Real Problems, Real Solutions to the Long-Term Care Crisis

How does Colorado make this work? It has set up the program as a form of insurance; the premium is initially set at 0.9 percent of wages, split 50/50 between worker and employer and paid through a payroll deduction. That means a person earning the average salary of $63,000 in Colorado would pay $5.45 per week.

“The reality of this social insurance program is it helps small businesses” because it’s a statewide pool, says Jared Make, vice president of A Better Balance, a nonprofit organization that focuses on care and family work policy issues. “It allows them to compete with the Googles — who are offering paid leave to attract and retain talent and workers.”

Make says the state laws have been “a clear success” and that Congress “should pass a federal, comprehensive” leave program modeled on the state laws. “We’re way behind as a country,” he says, “but we’re starting to see some of the conversation shift.”

Challenge No. 3: The high financial cost to families of caregiving

Caregiving can be costly — for the recipient, for the caregiver, for the economy. AARP research found that more than three-quarters of family caregivers spend their own money on caregiving. In 2021, the annual average was $7,242. Caring for someone with dementia boosts that figure to nearly $9,000. And then there’s the cost of time. A 2019 study put the estimated economic value of unpaid caregiver work in 2017 at $470 billion.

There are other economic ripple effects to caregiving. More than 75 percent of people age 50-plus who retired early because of family caregiving responsibilities would have stayed in the workforce longer if they had access to better financial support or work support, a recent AARP study found.

“My income took a hit,” says Eisele, the podcaster. “All my savings for retirement took a hit. You don’t set out to do this, thinking it’s going to go on for three years.”

If you’re caring for someone and trying to hold down a job, you might think of hiring in-home help. That, too, is costly. In 2021, you could expect to pay $5,148 a month — the national median — for a private home health aide, according to Genworth, which tracks the cost of care. If the care recipient is able, a less expensive option is to use an adult day program, with a monthly median cost of $1,690, as of 2021.

Medicare in most cases does not pay for in-home care for basic services. “One of the greatest misconceptions people have is that there will be a safety net to catch them. And there isn’t,” says Robert Espinoza, vice president of policy at PHI, an advocacy group for the direct care workforce, which includes home health aides.

Long-term care insurance policies were once thought to be a solution, but insurers found they had underestimated how much they would have to pay in claims and had miscalculated returns on investments because of low interest rates. This prompted many companies to stop selling the policies. Today, policies are still available, but they aren’t very popular. Only some 49,000 new policies were sold in 2020, according to the American Association for Long-Term Care Insurance. Cost might be one reason. A single 55-year-old male will pay $950 annually for a premium with an initial benefit amount of $165,000. A single 55-year-old female will pay $1,500 for the same policy.

“It’s a product that is not inexpensive,” says Jesse Slome, director of the American Association for Long-Term Care Insurance. “And there’s no sense of immediacy that you have to purchase it — unlike other insurance. You can’t buy a house and have a mortgage without homeowner’s insurance.” He adds: “There’s a certain type of person that buys it. They can afford it and they plan. Not everybody is a planner. And most importantly, you have to be in good health when you apply for this coverage. We have a nation that’s not in particularly good health.”

Some financial help may be on the horizon: the Credit for Caring Act, introduced in Congress in May 2021. The bipartisan, AARP-supported bill would provide up to $5,000 in federal tax credits for eligible working family caregivers. Qualified expenses include respite care, home modifications and hiring home care aides, as well as assistive technologies and transportation.

Another option can be found in certain Medicare Advantage plans that offer coverage for more services, including home health aides to help with caregiving. In 2018, the Centers for Medicare & Medicaid Services (CMS) expanded the scope of “primarily health related” supplemental benefits for those private plans. Now some plans may offer gym memberships, transportation to doctor’s appointments, healthier food options and grab bars in bathrooms, and may even cover the cost for a person with chronic asthma to have their carpets deep-cleaned to help control the condition.

Challenge No. 4: A shortage of well-trained, reliable caregivers for hire

Paul McCartney famously wondered if someone would feed him when he turned 64. That question, for many older Americans, has become a very legitimate concern. As the number of older adults increases, the demand for home health and personal care aides is projected to grow by 33 percent from 2020 to 2030, according to the U.S. Bureau of Labor Statistics. That rate of increase is much higher than the average for all occupations.

“We’ve been warning of a workforce shortage for years,” Espinoza says. According to the Bureau of Labor Statistics, in 2021 the mean hourly wage for home health and personal care aides was $14.07, and the mean annual wage was $29,260.

In every state and the District of Columbia, the direct care worker median wage is lower than the median wage for other occupations that have similar entry-level requirements, according to a 2020 PHI report. That includes janitors, retail clerks and customer service representatives. “In many states, McDonald’s and Macy’s will swoop these candidates up with easier entry points and training,” Espinoza says. “We need to figure out the compensation piece.”

