Abstract
Eleven states offer 1915(c) Home and Community Based Services (HCBS) Medicaid waivers to organize and fund programs that provide in-home and community support services to address the unique needs of children and youth with complex mental health concerns and their families. However, as the COVID-19 pandemic-imposed restrictions on community movement and school engagement were enacted, these children and youth lost in-person access to needed supports through school-based programs and professional community providers. The well documented mental health impacts of the pandemic on children and youth necessitates understanding how behavioral health programs and policies were adapted to the constraints of pandemic life for this uniquely at-risk population. This study examines and characterizes trends in modifications made to these programs. Appendix K applications amending HCBS waiver programs targeting children with serious emotional disturbances (SED) were collected from the Center for Medicaid & Medicare Services (CMS) website. In total, 33 applications from 10 states were included in the study. Utilizing a policy mapping approach, applications were coded by hand comparing text from elements in the applications across all 10 states. A summary of program changes reported in applications was created and changes were tracked over the course of the federal public health emergency. States modified programs by adding services for waiver participants, changing the service settings allowed, removing service limit restrictions, and offering electronic/remote service delivery. All states also issued measures to either expand or retain their provider workforce, adding family members as providers, modifying experience requirements, and offering financial incentives via increased payment rates or retainer payments. Modifications to mental health assessment processes ranged from changing the evaluation tools or documentation requirements, extending deadlines, and allowing for remote evaluations. Service plan development processes were adapted by allowing virtual service plan development meetings, allowing participants or representatives to electronically sign plans of care, and permitting verbal consent to begin receiving services. Documenting programmatic adjustments provides a context for further research to understand the experiences of youth, families, and providers in navigating these changes and the relative success or failures of these policies.
Similar content being viewed by others
References
1915(c) HCBS waiver Appendix K modifications (Medicaid’s Response to COVID-19). (2020). Medicaid and CHIP payment and access commission. https://www.macpac.gov/subtopic/1915c-hcbs-waiver-appendix-k-modifications/
1915(c) Waiver Appendix K COVID-19 Prepopulated Template Instructions. (2020). Centers for Medicare & Medicaid. https://www.medicaid.gov/sites/default/files/2020-03/1915c-appendix-k-instructions.pdf
Agarwal, S. M., Rodríguez Delgado, M., & Tapia-Fuselier, J. L., Jr. (2022). Meeting the needs of children through telemental health: Application for rural mental health using child–parent relationship therapy. International Journal of Play Therapy. https://doi.org/10.1037/pla0000178
Bethell, C. D., Garner, A. S., Gombojav, N., Blackwell, C., Heller, L., & Mendelson, T. (2022). Social and relational health risks and common mental health problems among US children. Child and Adolescent Psychiatric Clinics of North America, 31(1), 45–70. https://doi.org/10.1016/j.chc.2021.08.001
Blackstock, J., Chae, K. B., Mauk, G. W., & McDonald, A. (2018). Getting rural children through the door: Perceived barriers to mental health care for school-aged children in rural areas. The Rural Educator, 39(1), 12.
