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HCBS is a Critical Safety Net for Mental Health of People with IDD

By Carli Friedman, CQL Director of Research, & Carine Luxama, CQL Mentorship Student and University of Massachusetts Boston PhD student

People with intellectual and developmental disabilities (IDD) are more likely to have mental and behavior health conditions and disabilities than people without disabilities. Yet, many people with IDD face unmet needs for mental and behavior health supports and services. As a result, they are frequently overprescribed psychotropic medications, may face crisis situations, and may be re/institutionalized. Therefore, availability of these services and supports is crucial.

The aim of our study was to examine if and how states offer mental, behavior, and crisis services for people with IDD in their Home- and Community-Based Services (HCBS) programs. To do so, we analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers from across the country.

We found more than 190,000 people with IDD were projected to receive $1 billion of mental, behavior, and crisis services. While almost one-quarter of people with IDD with HCBS were projected to receive mental, behavior, and crisis services through waiver programs, there was significant variation in how these services were implemented across waivers and states. For example, average annual projected spending per person ranged from $416 in New Jersey to $17,885 in Hawaii.

Average Projected Spending Per Person on Mental, Behavior, and Crisis Services

Map of the United States showing average spending per person for each state. It ranges from $0 (6 states) to $17,885 (Hawaii). Most states are in the $1000 to $2000 range.

In addition, there were also differences in the types of approaches permitted in mental and behavior health services. Our findings indicate, when approach type was outlined, a greater proportion of funding was directed towards applied behavior analysis (ABA) than positive behavior supports (PBS), counseling, or other behavior interventions; a greater proportion of people with IDD were also projected to receive ABA, compared to other approaches. It should be noted that self-advocates and researchers have criticized ABA for being harmful, traumatic, and ineffective, and many have recommended approaches that consider social and environmental causes of behavior, like PBS is supposed to, instead (Autistic Self Advocacy Network, 2023; Gardiner, 2017; Kupferstein, 2018; Magiati et al., 2007; McGill & Robinson, 2020; Shkedy et al., 2021; Wilkenfeld & McCarthy, 2020).

Mental and Behavior Health Services by Intervention Approach

Mental and Behavior Health Services by Intervention Approach. % of people projected to receive this type of approach: applied behavior analysis 48%, positive behavior supports 26.8%, other behavior intervention 6.7%, counseling 10.8%. % of spending projected for this type of approach: applied behavior analysis 70.4%, positive behavior supports 16.3%, other behavior intervention 7.4%, counseling 2.6%

“HCBS are designed to support people with IDD’s health and quality of life. One important aspect of doing so is the provision of mental and behavioral health, and crisis services, which, as we found, were widely offered in HCBS for people with IDD to prevent institutionalization, promote integration, and improve quality of life. While the majority of states offered these services in their IDD waivers, there were vast inconsistencies in how they did so, across states, waivers, and services. HCBS are a crucial safety net to ensure people with IDD, especially those who also have mental health disabilities, can live and thrive in their communities; thoughtful implementation, continued research, and additional advocacy are necessary to ensure these service provision differences do not turn into inequities” (Friedman & Luxama, 2024).

This article is a summary of the following journal manuscript: Friedman, C. & Luxama, C. M. (2024). Mental and behavioral health, and crisis services for people with intellectual and developmental disabilities in Medicaid Home- and Community-Based Services. Journal of Autism and Developmental Disorders.