HEALTH POLICY CENTER Substance Use Disorder and Mental Health Diagnoses among Medicaid-Enrolled Youth before the Pandemic Summary of Findings from Four States and the District of Columbia Victoria Lynch and Lisa Clemans-Cope April 2023 Key Takeaways ◼ Medicaid is the largest single funder of health services for youth-about two-fifths of adolescents and one-quarter of young adults in the United States are enrolled in Medicaid, and behavioral health–related services are a critical need. ◼ Across five state Medicaid programs in 2018, rates of behavioral health diagnoses-specifically substance use disorder (SUD) and mental health conditions-ranged from lows of about one in six youth enrolled in Medicaid to highs of about one in four youth enrollees, corroborating findings of substantial issues with youth behavioral health conditions even before the pandemic and underscoring the urgent need to increase behavioral health prevention and treatment services and attend to systemic drivers of youth well-being. ◼ That the extent and types of behavioral health diagnoses varied across and within states points to the importance of having community stakeholders, including youth, help shape culturally effective approaches to prevention and treatment. ◼ That racial and ethnic and other demographic patterns in behavioral health diagnoses differed across states shows that it is important for states and local communities to have access to detailed statistics about youth in their local areas. ◼ Youth with a diagnosed SUD or mental health condition had high contact with health care providers in a variety of settings, including disproportionate contact in the emergency department (ED). Roughly half of youth with a behavioral health diagnosis received ED services compared with roughly 20 percent of youth without such a diagnosis. This suggests EDs may be an important place to identify and intervene for youth currently experiencing or at risk of experiencing SUD and mental health conditions. ◼ Most adolescents with behavioral health conditions did not get health services in school during the year, suggesting schools may need to do more than scale up or introduce new services if they get new funds to provide behavioral health services. A sudden influx of funding will not resolve what appears to be an inadequate and underdeveloped service system. ◼ Pursuing strategies that would equitably strengthen individuals, families, and communities and expand outreach about and access to high-quality prevention and treatment of behavioral health conditions could have long-term implications for youth experiencing behavioral health disorders and promote overall youth well-being-an imperative that has become even more critical because of the pandemic Introduction Public attention has been drawn to headlines about increases in SUD, opioid overdose, suicide, and other mental health conditions among US young people that coincided with the implementation of widespread mitigation measures during the COVID-19 pandemic.1 And these headlines have been corroborated in further academic study (Auger et al. 2022; CDC 2020; Salanti et al. 2022; Viner et al. 2022). In this brief on adolescents and young adults (hereafter "youth"), we note that even in the decade before the pandemic, youth were trending worse on many measures of behavioral health conditions (NIHCM Foundation 2021; SAMHSA 2020). Opioid-related mortality increased threefold among youth between 1999 and 2016 (Gaither, Shabanova, and Leventhal 2018), and rates of mental health conditions, including anxiety, depression, and suicidality, increased substantially over the same period. From 2009 to 2019, the proportion of high school students reporting persistent feelings of sadness or hopelessness increased by 40 percent, the share seriously considering attempting suicide increased by 36 percent, and the share creating a suicide plan increased by 44 percent (CDC 2020). Between 2011 and 2015, youth psychiatric visits to EDs for depression, anxiety, and behavioral challenges increased by 28 percent, with the largest increases among adolescents (54 percent) and African American (53 percent) and Hispanic patients (91 percent; Kalb et al. 2019). Between 2006–07 and 2017–18, suicide rates among youth ages 10 to 24 increased by 57 percent (Curtin 2020). In response to these troublesome trends among young people, in 2021 the US surgeon general called an advisory on protecting youth mental health, and the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, and the Children's Hospital Association declared a state of emergency in pediatric mental health.2 In 2018 and in repeated renewals, successive US secretaries of health and human services have asked all levels