Blumberg, S., Lu, P., Kwan, A. T., Hoover, C. M., Lloyd-Smith, J. O., Sears, D., Bertozzi, S. M., & Worden, L. (2022). Modeling scenarios for mitigating outbreaks in congregate settings. PLoS Computational Biology, 18(7), e1010308. https://doi.org/10.1371/journal.pcbi.1010308
Brown, K., LaBrenz, C. A., & Fong, R. (2018). From adoption to residential treatment centers. Adoption Quarterly, 21(3), 182–200. https://doi.org/10.1080/10926755.2018.1488331
Burris, S. (2014). A technical guide for policy surveillance. Social Science Research Network. https://doi.org/10.2139/ssrn.2469895
Burris, S., Hitchcock, L., Ibrahim, J., Penn, M., & Ramanathan, T. (2016). Policy surveillance: A vital public health practice comes of age. Journal of Health Politics, Policy and Law, 41(6), 1151–1173. https://doi.org/10.1215/03616878-3665931
Butler, A., Elkins, S., Kowalkowski, M., & Raphael, J. (2015). Shared decision making among parents of children with mental health conditions compared to children with chronic physical conditions. Maternal & Child Health Journal, 19(2), 410–418. https://doi.org/10.1007/s10995-014-1523-y
Caldwell, J., Heyman, M., Atkins, M., & Ho, S. (2022). Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19. Disability and Health Journal, 15(3), 101313. https://doi.org/10.1016/j.dhjo.2022.101313
Carlo, F. D., Sociali, A., Picutti, E., Pettorruso, M., Vellante, F., Verrastro, V., Martinotti, G., & di Giannantonio, M. (2021). Telepsychiatry and other cutting-edge technologies in COVID-19 pandemic: Bridging the distance in mental health assistance. International Journal of Clinical Practice. https://doi.org/10.1111/ijcp.13716
Chan, R. C. H., & Fung, S. C. (2021). Elevated levels of COVID-19-related stress and mental health problems among parents of children with developmental disorders during the pandemic. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05004-w
Cheak-Zamora, N. C., & Thullen, M. (2017). Disparities in quality and access to care for children with developmental disabilities and multiple health conditions. Maternal and Child Health Journal, 21(1), 36–44. https://doi.org/10.1007/s10995-016-2091-0
Cohen, S. S., Toly, V. B., Lerret, S., & Sawin, K. J. (2022). The Impact of COVID-19 on systems of care for children and youth with special health care needs. Journal of Pediatric Health Care. https://doi.org/10.1016/j.pedhc.2022.09.009
Corrigan, P. W., Markowitz, F. E., & Watson, A. C. (2004). Structural levels of mental illness stigma and discrimination. Schizophrenia Bulletin, 30(3), 481–491. https://doi.org/10.1093/oxfordjournals.schbul.a007096
Czeisler, M. É. (2021). Mental health among parents of children aged less than 18 years and unpaid caregivers of adults during the COVID-19 pandemic—United States, December 2020 and February–March 2021. https://www.cdc.gov/mmwr/volumes/70/wr/mm7024a3.htm
Danseco, E., Kurzawa, J., Sundar, P., Brown, J., & Huang, C. (2021). Evaluating the sector-wide implementation of virtual child and youth health mental services in response to the COVID-19 pandemic: Perspectives from service providers, agency leaders and clients. Implementation Research and Practice, 2, 26334895211045690. https://doi.org/10.1177/26334895211045690
Dey, M., Wang, J., Jorm, A., & Mohler-Kuo, M. (2015). Children with mental versus physical health problems: Differences in perceived disease severity, health care service utilization and parental health literacy. Social Psychiatry & Psychiatric Epidemiology, 50(3), 407–418. https://doi.org/10.1007/s00127-014-0944-7
Edwards, E. (2020). COVID-19 changes to HCBS using Appendix K: Approval trends.
