Edwin and Kathi Truster. Credit: http://www.pbs.org/wgbh/caringformomanddad/families/. All rights reserved.

Kathi Truster and her mother, Edna Hendel, were walking together when Kathi noticed her mother kept tripping over her left foot. It was the first sign that Kathi’s life was about to change.

Edna’s weakened foot signaled the onset of Parkinson’s disease that, over the next two decades, left her bed-bound and in need of round-the-clock care. Kathi and her father, Edwin, provided most of her care at first, but, as he aged, Ed’s health also declined.

More than anything else, Edna and Ed wanted to stay in their farmhouse near Middletown, Ohio, about 30 miles northwest of Cincinnati. Both had grown up poor, but they had made a new life for their family, with Ed farming all day and working the second shift at General Motors until he retired.

Kathi, a teacher, took over as the primary caregiver for both parents. Over time, she brought in help from other family members, a hospice nurse, and home health aides and Meals on Wheels from a program funded by a tax levy in her county. Keeping her parents in their home required increasing resources and coordination as their health declined.

“This is a full time job and I already have a job and family,” said Kathi in a 2012 interview for a Council on Aging annual report. “It’s a leaky bucket and every day there’s another leak. My father has said, ‘Don’t put us away, please, honey.’ That’s what he calls going to a nursing home—putting us away. It brings tears to my eyes.”

With much help, they remained at home until they died—Edna in 2012 and Edwin two years later. Edwin died shortly after he and Kathi were filmed for a PBS documentary called Caring for Mom & Dad, which premiered in May of 2015. Filmmaker Larkin McPhee was drawn to Cincinnati because she had heard about the Elderly Services Program that’s managed there by Council on Aging of Southwestern Ohio. It’s an important example because it’s funded by property tax levies that provide services to help frail seniors remain in their homes in a political context where taxes are a hot-button issue—a recognition that elder care is a collective responsibility.

Kathi’s story is one of eight in the film which tell of the unprecedented challenges facing the United States as a result of an aging population.  American society is simply not prepared to meet the challenge of the so-called “age wave” either individually, or in communities, or as a nation.  Concerns such as lack of affordable housing and senior-friendly transportation are a big part of the picture, but one of the greatest problems is an unsustainable system of long-term care.

More than 12 million Americans of all ages with functional impairments rely on long-term help with basic daily activities via services delivered in their homes, in community settings or in institutions. That number is expected to double by 2050 according to research cited in the September 2013 report of the federal Commission on Long-term Care.  

A huge part of this challenge comes from the increasing incidence of cognitive impairment as people live longer lives. Alzheimer’s disease—the most common form of dementia—almost always results in a need for long-term care. The disease affects 42.5 percent of Americans over the age of 85 according to the Alzheimer’s Association, and places enormous demands on families and caregivers. By 2050, the number of new cases of Alzheimer’s is projected to more than double.

Against this background, communities around the country are engaged in efforts to prepare for their aging populations, but the pace of improvement in systems and services is alarmingly slow. The heart of the problem is a dysfunctional system of paying for long-term care. Programs and resources also vary widely from place to place, so when it comes to aging, where you live really matters, particularly if you can’t afford to pay for care yourself and must rely on community resources or entirely upon family members, who may or may not be in a position to meet your needs. Long-term care is expensive and complex and yet people tend to deny they will need it—and so fail to plan for it.  

For most people, in-home care is the best and first choice. Home is where people want to be, and it’s the most cost-effective place to provide care whatever the source of payment. While care can be substandard regardless of the setting, nursing homes have a history of uneven quality and scandals. Even so, most states allocate a greater share of their Medicaid long-term care dollars to nursing homes than to services in homes and communities—up to 80 percent in some states. Not only is this wasteful of public funds, but it denies people the right to receive care in the setting that’s most appropriate to their needs.

There are only a limited number of ways to pay for long-term care services, and all have their shortcomings. Medicare covers a limited amount of skilled care at home or in a nursing facility after discharge from hospital, but it doesn’t pay for the so-called ‘unskilled’ services that most people need like home-delivered meals or help with housekeeping and transportation. Medicaid is for the poor, or for those who become poor as long-term care costs consume their savings. Long-term care insurance is expensive, so only about ten percent of Americans over the age of 50 have policies according to AARP. That leaves people to pay out-of-pocket at around $22 an hour for a home health aide. And that’s where taxpayers enter the equation.

In a handful of states like Ohio, Nebraska and Kansas, expanded elder care programs are funded by taxpayers. Ohio has been using local property tax levies to fund senior services for more than 30 years. Starting through a referendum in one county in the early 1980s, these programs have now been adopted by voters in more than 70 of Ohio’s 88 counties. With local funding and decision-making, communities can design programs to suit their own needs.

Ohio’s levies vary widely in size, scope and the nature of services they support, but together, they generate more $139 million annually. That’s more than triple the amount Ohio receives in federal funds for state and community programs through Title III of the Older Americans Act.  Ohio’s levies don’t meet 100 percent of needs and there are eligibility limitations and some waiting lists, but they do provide resources for families that don’t exist in most other states.

In southwestern Ohio for example, the levy-funded ‘Elderly Services Program’ helps frail elders of modest means to stay in their homes when they don’t qualify for Medicaid and can’t afford to pay for in-home care on their own. The typical beneficiary might be an 80-year-old woman, living alone, on an annual income of about $21,000.

For all its advantages, though, the Elderly Services Program only supplements what family members do. Caregivers like Kathi Truster are, and will remain, the backbone of the long-term care system, and an estimated 65 percent of Americans with long-term care needs rely exclusively on help from family and friends. In fact as of 2009, more than 42 million people were providing unpaid care for an adult at an estimated value of $450 billion according to the federal Commission on Long-term Care. This is more than twice the amount that is spent on paid or ‘formal’ care-giving.

For these family caregivers, the cost can be great, not only financially, but also to their physical and mental health and to the prospects for their own careers and retirement plans. And although more men are sharing responsibility, the burden still falls disproportionally on women.  Perhaps for that reason, the value of care-giving to the economy and health care system is not fully recognized.

One response to these statistics is to say that care-giving is a straightforward duty which doesn’t require or merit support from taxpayers. But care-giving today is nothing like it was years ago when people died from conditions they now live with as a result of advances in medical technology, though often in a debilitated state. The downside of increasing longevity is that people are outliving their health. While intensive caregiving at one time may have lasted a year or two, today it can continue for many years and involve stressful medical and nursing tasks that family members must do because health insurance doesn’t pay for them. Most Americans aren’t saving enough for retirement, let alone their needs for long-term care.

So as the population ages, it will be increasingly important for communities to provide more support to family caregivers. We can’t simply increase longevity as a societal value without also sharing responsibility for its consequences. Ohio’s tax levies are one approach that communities can emulate, and there are many other initiatives to be explored and expanded such as age-friendly public transportation systems and more affordable, accessible housing with care available on-site.

Expanding these approaches is essential, but all of them require both a personal and a political revolution in our attitudes to care-giving. The question is—who cares?