of government to treat the opioid crisis as a public health emergency, and pediatricians have been urged to integrate SUD prevention and treatment into primary care (Levy 2019).3 These organizations, other national, state, and local organizations, and the federal government are calling for an "ambitious rebound" for young people from the pandemic and major investments in transforming approaches to supporting young people and their 2 BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID-ENROLLED YOUTH families and communities to prevent, identify, and treat behavioral health conditions (National Academies of Sciences, Engineering, and Medicine et al. 2022; Office of the Surgeon General 2021).4 Because the prevalence and type of SUD and mental health conditions vary over time, place, and populations (Mokdad et al. 2016; Substance Abuse and Mental Health Services Administration. 2020, Miech et al. 2023), providing communities with information about prevalence and characteristics of youth with behavioral health issues that is as specific to their communities as possible is a critical component of shaping the most appropriate responses. Given the impact of pandemic mitigation such as school closures and social distancing on young people and people with low incomes, it also important to disseminate information about the prevalence and characteristics of Medicaid-enrolled youth with behavioral health conditions from before, during, and after the pandemic. This information can help stakeholders better assess how these issues are evolving in their states and communities and design responsive policy. However, little detail exists on Medicaid-enrolled youth SUDs or mental health conditions at the state level, county, or city level. In this brief, we synthesize results from five briefs about the prevalence and characteristics of Medicaid-enrolled youth with a behavioral health condition in California, Colorado, New Mexico, Massachusetts, and Washington, DC, to highlight similarities and differences across the states and discuss their significance to policies related to prevention and treatment of behavioral health conditions (Lynch and Clemans-Cope, 2023a; Lynch and Clemans-Cope, 2023b; Lynch and Clemans-Cope, 2023c; Lynch and Clemans-Cope, 2023d; Lynch and Clemans-Cope, 2023e). Medicaid is the largest single funder of health services for youth-about two-fifths of adolescents and one-quarter of young adults in the United States are enrolled in Medicaid-and many states are innovating their Medicaid programs to improve behavioral health–related services, including services tailored to youth (National Academies of Sciences, Engineering, and Medicine et al. 2022). Early intervention for SUD and mental health conditions is critical for all youth (Correll et al. 2018; McGorry and Mei 2018) but especially critical for Medicaid enrollees because enrollees have increased risks of negative consequences of these conditions because of structural disadvantages, including low family wealth and historically racist policies related to substance use (Acevedo et al. 2018; Bailey et al. 2017; Fite et al. 2009; Perritt 2020; Sahker et al. 2020). We focus on youth with a behavioral health diagnosis because we rely on Medicaid claims data and can only see those youth with a behavioral health condition who have a record indicating they have a behavioral health diagnosis. For additional detail on our methods, see our methodology appendix (Lynch and Edwards 2023). Results We find that behavioral health diagnoses in 2018 ranged from lows of about one in six youth Medicaid enrollees (16.2 percent of adolescents and 15.2 percent of young adults in California, 16.1 percent of adolescents in Colorado, and 17.2 percent of young adults in DC) to highs of about one in four youth BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID -ENROLLED YOUTH 3 enrollees (24.2 percent of young adults and 23.6 percent of adolescents in New Mexico and 24.6 percent of young adults and 27.0 percent of adolescents in Massachusetts) (figure 1). FIGURE 1 Share of Adolescent and Young Adult Medicaid Enrollees with Either a SUD or Mental Health Diagnosis Alone or Co-occurring SUD and Mental Health Diagnoses by State, 2018 Co-occurring SUD & mental health diagnoses 30 Only mental health diagnoses (no SUD) Only SUD diagnoses (no mental health) 0.3 25 0.8 2.2 3.9 0.5 20 0.5 3.1 0.7 2.9 15 1.8 25.6 18.4 20.9 15.6 10 19.2 13.6 15 14.5 12.4 11.6 5 4 4.7 2.8 1.9 1.9 0.7 1.7 0.9 1.1 0.8 0 Adolescent YA Adolescent YA Adolescent YA Adolescent YA Adolescent YA California Colorado Massachusetts New Mexico Washington, DC URBAN INSTITUTE Source: California, Colorado, Massachusetts, New Mexico, and Washington, DC, Transformed Medicaid