited English proficiency as subgroups at risk of not accessing needed care. Multiple key informants specifically identified immigration-related concerns HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 17 that have persisted even after reversal of the Trump administration's "public charge" rule, which would have expanded the criteria for denial of green card applications to include participation in some public programs. 23 One key informant expressed the challenges of counteracting such fears and rebuilding immigrant families' trust in receiving public benefits, saying, "you just can't undo some of that damage." Another brought up children in the foster system or receiving care from children and family services systems, noting "significant delays and concerns about how these managed care organizations are delivering specialty services and where they're delivering them." All the studies on outcomes show better outcomes from a provider that...looks like you, speaks your language, is from your ethnicity….I think that's the next frontier. -Key informant Potential Reasons for Access Challenges in Illinois's Medicaid/CHIP Program While reasons for some of these problems were described by key informants as universal across the country, key informants identified several potential reasons for access challenges among Medicaid/CHIP-enrolled children that were specific to Illinois and its managed care program. PROVIDER PAYMENT RATES Nearly all key informants shared that where access problems exist in the state, they are often a result of insufficient availability of providers, and the low availability of providers is in part because of low Medicaid/CHIP provider payments. In particular, one key informant noted that rates tied to Medicare rates leave pediatrics behind: "we've got a system [that] pays a provider to drop their pediatric services and just focus on adults. It's heartbreaking; we have providers that are backing out of children's crisis services, they're backing out of the most needed, most difficult services, because they could get more doing less." 18 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS We suffer from the same thing that every other state has, which is frequently providers say, "you don't pay us enough." -Key informant OTHER PAYMENT POLICIES IN ILLINOIS MEDICAID/CHIP MANAGED CARE Relatedly, some key informants described bureaucratic issues with slow payment and billing rejections compounding the effects of low payment rates. Moreover, slow payment was described by one key informant as disproportionately affecting children most in need of intense services: "it tends to be the kids with more difficult problems that the providers don't want to see. They want the fast money, because Medicaid rates are low." Are we paying for preventative visits...in the way that we should?…Are payment structures, quality incentives, or….structural investment in the program…aligned? What are our priorities? -Key informant INADEQUATE HEALTH PLAN IMPLEMENTATION OF STATE REQUIREMENTS One key informant also raised the importance of plan-level policies and implementation of plan requirements, noting that requirements are not always met in practice: "[There is] what's in the Medicaid managed care contract, but then what health plans actually implement issues around medical necessity standards, and how those get operationalized at the health plan level." MISSED OPPORTUNITIES FOR USE OF CLAIMS DATA TO UNDERSTAND ACCESS CHALLENGES One key informant spoke about data limitations and concerns that existing data, such as nationally standardized data collected through HEDIS, do not accurately reflect a full picture of conditions in a state. Because HEDIS measures in Illinois have only been collected since managed care began in the state's Medicaid program in 2012 and do not include all members (such as those who are not continuously enrolled in a managed care plan), this informant indicated that they do not allow for a long- term analysis of changes over time, complete statewide assessment of access in the state, sufficient HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 19 assessment of variation across providers, or understanding of whether differences across plans are because of providers, geographic locations, or other differences. In addition, this informant indicated that providers are not always using detailed codes when submitting claims, resulting in claims information that can be misleading and missed opportunities for finding "hotspots," or service areas, providers, or geographic locations with access problems. This can also make quality appear "lower than it really is" because of the appearance that care is not being provided that actually may be. LOW DATA QUALITY ON ENROLLEES' RACE AND ETHNICITY AND INSUFFICIENT SUPPLY OF DIVERSE PROVIDERS Data on enrollees' race and ethnicity was also described by one key informant as of poor quality, limiting the state agency's ability to assess inequitable access in a way that is "actionable." This person noted that improving the quality and completeness of race and ethnicity data as well as use of claims data was not given sufficient attention amidst other competing priorities, asking, "What's the biggest burning fire? Data? It's never the biggest burning fire." Key informants also pointed to insufficient availability of diverse providers to provide linguistically and culturally competent care. Discussion and Policy Implications State-level survey data from 2016–19 as well as insights from national and state-based key informants suggest that Illinois's Medicaid/CHIP program is meeting the basic health needs of most children enrolled in the program, with the majority receiving preventive medical and dental care and few having parents who reported needs for health services that were unmet altogether. Though access issues were more prevalent for children enrolled in Medicaid/CHIP than for children with private coverage, these differences were eliminated when taking into account observed differences in the health and socioeconomic status of children with different types of coverage, suggesting that some access barriers are present regardless of coverage type and that broad policy solutions will be needed beyond Medicaid and CHIP to address access challenges families face and achieve greater health equity. But about 4 in 10 Medicaid/CHIP-enrolled children ages 2 to 17 in Illinois were observed to face at least one problem accessing care. In particular, medical and dental preventive care use was well below recommendations by the American Academy of Pediatrics and Bright Futures that all children have an annual preventive care visit, below standards for pediatric oral care, and below CMS's goal of 80 percent of Medicaid/CHIP-enrolled children obtaining well-child screenings annually (GAO 2019). 