“The vast majority of Americans want to age in their home and community, spending their twilight years in a familiar and comfortable setting. But the choice is not always their own.
The US long-term care system — such as it is — is broken. Hundreds of thousands of Americans are on waiting lists for home-based care. More than 40 million people report that they have cared for a loved one over 50 without any pay in the last year. The United States ranks near the bottom of developed economies in the number of older adults who receive long-term care at home. Meanwhile, America’s nursing homes are staffed by overwhelmed and underpaid workers, and for-profit takeovers of those facilities have led to worse care for patients.
Covid-19 has made this long-term care crisis impossible to ignore. More than 130,000 nursing home residents have died in the pandemic, accounting for nearly one in four US deaths. Residents of large institutions died at higher rates than those who live in the community.
In America, aging people who need care — in a nursing facility or at home — either must be wealthy enough to pay for it themselves or must deplete their income and assets enough that they qualify for Medicaid. Almost by accident, the health insurance program for low-income Americans has become the main payer for nursing home and home-based care. Experts describe long-term care in the US with a sense of disbelief.
“If you were starting from scratch, you would never design a system this way,” David Grabowski, a Harvard professor who studies the economics of long-term care, told me.
Tricia Neuman, who studies long-term care at the Kaiser Family Foundation, put it even more baldly: “We do not have a system of long-term care in our country.”
America has been struggling for decades to figure out a balance between having people age in long-term care facilities and age at home. President Joe Biden has proposed a massive infusion of federal spending on home-based care. Experts say it should start to address these structural problems — but it’s only a start.”
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“More than three in four people over the age of 50 said in a 2018 AARP survey they want to stay in their community as long they can. But fewer than half thought that would be possible — and many of them may end up being right, as the long waiting lists for home- and community-based services attest. As of February 2020, more than 820,000 Americans were stuck on their state Medicaid program’s waiting list for home- and community-based services, according to the Kaiser Family Foundation, and their average wait time is longer than three years.
Even for those lucky enough to be able to afford in-home care, the US long-term care system hasn’t done them any favors. Virginia Veliz, a 70-year-old in Santa Clarita, California, has been coordinating care for her 90-year-old mother, who has Lewy body dementia and Parkison’s disease, for the past five years.
“You really have to treat it like a job,” she said.”
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“There are some people for whom institutional care makes sense — those with severe cognitive decline, for example. Others might simply prefer to live in a nursing home with other people instead of living alone at home.
But the idea is that it should be the patient’s choice. The US still has not found a way to put that decision entirely in the patient’s hands.”
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“Prioritizing home-based care appears to be the preferred solution for both patients and policymakers. But it will cost money. The Netherlands, Norway, and Sweden are considered global leaders in providing community-based services, but they also spend a substantially higher share of their GDPs on long-term care (around 3 percent) than the US (0.5 percent).”
https://www.vox.com/policy-and-politics/22375360/nursing-home-care-in-home-covid-19