Embregts, P. J. C. M., Tournier, T., & Frielink, N. (2021). Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis. Journal of Applied Research in Intellectual Disabilities, 34(2), 480–490. https://doi.org/10.1111/jar.12812
Fornaro, M., De Prisco, M., Billeci, M., Ermini, E., Young, A. H., Lafer, B., Soares, J. C., Vieta, E., Quevedo, J., de Bartolomeis, A., Sim, K., Yatham, L. N., Bauer, M., Stein, D. J., Solmi, M., Berk, M., & Carvalho, A. F. (2021). Implications of the COVID-19 pandemic for people with bipolar disorders: A scoping review. Journal of Affective Disorders, 295, 740–751. https://doi.org/10.1016/j.jad.2021.08.091
Friedman, C. (2022a). A report on the increased payment rates for HCBS for people with intellectual and developmental disabilities during the COVID-19 pandemic. Journal of Developmental and Physical Disabilities. https://doi.org/10.1007/s10882-022-09886-1
Friedman, C. (2022b). Telehealth service delivery in medicaid home- and community-based services for people with intellectual and developmental disabilities. International Journal of Telerehabilitation, 14(1), e6478. https://doi.org/10.5195/ijt.2022.6478
Geweniger, A., Haddad, A., Barth, M., Högl, H., Mund, A., Insan, S., & Langer, T. (2022). Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: A cross-sectional study. BMJ Paediatrics Open, 6(1), e001509. https://doi.org/10.1136/bmjpo-2022-001509
Gilsbach, S., Herpertz-Dahlmann, B., & Konrad, K. (2021). Psychological impact of the COVID-19 pandemic on children and adolescents with and without mental disorders. Frontiers in Public Health, 9, 679041. https://doi.org/10.3389/fpubh.2021.679041
Graaf, G., & Snowden, L. (2017). The role of Medicaid home and community-based service policies in organizing and financing care for children with severe emotional disturbance. Children and Youth Services Review, 81, 272–283. https://doi.org/10.1016/j.childyouth.2017.08.007
Graaf, G., & Snowden, L. (2020a). Medicaid waiver adoption for youth with complex behavioral health care needs: An analysis of state decision-making. Journal of Disability Policy Studies, 31(2), 87–98. https://doi.org/10.1177/1044207319897058
Graaf, G., & Snowden, L. (2020b). State strategies for enhancing access and quality in systems of care for youth with complex behavioral health needs. Administration and Policy in Mental Health and Mental Health Services Research. https://doi.org/10.1007/s10488-020-01061-y
Graaf, G., Whitfield, E., & Snowden, L. (2023). 1915(c) Medicaid waivers for children with severe emotional disturbance: Participant characteristics, enrollment, and out-of-home service use. Journal of Disability Policy Studies.
Graves, J. M., Abshire, D. A., Mackelprang, J. L., Amiri, S., & Beck, A. (2020). Association of rurality with availability of youth mental health facilities with suicide prevention services in the US. JAMA Network Open, 3(10), e2021471. https://doi.org/10.1001/jamanetworkopen.2020.21471
Hale, T., Angrist, N., Goldszmidt, R., Kira, B., Petherick, A., Phillips, T., Webster, S., Cameron-Blake, E., Hallas, L., Majumdar, S., & Tatlow, H. (2021). A global panel database of pandemic policies (Oxford COVID-19 Government Response Tracker). Nature Human Behaviour, 5(4), 4. https://doi.org/10.1038/s41562-021-01079-8
Hamlin, M., Ymerson, T., Carlsen, H. K., Dellepiane, M., Falk, Ö., Ioannou, M., & Steingrimsson, S. (2022). Changes in psychiatric inpatient service utilization during the first and second waves of the COVID-19 pandemic. Frontiers in Psychiatry. https://doi.org/10.3389/fpsyt.2022.829374
Harrington, C., Ng, T., LaPlante, M., & Kaye, H. S. (2012). Medicaid home- and community-based services: Impact of the Affordable Care Act. Journal of Aging & Social Policy, 24(2), 169–187. https://doi.org/10.1080/08959420.2012.659118
Heinrich, C. J., Camacho, S., Henderson, S. C., Hernández, M., & Joshi, E. (2022). Consequences of administrative burden for social safety nets that support the healthy development of children. Journal of Policy Analysis and Management, 41(1), 11–44. https://doi.org/10.1002/pam.22324
Herbell, K., & Banks, A. J. (2020). “Fighting tooth and nail”: Barriers to accessing adolescent mental health treatment from mothers perspectives. Administration and Policy in Mental Health and Mental Health Services Research. https://doi.org/10.1007/s10488-020-01026-1
Hernandez, M., Armstrong, M., Green, A. L., & Johnson, M. H. (2016). National survey of state children’s mental health directors: Current status and future directions. The Journal of Behavioral Health Services & Research. https://doi.org/10.1007/s11414-016-9514-y
Hughes, M. M., Groenewold, M. R., Lessem, S. E., Xu, K., Ussery, E. N., Wiegand, R. E., Qin, X., Do, T., Thomas, D., Tsai, S., Davidson, A., Latash, J., Eckel, S., Collins, J., Ojo, M., McHugh, L., Li, W., Chen, J., Chan, J., … Stuckey, M. J. (2020). Update: Characteristics of health care personnel with COVID-19—United States, February 12–July 16, 2020 (pp. 1364–1368).
