As baby boomers approach their 70s, 80s, and 90s, the United States is witnessing a dramatic increase in the number of older adults with disabilities. These disabilities range from difficulties in mobility and sensory functions to challenges with memory and daily activities such as bathing and using the restroom. Yet, despite this growing demographic, our healthcare system remains woefully unprepared to meet their needs—a problem starkly highlighted during the COVID-19 pandemic.
During the pandemic, it became evident that older adults with disabilities were not only more vulnerable to the virus but also struggled significantly to access necessary treatments and support. This resulted in catastrophic outcomes, with hundreds of thousands of deaths in this group alone. This has prompted the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) to initiate programs aimed at addressing the failings that led to such dire consequences.
These initiatives are a step in the right direction, but they scratch the surface of a deeper issue. Lisa Iezzoni, a 69-year-old professor at Harvard Medical School who has experienced life with multiple sclerosis since her early 20s, has been a pioneer in disability research. She highlights a significant problem: many healthcare providers have ingrained biases and a lack of understanding of their responsibilities under laws like the Americans With Disabilities Act (ADA) of 1990. Shockingly, studies show that a high percentage of physicians admit to preferring not to care for disabled patients, believing these individuals have a lower quality of life.
This bias extends beyond attitudes to affect practical aspects of healthcare delivery. Many medical facilities lack basic accommodations like height-adjustable examination tables or the technology to weigh patients who use wheelchairs. The scarcity of such essential tools not only impedes the provision of comprehensive healthcare but also diminishes the dignity of those seeking care.
The implications of these shortcomings are profound. Older adults with disabilities receive less preventive care and report poorer health outcomes compared to the general population. The healthcare they do receive is often based on incomplete information, leading to subpar treatment and lower satisfaction with healthcare services.
This systemic neglect had fatal implications during the pandemic. Crisis standards of care developed during this time often placed older adults with disabilities at the lowest priority for life-saving interventions, blatantly disregarding their value and rights.
Recognizing the urgency of these issues, HHS proposed a new rule in September that would update Section 504 of the Rehabilitation Act of 1973. This rule aims to set enforceable standards for accessible medical equipment and to mandate that medical records and digital health resources are usable for people with disabilities. It also seeks to eliminate discriminatory treatment policies that are based on stereotypes rather than individual capabilities.
Concurrently, the NIH has identified people with disabilities as a group deserving of focused research and additional funding to address health disparities. This recognition is crucial for directing resources and attention to the barriers that prevent people with disabilities from receiving equitable healthcare.
Despite these advances, many older adults do not self-identify as having a disability. They see their conditions as medical issues rather than disabilities, which alienates them from the support and resources available through the disability rights movement. This movement has traditionally been driven by younger adults, leaving older individuals without the community support that could enhance their quality of life and advocacy for their needs.
The gap in perception and identification with the disability community means that many seniors are unaware of their rights under foundational laws like the ADA and the Rehabilitation Act. This lack of awareness prevents them from advocating for accommodations that could significantly improve their health and independence.
As we face a future where a significant portion of our population will live with disabilities, it is imperative that our health system evolves to meet these challenges head-on. It’s not just about adding services or changing policies; it’s about cultivating an environment where older adults with disabilities are seen as deserving of the same quality of care and dignity as any other individual. Our society’s health and humanity depend on it.
