Immediate Action Needed on Long-Term Care Reform

This feature article was submitted Nancy LeaMond, AARP Chief Advocacy and Engagement Officer.

Transforming America's fractured and outdated system of long-term care could enhance the lives of millions. We've known that for years. Yet society has failed to act, and older adults have paid a terrible price in personal safety and quality of life.

It doesn't have to be that way.

Here are five reasons why the moment has arrived to have a national conversation and take meaningful actions on long-term care:

1. The system is now in the spotlight. President Biden's infrastructure plan, which would invest $400 billion in home- and community-based services, has focused much-needed attention on these issues.

2. COVID-19's devastating impact. Over 184,000 residents of nursing homes and other long-term care facilities have died from COVID-19, and a barrage of news stories reported on this horror. We cannot let that tragedy fade in memory.

3. Long-term care is a bipartisan concern. The recently introduced Credit for Caring Act demonstrates bipartisan support to ease the struggles family caregivers face.

4. The inequity of our caregiving system. The pandemic has dramatized the system's poor treatment of the neediest and most vulnerable, with older adults in communities of color often treated worst of all.

5. The need for care continues to grow as America ages. People want better options — and opportunities to stay independent — when it comes to long-term care. Yet, on our current path, services that enable people to remain in the community fall short of the demand.

I see signs that people want these challenges addressed in more than just the cursory manner they are used to. Last spring, AARP asked family caregivers to tell us what was going on with their loved ones in nursing homes. We received more than 6,000 accounts in just over a week — a poignant outpouring of stories that depicted fear for older parents, spouses, siblings and other loved ones; anger at how they were being treated; and strong calls for change. We are now hearing more from family caregivers who are bound and determined to keep their loved ones at home but are also struggling enormously in many ways.

We know that about half of those who reach age 65 will have to pay for care before they die; a larger number will depend on relatives and friends for the help they need. Real change means focusing on ways to ensure that quality care is accessible to all while honoring the fact that most Americans, when given a choice, deeply desire to remain in their homes and communities.

Facing up to the safety challenge

More than 30 percent of COVID-19 deaths in the U.S. have occurred in nursing homes and other long-term care facilities. Staffing shortages and a lack of training contribute to safety problems, including falls and accidents. The most recent AARP Nursing Home Dashboard reports that nearly 25 percent of facilities across the country still report staffing shortages. Before the pandemic, data compiled by the Government Accountability Office already showed many nursing homes getting cited for infection-control deficiencies — for things as fundamental as staff not washing hands between caring for one resident and the next — and that such flaws were often chronic. The New York Times subsequently found that residents in top-rated facilities were as likely to die from COVID-19 as those in facilities ranked near the bottom.

We also know that communities of color bear an excessive burden for problems in long-term care facilities. A University of Chicago study found that nursing homes with larger shares of Black and Hispanic residents had more than three times as many deaths as those with larger white populations. Earlier studies have found that non-white individuals are more likely to end up in nursing homes with low budgets, insufficient staffing and other shortcomings that undermine health and safety.

An aging population will need more care

The clock is already ticking. By 2030, every boomer will be at least 65 years old, with Gen X and the Millennials aging right behind them. Like older Americans today, they too will demand options. Additionally, AARP researchers project that in 2030 — less than a decade from now — 16 percent of women between 80 and 84 will be childless. (And more often than not, it is women who end up alone and in need of care.) By contrast, just 12 percent of women ages 80-84 were childless in 2010. Americans’ need for help with essential daily tasks and personal needs will only grow greater as time goes on. We have to answer the question: Who will be there to provide the support?

Reimagining our outdated long-term care system

The answer cannot simply be to build more nursing homes. What we need is to reimagine long-term care in America so older Americans have good choices. We absolutely must address the safety issues in nursing homes. But that's not the whole job. We should also consider providing more of the supports and services that enable people to live at home — and when that is not possible, to live in environments where they will thrive.

The Administration's $400 billion proposal can kick-start this important debate. But we must do even more to ensure that family caregivers — who are and will continue to be the backbone of America's long-term care system — get the support they need. And we need to hear all perspectives.

Models that increase choices for all, fresh ideas and private-sector innovations belong high up on the agenda. Families in every community and region of the country share these concerns. They have become more urgent thanks to the pandemic exposing our systemic deficiencies — and they are only going to increase.

There has never been a better time to debate solutions and take action. We cannot wait.