24 Further, key informants identified several barriers to accessing the full complement of care to address 20 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS children's health care needs, especially among children with complex ongoing health conditions and for other key subgroups, and they identified specific challenges some families face obtaining behavioral health, specialist, and oral health care. We found that patterns of access for Medicaid/CHIP-enrolled children in Illinois were similar to Medicaid/CHIP patterns in the nation. This suggests that, as a whole, policy solutions to ameliorate access concerns in Illinois would likely also be relevant for other states. Key informants identified a number of changes that both state agencies and MCOs could take that could improve access for Medicaid/CHIP enrollees in Illinois. These include the following. Raise Provider Payment Rates to Improve the Number and Distribution of Providers Low availability of participating providers, because of insufficient provider payment rates, was raised by many key informants as a primary reason for access challenges in Illinois's Medicaid/CHIP program. State policies mentioned in interviews to incentivize more pediatric and adolescent providers to participate in the programs and increase the number and availability of medical and dental providers accepting Medicaid/CHIP patients included the following:  Raise reimbursement rates, either overall or for targeted outcomes.  Expand "pay for performance" policies in MCO contracts that emphasize high-quality children's care, coupled with sufficient state staff capacity for close monitoring of plan performance.  Establish financial sanctions for failure to improve, as documented by secret shopper studies and externally validated audit studies for all specialties and/or service areas.  Improve payment speed and reduce billing rejections. Considerable prior research confirms key informants' views that low provider payment rates reduce participation of providers, including specialists and mental health providers, in Medicaid (Decker 2012; Zuckerman and Goin 2012; Zuckerman, Skopec, and McCormack 2014; Zuckerman, Williams, and Stockley 2009). Research also finds that though Medicaid spending in Illinois has grown in recent years, spending growth in Illinois has been lower than other states in the region and the average across the country and that it spends proportionally less on managed care (Choi, Disher, and Merriman 2021), suggesting room for more investment in the program in Illinois. Policy options to raise provider reimbursement could include the state increasing per member or per month rates to MCOs or requiring that a larger share of these payments go to providers. Moreover, with the evidence presented here suggesting that children of color are the majority of child Medicaid/CHIP enrollees in the state, raising HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 21 rates could have implications for improving racial and ethnic equity in access to quality care and health outcomes. 25 Incentivize Health Plans to Better Support Consistent Use of Pediatric Preventive Care With more than one in five Medicaid/CHIP-enrolled children in Illinois reporting not receiving any preventive medical care and a similar share not receiving any dental care in a 12-month period, it appears many are not meeting recommended standards from the American Academy of Pediatrics and American Academy of Pediatric Dentistry and may also be missing routine immunizations. 26 In addition to the rate increases highlighted above, key informants suggested that Illinois and its MCOs could develop several related priority policy changes:  Improve the visibility and effectiveness of MCO performance improvement or incentive structures to promote preventive service use, continuing to put the onus on the plans to make children's preventive care a primary focus and improve utilization of preventive care.  Enact public education campaigns, including in coordination with public health systems, to raise awareness of the benefits of ongoing preventive medical and dental care, especially for older children.  Incentivize providers to complete (and make claims for) all screenings (e.g., by not bundling developmental screenings and depression screenings). In a recent survey, about half of states, including Illinois, indicated implementing provider rate increases for dental care in 2022 or 2023, which could incentivize more oral health providers to serve Medicaid/CHIP-enrolled patients. However, despite rate increases in hospital, nursing facility, and home- and community-based service care, Illinois did not report such a rate increase for primary care providers (Hinton et al. 2022). Recent research examining state-level variation in the association between rates of managed care use among pediatric Medicaid enrollees and their use of EPSDT benefits suggests that state policy levers such as reimbursement rates, quality oversight, and overall implementation of Medicaid managed care could affect children's receipt of preventive services (Kusma, Cartland, and Davis 2021). MCOs may also be able to expand the use of engagement strategies such as electronic communication to patients and families about preventive appointments to support preventive care use (Polacheck and Gears 2020; Vulimiri et al. 2019). With reduced rates of obtaining care nationally during the early pandemic period after these data were collected, making up for missed preventive care will likely be especially critical as we move into a postpandemic period (McMorrow et 22 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS al. 2020), 27 making state and MCO action to improve preventive care use among children even more critical. Focus Access Improvement Efforts on Service