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What’s the Relationship Between Ableism and Community Living, and Why Does it Matter?

By Carli Friedman, CQL Director of Research

Deinstitutionalization of people with disabilities is at an all-time high in the United States as a result of advocacy by people with disabilities and their families, research indicating the benefits of community living, and the cost effectiveness of community living. In fact, the Centers for Medicare and Medicaid Services (CMS) introduced Home and Community-Based Services (HCBS) in 1981 to help states tailor their services to maximize community living. In doing so, CMS granted states a lot of flexibility in what services they provide and how they provide them. While doing so is beneficial to help serve unmet needs and provide services tailored to particular populations, it has also resulted in a wide variance across states and programs. Moreover, it also often means that state climates and attitudes may impact Medicaid programs, decisions about dedicating revenues, and the prioritization of HCBS.

For these reasons, the aim of our study was to examine the relationship between HCBS and disability prejudice in the United States. To do so, we conducted an analysis of state LTSS expenditures (fiscal year 2015) and unconscious (implicit) disability prejudice data from 325,000 people across the nation.

Findings of our study revealed, the higher the state’s disability prejudice, the less LTSS spending it directs towards HCBS regardless of the state’s size or wealth. For example, according to our model, a state with an average disability prejudice score of 0.55 (moderate prejudice) is expected to spend 40.3% of their LTSS on HCBS services. Whereas, a state with an average disability prejudice score of 0.34 (slight prejudice) is expected to spend 90.5% of their LTSS on HCBS services.

The Relationship Between States’ Disability Prejudice and HCBS Spending

The findings of this study suggest a link between disability prejudice and the prioritization of HCBS for people with disabilities. As such, these findings suggest at least part of the motivation behind policy decisions related to community living may be related to disability bias. As a result, understanding societal and cultural attitudes towards disability may help us understand states’ approaches to services and supports. “Disability prejudice is harmful because it can influence decisions not only about HCBS but about health care and policy more broadly, which can directly impact the quality of life of people with disabilities. Basing fiscal priorities on biased information or stereotypes about people with disabilities not only serves to reinforce this prejudice and normalize it, but also contributes to the legacy of oppression of people with disabilities… Understanding how established beliefs and attitudes toward disability can translate to critical policy decisions impacting people with disabilities quality of life is vital. The often-subtle structural biases and prejudices against people with disabilities have a long history that demand closer examination to recognize how this history may influence today’s policies and practices” (Friedman & VanPuymbrouck, 2019, pp. 13-18).

This article is a summary of the following journal manuscript: Friedman, C., & VanPuymbrouck, L. (2019). The relationship between disability prejudice and Medicaid home and community-based services spending. Disability and Health Journal, 12(3), 359-365.