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The cost of long-term care could squeeze millions of middle-income Americans into poverty

Coverage of aging is supported in part by AARP Arizona

Meet Laurie Struna.

She’s not a nurse or a trained caregiver. She’s 81-year-old Barbara Struna’s only daughter.

Barbara has Alzheimer’s disease. 

“We’re gonna do your high blood pressure meds first,” Laurie said as she handed her mom her medication.

“Got to remember you’re gonna swallow them, OK? You’re gonna swallow them with the liquid. Excellent. Okay, now we're gonna take the stuff for your knee,” she explained in a slow and gentle tone. 

Laurie handed her mom Naproxen. As Barbara took a sip of water, she kept an eye on her favorite soap opera, “The Young and the Restless.”

Laurie is 56 and works full-time. She’s also one of millions of unpaid family caregivers who is caring for a loved one at home.

“A lot of people are familiar with, for example, movie stars like Bruce Willis, and different people like that, and what he’s going through. But when you’re a middle-class person, there’s very little help and very little resources for you,” she said.

Aging is a Costly Proposition

The crux of this and likely every other caregiving story is the enormous cost of providing quality care either at home or in a long-term care facility. 

“There’s no way to prepare yourself,” Laurie said. “You’re a middle-class person, you're living paycheck to paycheck and trying to save money for your own retirement. You're looking at, do I have to sell my house to care for my parent?”

Throw in the emotional toll: “On a daily basis, you’re not quite sure today, this works; tomorrow, that doesn't work. You're having to zig and zag, everyday is like ‘Groundhog Day,’” she said.

Like a lot of family caregivers, Laurie has relied on a patchwork of informal help — like a friend’s daughter who would check in on Barbara and spend some time with her. But as the disease progresses, her mom requires more and more support. 

The good news: Struna’s mother now qualifies for 24 hours a week of in-home care from ALTCS, which stands for Arizona’s Long-Term Care System.

ALTCS provides services to Arizonans who either have a developmental disability or are elderly or physically disabled. But getting on ALTCS is tough. 

On average, only 22% of all ALTCS applications are approved, according to a spokesperson. 

“So we denied ALTCS coverage, August first 2023 and ongoing we took this action because you are not medically eligible,” Laurie reads from a letter she received from ALTCS last fall. Barbara qualified financially but failed to qualify medically.

That decision was later reversed. 

“I think one of the problems is that when ALTCS does their assessments, they do it over the phone,” Laurie said.

Prior to the pandemic, those pre-admission screenings were required to be done face-to-face. Now, most are done over the phone.

Dina Norwood is the managing attorney at Community Legal Services, a non-profit law firm that, among other things, helps families appeal an ALTCS denial. 

“It was so important for them to see your living space; to know what you’re dealing with as far as accessibility, as far as your caregivers, as far as the kind of help you need, to see it firsthand,” Norwood explained.

Norwood says a common denominator between her clients and what happened to Laurie Struna’s mom is the phone assessment. 

“We’ve had a number of clients or their caregivers say that the assessors spent five or 10 minutes on the phone interview,” she said.

And she says a lot of her clients clearly need help and should be eligible for ALTCS. 

A growing crisis with no solution

In the coming years, even more middle-income Arizonans will likely become acquainted with ALTCS.

“We know that upwards of 70% of the older population will, at some point in their lives, need paid long-term services and supports,” said Katie Smith Sloan.

She’s the president and CEO of Leading Age in Washington, D.C. Leading Age is a national association representing nonprofit long-term care providers across the U.S., including in Arizona.

And she’s very clear about this essential aspect of healthcare: “Care costs money, you know, full stop.”

Yet most Americans don’t earn what long-term care costs in a year.

“A private room in a nursing home can cost upwards of $100,000 a year,” Smith Sloan said. “Assisted living is anywhere from $50-to-$75,000 a year.” In Arizona, the costs are only slightly lower

And Medicare doesn’t pay any of it, leaving roughly 11 million middle-income older adults to pay out of pocket or impoverish themselves to qualify for Medicaid programs like ALTCS.

It’s one reason why Smith Sloan wrote a letter to Congress last December, calling on members to help create a comprehensive and equitable long-term care financing system. 

“I think the issue is really one of political will, and the lack thereof, of really pushing forward a concrete proposal right now,” Smith Sloan said. “There’s no real champion in Congress for this. … And right now, I think there’s no appetite for putting forward something that is going to be so costly.”

Yet for those without ample wealth or family to rely on, and no federal long-term care insurance, it’s unclear who, if anybody, will take care of them when the time comes. 

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Kathy Ritchie has 20 years of experience reporting and writing stories for national and local media outlets — nearly a decade of it has been spent in public media.