Areas with Greater Unmet Need, Including Behavioral Health Though these findings suggest that only a small number of Medicaid/CHIP-enrolled children in Illinois may have unmet health needs, they appear to be more likely among those with multiple complex ongoing conditions, including children with high behavioral health care needs or greater needs for specialty health care. Thus, it will be essential for state Medicaid/CHIP and other agencies as well as MCOs to improve coordination of care for children with complex needs and ensure adequate behavioral health care access. In addition to holding managed care plans accountable for providing needed services and adequate provider networks (CMS 2017), the state could support a wider range of providers in serving children's mental health needs. Key informants shared some specific ideas for the Medicaid/CHIP program and other state agencies to improve access to behavioral health care for children and adolescents:  Ensure that providers, including child and adolescent mental health providers, who participate in Medicaid/CHIP are actually accepting new patients.  Partner with universities to create a pipeline for child and adolescent mental health providers.  Develop funding mechanisms to provide more mental health services in schools through regular assessments, school-based service delivery, and coordination of care provided in and outside of school.  Better coordinate children's service delivery across a range of providers. With the US Surgeon General as well as the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, and the Children's Hospital Association declaring a children's mental health crisis in late 2021 (Office of the US Surgeon General 2021), 28 ensuring full access to mental health care is likely only going to grow in importance. HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 23 Reduce Logistical Burdens and Develop Targeted Interventions for Subgroups of Children Facing Greater Access Challenges One in twenty Medicaid/CHIP-enrolled children in Illinois had parents who reported always or usually feeling frustrated when trying to get care for their children. To the extent that these frustrations may reflect logistical challenges, the state and its contracted MCOs could more aggressively and proactively publicize transportation benefits and provide oversight and enforcement on their adequacy, expand provider networks in rural areas where there are transportation-related shortages, and require some types of providers to expand evening and weekend hours (CMS 2017; MACPAC 2021; Silow-Carroll et al. 2021). Key informants also identified several subgroups of children, such as those in families of color or immigrant families, as facing greater access barriers. With most Medicaid/CHIP-enrolled children being children of color-and more than half of the state's total Medicaid enrollees being people of color-the suggestion from many key informants for the state to increase reimbursement rates could also have implications for improving health equity. 29 Illinois's status as the first state in the nation to expand coverage to all children regardless of documentation status, as well as recent efforts such as a requirement that MCOs implement Performance Improvement Projects in relation to maternal and pediatric health disparities in 2022 and the state's expansion for additional groups of immigrant adults and seniors, seem to illustrate prioritization of equity in state health programs (Coughlin and Cohen 2007; Hinton et al. 2022). 30 But additional state efforts were identified by key informants as needed to reduce such barriers overall and specifically for subgroups who may be facing greater access challenges:  Integrate more community health workers and other community-based providers from underserved communities in delivery systems to help families access services.  Ensure access to nonemergency medical transportation in rural areas without public transportation and enforce rural network adequacy standards.  Increase outreach in multiple languages.  Improve messaging to address lingering public charge concerns, with more official statements from state agencies that using public benefits is safe, as well as empowering providers to discuss families' apprehensions with them and help alleviate concerns.  Require more evidence-based implicit bias training and interventions for providers.  Expand pipeline programs to encourage more diverse provider pools that can provide culturally competent care. 24 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS Increase Accountability and Transparency, Including through Improved Data Quality and Analytic Capacity Some key informants promoted increased reporting of MCOs' performance on providing adequate care and fulfilling state requirements, which would be visible to other plans as well as to consumers, to increase accountability. Relatedly, one key informant shared several ideas for ensuring that data on performance of providing access to enrolled children in each MCO, each provider, each region of the state, and statewide was not only available, but also high quality:  Train providers on how to bill correctly and completely to ensure data are indicative of services provided; educate providers on quality measures so they capture more details in claims data to identify where gaps exist.  Invest in state systems that support accurate, timely, and complete data collection and analysis.  Establish additional statewide quality metrics in addition to HEDIS.  Improve identification of enrollees' race/ethnicity to support efforts to address health inequities and infrastructure that allows plans to share and update data with the state (e.g., if an MCO identifies information for an enrollee for whom the state has incomplete or erroneous data, the plan should be able to share it with the state).  