Leveraging SED Waiver to Support Families

Whitney Grube (University of Kansas School of Social Welfare)

Youth Mental Health: Urgent Issue for Children, Families, Community

In 2021, the Surgeon General issued a rare public advisory calling for action to protect youth mental health.ⁱ Even prior to the devastating impact of the pandemic, depression, anxiety, and behavioral problems were prevalent among U.S. children and adolescents, and families struggled to access services that could help.ⁱⁱ Between 2011-2019, suicide was the second leading cause of death among Americans aged 10–29 years. Then, as young people reeled from school closures and traumatic losses in the COVID-19 emergency, youth suicide rates rose.ⁱⁱⁱ Childhood mental disorder is a matter of life or death. It is also extraordinarily expensive, exacting more than $2 trillion in lifetime economic damage—on top of treatment costs.^iv It affects millions of families in the U.S. and touches every community in Kansas.  

Approximately 20% of children and adolescents experience a mental disorder each year, and 40% meet criteria for a mental illness by age 18.^v While many struggling young people regain mental health, for some, mental disorder persists to the point where they are identified as experiencing a serious emotional disturbance (SED)—symptoms so severe they significantly impact functioning.^vi These youth and their families are ill-served in the private mental health system, as Medicaid is often the only mechanism that provides and covers needed services.^vii

SED Waiver—Pathway to Services

Due to the significant challenges associated with youth SED, states—including Kansas—utilize 1915(c) Medicaid Home- and Community-Based Services Waivers to deliver and fund specialty community-based mental health care, designed to prevent psychiatric hospitalization. Eligibility determination begins with functional assessment of the young person’s impaired functioning and examines the youth’s assets/income rather than parental finances. If deemed clinically and financially eligible, children and adolescents may access six specialty Medicaid Waiver services: wraparound facilitation, parent support and training, independent living skills, attendant care, professional resource family care, and short-term respite care.^viii These services are designed to address children’s mental health needs, alleviate caregiver strain, and improve youth functioning, so children can stay safely in their communities. 

What We Examined

Despite almost 30 years of implementation, significant questions remain about the SED Waiver. This study examined service utilization of Kansas families receiving the SED Waiver. First, Latent Class Analysis methods determined class membership for the sub-sample of children and adolescent waiver participants (1,179). Then, regression examined if demographic characteristics, contextual factors, and/ or individual youth characteristics were significant in predicting class placement. As Kansas continues to grapple with youth mental health needs, we urgently need to know more about the families using the Waiver, which services are particularly valuable for which families, and how policy and practice can best support youth mental health. This study advances knowledge about Kansas youth with SED and makes recommendations to improve their outcomes. 

What We Found

SED Waiver for Whom?

While youth eligible for the SED Waiver must be at risk of acute hospitalization, recipients were primarily using services designed to assist the caregiver, rather than the youth. Particularly as prior research has shown a relationship between caregiver strain and risk of youth hospitalization, this study adds to evidence that preventing youth psychiatric hospitalization requires accessible treatment for their caregivers.

The average age of first Waiver episode was 11.1 years, providing further evidence that SED is an issue of child, as well as adolescent, mental health. Additionally, regression analysis found significant differences in service usage (and class membership), based on age, race, school factors, and child functioning. Compared to white children, children of color were more likely to be in the High Needs Caregiver class. This suggests that families of color may rely especially heavily on the resources available through the Waiver

SED Waiver for What?

For every one year of age, the youth is more likely to be in the Care Coordination class, suggesting that older children have greater needs for cross-system (“wraparound”) collaboration. Additional findings indicate that the higher the symptoms of the youth, the higher the caregivers’ needs—a result that speaks to parents’ difficulties in supporting their children with more serious emotional disorders.

What It Means For Policy & Practice

While additional research is needed to better understand the strengths and needs of Waiver recipients, this study points to policy and practice reforms that could lead to better care for youth with SED and their families.

Identify infrastructure needed to ensure adequate and equitable Waiver access and use.

• National estimates suggest there are at least 40,725 Kansas youth (ages 3-17) with SED, but only ~3,000 Kansans were eligible to receive Waiver services in 2023.  To close this gap and better meet families’ needs, Kansas should consider changes in outreach, screening, and service provision.
• SED identification and screening practices should be examined to understand racial and gender differences, particularly regarding overrepresentation of boys, and of children of color.

Increase treatment access for those within and beyond the Waiver by addressing Kansas’ mental health provider shortage. 

• With both high prevalence of mental disorders and low rates of access to care, Kansas ranks 50th in youth mental health access.  Here, more extensive use of Waiver services in regions of the state with fewer other children’s mental health services underscores the crucial role the Waiver plays in meeting families’ needs. This also highlights the difficulties families not receiving the SED Waiver may face in securing needed treatment.

Evaluate effectiveness of Waiver services. 

• To ensure children with SED and their families receive the highest-quality interventions, Kansas should examine the outcomes of individual Waiver services, as well as the overall effectiveness of the Waiver policy.

