The crisis no one wants to discuss: What to do when a loved one needs long-term care | Opinion

January 7, 2020 6:30 am

By Ray Landis

It’s a call you dread, but you’re never prepared for it. It may come from a sibling, or it may come from an unknown medical professional.  But the message is the same.  “Your mom (or dad) is in the hospital.  You need to get here.”

You might be 5 miles away or 500 miles away, but you’ll still scramble to get there as quickly as you can. The next hours and days are a blur – there might be surgery, there will be serious discussions with physicians and family members, hours sitting by the bed in the hospital room.

Finally, there is a decision to be made:  Where is Mom going when she leaves the hospital?

Most families are at a loss when this question is asked of them. It’s time we stepped up to ensure there’s a ready answer for every family facing this situation.

Many Americans start out with a false assumption about how we pay for this kind of care, known as long-term services and supports.

Families think “Mom is on Medicare, so we don’t need to worry.”  But that is not how our system works.  If an individual has been admitted to a hospital and is discharged to another facility, Medicare will pay for 100 days of care.

After that, the individual is responsible for paying for care. Go directly from home to a facility?  Medicare doesn’t cover that at all. The average cost of a nursing facility is now between $8,000 and $9,000 a month. Few families have the necessary savings put away to afford this over the long term.

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Maybe you think other insurance will pick up the tab? The only type of insurance that could help is a long-term care insurance policy.

Less than 15 percent of Americans have such a policy, which is only affordable if purchased 20 to 30 years before the average person will have a need for the benefits.

Even then, those who bought policies in the 1980s or 1990s have suffered through significant premium increases, as insurers completely misread the market when the policies were sold (yet the insurance companies have pushed the cost of paying for their errors onto the backs of their policyholders, but that’s another story…).

Inevitably, families are forced to make hard decisions when loved ones can no longer live independently. Many take on caregiving responsibilities themselves, juggling work, children, and home care aides.

Individuals who simply can’t live at home exhaust their savings, deplete their assets, and go on Medicaid. We often think of Medicaid as a health care program for the impoverished, but more and more it is the payer of last resort for long term services and supports for those who have nowhere else to turn.

This is the crisis no one wants to discuss, because any solution is going to involve money.  And elected officials don’t want to touch any issue that will force them to look taxpayers in the eye and say, “we need to pay for a solution to this situation.”

The Affordable Care Act attempted to set up a government administered long-term care insurance program, but when there was a realization this would involve Americans paying for it through a premium charge, it was dropped like a hot potato.

Perhaps the past decade has brought a change in thinking, however, as proposals for a Medicare for All plan expand Medicare by including long-term services and supports. This is a critical and necessary step forward, but it seems to have been lost in all the talk about costs and paying for this change.

For many of us, the eventual need for this kind of assistance is like a lion lurking just out of sight in the tall grass – the longer nothing happens the less we worry about it. But someday, something will happen.

Until we see action from elected officials, families need to learn about options before a crisis occurs. The first step is learning about the other Area Agency on Aging in your town. Every county has that office and it has information and advice on services for older individuals.

Nothing will lessen the shock of the call to let you know a loved one has serious health issues. But having an idea of options once the shock dissipates can ease the burden on families as they face the next steps.

Ray Landis is the former advocacy manager for the AARP of Pennsylvania. His work appears biweekly on the Capital-Star’s Commentary Page. 

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