August 31, 2022
DREDF submitted comments in response to CMS request for information on various aspects of care delivery provided by Medicare Advantage plans. We called for special attention to be given to the potential impact of disability bias in algorithms and AI being used in healthcare and services decision-making and recommended steps CMS should take to ensure that these biases are identified and corrected. The goal is to increase equity and fairness and avoid discrimination and inappropriate care decisions for disabled Medicare Advantage beneficiaries. Although research is limited, some scholars have observed that when algorithmic and AI development and testing does not consider the potential for disability bias, certain inequitable outcomes could occur. Moreover, other specific disability status information is not measured or recorded directly within electronic health records (EHRs), yet it is likely that disabled people have a pattern of healthcare services use that might display unique variation based on disability type and might be affected by intersectional and demographic factors including race, ethnicity, gender identity, and age. Thus, any risk assessment algorithm should be designed with explicit attention to disability, not as an outlier or source of skew, but as a common demographic characteristic—an aspect of the human condition.
It’s concerning how managed healthcare plans can sometimes make patients feel trapped, especially those with limited resources. It’s unfortunate that access to necessary care can be influenced by income thresholds, leaving many without proper support. The reliance on hospital advocates, who often prioritize legal protection over patient advocacy, further exacerbates the issue. Discrimination against the elderly within hospitals is a distressing reality, highlighting the urgent need for better support systems and resources.
As a concerned grandson trying to assist my grandmother, I’m facing significant challenges in accessing her complete medical records. Instead of receiving comprehensive documentation, I’m only provided with summaries or given the runaround when requesting specific receipts or timelines. Despite reaching out to various departments within the hospital and the insurance company, I’ve encountered a lack of assistance. If anyone has insights or resources that could help guide me in the right direction, I would greatly appreciate any assistance. My sole aim is to ensure the best possible care for my grandmother. Thank you for any support you can provide.
As described in this comment, it is of vital importance to track functional disabilities as demographic factors, both in Electronic Medical Records and in ALL,Medicare programs. While disabilities are quite common, they are often recorded as endpoints of disease, not as demographic factors existing for the rest of the person’s life.
It could also be a great improvement for CMMS to consult with major national disability organizations about the needs of their members, to ensure that Medicare covers basic reasonable accommodations for people with disabilities. For example, people who have conditions that impair use of printed materials, such as blindness or dyslexia, should be able to receive all patient education materials in accessible format (such as audio recordings or digital materials accessible to text-to-speech readers). People who use wheelchairs may need rooms with exam tables that lower to facilitate easy transfer to the table. There are many other similar examples.