Statistical Information System data from 2018. Note: SUD = substance use disorder. In each of the study states, adolescent and young adult enrollees had similar levels of any behavioral health diagnoses. However, young adults were more likely than adolescents to have a SUD diagnosis and less likely to only have a mental health diagnosis (i.e. without SUD). In each state, mental health diagnoses without SUD were substantially more prevalent than SUD diagnoses without mental health diagnoses among both adolescents and young adults. Anxiety disorders, depressive disorders, and marijuana use disorders were generally the most common diagnoses among youth with behavioral health diagnoses. Suicidality was a substantial issue, especially among youth with co-occurring SUD and mental health conditions, among whom suicidality 4 BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID-ENROLLED YOUTH rates ranged from about one in five (young adults in Washington, DC, and Colorado) to about one in three (adolescents in New Mexico). In each of the study states we found demographic variation across youth stratified by status with a SUD and/or mental health diagnosis. Some patterns were observed in all the states and others were not (data not shown, see state briefs). In all states, youth with behavioral health diagnoses were more likely to experience disability than other youth. Similarly, youth with behavioral health diagnoses in all states had higher rates of visits to the health care settings we examined, especially the emergency department, where roughly half of youth with a behavioral health diagnosis received services compared with roughly 20 percent of other youth. Patterns by rural-urban and racial and ethnic category varied by state. For example, adolescent enrollees with a SUD were more likely to identify as Hispanic in California but less likely to identify as Hispanic in New Mexico compared with adolescents with no behavioral health diagnosis. Similarly, adolescents with a SUD were more likely to be from rural and small town areas in New Mexico but more likely to be from metropolitan areas in Colorado compared with adolescents with no behavioral health diagnosis. Within the four states with counties, we also found that youth with behavioral health diagnoses were disproportionately from select counties. We also found state variation in the types of SUD diagnoses among enrollees with a SUD. Opioid use disorder (OUD) was a larger share in Massachusetts especially compared with California and Washington, DC. Similarly, among enrollees with a SUD, other psychostimulant use disorder (e.g., with methamphetamine) was a larger share in California, New Mexico, and Colorado compared with Washington, DC, and Massachusetts. Cocaine use disorder was a larger share among young adults with a SUD in Massachusetts compared with young adults in other states. Limitations We are limited to studying the enrollees whose SUD and mental health conditions are identified and recorded in claims data. Given evidence of higher prevalence of SUD from surveys (i.e., that include people who do not get health services or do not report symptoms when they see a provider), we expect our analysis misses a substantial share of enrollees who have an undiagnosed SUD and/or mental health condition (Barocas et al. 2018; Garnick et al. 2019). In addition, some diagnosed SUDs or mental health conditions may be misdiagnoses, including because clinicians often cannot provide services without specific diagnoses (National Academies of Sciences, Engineering, and Medicine et al. 2022; Blader and Carlson 2007). In this study, we also do not evaluate treatment, including the quality of treatment or levels of unmet need. For additional detail on the limitations of our data and analysis, see our methodology appendix (Lynch and Edwards 2023). Discussion This synthesis study adds new detail about how the prevalence and characteristics of Medicaid-enrolled youth with behavioral health diagnoses vary across states. It also provides nuance and empirical support for what is already known about youth with behavioral health diagnoses more generally. Our BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID -ENROLLED YOUTH 5 finding that behavioral health diagnoses in 2018 ranged from lows of about one in six youth Medicaid enrollees to highs of about one in four corroborates findings of substantial issues with SUD and mental health conditions even before the pandemic and underscores the urgent need to increase behavioral health prevention and treatment services and attend to systemic drivers of youth well-being. Our finding that the extent and types of behavioral health diagnoses varied across and within states, including