Build robust analytic capacity of both the state agency and MCOs to use claims and other data to assess access and quality and develop data-driven interventions to address problems. A recent scan of websites of state Medicaid agencies, insurance departments, and Medicaid managed care organizations, including those in Illinois, found that finding publicly available information on MCO performance can be difficult and included recommendations for improved transparency including MCO-specific child health dashboards and improved compliance of transparency regulations (Corcoran et al. 2021). In addition to recommending a range of changes to Medicaid/CHIP and MCO policy and practice that they believed could directly improve access to care, key informants repeatedly emphasized that such changes would be insufficient to alleviate housing insecurity, food insecurity, and other hardships that can also harm children's health. For instance, one key informant described "what can be a really confusing and complicated system" for enrolling in a variety of public programs, suggesting that reducing administrative barriers to enrolling in programs beyond Medicaid/CHIP could support families in meeting their children's needs. In a recent study, Hahn, Pratt, and Knowles (2023) identified a number of strategies that could increase access to a range of public benefits in Illinois. Many of the key HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS 25 informants we interviewed also advocated for policies such as state-level child tax credits and improved access to affordable child care, as well as increased funding for other systems such as the state's public health system, as necessary components of a strategy to improve not only access to care but also overall well-being among Medicaid/CHIP-enrolled children in Illinois. Conclusion Fully 1.5 million children in Illinois relied on Medicaid/CHIP for coverage by November 2022, according to CMS, and data presented here indicate that the majority of children in the programs are children of color. 31 Given eligibility rules for the programs, many enrollees are in low-income families who may be facing a variety of challenges related to financial stability and problems meeting basic needs-offering the programs the opportunity to provide access to quality health care to children who may otherwise lack it. But survey data and key informants' perspectives alike identified limitations to the programs' ability to fully overcome access barriers. As of April 2023, Medicaid-enrolled children in Illinois and across the country will face the risk of losing coverage as the pandemic-related continuous coverage requirement expires and Medicaid renewals resume (Alker and Brooks 2022; Buettgens and Green 2022). It will be important for the state to ensure that eligible children remain enrolled during the unwinding process so that the access burdens described here do not grow. Simultaneously, Illinois's Medicaid/CHIP program is in a unique position to build on its already-expansive eligibility guidelines and better address the access challenges identified here. With strategic prioritization, sustained focus, adequate funding, investments in targeted policies and programs, and continuous feedback from stakeholders, including enrollees and their families, the Illinois Medicaid/CHIP program can better ensure children are receiving timely, convenient, low-cost access to the full range of services to address their health needs, with lifelong implications for their healthy growth and development (Center on the Developing Child 2010). 26 HEALTH CARE ACCESS AMONG MEDICAID/CHIP-ENROLLED CHILDREN IN ILLINOIS Appendix: Tables TABLE A.1 Selected HEDIS and CAHPS Quality Rankings Relative to National Average, Illinois, 2019 Between the 50th Between the 75th At or above Below the 25th Between the 25th and and 74th and 89th the 90th percentile 49th percentiles percentiles percentiles percentile HEDIS Childhood BMI percentile Annual dental visit Immunizations for immunization documentation-total adolescents-combo status-combo 3 2 (Meningococcal, Tdap, HPV) Well-child visits in Weight assessment and Prenatal and the third, fourth, counseling for nutrition postpartum care- fifth, and sixth years and physical activity for timeliness of of life children/adolescents- prenatal care BMI percentile documentation Well-child visits in Weight assessment and Prenatal and the first 15 months counseling for nutrition postpartum care- of life and physical activity for postpartum care children/adolescents- counseling for nutrition Follow-up after Weight assessment and Metabolic hospitalization for counseling for nutrition monitoring for mental illness-7- and physical activity for children and day follow-up children/adolescents- adolescents on counseling for physical antipsychotics activity Follow-up after Medication hospitalization for management for people mental illness-30- with asthma- day follow-up medication compliance 50% Medication management for people with asthma- medication compliance 75% CAHPS Customer service Getting care quickly Getting needed Rating of specialist (general (general population) care (general seen most often population) population) (general population) Shared How well doctors Rating of personal decisionmaking communicate (general doctor (general (general population) population) population) APPENDIX 27 Rating of health Rating of all health Rating of specialist plan (general care (general seen most often population) population) (CCC) Getting needed How well doctors Coordination of care (CCC) communicate (CCC) care for children with chronic conditions (CCC) Getting care Rating of personal quickly (CCC) doctor (CCC) Customer service Family-centered care: (CCC) personal doctor who knows child (CCC) Shared decisionmaking (CCC) Rating of all health care (CCC) Rating of health plan (CCC) Access to specialized services (CCC) Access to prescription medicines (CCC) Family-centered care: getting needed information (CCC) Source: HFS (2020); "Managed Care Contracts," HFS, accessed March 20, 2023, https://www2.illinois.gov/hfs/MedicalProviders/cc/Pages/ManagedCareContracts.aspx. Notes: HEDIS = Healthcare Effectiveness Data and Information Set. CAHPS = Consumer Assessment of Healthcare Providers and Systems survey. CCC = children with chronic conditions. Measures shown are drawn from HEDIS and CAHPS and may apply to Medicaid only or all AllKids enrollees. CAHPS measures for CCC are based on a supplement with questions to children most likely to have chronic conditions. 