In the United States, most older adults and people with disabilities prefer to remain in their homes or communities as they age. To do this many of them need home and community-based services (HCBS), a spectrum of home care and support that prevents or delays nursing home care for close to 2 million Americans. All states cover these services through a Medicaid waiver that diverts funding for large institutions to home-based care. To qualify, individuals must meet financial and functional eligibility requirements. While the federal government requires that states determine functional eligibility through a formalized assessment of physical and cognitive abilities, they do not mandate any specific assessment tool for state Medicaid programs to conduct these evaluations. Thus, in 2016, there were at least 124 different instruments in use across the United States with most states using more than one tool across their various long-term care programs.

To be sure, there are some commonalities across these tools. They usually cover the same domains: physical health, mental health, functioning, social resources, economic resources, and physical environment–which is why typically the assessments are conducted in a face-to-face interview in the individual’s home. But tools vary widely in the depth with which they cover each of the domains and in the individual questions and instruments they use to measure functional ability.

In our research we examine the variation in how states determine eligibility for HCBS, and its consequences for the delivery of these services to the elderly and people with disabilities. Based on a qualitative analysis of an original data set of 83 assessment tools used across the country, we found that a significant number of tools include open-ended questions that invite test administrators to exercise discretion in their assessments. These openings for discretion serve three purposes. First, they provide the contextual information that enables medical assessments to be translated into an evaluation of need. Second, they reconcile multiple forms of measurement and information collected from different experts. Finally, they invite experts to adjudicate information and offer an evaluative recommendation.

In other words, assessment tools need to both efficiently standardize the evaluation of impairment and need, but also provide ample room for discretion in order to situate standards within their local contexts. Take the following excerpt from Kentucky’s Medicaid Waiver Assessment. The standardized questions are vague and leave open the possibility that testers will draw on their own normative assumptions about what constitutes independence. Each task contains within it a wide range of potential steps. For example, doing laundry involves recognizing when clothing is dirty, collecting it, operating a washing machine and dryer, folding clothes, and putting them away. This leaves a wide margin for how to interpret independence. 

We suspect that variation in how discretion is used and documented has consequential effects on how home and community-based services are allocated. While states’ ability to use different assessment tools enables them to construct tailored caregiving programs that address the needs of their populations, it also hinders the development of common benchmarks for quality, payment rates, and strategies that promote better use of state and federal resources. 

More broadly, we need to better understand the sources and consequences of variation in these assessments because evaluating a person’s capacity to conduct activities of daily living reaches far beyond the individual to affect housing, finances, and other social services for the elderly and people with disabilities. While we are not arguing for a purely standardized assessment process, we think discretion deserves special attention because it could be both a tool for flexibility, innovation and personalized care (the explicit goals of HCBS), but also a tool for discrimination when the process is opaque and varies so much between states.

Cover Image: https://www.pexels.com/photo/woman-and-elderly-man-sitting-on-bed-7551671/ Author: Kampus Production; Instagram: https://www.instagram.com/kampusvideo; This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.