Ibeziako, P., Kaufman, K., Scheer, K. N., & Sideridis, G. (2022). Pediatric mental health presentations and boarding: First year of the COVID-19 Pandemic. Hospital Pediatrics, 12(9), 751–760. https://doi.org/10.1542/hpeds.2022-006555
Janke, A. T., Nash, K. A., Goyal, P., Auerbach, M., & Venkatesh, A. K. (2022). Pediatric mental health visits with prolonged length of stay in community emergency departments during COVID-19. Journal of the American College of Emergency Physicians Open, 3(6), e12869. https://doi.org/10.1002/emp2.12869
Johnson, J. (2017). Services and supports for families of children with special health care needs: Rural vs urban settings. Master of social work clinical research papers. https://sophia.stkate.edu/msw_papers/753
Kaye, H. S., & Caldwell, J. (2023). Excess deaths of Medicaid home and community-based services recipients during COVID-19. Health Affairs, 42(1), 115–120. https://doi.org/10.1377/hlthaff.2022.00457
Keim-Malpass, J., Constantoulakis, L., Shaw, E. K., & Letzkus, L. C. (2022). Lagging coverage for mental health services among children and adolescents through home and community-based Medicaid waivers. Journal of Child and Adolescent Psychiatric Nursing. https://doi.org/10.1111/jcap.12392
Kitchener, M., Ng, T., & Harrington, C. (2004). Medicaid 1915(c) home and community-based services waivers: A national survey of eligibility criteria, caps, and waiting lists. Home Health Care Services Quarterly, 23(2), 55–69. https://doi.org/10.1300/J027v23n02_04
Krass, P., Dalton, E., Doupnik, S. K., & Esposito, J. (2021). US pediatric emergency department visits for mental health conditions during the COVID-19 pandemic. JAMA Network Open, 4(4), e218533. https://doi.org/10.1001/jamanetworkopen.2021.8533
Lawson, N., King, J., & Rontal, R. (2022). Disability and telehealth since the COVID-19 pandemic. Center for Health and Research Transformation.
Liu, S., Lombardi, J., & Fisher, P. A. (2021). The COVID-19 Pandemic impact on households of young children with special healthcare needs. Journal of Pediatric Psychology. https://doi.org/10.1093/jpepsy/jsab135
Mahoney, K. J. (2020). Self-direction of home and community-based services in the time of COVID-19. Journal of Gerontological Social Work, 63(6–7), 625–628. https://doi.org/10.1080/01634372.2020.1774833
Medicaid.gov. (2023, April 10). State waivers list. Medicaid.Gov. http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.html
Merryman, M. B., Miller, N. A., Shockley, E., Eskow, K. G., & Chasson, G. S. (2015). State adoption of Medicaid 1915(c) waivers for children and youth with Autism Spectrum Disorder. Disability and Health Journal, 8(3), 443–451. https://doi.org/10.1016/j.dhjo.2015.03.003
Musumeci, M., & Chidambaram, P. (2019). Medicaid’s role for children with special health care needs: A look at eligibility, services, and spending (p. 11) [Issue Brief]. Kaiser Family Foundation.
