America’s long-term care infrastructure: A road to nowhere

Long-term care is complex. Few Americans plan ahead and most wait until a crisis pushes them into a frantic search for solutions. It doesn’t have to be this way.

Every day older adults lose their ability to care for themselves. Often, they are discharged from the hospital too weak or confused to be left alone or care for themselves. Now what? Who will take care of them? Is home or facility-based care the best option? How much will it cost and who will pay? Does Medicare cover it? Does Medicaid? If home care is the answer, how do you find a qualified and affordable caregiver? Where do you even start? Life-changing decisions must be made, and fast.

Millions of families of all income levels grapple with these challenges every day across the country and with little support or guidance to help them find the resources they need. Most Americans don’t know what types of services are available or how to pay for them. For example, many believe that Medicare will pay for long-term services and supports like extended nursing home stays or home health aides, but generally, it does not.

The problem is that families with aging loved ones have no easily identifiable place to turn for help in navigating and accessing services. Instead, a crisis is followed by a period of calm until another care emergency arises and then the panic begins again. The stress that this places on families is unsustainable. They are being forced to create and manage an entire care network on their own over and over again. It’s more than a full-time job that often takes the place of paid employment, especially for women.

Older adults and their families need a centralized community-based resource where they can get help quickly and easily, one that is as familiar as the post office or the bank. Unless we invest publicly in building an aging services infrastructure to support the growing number of older adults who need services, the cycle of panic, desperation and exhaustion will continue to take its toll on American families.

President Biden recognized the need for major reforms when he introduced an ambitious proposal to spend $400 billion over eight years on Medicaid home and community-based services as part of his $2 trillion infrastructure plan. It calls for an expansion of Medicaid-funded long-term care services to help those who need daily assistance remain at home and provide better pay and benefits for professional caregivers.

Biden’s proposal to invest in caregiving support is a step in the right direction, but it does little to help families in a crisis navigate the maze of options and decisions involving where to seek care for a loved one, what kind of care is needed, who will provide the care and who will pay for all the services needed. There is a critical missing piece without which America’s long-term care infrastructure is, for most families, a road to nowhere. There are many players involved, including Medicare and Medicaid, hospitals, nursing homes and private-pay assisted living communities and, often, poor communication between them, leaving families to coordinate everything.

Families need to be able to find resources and guidance from advisers who are not beholden to private enterprise, and who can steer them toward the solutions that best meet their financial, care and social needs. The Area Agencies on Aging are sometimes a source for help, but they are too often underfunded, lacking complete information and limited in their ability to serve families. 

The lack of such a centralized access point to long-term care is a gaping hole in our health and long-term care infrastructure. What’s needed is new infrastructure to support the growing population of older adults who require a variety of services and supports to remain in the community. This infrastructure could include a network of community-based healthy aging hubs across the country where families can go for resources, support and advice — a one-stop shop for ongoing services and support needs. These hubs could be staffed with professionals who are trained to guide families through the process of finding and navigating care options for their loved ones. Their responsibilities could include:

• Assessing an older adult’s health and financial needs

• Creating and helping to maintain a care plan, which would entail determining if home care, institutional care or assisted living is the best option

• Providing support in identifying and selecting appropriate services and providers and coordinating care

• Providing support in securing funding through both public and private sources

Unlike most senior living referral agencies, which make their money from referral fees paid by the nursing homes and assisted living communities in their networks, these centers would operate independently through public investment and a public-private partnership for operating expenses.

This proposed infrastructure would support all older adults and their families regardless of income by identifying and connecting them to existing resources. It would leverage technology and go hand-in-hand with better financing for community-based services and support. Professionals can explain the available options and work with families to reassess their needs on an ongoing basis because needs change over time.

Biden’s proposal to invest in caregiving support is an important step, but it must be paired with new infrastructure to help families navigate and manage our complex systems for caring for and funding the needs of older adults. We need to create a network of long-term care service hubs across the country. Without this new infrastructure, families will still have nowhere to turn in a crisis — even when there may be resources out there that could help them.

Anne Tumlinson is CEO and founder of ATI Advisory, a research firm specializing in health care and aging; and Daughterhood.org, a global community of family caregivers supporting each other. She is a fellow at Nexus Insights. 

David Grabowski, Ph.D., is a professor in the Department of Health Care Policy at Harvard Medical School in Boston. His research primarily focuses on the economics of aging, with an emphasis on post-acute and long-term care financing, organization and delivery of services. Dr. Grabowski is a fellow at Nexus Insights.

Robert Kramer is founder and fellow at Nexus Insights, a thought leadership platform dedicated to the dissemination of ideas and models that contribute to the transformation of housing and aging services for older adults. Kramer is also co-founder and former CEO at the National Investment Center for Seniors Housing & Care (NIC).