“Mom is getting older,” my brother said to me as we chatted on the phone. “We need to prepare.”
He started offering ideas.
“Should we make a fund for her care? There’s insurance, right?”
“You mean long-term care insurance?” I responded. “That’s a joke.”
“OK. Let’s save up. You, me, my wife, and our two siblings could contribute $100 per month. That’s $6,000 a year, a realistic start.”
But is it?
The median cost of living in a semi-private room in a nursing home for one year is $93,000. Hiring a home health aide for 40 hours a week costs $55,000. Assisted living costs $52,000.
Our mom was 70 years old. How much time would we have to save before she needed long-term care? Five years? Ten? At that point we’d only have $30,000 to $60,000 in savings.
What about our dad, who will be turning 70 in three years? What about my future spouse’s parents?
We were ahead of most families that fail to have these conversations before the need for care arises, yet we were nowhere near a solution.
To have banked enough money for our parents’ care, we should have started more than 30 years ago — but we were barely out of our mother’s womb.
Plan for long-term care, they say. But how? Even as a gerontological nurse practitioner and a researcher focused on improving delivery of this essential service for older adults, I was lost.
Nearly 70% of adults 65 years and over will need long-term care. That means assistance with activities of daily living like getting dressed, preparing and eating meals, bathing, and more. Nursing homes, adult day services, assisted living, home health aides, and informal caregivers can provide this help. Yet one-quarter of adults fail to believe they will need extended care and so don’t plan for it.
When long-term care is needed, many older adults and their families are hit with the realization that Medicare does not cover it. Anything beyond rehabilitation or 100 days of nursing home care is the older adult’s responsibility. A long-term care system exists only for the impoverished (Medicaid) and the wealthy (self-pay). There is no robust system for the middle-income people who make up half of the U.S. population, and there are threats to the sustainability of Medicaid, which currently covers 62% of all nursing home residents.
These issues are framed as a failure to plan, but there is little support for planning, and planning doesn’t solve many of the problems. Without a long-term care infrastructure, most Americans face exorbitant costs, undue burdens, and threats to their well-being in older adulthood.
Concerns about long-term care have been complicated by the Covid-19 pandemic, which has disproportionately affected older adults, especially in long-term care facilities. Families have weighed their options: Should mom be in a nursing home, with increased risks for isolation, infection with SARS-CoV-2, the virus that causes Covid-19, and death? (Long-term care facilities currently face decreased occupancy and insufficient funding.) Or should she be at home with the accompanying family, work, health, and safety challenges?
Government funding is the most obvious solution to building a long-term care system and reshaping and supporting planning for long-term care, but efforts in this area have failed. For example, Maine proposed a universal home care initiative in 2018 to provide no-cost home care, but it was voted down due to fears that taxing those who made more than $128,000 a year (especially physicians) would cause people to relocate to other states. In 2011, the federal Community Living Assistance Services and Supports Act proposed to provide up to $50 a day in cash benefits to help families pay for in-home assistance or nursing home care, but it was plagued with unreasonable premiums and uncertain sustainability.
The first state social insurance program for long-term care was recently initiated in Washington. Beginning in 2022, all of the state’s residents will pay into a long-term care trust fund $5.80 for every $1,000 of their income. This program provides a glimpse of hope, although the first payout for an individual’s long-term care won’t occur for 10 years after paying into the trust — three years after a catastrophic disabling event — and has a lifetime cap of $36,500.
Long-term care needs to be on the new administration’s agenda. Efforts that increase access to long-term care financing, resources, services, and supports are needed at all levels: local, state, federal and for all socioeconomic groups. No family should shoulder the burden of long-term care planning alone.
My brother and I will work together to make a plan, and we are fortunate to be having these conversations earlier and with more resources than some families. But for all families, long-term care needs long-term solutions.
Jasmine Travers is a gerontological nurse practitioner and an assistant professor of nursing at New York University Rory Meyers College of Nursing.