28 APPENDIX TABLE A.2 Adjusted Differences Reported Access Challenges in the Prior 12 Months, Children Ages 17 and Under with Medicaid/CHIP Coverage Compared with Children with Private Insurance Coverage and Uninsured Children, Illinois, 2016–19 Difference between Medicaid/CHIP-Enrolled Children and Privately Insured Children Adjusted Adjusted Adjusted Unadjusted model 1 model 2 model 3 Difference Difference Difference (pp) (pp) (pp) Any unmet need for services, past 12m 3.5%* 1.7% 1.1% -0.1% (ages 17 and under) Parent always or usually felt frustrated when trying to get care for child, past 3.7%* 2.9%* 1.9% 2.4% 12m (ages 17 and under) No preventive medical visits, past 12m 8.2%* 9.3%* 5.0% -4.5% (ages 17 and under) No preventive dental visits, past 12m 7.8%* 8.7%* 9.9%* 5.9% (ages 2 to 17) Faced any of the four barriers to care, 16.2%* 16.1%* 11.2%* 2.0% past 12m (ages 2 to 17) Source: National Survey of Children's Health, 2016–19. Notes: 12m = 12 months. CHIP = Children's Health Insurance Program. Coverage is measured at time of survey. * indicates significantly different from rate for children not enrolled in Medicaid/CHIP, at the p < 0.05 level. Model 1 controls for age, sex, and self-reported health status; model 2 adds race/ethnicity, survey language, parental family nativity, and family structure; model 3 adds family income. TABLE A.3 Selected Demographic Characteristics of Children enrolled in Medicaid/CHIP in Illinois and the United States, 2016–19 Medicaid/CHIP- Medicaid/CHIP- enrolled children in enrolled children in Illinois the US Age Ages 5 and under 27.4% 33.9%* Ages 6–11 32.8% 35.1%* Ages 12–17 39.8% 31.0%* Sex Male 50.2% 51.6%* Female 49.8% 48.4%* Race/ethnicity American Indian/Alaska Native, non-Hispanic 0.0% 0.6% Asian/Pacific Islander, non-Hispanic 2.1% 3.6%* Black, non-Hispanic 24.0% 21.1%* Hispanic 40.9% 35.3%* APPENDIX 29 Medicaid/CHIP- Medicaid/CHIP- enrolled children in enrolled children in Illinois the US Other/multiple races, non-Hispanic 4.1% 5.6%* White, non-Hispanic 28.8% 33.9%* Health status Excellent/very good health 81.1% 83.3%* Good health 16.7% 13.9%* Fair/poor health 2.3% 2.8%* Family nativity One or more parents born outside the US 40.1% 35.1%* No adults in household born outside the US 59.9% 64.9%* Family structure Two caregivers are biological, adoptive, or step-parents 52.0% 56.3%* One caregiver is biological, adoptive, or step-parent 35.7% 31.8%* No caregiver is biological, adoptive, or step-parent 12.2% 11.9%* Language Primary household language is English 74.7% 77.5%* Primary household language is not English 25.3% 22.5%* Past-year insurance coverage Covered for 12 months of the past year 95.6% 95.5%* Had gap in coverage in the past year 4.4% 4.5%* Not covered for 12 months 0.0% 0.0% Family income <100% FPL 37.9% 42.2%* 100–200% FPL 42.4% 36.3%* 200–400% FPL 15.4% 16.8%* Above 400% FPL 4.4% 4.7%* Source: Authors' analysis of the National Survey of Children's Health, 2016–19. Notes: CHIP = Children's Health Insurance Program. FPL = federal poverty level. *indicates difference between Medicaid/CHIP- enrolled children in Illinois and Medicaid/CHIP-enrolled children in the US is significantly different from Illinois Medicaid/CHIP at the 0.05 level. 30 APPENDIX Notes 1 Matt Broaddus, "Medicaid at 50: Covering Children Has Long-Term Educational Benefits," Center on Budget and Policy Priorities, July 7, 2015, https://www.cbpp.org/blog/medicaid-at-50-covering-children-has-long-term- educational-benefits. 2 "Monthly Child Enrollment in Medicaid and CHIP: Aug 2019," Kaiser Family Foundation, accessed March 20, 2023, https://www.kff.org/medicaid/state-indicator/total-medicaid-and-chip-child- enrollment/?currentTimeframe=39&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22 %7D. 3 We analyze 2016–19 data to have sufficient sample size across multiple data years but do not include data after 2019 because patterns would likely be atypical because of COVID-19. 4 The NSCH indicator of Medicaid/CHIP coverage asks about coverage by "Medicaid, Medical Assistance, or any kind of government assistance plan for those with low incomes or a disability." See the Data and Methods section. 5 Elizabeth Hinton and Jada Raphael, "10 Things to Know about Managed Care," Kaiser Family Foundation. March 1, 2023, https://www.kff.org/medicaid/issue-brief/10-things-to-know-about-medicaid-managed-care/. 6 HFS has offered voluntary managed care as an option for Medicaid members since 1976. However, most providers contracted directly with HFS using the fee-for-service model. In 2004, the Illinois Legislature worked toward expanded use of managed care. HFS launched the Integrated Care Program (ICP) to help implement both the Illinois Medicaid reform legislation (P. A. 096-1501, https://www.ilga.gov/legislation/publicacts/96/096- 1501.htm) and the federal Patient Protection and Affordable Care Act (Pub. L. 111-148, 124 Stat. 119, 111th Cong., March 23, 2010, https://www.congress.gov/111/plaws/publ148/PLAW-111publ148.pdf). P. A. 96-1501 (also known as "Medicaid Reform") requires that 50 percent of Medicaid clients be enrolled in care coordination programs by 2015. (See https://www2.illinois.gov/hfs/SiteCollectionDocuments/requestforpostingforIL2015EQRTRReportF18117.pdf 7 Populations excluded from managed care include some dual-eligible adults, people eligible through spenddown, people qualifying through presumptive eligibility, and those with limited benefits or third-party insurance. See "What is HealthChoice Illinois? And other Frequently Asked Questions," Department of Healthcare and Family Services (HFS), HealthChoice Illinois, accessed March 20, 2023, https://www2.illinois.gov/hfs/SiteCollectionDocuments/ProviderFAQ08232018.pdf; Illinois Office of the Comptroller (2019). 