Musumeci, M., & Chidambaram, P. (2020, April 16). COVID-19 issues and Medicaid policy options for people who need long-term services and supports. KFF. https://www.kff.org/coronavirus-covid-19/issue-brief/covid-19-issues-and-medicaid-policy-options-for-people-who-need-long-term-services-and-supports/
Musumeci, M., & Dolan, R. (2020, August 26). State actions to sustain Medicaid long-term services and supports during COVID-19. KFF. https://www.kff.org/medicaid/issue-brief/state-actions-to-sustain-medicaid-long-term-services-and-supports-during-covid-19/
Musumeci, M., Watts, M. O., & Chidambaram, P. (2020). Key state policy choices about Medicaid home and community-based services [Issue Brief]. Kaiser Family Foundation. https://www.kff.org/medicaid/issue-brief/key-state-policy-choices-about-medicaid-home-and-community-based-services/
Nicholas, D. B., Zulla, R. T., Conlon, O., Dimitropoulos, G., Urschel, S., Rapoport, A., Katz, S. L., Bruce, A., West, L. J., Belletrutti, M., Cullen, E., & Zwaigenbaum, L. (2022). Mental health impacts of the COVID-19 pandemic on children with underlying health and disability issues, and their families and health care providers. Paediatrics & Child Health. https://doi.org/10.1093/pch/pxab103
Palinkas, L. A., De Leon, J., Salinas, E., Chu, S., Hunter, K., Marshall, T. M., Tadehara, E., Strnad, C. M., Purtle, J., Horwitz, S. M., McKay, M. M., & Hoagwood, K. E. (2021). Impact of the COVID-19 pandemic on child and adolescent mental health policy and practice implementation. International Journal of Environmental Research and Public Health, 18(18), 18. https://doi.org/10.3390/ijerph18189622
Parchomiuk, M. (2022). Experiences of people with intellectual disabilities during the COVID-19 pandemic. A thematic synthesis. International Journal of Developmental Disabilities. https://doi.org/10.1080/20473869.2022.2072698
Pecor, K. W., Barbayannis, G., Yang, M., Johnson, J., Materasso, S., Borda, M., Garcia, D., Garla, V., & Ming, X. (2021). Quality of life changes during the COVID-19 Pandemic for caregivers of children with ADHD and/or ASD. International Journal of Environmental Research and Public Health, 18(7), 7. https://doi.org/10.3390/ijerph18073667
Pullmann, M. D., VanHooser, S., Hoffman, C., & Heflinger, C. A. (2010). Barriers to and supports of family participation in a rural system of care for children with serious emotional problems. Community Mental Health Journal, 46(3), 211–220. https://doi.org/10.1007/s10597-009-9208-5
Purtle, J., Borchers, B., Clement, T., & Mauri, A. (2017). Inter-agency strategies used by state mental health agencies to assist with federal behavioral health parity implementation. The Journal of Behavioral Health Services & Research. https://doi.org/10.1007/s11414-017-9581-8
Purtle, J., Lê-Scherban, F., Wang, X., Shattuck, P. T., Proctor, E. K., & Brownson, R. C. (2019). State legislators’ support for behavioral health parity laws: The influence of mutable and fixed factors at multiple levels. The Milbank Quarterly, 97(4), 1200–1232. https://doi.org/10.1111/1468-0009.12431
Purtle, J., Nelson, K. L., Horwitz, S. M., Palinkas, L. A., McKay, M. M., & Hoagwood, K. E. (2022). Impacts of COVID-19 on mental health safety net services for youths: A national survey of agency officials. Psychiatric Services (Washington, D.c.), 73(4), 381–387. https://doi.org/10.1176/appi.ps.202100176
Rosen-Reynoso, M., Porche, M. V., Kwan, N., Bethell, C., Thomas, V., Robertson, J., Hawes, E., Foley, S., & Palfrey, J. (2016). Disparities in access to easy-to-use services for children with special health care needs. Maternal and Child Health Journal, 20(5), 1041–1053. https://doi.org/10.1007/s10995-015-1890-z
Russell, B. S., Hutchison, M., Park, C. L., Fendrich, M., & Finkelstein-Fox, L. (2021). Short-term impacts of COVID-19 on family caregivers: Emotion regulation, coping, and mental health. Journal of Clinical Psychology. https://doi.org/10.1002/jclp.23228
