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
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
“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. https://doi.org/10.1007/s10803-024-06441-z
References
- Autistic Self Advocacy Network. (2023). ASAN comments Re: Mental Health Parity and Addiction Equity Act. https://autisticadvocacy.org/2023/10/asan-comments-re-mental-health-parity-and-addiction-equity-act/
- Gardiner, F. (2017). First-hand perspectives on behavioral interventions for autistic people and people with other developmental disabilities. Office of Developmental Primary Care & Autistic Self Advocacy Network. https://autisticadvocacy.org/wp-content/uploads/2017/07/First-Hand-Perspectives-on-Behavioral-Interventions-for-Autistic-People-and-People-with-other-Developmental-Disabilities.pdf
- Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19-29. https://doi.org/10.1108/AIA-08-2017-0016
- Magiati, I., Charman, T., & Howlin, P. (2007). A two‐year prospective follow‐up study of community‐based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 48(8), 803-812. https://doi.org/10.1111/j.1469-7610.2007.01756.x
- McGill, O., & Robinson, A. (2020). “Recalling hidden harms”: Autistic experiences of childhood applied behavioural analysis (ABA). Advances in Autism, 7(4), 269-282. https://doi.org/10.1108/AIA-04-2020-0025
- Shkedy, G., Shkedy, D., & Sandoval-Norton, A. H. (2021). Long-term ABA therapy is abusive: A response to Gorycki, Ruppel, and Zane. Advances in Neurodevelopmental Disorders, 5(2), 126-134. https://doi.org/10.1007/s41252-021-00201-1
- Wilkenfeld, D. A., & McCarthy, A. M. (2020). Ethical concerns with applied behavior analysis for autism spectrum “disorder”. Kennedy Institute of Ethics Journal, 30(1), 31-69. https://doi.org/10.1353/ken.2020.0000
HCBS is a Critical Safety Net for Mental Health of People with IDD