8 "Medical and Managed Care Enrollment by Month-December 2019," HFS, 2019, https://www2.illinois.gov/hfs/SiteCollectionDocuments/201912HB2731Report010720.pdf. 9 "State Approaches to Serving Children in Foster Care through Specialized Medicaid Managed Care Programs," National Academy for State Health Policy, 2021, https://www.nashp.org/wp-content/uploads/2021/02/Foster- care-chart-2-9-2021.pdf 10 "Provider Notices," HFS, accessed March 20, 2023, https://www2.illinois.gov/hfs/MedicalProviders/notices/Pages/default.aspx. 11 Dulce Gonzalez, Michael Karpman, and Jennifer Haley, "Worries about the Coronavirus Caused Nearly 1 in 10 Parents to Delay or Forgo Needed Health Care for Their Children in Spring 2021," Urban Institute, August 18, 2021, https://www.urban.org/research/publication/worries-about-coronavirus-caused-nearly-1-10-parents- delay-or-forgo-needed-health-care-their-children-spring-2021. NOTES 31 12 "Provider Notice Issued 09/09/2022," HFS, August 9, 2022, https://www2.illinois.gov/hfs/MedicalProviders/notices/Pages/prn220909c.aspx. 13 H. R. 1122, Illinois General Assembly, https://www.ilga.gov/legislation/95/HR/09500HR1122.htm. 14 H. R. 1122, Illinois General Assembly, https://www.ilga.gov/legislation/95/HR/09500HR1122.htm; Karen Pierog and Dave McKinney, "Judge Orders Illinois to Boost Medicaid Bill Payments," Reuters, June 30, 2017, https://www.reuters.com/article/us-illinois-budget-medicaid/judge-orders-illinois-to-boost-medicaid-bill- payments-idUSKBN19L310; "Illinois Medicaid Program to Increase Physician, Dentist Payments," Kaiser Health News, June 11, 2009, https://khn.org/morning-breakout/dr00031076/. 15 "Children's Health Coverage in Illinois, Children's Health Care Report Card, accessed March 20, 2023, https://kidshealthcarereport.ccf.georgetown.edu/states/illinois/; see also "Managed Care Contracts," HFS, accessed March 20, 2023, https://www2.illinois.gov/hfs/MedicalProviders/cc/Pages/ManagedCareContracts.aspx (table I in attachment XI identifies the performance measures-beginning on page 242-including preventive measures for children). 16 Composite measures include getting needed care, getting care quickly, how well doctors communicate, and customer service. Global ratings include rating of all health care, rating of personal doctor, rating of specialist seen most often, and rating of health plan (see HFS 2020). 17 "2019 National Survey of Children's Health: Data Users Frequently Asked Questions," US Census Bureau, Associate Director of Demographic Programs, National Survey of Children's Health, August 25, 2020, https://www2.census.gov/programs-surveys/nsch/technical-documentation/methodology/2019-NSCH- FAQs.pdf. 18 "NSCH Datasets," US Census Bureau, October 8, 2021, https://www.census.gov/programs- surveys/nsch/data/datasets.html. 19 "NSCH Guide to Multi-Year Estimates," US Census Bureau, September 30, 2022, https://www2.census.gov/programs-surveys/nsch/technical-documentation/methodology/NSCH-Guide-to- Multi-Year-Estimates.pdf. 20 These include age, sex, self-reported health, race/ethnicity, primary language, parental family nativity, household structure, and family income with three models: model 1, including age, sex, and self-reported health status; model 2, which adds race/ethnicity, survey language, parental family nativity, and family structure; and model 3, which adds family income. 21 "2018 National Health Interview Survey Description," Centers for Disease Control and Prevention, June 2019. pages 35–40, https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Dataset_Documentation/NHIS/2018/srvydesc.pdf. 22 Using National Survey of Children's Health and National Health Interview Survey data, Haley and colleagues (2023) find that nationally, though most Medicaid/CHIP-enrolled children nationally were obtaining key preventive health services and relatively few were reported to have unmet needs, some children were not receiving any preventive medical or dental care within a 12-month period, and others had parents who reported frustrations when seeking care for their children, delays in obtaining care, and problems finding providers during the 2016–19 period. Moreover, several subgroups were found to be at higher risk of facing these challenges, and health care access challenges also appeared to be exacerbated by other material and financial hardships. Several access problems were also found to overlap, suggesting that while many enrollees faced few access barriers, some faced multiple barriers. Some of the analysis presented in this report is similar to the national analysis; however, subgroup differences and state-level analysis of National Health Interview Survey data are not possible to reliably assess for Illinois. 32 NOTES 23 "Public Charge Resources," US Citizenship and Immigrant Services, last updated December 19, 2022, https://www.uscis.gov/green-card/green-card-processes-and-procedures/public-charge/public-charge- resources. 24 "Recommendations for Preventive Pediatric Health Care," American Academy of Pediatrics, accessed March 15, 2023, https://downloads.aap.org/AAP/PDF/periodicity_schedule.pdf?_ga=2.127805389.1386825880.1677605016- 1777318367.1677605015; "State Dental Periodicity Schedules," American Academy of Pediatric Dentistry, accessed March 20, 2023, https://www.aapd.org/research/policy-center/state-dental-periodicity-schedules/. 25 Tiffany N. Ford and Jamila Michener, "Medicaid Reimbursement Rates Are a Racial Justice Issue," To the Point (blog), Commonwealth Fund, June 16, 2022, https://doi.org/10.26099/h5np-x425. 26 "Recommendations for Preventive Pediatric Health Care," American Academy of Pediatrics; "State Dental Periodicity Schedules," American Academy of Pediatric Dentistry. 27 Gonzalez, Karpman, and Haley, "Worries about the Coronavirus Caused Nearly 1 in 10 Parents to Delay or Forgo Needed Health Care for Their Children in Spring 2021." 28 "AAP-AACAP-CHA Declaration of a National Emergency in Child and Adolescent Mental Health," American Academy of Pediatrics, American Academy of Child and Adolescent Psychiatry, and Children's Hospital Association, October 19, 2021, https://www.aap.org/en/advocacy/child-and-adolescent-healthy-mental- development/aap-aacap-cha-declaration-of-a-national-emergency-in-child-and-adolescent-mental-health/. 29 Ford and Michener, "Medicaid Reimbursement Rates Are a Racial Justice Issue." 30 "Health Benefits for Immigrant Adults," HFS, accessed March 20, 2023, https://www2.illinois.gov/hfs/HealthBenefitsForImmigrants/Pages/default.aspx. 31 "November 2022 Medicaid & CHIP Enrollment Data Highlights," Medicaid.gov, accessed March 24, 2023, https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report- highlights/index.html. NOTES 33 References Alker, Joan, and Tricia Brooks. 2022. Millions of Children May Lose Medicaid: What Can Be Done to Help Prevent Them from Becoming Uninsured? Washington, DC: Georgetown University Health Policy Center, Center for Children and Families. Artiga, Samantha, Petry Ubri, and Julia Zur. 2017. "The Effects of Premiums and Cost Sharing on Low-Income Populations: Updated Review of Research Findings." Kaiser Family Foundation. Bishop Tara F., Matthew J. Press, Salomeh Keyhani, and Harold Alan Pincus. 