across counties and demographic groups, adds empirical support for the argument to have community stakeholders, including youth and families, help shape approaches to prevention and treatment and ensure that approaches are culturally effective in their communities and align with how these stakeholders define wellness. Findings of variation, such as that racial and ethnic and other demographic patterns in behavioral health diagnoses differed across state Medicaid programs, also shows that it is important for states and local communities to have access to detailed statistics about youth in their local areas. This finding also suggests that researchers should identify the state Medicaid programs used in any study, avoid or carefully make inference from a study dominated by cases from one state Medicaid program (e.g., California) to other states, and disaggregate by state when possible. That large numbers of youth had mood and other mental and substance use disorders suggests many youth were not well situated for the isolation and instability associated with COVID-19 mitigation. And that these youth were enrolled in Medicaid suggests they did not have affluent families who could pay for more socially connected and stable environments such as in-person private schools.5 Lengthy school closures may have been especially destabilizing for the adolescent Medicaid enrollees with mental health diagnoses who saw health service providers at school and the youth whose conditions were acute enough to be diagnosed with suicidality during the year before the pandemic started (National Academies of Sciences, Engineering, and Medicine et al. 2020). We also find that the share of youth with telehealth visits in 2018 was very low, indicating youth and their health services providers may not have been able to readily switch to telehealth when schools and other health care settings closed. In all study states, large shares of youth with SUD or mental health diagnoses had at least one ED visit, suggesting their health needs were not being met even before the pandemic. These and other youth may have relied on the ED more when school and other community settings were not available for behavioral health services. The relatively high contact with ED providers among youth with a diagnosed SUD or mental health condition indicates EDs could be an important place to identify and intervene for youth currently experiencing or at risk of experiencing SUDs and mental health conditions (Chun et al. 2016). Many EDs have innovative initiatives underway focusing on adult patients with opioid use disorder, which can be looked to for ED models for providing recommended behavioral health services (Antezzo and Manz 2022; D'Onofrio et al. 2015; Herring et al. 2021). However, EDs often lack the resources, including staffing, to identify and manage youth with behavioral health issues, and fewer than 1 in 5 youth presenting to an ED with a mental health issue see a mental health provider (Hoge et al. 2022; Kalb et al. 2019). Our study also found that large majorities of youth receive care in other outpatient settings, indicating that youth with behavioral health diagnoses can also be reached in other health care settings. 6 BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID-ENROLLED YOUTH Most adolescents with behavioral health conditions did not get services in schools, meaning schools may need to substantially scale up or introduce new services if they get new funds to provide behavioral health services. Legislation and executive action over the past 18 months have directed substantial new federal funds for expanding access to behavioral health services in schools (sometimes including SUD services), particularly for youth enrolled in Medicaid. Updated federal guidance for providing these services has also been issued.6 More behavioral health screening at schools also has the potential to reduce unnecessary ED visits for behavioral health, as a study from one urban ED found that most students referred to the ED by their school were not first evaluated by a school nurse or other staff person and those who were not first evaluated were more likely to be discharged without any outpatient follow-up (Grudnikoff, Taneli, and Correll. 