Long term care has long been one of health care's "issues of the future" for decades. For the millions of Americans who require long term care services and supports — and their families — it needs to become an issue of today.
The demographic trends and costs driving the need to redefine long term care financing and delivery are the same today as when the Community Living Assistance Services and Supports Act (CLASS Act), which aimed to create a voluntary and public long term care insurance option for all working Americans, was passed in 2010 — and then repealed in 2013. They are the same as when I worked on these issues from 1999 to 2003 as part of an organization called Citizens for Long Term Care. They are the same as when the Pepper Commission addressed long term care in 1990. And they are the same as when President Ronald Reagan proposed his New Federalism in the early 1980s, which included the federal government taking over the Medicaid program (including responsibilities for long term care) in exchange for states taking over what was then known as the Food Stamp and the Aid to Families with Dependent Children programs.
While policymakers might have been lulled into a state of complacency because the tidal wave of aging Baby Boomers had not yet crashed into long term care, advocates have known that eventually a crisis would come. Little did we expect it to be in the form of a highly contagious pandemic, which continues to highlight the inadequacy of the country's approach to long term care. As President Biden's and Democrat’s original budget reconciliation proposal suggests spending an additional $400 billion on community based long term care services and supports, it is important to consider the impact of Covid-19 on this type of care.
When the pandemic hit America's long term care facilities — primarily nursing homes and assisted living facilities — they were totally unprepared to prevent the spread of SARS-CoV-2 among their residents. A lack of personal protective equipment, undertrained caregivers, understaffed facilities, and a lack of electronic medical records — all the result of years of chronic government and provider underinvestment — have contributed to nearly 187,000 deaths to date. That's approximately 26% of all Covid-19 deaths.
The Covid Tracking Project estimates that 1 in 10 people living in nursing homes have died of Covid.
There are two beliefs that people commonly hold about long term care:
- I won't need long term care services and support (even though the numbers make clear that 56% of Americans who turn 65 will need them at some point).
- I will never go into a nursing home (despite data showing that 33% of people reaching age 65 will need nursing-home care at some point in their lives).
For the operators of the nation's long term care facilities, Americans' long-held aversions to facility-based care, coupled with the astronomical death rate due to Covid-19, suggest the need for a fundamental overhaul of this care model. Providers need to convince potential residents and their families they will be well cared for, safe, and happy. Otherwise, why would a family ever resort to facility-based care unless there was absolutely no other option?
Into this reality, the Biden administration has proposed investing $400 billion in community and home-based long term care services and supports as part of its budget reconciliation process. Like the rest of the reconciliation proposal, the home-care section does not specify how the funds will be spent, other than to say it will expand the number of home care workers (by as many as 700,000, according to one left-leaning think tank) while raising wages and increasing benefits. If passed, this investment would enhance a decades-long effort by advocates to move to a long term care model that gives people more flexibility to stay in their homes and communities as they age.
Medicaid, the default funder of most long term care, had long pushed people into nursing homes despite their desire to never live in one. It wasn’t until 2013, 14 years after the U.S. Supreme Court’s decision in Olmstead v. L.C., that government spending for community-based long term care services and supports surpassed funding for nursing home care. The Olmstead decision stated that people with disabilities, including age-related disabilities, have a right to receive state-funded services in the community rather than institutions. For home care advocates, the Biden administration's proposed investment represents a massive opportunity to rebalance how long term care services and supports are delivered in America. Yet as pressure increases to reduce the cost of the overall reconciliation package, reports are already indicating the $400 billion will be reduced to $190 billion or less.
Despite policymakers' 40 year on-again, off-again flirtation with long term care, they have never been able to integrate it into our nation's health and retirement security framework. Instead, American families careen from crisis to crisis, reacting only in emergencies, struggling to find financing, arranging care, and hoping they are making the best decisions for loved ones while government officials ignore the need for long term care despite total national spending for formal and informal care approaching $850 billion a year.
It's not clear when we will be free enough of the day-to-day impact of Covid-19 on the health system to sit back and take stock of how health care needs to change. But when we do, it would be a shame if the tragic loss of thousands upon thousands of long term care residents does not compel us to undertake a serious national effort to overhaul the systems of care and supports for our society's most frail and at-risk citizens.
Patrick Brady, EVP, is a health care communications and public affairs consultant at BCW. From 1999 to 2003 he served as the executive director of Citizens for Long Term Care, a national organization devoted to addressing long term care financing reform.