Some states are finding creative ways to boost recruitment and retention in the paid caregiver workforce.

In Wisconsin, the WisCaregiver Careers program was launched in 2018 as a public-private partnership between the state Department of Health and nursing home provider associations, generating interest from 9,000 recruits for 3,000 nursing home aide slots through marketing, free training and a $500 retention bonus. “We were competing against the big-box stores and coffee shops, so it was really gratifying to get that much interest,” says Kevin Coughlin, policy initiatives adviser for Wisconsin’s Department of Health. A new iteration of the program about to get underway will expand it to include jobs as home health care workers, not just positions in nursing homes.

In New Mexico, the Encuentro Home Health Aide program (HHA), is focused on creating career pathways for immigrants who speak Spanish to enter into eldercare to serve the needs of Spanish-speaking communities. The emphasis is on HHAs to be independent contractors, not signed with an agency, allowing the care worker to make a higher wage. In 2021, both part-time and full-time Encuentro graduates “were making an average of $17.50 an hour,” says Mayte Lopez, home health aide training specialist for Encuentro. “Those HHAs at an agency were making an average of $11.50.”

Challenge No. 5: Lack of transportation options

One of the biggest logistical headaches for both caregiver and care recipient is the act of transporting loved ones to a destination — to the store, to medical appointments, to treatment centers, to visit with friends. According to a 2018 National Aging and Disability Transportation Center survey, about 40 percent of caregivers spend at least five hours a week providing or arranging transportation. And if a ride can’t be arranged? One older study published in the Transportation Research Record: Journal of the Transportation Research Board found that about 3.6 million people in the United States in a given year did not get medical care because of transportation issues. Not being able to get out also adds to a sense of isolation, which has been associated with increased risk of serious health conditions.

Community transportation programs are available; one such program is Dial-A-Ride, usually funded by a local government and made available for passengers 65 and older or for those who qualify under the Americans With Disabilities Act. Volunteer transportation programs, such as Shepherd’s Centers of America, are available; Shepherd’s dispatches volunteer drivers from more than 55 affiliate centers across the country each day.

Medicare will typically cover only emergency medical trips, such as those requiring an ambulance, except in certain chronic and debilitating cases, so relying on Medicare isn’t the solution. But because of changes that took effect a few years ago, more Medicare Advantage plans began offering transportation benefits; 2020 saw an increase of 25 percent from the previous year, according to the Medical Transportation Access Coalition.

Denver Health was one of the first hospitals to partner with a ride-booking company. In 2017, after an elderly patient had been waiting for several hours for transportation that never came, hospital administrators knew that something needed to be done. A partnership with Lyft made a difference, says Amy Friedman, Denver Health’s chief experience officer.

“We utilize them every day,” says Friedman, adding that the hospital provided 5,800 rides — “almost 16 a day” — in 2021. She notes that the program is funded by the Denver Health Foundation, a separate philanthropic organization, and that it is only for patients who have no other option. “It needs to be a last resort.”

San Antonio–based SafeRide Health has a partnership with Lyft. SafeRide makes software that will make arranging such rides even easier. “We want to make sure we can make transportation as accessible as possible in one click,” says Andy Auerbach, chief revenue officer at SafeRide Health, saying that when a patient makes an appointment, the next question should be, “Do you need a ride? Great. One button.” 

Challenge No. 6: Inequities exist within the system, causing disparities in the caregiving world

Think family caregiving is hard? It’s particularly difficult in communities of color, where there’s less access to health care, more people hold hourly wage jobs, people often do not trust government officials who may try to provide help, and housing may be substandard. “These issues are really baked into the system,” says Edem Hado, policy and research manager for the AARP Public Policy Institute.

A 2021 analysis by the Commonwealth Fund, a private foundation dedicated to health care issues, found that health care systems in every state are “failing” many people of color. Even in states that were found to be “high-performing,” many people of color received “much worse” health care than white people.

The National Institute on Aging has laid out a “Strategic Directions for Research, 2020–2025” plan; one of its goals is to “understand health disparities related to aging and develop strategies to improve the health status of older adults in diverse populations.”

“Politicians will say, ‘Show me the data,’ ” Hado says. “If we’re not collecting it in a way that reflects different groups, where’s the support there?”

But Jan Mutchler, director of the Gerontology Institute at the University of Massachusetts Boston, says the issue needs to be addressed through an even broader lens: Building up vulnerable communities in general will also improve caregiving. “Policies going all the way back in the life course to maternal care, day care, preschool — everything that shapes accumulation of health and human capital are relevant in thinking about what has to happen to establish a more equitable old age.”