2014. "Acceptance of Insurance by Psychiatrists and the Implications for Access to Mental Health Care." JAMA Psychiatry 71 (2): 176–81. https://doi.org/10.1001/jamapsychiatry.2013.2862. Boudreaux, Michel H., Ezra Golberstein, and Donna D. McAlpine. 2016. "The Long-Term Impacts of Medicaid Exposure in Early Childhood: Evidence from the Program's Origin." Journal of Health Economics 45:161–75. https://doi.org/10.1016/j.jhealeco.2015.11.001. Brooks, Tricia, Lauren Roygardner, and Samantha Artiga. 2020. "Medicaid and CHIP Eligibility, Enrollment, and Cost Sharing Policies as of January 2019: Findings from a 50-State Survey." San Francisco: Kaiser Family Foundation. Brown, David W., Amanda E. Kowalski, and Ithai Z. Lurie. 2015. "Medicaid as an Investment in Children: What is the Long Term Impact on Tax Receipts?" Working paper 20835. Cambridge, MA: National Bureau of Economic Research. Buettgens, Matthew, and Andrew Green. 2021. The Impact of the COVID-19 Public Health Emergency Expiration on All Types of Health Coverage. Washington, DC: Urban Institute. Center on the Developing Child. 2010. The Foundations of Lifelong Health Are Built in Early Childhood. Cambridge, MA: Harvard University. Children's Health Fund. 2016. UNFINISHED BUSINESS: More than 20 Million Children in U.S. Still Lack Sufficient Access to Essential Health Care. Washington, DC: Children's Health Fund. Choi, Francis, Michael Disher, and David F. Merriman. Illinois' Medicaid Program is Expensive, but Spending Will Be Tough to Cut. Champaign: University of Illinois Institute of Government and Public Affairs. CMS (Centers for Medicare and Medicaid Services). 2021. Medicaid and Children's Health Insurance Program (CHIP) Managed Care Quality Strategy Toolkit. Baltimore: CMS. Corcoran, Allie, Emma Hurler, Andy Schneider, and Julia Buschmann. 2021. "Transparency in Medicaid Managed Care: Findings from a 13-State Scan." Washington, DC: Georgetown University Center for Children and Families. Coughlin, Terri, and Mindy Cohen. 2007. A Race to the Top: Illinois's All Kids Initiative. San Francisco: Kaiser Family Foundation. Decker, Sandra. 2012. "In 2011 Nearly One-Third of Physicians Said They Would Not Accept New Medicaid Patients, But Rising Fees May Help." Health Affairs 31 (8): 1,673–79. GAO (Government Accountability Office). 2019. Medicaid: Additional CMS Data and Oversight Needed to Help Ensure Children Receive Recommended Screenings. Report GAO-19-481. Washington, DC: GAO. Giannarelli, Linda, Sarah Minton, and Laura Wheaton. 2023. "The Value of Unclaimed Safety Net Benefits in Illinois." Washington, DC: Urban Institute. Giannarelli, Linda, Kelly Dwyer, Sarah Minton, and Sarah Knowles. 2023. What Portion of Illinois Residents Eligible for Safety Net Benefits Receive Those Benefits? Washington, DC: Urban Institute. 34 REFERENCES Hahn, Heather, Eleanor Platt, and Sarah Knowles. 2023. Strategies for Improving Public Benefits Access and Retention. Washington, DC: Urban Institute. Haley, Jennifer M., Genevieve M. Kenney, Clare Wang Pan, Robin Wang, Victoria Lynch, and Matthew Buettgens. 2021. Uninsurance Rose among Children and Parents in 2019: National and State Patterns. Washington, DC: Urban Institute. Hinton, Elizabeth, Madeline Guth, Jada Raphael, Sweta Heldar, and Robin Rudowitz. 2022. How the Pandemic Continues to Shape Medicaid Priorities: Results from an Annual Medicaid Budget Survey for State Fiscal Years 2022 and 2023. San Francisco: Kaiser Family Foundation HFS (Illinois Department of Healthcare and Family Services). 2020. FY 2019 Annual Report: Medical Assistance Program. Springfield, IL: HFS. ---. 2021. 2021-2024 Comprehensive Medical Programs Quality Strategy. Springfield: HFS. Howell, Embry M., and Genevieve M. Kenney. 2012. "The Impact of the Medicaid/CHIP Expansions on Children: A Synthesis of the Evidence." Medical Care Research and Review 69 (4): 372–96. https://doi.org/10.1177/1077558712437245. Illinois Office of the Comptroller. 2019. Illinois' Massive Shift to Managed Care. Springfield: Illinois Office of the Comptroller. Kusma, Jennifer D., Jenifer Cartland, and Matthew M. Davis. 2021. "State-Level Managed Care Penetration in Medicaid and Rates of Preventive Care Visits for Children." Academic Pediatrics 21 (8): P1, 338–44. MACPAC (Medicaid and CHIP Payment and Access Commission). 2011. "Chapter 4: Examining Access to Care for Medicaid and CHIP." In Report to the Congress on Medicaid and CHIP. Washington, DC: MACPAC. ---. 2017. "Chapter 1: The Future of CHIP and Children's Coverage." Washington, DC: MACPAC. ---. 2021. "Access in Brief: Children's Experiences in Accessing Medical Care." Washington, DC: MACPAC. McMorrow, Stacey, Dulce Gonzalez, Clara Alvarez Caraveo, and Genevieve M. Kenney. 2020. "Urgnet Action Needed to Address Children's Unmet Health Care Needs During the Pandemic." Washington, DC: Urban Institute. Miller, Sarah, and Laura R. Wherry. 2018. "The Long-Term Effects of Early Life Medicaid Coverage," Journal of Human Resources 54 (3): 785–824. https://doi.org/10.3368/jhr.54.3.0816.8173R1. Office of the US Surgeon General. 2021. "Protecting Youth Mental Health: The U.S. Surgeon General's Advisory." Washington, DC: US Department of Health and Human Services. Petersen, Dana, and Rachel Miller. 2016. "Health Care Coverage and Access for Children in Low-Income Families: Stakeholder Perspectives from California." Washington, DC: Mathematica. Polacheck, Stefanie, and Hannah Gears. 2020. "COVID-19 and the Decline of Well-Child Care: Implications for Children, Families, and States." Trenton, NJ: Center for Health Care Strategies. Rudowitz, Robin, Rachel Garfield and Elizabeth Hinton 2019. "10 Things to Know about Medicaid: Setting the Facts Straight." San Francisco: Kaiser Family Foundation. Silow-Carroll, Sharon, Kathy Gifford, Carrie Rosenzweig, Kathy Ryland, and Anh Pham. 2021. Medicaid's Non- Emergency Medical Transportation Benefit: Stakeholder Perspectives on Trends, Challenges, and Innovations. Washington, DC: Health Management Associates. Thompson, Owen. 2017. "The Long-Term Health Impacts of Medicaid and CHIP." Journal of Health Economics 51:26–40. https://doi.org/10.1016/j.jhealeco.2016.12.003. REFERENCES 35 Vulimiri, Madhulika, William K. Bleser, Robert S. Saunders, Farrah Madanay, Connor Moseley, F. Hunter McGuire…and Charlene A. Wong. 2019. "Engaging Beneficiaries In Medicaid Programs That Incentivize Health- Promoting Behaviors." Health Affairs 38 (3): 431–39. https://doi.org/10.1377/hlthaff.2018.05427. Wagnerman, Karina, Alisa Chester, and Joan Alker. 