Gary Barg worked with his mom throughout most of her 80s. She would drive to the Fort Lauderdale office of his company, Caregiver Media Group.
She had a stroke in July and Barg found himself practicing what he had built his business around for more than a quarter of a century — caring for aging loved ones.
"We had to learn how to do the things that we were teaching and teaching caregivers for 26 years," he said.
Those included partnering with family members, navigating the home health care industry, interviewing agencies and aides, and discussing the financial obligations that come when an aging loved one needs home health care.
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It is a lot, and a lot of people want to stay home as they age — almost 90% according to a survey from the Associated Press and nonpartisan research organization NORC at the University of Chicago.
The demand for home health care for aging loved ones is growing as the population ages and COVID-19 has been deadly in nursing homes — driving people to look for ways to age at home if they can. Meantime, the supply of home health workers is being squeezed by limited wages and higher pay in other industries.
"I think caregiving makes strong families stronger and challenges challenging families," said Barg.
Recommendations and technology help
Before home health care is needed, Barg recommended using a geriatric care manager to help assess an aging family member. He also pointed to using technology to help keep an eye for protection, such as internet-enabled devices an adult can access remotely.
When a family is ready to bring in an aide, