The realities of long-term care in America

A Laurel to PBS’s Need To Know

Last week’s fiscal cliff deal hammered the last nail in the coffin of the CLASS Act, a part of president Obama’s health reform law that would have allowed Americans to begin prepaying for their long-term care. In reality, it was dead anyway when the Obama Administration determined the CLASS Act was not technically workable and announced in the fall of 2011that it would not go forward.

The CLASS Act may be gone, but the need it tried to address remains, and PBS’s Need to Know program that aired last Friday deserves a CJR Laurel for showing how big the problem really is. It was one of the most compelling and informative long-term care pieces I’ve seen.

The program, narrated by Scott Simon and Karla Murthy, expertly wove together a discussion of long-term care policy with the nuts and bolts of one family’s experiences giving care to a loved one. It demonstrated the human and financial cost of providing long-term care, a looming problem the nation has yet to acknowledge. Consider how many words have been written in recent months about the challenge of Social Security and Medicare spending, and how few have discussed how long-term care for an aging population might fit with the Beltway’s budget-ax mentality. PBS reported that about 70 percent of those people over age 65 will need long-term care, which could include help with bathing, dressing, and eating. People are living longer, but millions will live with debilitating conditions that Murthy reported will “need more long-term care than ever, and that care is going to come with a huge cost that most aren’t able to pay.”

Need to Know told of the Feldman family and how 94-year-old Mary had been cared for the last 10 years by her son Lynn and his partner Ned, both in their 60s, an age when many find themselves caring for parents in their 80s and 90s. The family has spent all of her $100,000 in savings on her care, so she now qualifies for California’s Medicaid program. The state pays for about 45 hours of home care each week to help out Lynn and Ned.

Caregiving is tough work, and PBS offered a compassionate portrayal of both Lynn and Ned and the isolation that Ned, the stay-at-home caregiver, has experienced. “I was isolated. And I mean very, very lonely. And I never left the house,” he told Murthy. He became angry with Lynn, who got to talk to people at work. People who are taking care of loved ones at home “forget to take care of themselves and love themselves,” Lynn told PBS. That’s a common problem that family caregivers face.

Murthy also interviewed Mary’s geriatrician at UCLA Medical Center, Dr. Bruce Ferrell, who has followed her decline over ten years into the depths of Alzheimer’s. She is lucky to have a specialist in geriatrics—not a popular calling for young doctors these days, largely because it doesn’t pay as well as other medical specialties. Ferrell told Murthy that caring for a loved one is “one of the most common causes of loss of wealth for our families and our children.”

The program explored options for financing long-term care and laid out some stark facts. The government estimates that nursing home costs average around $72,000 a year and that people will need an average of three years of care. So if all that care is in a nursing facility, some families will shell out more than $200,000. Elderly people with income and assets will have to spend most of it on care before Medicaid will pay the bill. That’s what Mary Feldman did. Those without resources will qualify for Medicaid more quickly. Need to Know also debunked the widespread misconception among the public that Medicare pays for long-term care. Medicare was not designed to cover nursing home costs, and pays only for 100 days of care in a skilled nursing facility, and not for help with bathing and dressing.

One of the program’s most useful contributions was the exploration of long-term care insurance as a solution. Scott Simon interviewed Robyn Stone, a long-term care expert who worked in the Clinton White House and is now executive director of the Leading Age: Center for Applied Research. The market for long-term care insurance has not grown substantially, Stone said. “It’s not a solution for all of us in the United States.”

Why not? It’s too expensive for most families. And people with certain health conditions, like dementia, wouldn’t qualify anyway.

Ned and Lynn are paying about $7,000 for long-term care policies for both of them. Stone pointed out that while the top one percent is rich enough to self-insure, people with low and moderate incomes couldn’t afford the premiums. Those in the upper middle class should think carefully how they want to use their assets, Stone advised.

In case you think covering long-term care is depressing, the program ended on an upbeat note, and it showed journalists how they might give a more positive spin to this dilemma. It reported on an innovative government program in Rhode Island that pays family members to take care of their loved ones, meanwhile saving money for the state. Reporters wanting to follow Need to Know’s lead might investigate special government programs in their states.

The piece is a timely contribution that comes at a moment when the prevailing narrative about the elderly is a narrow one, which the press can help expand.

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Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for The Second Opinion, CJR's healthcare desk, which is part of our United States Project on the coverage of politics and policy. She also blogs for Health News Review. Follow her on Twitter @Trudy_Lieberman. Tags: , , ,