2017. "Medicaid Is a Smart Investment in Children." Washington, DC: Georgetown University Health Policy Institute, Center for Children and Families. Wherry, Laura R., Sarah Miller, Robert Kaestner, and Bruce D. Meyer. 2018. "Childhood Medicaid Coverage and Later-Life Health Care Utilization." The Review of Economics and Statistics 100 (2): 287–302. https://doi.org/10.1162/REST_a_00677. Zero to Three and Center for Law and Social Policy (CLASP). 2022. "Building Strong Foundations: Advancing Comprehensive Policies for Infants, Toddlers, and Families." Washington, DC: Zero to Three and CLASP. Zuckerman, Stephen, and Dana Goin. 2012. How Much Will Medicaid Physician Fees for Primary Care Rise in 2013? Evidence from a 2012 Survey of Medicaid Physician Fees. Washington, DC: Kaiser Family Foundation. Zuckerman, Stephen, Laura Skopec, and Marni Epstein. 2017. "Medicaid Physician Fees after the ACA Primary Care Fee Bump." Washington, DC: Urban Institute. Zuckerman, Stephen, Laura Skopec, and Kristen McCormack. 2014. "Reversing the Medicaid Fee Bump: How Much Could Medicaid Physician Fees for Primary Care Fall in 2015?" Washington, DC: Urban Institute. Zuckerman, Stephen, Laura Skopec, and Joshua Aarons. 2021. "Medicaid Physician Fees Remained Substantially Below Fees Paid By Medicare In 2019." Health Affairs 40 (2). https://doi.org/10.1377/hlthaff.2020.00611. Zuckerman, Stephen, Aimee F. Williams, and Karen E. Stockley. 2009. "Trends in Medicaid Physician Fees, 2003– 2008." Health Affairs 28 (3): 510–19. https://doi.org/10.1377/hlthaff.28.3.w510. 36 REFERENCES About the Authors Jennifer M. Haley is a principal research associate in the Health Policy Center at the Urban Institute, where she studies maternal, child, and parental health and health care; Medicaid and the Children's Health Insurance Program; challenges to accessing the safety net among immigrant families; barriers to enrollment in publicly subsidized health insurance coverage; opportunities for improved collection and use of data on race and ethnicity; health equity; and other issues related to coverage and care for children and families. She holds an MA in sociology from Temple University. Carla Willis is a principal research associate in the Health Policy Center. Her work focuses on Medicaid policy, payment incentives, and delivery system reform. She previously served as the director of performance, quality, and outcomes for the Georgia Medicaid program and holds a PhD in political science from The Ohio State University. Genevieve M. Kenney is a vice president and senior fellow in the Health Policy Center. She is a nationally renowned expert on Medicaid, the Children's Health Insurance Program (CHIP), and health insurance coverage; health care access and quality; and health outcomes for low-income adults, children, and families. She has played a lead role in several Medicaid and CHIP evaluations, including multiple congressionally mandated CHIP evaluations, and has conducted state-level evaluations of the implementation of managed care and other service delivery reform initiatives and policy changes in Medicaid and CHIP. Currently, she is leading a project focused on health equity that involves working with a community advisory board. Her prior work has used mixed methods to examine Medicaid expansions for pregnant women, parents, and children; Medicaid family planning waivers; and a range of policy choices related to Medicaid and CHIP. She received a master's degree in statistics and a doctoral degree in economics from the University of Michigan. Emily M. Johnston is a senior research associate in the Health Policy Center. She studies health insurance coverage, access to care, Medicaid policy, reproductive health, and maternal and infant health, with a focus on the effects of state and federal policies on the health and well-being of women and families. She received her PhD in health services research and health policy from Emory University. Julia Long is a research analyst in the Health Policy Center, where her research focuses on access to health care for low-income children and families. She uses quantitative data analysis to track health ABOUT THE AUTHORS 37 reforms and their impacts on the health of children and their families, leveraging national survey data. In addition, she takes part in qualitative data collection relating to perinatal health and Medicaid. Kristen Brown is a senior research associate in the Health Policy Center. Her research takes a multilevel, transdisciplinary approach to examining racial and socioeconomic health inequities. A trained epidemiologist, her current work focuses on the health impact of the COVID-19 pandemic including the examination of mechanisms through which exposure to adverse social determinants has shaped access to health care resources, insurance coverage stability in children, and strategies for mitigating the long-term effects of the pandemic in communities of color. Before joining Urban, Brown worked at the National Institutes of Health and Emory University. She holds a PhD in epidemiologic science from the University of Michigan. 38 ABOUT THE AUTHORS STATEMENT OF INDEPENDENCE The Urban Institute strives to meet the highest standards of integrity and quality in its research and analyses and in the evidence-based policy recommendations offered by its researchers and experts. We believe that operating consistent with the values of independence, rigor, and transparency is essential to maintaining those standards. As an organization, the Urban Institute does not take positions on issues, but it does empower and support its experts in sharing their own evidence-based views and policy recommendations that have been shaped by scholarship. Funders do not determine our research findings or the insights and recommendations of our experts. Urban scholars and experts are expected to be objective and follow the evidence wherever it may lead. 500 L'Enfant Plaza SW Washington, DC 20024 www.urban.org