Serious Emotional Disturbance (SED) Waiver: Population Descriptions

Background/Purpose: To reduce the institutionalization of children and adolescents with serious emotional disturbances, several states have instituted a 1915(c) Serious Emotional Disturbance Home and Community-Based Services (HCBS) Waiver. Over the last several years, use of Waivers has grown exponentially. Between 1995 and 2005 HCBS spending doubled from 19% of Medicaid long-term support services expenditures and 6% of total Medicaid spending to 37% and 12% respectively. Despite the frequent use of Waivers, little to no information regarding basic descriptive information is available concerning the populations accessing Waiver services. This presentation begins to address this gap in the literature by describing the Kansas SED Waiver population.

Methods: Univariate analyses were conducted using CMHC administrative data and Medicaid billing data as captured by the Results Oriented Management (ROM) system. Specifically, basic descriptive information was obtained on several key demographic variables: gender, race, age of first Waiver onset, reason for closure, and the average length of Waiver episode.

Results: Results indicate, in Kansas, the average age of Waiver onset was approximately eleven years old and the length of first Waiver episode was approximately seven and half months. Furthermore, results demonstrate that close to 15% of the Waiver population experienced multiple Waiver episodes. Regarding race and ethnicity, close to 71% of the Waiver population were White children or adolescents and over 90% were Non-Hispanic. After White children and adolescents, the next largest racial group was Black children and adolescents, accounting for 10% of the first episode Waiver population. Regarding gender, only 36% of the Waiver population was female. And finally, only 13% of Waivers closed successfully.

Implications: Based on the univariate results, children and adolescents first experience a Waiver episode around age eleven and that episode lasts, on average, approximately seven and a half months. The age of Waiver onset is an important descriptive to know. The alternative level of care for the Waiver is psychiatric hospitalization, meaning that the child or adolescent is at imminent risk of hospitalization, and thus needs Waiver services to increase their chances to remain in their home community. Knowing that Waiver episodes start around age eleven can allow for service enhancements during that age frame, which could mitigate the need for SED label designation or Waiver service utilization. Additionally, findings on the reason for Waiver closure also have significant implications. The Waiver is intended to keep children and adolescents from experiencing out-of-home placement, however, nearly 20% of Waiver service recipients either made the family choice to discontinue services or outreach attempts by the mental health center were unsuccessful. While this specific issue was not the focus of this study, it is an important piece of Waiver literature and is indicative of a larger service retention problem within community mental health. Finally, some of the univariate analyses replicate prior SED literature, which demonstrates that males are overrepresented in SED prevalence estimates, as are Black children and adolescents, leading to questions related to SED identification.