The good news: most Americans are living longer than their forebears. In spite of recent discouraging trends in life expectancy, a record number of American seniors will reach their 90s in the years ahead, and quite a few of those will pass the century mark.

But the bad news is that, as men and women live longer, they will face ever increasing odds of various kinds of disability. Moreover, what make that bad news even worse is that the U.S. health care system is severely ill-equipped to deal with the surge in the numbers of disabled seniors. That was the disturbing conclusion from this recent article from KFF Health News written by the insightful reporter Judith Graham.

We share this highly relevant report as a reminder not to place too much reliance on an over-stressed system for future care. Families need to start planning earlier for the care needs of loved ones in the years to come. And seniors need to choose their health care providers with special discernment. We’ll cover these points in more depth at the end of the article. For now, let’s see what Graham has to say.

Aging Boomers Equal More Seniors with Disabilities

Graham begins with the sobering fact that the number of seniors with disabilities, which she defines as “difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks,” is set to climb substantially in the coming years as baby boomers age – and yet the health care system is not ready to receive or care for them.  

“That became painfully obvious during the COVID-19 pandemic,” she writes, “when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.”

New Initiatives Promise Better Care for Seniors with Disabilities

As a start, Graham notes an initiative which is meant to strengthen access to “medical treatments, equipment, and web-based programs for people with disabilities.” Another new policy recognizes that those with disabilities—which includes older adults—should be seen as a separate population who require unique research and attention for their health concerns. This in turn may lead to greater availability of research funding from government sources.

For personal knowledge and expertise, Graham turns to Lisa Iezzoni, age 69, a professor at Harvard Medical School who is considered the “godmother of research on disability” thanks to her own experiences living with multiple sclerosis since her early 20s.

Iezzoni called the initiatives “an important attempt to make health care more equitable for people with disabilities. For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need.”

Most Doctors Are Biased Against Those with Disabilities

Iezzoni has made some startling discoveries in recent years through her research. Graham explains, “In survey results published in 2021, 82 percent of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57 percent said they welcomed disabled patients.”

Eric Campbell, a co-author of this study and professor of medicine at the University of Colorado, was disquieted by these results. “It’s shocking that so many physicians say they don’t want to care for these patients,” he said.

Graham notes that these findings apply to disabled people of all ages, but it’s important to remember that a larger proportion of older adults live with disabilities compared to younger age groups. In fact, she writes, about one-third of people 65 and older, around 19 million people, have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors Don’t Understand Responsibilities Under ADA Rules

Iezzoni has discovered other unsettling facts about the relationship between doctors and disability care. In 2022, she and Campbell “reported that 36 percent of physicians had little to no knowledge of their responsibilities under the 1990 Americans with Disabilities Act, indicating a concerning lack of training.”

The ADA includes a requirement that doctors and other medical practices provide equal access to people with disabilities, and it also outlines certain accommodations that need to be provided for disabled patients. 

When doctors do not comply with ADA, their failure has practical consequences. For example, Graham writes, “Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.”

For Iezzoni, this isn’t simply a research subject; she has experienced this firsthand. Because she relies on a wheelchair, she can’t transfer to a fixed-height exam table. Graham writes, “[Iezzoni] told me she hasn’t been weighed in years,” even by her own physician.

Seniors with Disabilities Face Serious Medical Consequences

There are medical consequences to the shortcomings that Iezzoni describes. Graham explains, “People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.”

To make matters worse, during the pandemic—when “crisis standards of care” were put in place—people with disabilities, including older adults, were considered lower priorities. These standards were designed to “ration” care thanks to a shortage of lifesaving equipment, like respirators.

Graham writes, “There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.”

Proposed Ruling Would Set New Standards of Care

But the tides are shifting, and new rules would explicitly ban such discrimination.  A new rule proposed by HHS in September “would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.”  This would be the first such update in 50 years.

Graham explains, “The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.”

Alison Barkoff, head of the HHS Administration for Community Living, says of the new rule, “This will make a really big difference to disabled people of all ages, especially older adults.” Barkoff expects the rule to be finalized this year, and the provisions related to medical equipment are likely to go into effect in 2026, with extra costs paid by medical providers.

People with disabilities have also been designated a population with special health disparities according to the NIH, a designation which makes a new funding stream available to pay for research projects. Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center, adds that this new designation “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back.”

Many Seniors with Disabilities Don’t Say They’re “Disabled”

At the conclusion of her article, Graham notes one final obstacle for older adults: they are far less likely to identify themselves as “disabled” compared to their younger counterparts.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni says.

In a similar manner, seniors who experience mobility issues from a stroke or severe osteoarthritis typically identify themselves as “having a medical condition”, not a disability.

Graham writes, “Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.”

Swenor worries that many older adults don’t recognize their own rights under these laws. She says, “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

Rajiv’s Take: Seniors and Families Need to Take Charge of Care

We asked Rajiv Nagaich his view of this situation, and his reply was blunt. “There’s no question,” he said, “that the health care situation for many if not most seniors is getting worse.  The challenge is, what are seniors and their families going to do about it?”

According to Rajiv, seniors aren’t helpless. “Look,” he states, “there’s still a lot you and your family can do to make sure you’re not at the mercy of a system that wants to put you into institutional care the moment you start exhibiting physical impairment. Instead, make certain you have as your primary care doctor a geriatrician who understands your needs. Make certain you’re staying as healthy as you can with proper diet and exercise. And above all, make sure you and your loved ones are on the same page when it comes to the care you’ll need as you age.”

A great please to start: attend a LifePlanning Seminar. Bring your family members. We guarantee that it will start you thinking differently about your future as you grow older.

Breaking News: Rajiv’s New Book is Here!

We have big news! The long-awaited book by Rajiv Nagaich, called Your Retirement: Dream or Disaster, has been released and is now available to the public.  As a friend of AgingOptions, we know you’ll want to get your copy and spread the word.

You’ve heard Rajiv say it repeatedly: 70 percent of retirement plans will fail. If you know someone whose retirement turned into a nightmare when they were forced into a nursing home, went broke paying for care, or became a burden to their families – and you want to make sure it doesn’t happen to you – then this book is must-read.

Through stories, examples, and personal insights, Rajiv takes us along on his journey of expanding awareness about a problem that few are willing to talk about, yet it’s one that results in millions of Americans sleepwalking their way into their worst nightmares about aging. Rajiv lays bare the shortcomings of traditional retirement planning advice, exposes the biases many professionals have about what is best for older adults, and much more.

Rajiv then offers a solution: LifePlanning, his groundbreaking approach to retirement planning. Rajiv explains the essential planning steps and, most importantly, how to develop the framework for these elements to work in concert toward your most deeply held retirement goals.

Your retirement can be the exciting and fulfilling life you’ve always wanted it to be. Start by reading and sharing Rajiv’s important new book. And remember, Age On, everyone!

(originally reported at https://kffhealthnews.org)