2015). However, an "ambitious rebound" for youth from the pandemic must also address more systemic drivers of youth behavioral health conditions, including social influencers of health that can begin in utero. Though some have pointed out that more needs to be understood about how social influencers of health affect youth behavioral health, experts generally agree that social connectedness and well families and communities are important factors (National Academies of Sciences, Engineering, and Medicine et al. 2022). Policies and programs that invest in families and communities have been found to have longer-term effects and to be more cost effective than services provided only to children because they affect a broader population of children and the adults in their lives (Hoagwood et al. 2018). In a recent convening of the National Academies of Sciences, Engineering, and Medicine on the current youth mental health crisis and preventing the next one, experts discussed the importance of programs and policies that promote social connectedness, address parent needs, support family relationships, and allow a more holistic approach to preventing and treating behavioral health conditions (e.g., by acknowledging that investments in young people generate longer-term or cross-sector savings and thus do not lend themselves to traditional payment models; National Academies of Sciences, Engineering, and Medicine et al. 2022). Experts also discussed Medicaid innovations including adding dyadic (child and parent) care services as a Medicaid benefit, expanding reimbursement to peer specialists and community health workers, dropping same-day billing exclusions, remedying behavioral health workforce shortages, and moving to pediatric health care payment models that incentivize providers to address family, social, and economic needs; integrating behavioral health into primary care and integrating services across health, education, housing, and other sectors (Beck, Manderscheid, and Buerhaus 2018; Guyer, Boozang, and Tranchina 2020). Future work should extend this analysis to other states, counties, and cities and update these findings for periods during and after the pandemic. In addition, future work should improve information about youth behavioral needs in the context of community wide conditions and ecosystems, including the behavioral health service system (Hickie et al. 2019, Occhipinti et al. 2021). These are critically important given crisis-level behavioral health workforce shortages and a service system that has long been undervalued and underattended. BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID -ENROLLED YOUTH 7 Conclusion Given that behavioral health conditions among youth can have long-term implications for individual, family, and community well-being, these findings highlight the immediate, long-term, and urgent need to attend to youth well-being. It is important to monitor behavioral health needs in local areas and subpopulations including evaluating gaps in meeting those needs. Federal, state, and local stakeholders can craft a holistic system to help provide youth with the behavioral health prevention and treatment they need, including with input from youth themselves. As part of these efforts, they can aggressively pursue strategies to equitably strengthen families and communities as well as expand outreach about and access to high-quality prevention and treatment of behavioral health conditions. Notes 1 Dana Alkhouri, "Pandemic's Mental Health Burden Heaviest among Young Adults," ABC News, February 21, 2021, https://abcnews.go.com/Health/pandemics-mental-health-burden-heaviest-young- adults/story?id=75811308; Kristen Rogers, "Adolescent Suicides Increased during the Pandemic, Research Shows," CNN, April 25, 2022, https://www.cnn.com/2022/04/25/health/teen-suicide-increase-pandemic-study- wellness/index.html; and Aneri Pattani, "Women Now Drink as Much as Men-Not So Much for Pleasure, but to Cope," NPR, June 9, 2021, https://www.npr.org/sections/health-shots/2021/06/09/1003980966/women-now- drink-as-much-as-men-and-suffer-health-effects-more-quickly. 2 "AAP-AACAP-CHA Declaration of a National Emergency in Child and Adolescent Mental Health," American Academy of Pediatrics, 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/. 3 "Renewal of Determination That a Public Health Emergency Exists," US Department of Health and Human Services, Administration for Strategic Preparedness and Response, September 29, 2022, https://aspr.hhs.gov/legal/PHE/Pages/Opioids-29Sept22.aspx; and US Department of Health and Human Services, "HHS Acting Secretary Declares Public Health Emergency to Address National Opioid Crisis," news release, October 26, 2017, https://public3.pagefreezer.com/browse/HHS.gov/31-12- 2020T08:51/https:/www.hhs.gov/about/news/2017/10/26/hhs-acting-secretary-declares-public-health- emergency-address-national-opioid-crisis.html. 4 White House, "FACT SHEET: President Biden to Announce Strategy to Address Our National Mental Health Crisis, as Part of Unity Agenda in His First State of the Union," news release, March 1, 2022, https://www.whitehouse.gov/briefing-room/statements-releases/2022/03/01/fact-sheet-president-biden-to- announce-strategy-to-address-our-national-mental-health-crisis-as-part-of-unity-agenda-in-his-first-state-of- the-union/. 