Your mom has been hospitalized for two weeks after a stroke. One morning, he told you he would leave at the end of the day. Mom calls you in a panic. Run to the hospital and ask for advice. Instead, you get a much-copied list of qualified local nursing services and a farewell sign.
This scene is played thousands of times a day. This can happen when you are discharged from a hospital to a professional care facility or from a home care facility. This occurs when members of the family circle can no longer care for their loved one at home. unaided.
But whatever the context, the sad reality is the same: most seniors and their families don’t know what to do, where to go, or who to turn to. Successfully navigating the maze of care functions is, for most families, impossible.
How can the mother get to physical therapy? Is there a meal delivery program she can use?How can I reduce the chances of it falling on your home?What is the most productive assisted living facility in your community?The answers are still notoriously hard to find.
A new report from Nexus Insights calls it a “confusing maze of post-acute and long-term care and supports. “It can be a scary and lonely journey, full of dead ends and hidden entrances or exits. Too often, older adults and their caregivers are left alone to find their way.
Doctors, insurance companies, or fitness systems may simply provide this all-important information, but they rarely do. Even Medicare Advantage case managers don’t provide the recommendations for non-medical social supports that their members really need. And that leaves patients and their families struggling, under terrible time pressures.
Nexus suggests that the U. S. solve this mess by building a new national formula of what they call “navigation centers” to update the disorganized, expensive, and highly variable formulas we have today. These centers, Nexus recommends, deserve to be easy to find, unbiased, and nationally consistent, quality-complete.
The issue, as always, is money. Who will pay for counselors to exercise and keep data on local care providers up to date?Who will pay for themselves?
The existing formula is a combination of government-funded public programs, community-based organizations, care managers, employer hotlines, and for-profit websites. Here are some examples:
Web-based services, which include nursing homes and Medicare home care, are a start, but their data is limited and outdated. In addition, most families still want to communicate with a human being about painfully difficult decisions.
For decades, those AAAs (or triple-A’s) have consumers with data on long-term care. More recently, Congress has attempted to update the concept by creating Aging and Disability Resource Centers (ADRCs).
Lately, there are more than six hundred of these programs funded with federal funds. These are hotlines that are regularly managed through local governments, about 40% are managed through community-based non-profit organizations. Most of the staff are volunteers.
Some are pretty good. Some are not. Another limitation is that they focus primarily on home and networked care and do not provide data on for-profit facilities or long-term care facilities. And they rarely have access to up-to-date data on local suppliers.
They can manage hotlines as AAA or on their own. They can be very useful, but they have little money for marketing and some families don’t even know they exist.
These are sites like A Place For Mom and Care. com. Your data is loose for consumers. But they make money from the advertising and directory fees of the institutions 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 effect on the well-being of a parent or spouse.
Sometimes referred to as “senior life care managers,” they are sometimes social staff or nurses who charge around $500 for initial testing and $100 to $200 per hour for ongoing consultations and to oversee a loved one’s care. They can be an excellent resource, if you can.
Some large companies are offering advice lines to provide information about worker care. While rarely helpful, the help is generic and includes little information about local providers and resources.
I’m not sure that Nexus’ concept for a national grid is realistic, or even necessary, but your report is a call for reform of a broken system.
The report comes on the heels of a new 100-page federal study aimed at supporting caregivers. Among her many recommendations: “When caregivers seek help, they have access to reliable and readily available resources with reliable, appropriate, and actionable data that is about to be had, and supports. “
At a time when more and more families are desperately in need of help making post-hospital rehabilitation plans or long-term supports and services, it is imperative that families have objective, intelligent, and quality data resources about this care. And right now, most of us can’t.