The U.S. Needs To Help Seniors And Their Families Navigate Long-Term Care

Your mom has been hospitalized for two weeks following a stroke. One morning, she’s told she’ll be discharged by the end of the day. Mom calls you in a panic. You rush to the hospital and ask for advice. Instead, you get a much-copied list of local skilled nursing facilities and a wave good-by.

This scene is played out thousands of times a day. It may happen with discharges from a hospital to skilled nursing facility or from a nursing facility to home. Sometimes it happens when family members can no long care for their loved one at home without help.

But no matter the setting, the dismal story is the same: Most older adults and their families have no information about what to do, where to go, or who to ask. Successfully navigating the labyrinth of care options is, for most families, impossible.

“A terrifying and lonely journey”

How can mom get a ride to physical therapy? Is there a meal delivery program she can use? How can I reduce the chances she’ll fall in her house? What is the best assisted living facility in her community? The answers are essential but remarkably hard to find.

A new report by Nexus Insights calls it “a confusing maze of post-acute and long-term care services and supports. It can be a terrifying and lonely journey filled with dead ends and hidden entrances or exits. Too often, older adults and those who care for them are left to find their way alone.”

Physicians, insurance companies, or health systems could provide this crucial information but rarely do. Even Medicare Advantage case managers often fail to deliver the advice about non-medical social supports their members really need. And that leaves patients and their families scrambling, often under terrible time pressure.

Navigational hubs

Nexus suggests the U.S. fix this mess by building a new national system of what it calls “navigational hubs” to replace the disorganized, costly, and highly variable programs we have today. These centers, Nexus recommends, should be easy to find, unbiased, full-service, and nationally-consistent in their quality.

The problem, as usual, is money. Who will pay to train advisers and maintain up-to-date information on local care providers? Who will pay for the services themselves?

Today’s system is a mix of government-funded public programs, community-based organizations, private care managers, employer-based help lines, and for-profit websites. Here are a few examples:

Medicare Compare

Web-based services, including Medicare’s own Nursing Home and Home Health Compare are a start but their information often is limited and outdated. Besides, most families still need to talk to a human about what are often painfully difficult choices.

Area Agencies on Aging

For decades, these AAAs (or triple-A’s) have provided consumer information about long-term care. More recently Congress tried to update the idea by creating Aging and Disability Resource Centers (ADRCs).

There currently are more than 600 of these federally-funded programs. They generally are telephone helplines run by local governments, though about 40 percent are operated by community non-profits. Most staff are volunteers.

Some are quite good. Some are not. Another limitation: They focus primarily on home and community based care and often will not provide information about for-profit services or long-term care facilities. And they rarely have access to up-to-date information about local providers.

Community-based organizations

They may operate helplines as AAAs or on their own. They can be quite helpful but have little money for marketing some families often don’t know they even exist.

Pay-to-play websites

These are sites like A Place For Mom and Care.com. Their information is free to consumers. But they make their money from advertising and referral fees from the facilities they recommend.

These sites are popular because many consumers are reluctant to pay for advice even when they are making decisions that will cost them tens of thousands of dollars and have a critical impact on the well-being of a parent or spouse.

Geriatric care managers

Sometimes called “aging lifecare managers,” they often are social workers or nurses who charge roughly $500 for initial assessments and $100 to $200 an hour for ongoing consultations and to oversee the care of a loved one. They can be a great resource, if you can afford it.

Employer-based programs

Some large firms offer advice lines to provide caregiving information to employees. While sometimes useful, the assistance often is generic with sparse information about local providers and resources.

I’m not sure that the Nexus idea for a national network is realistic, or even necessary. But its report is an important call for reforming a broken system.

The report comes on the heels of a new 100-page federal study aimed at supporting caregivers. Among its scores of recommendations: “When caregivers seek assistance, they have trusted and easily accessible sources of reliable, appropriate, and actionable information regarding available services and supports.”

At a time when more and more families desperately need help planning post-hospitalization rehab or long-term supports and services, it is critical that families can access good quality objective sources of information about that care. And right now, most of us can’t.