Sen, B., Sharma, P., Brisendine, A., Blackburn, J., Morrisey, M., Menachemi, N., Liu, Y., McDougal, J., Sanders, T., & Becker, D. (2022). Disparities in telehealth utilization in a population of publicly insured children during the COVID-19 pandemic. Population Health Management, 25(2), 178–185. https://doi.org/10.1089/pop.2021.0343
Shankar, L. G., Habich, M., Rosenman, M., Arzu, J., Lales, G., & Hoffmann, J. A. (2022). Mental health emergency department visits by children before and during the COVID-19 Pandemic. Academic Pediatrics. https://doi.org/10.1016/j.acap.2022.05.022
Sutter, E. N., Francis, L. S., Francis, S. M., Lench, D. H., Nemanich, S. T., Krach, L. E., Sukal-Moulton, T., & Gillick, B. T. (2021). Disrupted access to therapies and impact on well-being during the COVID-19 Pandemic for children with motor impairment and their caregivers. American Journal of Physical Medicine & Rehabilitation, 100(9), 821–830. https://doi.org/10.1097/PHM.0000000000001818
Tremper, C., Thomas, S., & Wagenaar, A. C. (2010). Measuring law for evaluation research. Evaluation Review, 34(3), 242–266. https://doi.org/10.1177/0193841X10370018
Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826. https://doi.org/10.1177/1362361313512902
Wendel, C. L., LaPierre, T. A., Sullivan, D. L., Babitzke, J., Swartzendruber, L., Barta, T., & Olds, D. M. (2022). “Anything that benefits the workers should benefit the client”: Opportunities and constraints in self-directed care during the covid-19 pandemic. Journal of Applied Gerontology. https://doi.org/10.1177/07334648221143604
Williams, J. C., Ball, M., Roscoe, N., Harowitz, J., Hobbs, R. J., Raman, H. N., Seltzer, M. K., Vo, L. C., Cagande, C. C., Alexander-Bloch, A. F., Glahn, D. C., & Morrow, L. (2022). Widening racial disparities during COVID-19 Telemedicine transition: A study of child mental health services at two large children’s hospitals. Journal of the American Academy of Child & Adolescent Psychiatry. https://doi.org/10.1016/j.jaac.2022.07.848
Williams, N. J., Scott, L., & Aarons, G. A. (2017). Prevalence of serious emotional disturbance among U.S. children: A meta-analysis. Psychiatric Services. https://doi.org/10.1176/appi.ps.201700145
Yılmaz, B., Azak, M., & Şahin, N. (2021). Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review. World Journal of Psychiatry, 11(7), 388–402. https://doi.org/10.5498/wjp.v11.i7.388
Zablotsky, B., Black, L. I., Terlizzi, E. P., Vahratian, A., & Blumberg, S. J. (2022). Anxiety and depression symptoms among children before and during the COVID-19 pandemic: COVID Mental Health 2019–2020. Annals of Epidemiology. https://doi.org/10.1016/j.annepidem.2022.09.003
Zima, B. T., Edgcomb, J. B., Rodean, J., Cochran, S. D., Harle, C. A., Pathak, J., Tseng, C., & Bussing, R. (2022). Use of acute mental health care in U.S. children’s hospitals before and after statewide COVID-19 school closure orders. Psychiatric Services. https://doi.org/10.1176/appi.ps.202100582
Funding
This publication was supported by the National Institutes of Mental Health of the National Institutes of Health under Grant Number K01MH129991. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors have no potential conflicts of interest to disclose.
Ethical Approval
This commentary did not involve research with human participants and thus did not require informed consent of participants or approval by a research ethics review board.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Appendix
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Cañizares, M., Unnerstall, A. & Graaf, G. COVID-19 Modifications in Public Home- and Community-Based Services for Children with Mental Health Needs. Adm Policy Ment Health 51, 85–102 (2024). https://doi.org/10.1007/s10488-023-01315-5
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10488-023-01315-5