5 Louis Freedberg and Alexander Montero, "Students Getting In-Person Instruction at Accelerating Pace in California," EdSource, October 30, 2020, https://edsource.org/2020/students-getting-in-person-instruction-at- accelerating-pace-in-california/642408; and Mackenzie Mays, "Newsom Sends His Children Back to Private School Classrooms in California," Politico, October 30, 2020, https://www.politico.com/states/california/story/2020/10/30/newsom-sends-his-children-back-to-school- classrooms-in-california-1332811. 6 Madeline Guth and Elizabeth Williams, "The Safer Communities Act: Changes to Medicaid EPSDT and School Based Services," Kaiser Family Foundation, September 6, 2022, https://www.kff.org/policy-watch/the-safer- communities-act-changes-to-medicaid-epsdt-and-school-based-services/; US Department of Education, "Fact Sheet: Biden-Harris Administration Announces Two New Actions to Address Youth Mental Health Crisis," news release, July 29, 2022, https://www.ed.gov/news/press-releases/fact-sheet-biden-harris-administration- announces-two-new-actions-address-youth-mental-health-crisis; Daniel Tsai, "Information on School-Based 8 BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID-ENROLLED YOUTH Services in Medicaid: Funding, Documentation and Expanding Services," August 18, 2022, https://www.medicaid.gov/federal-policy-guidance/downloads/sbscib081820222.pdf.; and Xavier Becerra and Miguel A. 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Sahker, Ethan, George Pro, Masatsugu Sakata, and Toshiaki Furukawa. 2020. "Substance Use Improvement Depends on Race/Ethnicity: Outpatient Treatment Disparities Observed in a Large US National Sample." Drug and Alcohol Dependence 213:108087. https://doi.org/10.1016/j.drugalcdep.2020.108087. Salanti, Georgia, Natalie Peter, Thomy Tonia, Alexander Holloway, Ian R. White, Leila Darwish, Nicola Low, et al. 2022. "The Impact of the COVID-19 Pandemic and Associated Control Measures on the Mental Health of the General Population." Annals of Internal Medicine. https://doi.org/10.7326/M22-1507. SAMHSA (Substance Abuse and Mental Health Services Administration). 2020. Comparison of 2017-2018 and 2018-2019 Population Percentages (50 States and the District of Columbia). Rockville, MD: SAMHSA. Viner, Russell, Simon Russell, Rosella Saulle, Helen Croker, Claire Stansfield, Jessica Packer, Dasha Nicholls, et al. 2022. "School Closures during Social Lockdown and Mental Health, Health Behaviors, and Well-Being among Children and Adolescents during the First COVID-19 Wave: A Systematic Review." JAMA Pediatrics 176 (4): 400. https://doi.org/10.1001/jamapediatrics.2021.5840. About the Authors Victoria Lynch is a senior research associate in the Health Policy Center at the Urban Institute. Lynch's areas of expertise include health surveys, enrollment, claims and encounter data, Medicaid and the Children's Health Insurance Program, health care use and expenditure, substance use disorder and mental health. Lynch has numerous publications from research examining survey methods, participation in Medicaid/CHIP, prevalence and characteristics of people with behavioral health conditions, gaps in recommended health services, and other health services topics. Lynch has a BS in politics from BEHAVIORAL HEALTH DIAGNOSES AMONG MEDICAID -ENROLLED YOUTH 11 Princeton University and a MS in survey methodology from the University of Maryland/University of Michigan/Westat. Lisa Clemans-Cope is a senior research fellow in the Health Policy Center. Her areas of expertise include substance use disorder and opioid use disorder and treatment; health use and spending; access to and use of health care, private insurance, and Medicaid and the Children's Health Insurance Program; people dually eligible for Medicare and Medicaid; health reform legislation and regulation; and health- related survey and administrative data. Clemans-Cope has published her research in the New England Journal of Medicine, Health Affairs, Pediatrics, and Inquiry. Clemans-Cope has a BA in economics from Princeton University and a PhD in health economics from the Johns Hopkins Bloomberg School of Public Health. Acknowledgments This brief was funded by the Foundation for Opioid Response Efforts. We are grateful to them and to all our funders, who make it possible for Urban to advance its mission. The authors are grateful to Laudy Aaron's expertise in reviewing this brief. 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. ABOUT THE URBAN INSTITUTE 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. 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