1. There is strong evidence supporting wraparound services for youth with SED and clear fidelity models for their implementation, but design and delivery of other Waiver services may vary among regions, and even by provider. Evaluation should examine families’ experiences with Waiver services, assess the contribution of each to families’ outcomes, and quantify the cost/benefit of the Waiver as an alternative to hospitalization.
2. Making evaluation and utilization data readily available would facilitate ongoing research, build the evidence base about what works for supporting youth with SED, and inform implementation standards.

Reconsider Waiver services to meet demographic realities and clinical needs. 

• Service utilization should be considered a possible signal about the relative necessity of each service. For example, as the average Waiver recipient was approximately 11 years old, Independent Living Services are inappropriate for many. 
• Additionally, the significant demand for caregiver services suggests Kansas should develop evidence-based practices that support caregivers’ varied needs. 

Incorporate promising practices to retain families to successful completion. 

• While the average length of first Waiver episode was 7.6 months, only approximately 14% of first Waiver episodes were reported as being closed successfully. Mental health disorders have an uncertain trajectory, so collaborative relationships between parents and providers are essential, to maintain families in services until hospital diversion has been achieved.

References

i. Office of the Surgeon General (OSG). (2021). Protecting Youth Mental Health: The U.S. Surgeon General’s Advisory. US Department of Health and Human Services. 

ii. Ghandour, R. M., Sherman, L. J., Vladutiu, C. J., Ali, M. M., Lynch, S. E., Bitsko, R. H., & Blumberg, S. J. (2019). Prevalence and Treatment of Depression, Anxiety, and Conduct Problems in US Children. The Journal of pediatrics, 206, 256–267.e3. 

iii. Bridge, J. A., Ruch, D. A., Sheftall, A. H., Hahm, H. C., O’Keefe, V. M., Fontanella, C. A., Brock, G., Campo, J. V., & Horowitz, L. M. (2023). Youth suicide during the first year of the COVID-19 pandemic. Pediatrics, 151(3), Article e2022058375. https://doi.org/10.1542/peds.2022-058375 

iv. Smith, J. P., & Smith, G. C. (2010). Long-term economic costs of psychological problems during childhood. Social science & medicine, 71 (1), 110–115. https://doi.org/10.1016/j.socscimed.2010.02.046 

v. Bitsko RH, Claussen AH, Lichstein J, et al. (2022). Mental Health Surveillance Among Children — United States, 2013–2019. MMWR Suppl 2022;71(Suppl-2):1–42. DOI: http://dx.doi.org/10.15585/mmwr.su7102a1. 

vi. Substance Abuse and Mental Health Services Administration (SAMHSA). (1993). Final notice [Final definitions for: (1) Children with a serious emotional disturbance, and (2), adults with serious mental illness]. Federal Register, 58, 29422-29425. vii. Graaf, G. & Snowden, L. (2017). The role of Medicaid home and community-based services policies in organizing and financing care for children with severe emotional disturbance. Children and Youth Services Review, 81, 272-283. 

viii. Kansas Department for Aging and Disability Services [KDADS]. (n.d.) Serious Emotional Disturbance (SED) Waiver Program. Retrieved from https://www.kdads.ks.gov/commissions/home-community-based-services-(hcb…;

ix. Brannan, A. M., & Heflinger, C. A. (2005). Child behavioral health service use and caregiver strain: Comparison of managed care and fee-for-service Medicaid systems. Mental Health Services Research, 7(4), 197–211. 

x. Calculated using estimates of SED in children, which range from 5.8-20%, and comparing to total child population in Kansas. Citation for SED estimates: 2022 National Healthcare Quality and Disparities Report [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US). (2022). CHILD AND ADOLESCENT MENTAL HEALTH. Available from: https://www.ncbi.nlm.nih.gov/books/NBK587174/ 

xi. Kansas Department of Aging & Disability Services (KDADS). (2023, July). July 2023 HCBS Monthly Summary. Available from:https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/partici….

xii. Reinert, M, Fritze, D. & Nguyen, T. (October 2022). The State of Mental Health in America 2023. Mental Health America, Alexandria VA. Available from: https://mhanational.org/sites/default/files/2023-State-of-Mental-Health…;

xiii. Olson, J. R., Benjamin, P. H., Azman, A. A., Kellogg, M. A., Pullmann, M. D., Suter, J. C., & Bruns, E. J. (2021). Systematic Review and Meta-analysis: Effectiveness of Wraparound Care Coordination for Children and Adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 60 (11), 1353–1366. https://doi.org/10.1016/j.jaac.2021.02.022 

xiv. Graaf, G. (2021). Evidence Based Practice in Systems of Care for Children with Complex Mental Health Needs. Journal of Evidence-Based Social Work, 18(4). 

Citations

Grube, W. (2023). Levering SED Waiver to Support Families. University of Kansas School of Social Welfare Center for Research to Transform Systems for Family, Community, and Social Justice: Lawrence, KS.