Our Long-Term Care System Is Killing Americans

Society needs to stay ahead of this wave. Yet, a trifecta of denial, ignorance and procrastination has long stood in the way of solutions.

The topic is not easy to think about and misunderstandings abound. Almost half of adults age 40-plus (47 percent) incorrectly believe Medicare covers long-term care services, AARP research shows. People are actually more likely to prepare for their own death than for a life that requires long-term care. While a majority of adults over age 40 have prepared wills, set aside money for funerals and discussed end-of-life issues with family members, fewer than 3 in 10 have planned for their future care needs.

This reluctance to plan has withstood even COVID-19. Polling shows that just 20 percent of adults age 40-plus have been prompted by the pandemic to consider the long-term care needs of older relatives; even more disappointing, only 15 percent have thought about it for themselves.

People need more information on care options and payment sources, and this education should begin earlier in life. At AARP, we want to raise consumer awareness and put a spotlight on these concerns. The public is always welcome to use our AARP state-specific resources to find services and supports as they deal with the pandemic. More broadly, my hope is that a better-informed public will spark innovations in the marketplace and push long-term care reform higher on the political agenda.

Some positive developments – but not enough

More people are talking about the system. Discussion about the future of long-term care has sparked pieces in The New York Times, Washington Post, Kaiser Health News and other outlets in recent weeks. The Administration's $400 billion proposal is an important step in the right direction because services that promote independence, the paid workforce who provides them and unpaid family caregivers who are the backbone of our care system are a critical part of our society's infrastructure. But we urge greater engagement by both the private and public sectors in building an affordable system that meets people's real needs and preferences.

The pandemic has sped up the adoption of telehealth, which may one day help to improve health outcomes and access to care for many people, including underserved women and members of black and brown communities. Digital health records and innovations to promote safety and wellness continue to reach the marketplace.

Congress last year made the medical expense deduction permanent, an important gain for people with acute and chronic medical conditions. Lawmakers also extended the bipartisan Fischer Tax Credit for employers who offer at least two weeks of paid leave to workers who earn less than $72,000, a move that will help family caregivers. More than a dozen states have moved on their own to provide paid leave.

In addition, some employers are beginning to support workers who provide care at home with benefits like flex-time and health counseling. In one survey, 75 percent of corporate benefit managers agreed that “being a more caregiving-friendly workplace would attract and retain talent.”

Less tangibly, the pandemic has dramatized the value of frontline and essential-care workers, a generally low-paid group that soldiers on for all of our benefit.

5 steps toward a better system

Despite these positive ripples, the real job of reforming long-term care remains before us.

The national debate should aim for a holistic system where supports and services are integrated with affordable medical treatment. Services should be delivered in settings that enable adults of all backgrounds to live the best lives possible. Those able to remain in their own homes should have that option and the support needed to do so. Residents of nursing homes should be assured of safety, personal dignity and quality care.

In the coming weeks and months, I will continue to highlight the urgent need for a national effort to improve care, aimed at focusing public attention on the following priorities:

How to achieve lasting long-term care reform

No one said this would be easy. Despite all the anguish and heartbreak, policymakers still turn their heads from the nursing home problem. Even modest remedies may come with a stiff price tag. Issues of quality, funding, regulation, accountability, workforce pay and training and transparency all belong on the table.

But we have to start somewhere. (Note to all you pundits and conference planners out there: This area cries out for fresh ideas.)

The first challenge is to improve the quality of care and quality of life in nursing homes. The restoration of public trust will follow when facilities do a good job consistently. They must apply lessons from the pandemic to ensure greater health, safety and resident well-being in the future. Providing folks with more options, including HCBS, helps minimize the number of people needing to enter nursing homes. More basically, we need a national commitment to re-envision how an advanced society should provide care in the 21st century. All stakeholders have a role to play: business, labor, consumers, advocates, government, nursing homes, hospitals, assisted living and home and community-based service providers, to name a few.

Yes, it's hard to get things done in Washington these days, even little things. Fixing long-term care won't be easy.

But let's not forget that as a nation, we've done big things before. Once upon a time, older adults without money lived out their final days in a miserable county poorhouse. People said there was nothing to be done. Then America created Social Security, providing an entirely new foundation of financial well-being. Before the 1960s, the idea that government should offer health insurance to low-income or older individuals was a bridge too far in Washington. Then we launched Medicaid and Medicare, helping millions and altering that view forever. Why not aim big on long-term care? After a lifetime of paying taxes and contributing to society, older adults deserve as much independence, security and dignity as possible. Quality care should be within reach of any person who needs it, whatever their age. The goal should be to use the momentum spurred by COVID-19 to create a humane, sustainable system of care that works for everyone. We can begin by recognizing this long-neglected problem and offering serious ideas to address it. It's long past time to engage in this national debate.

Let's get started.

Nancy LeaMond is AARP's chief advocacy and engagement officer.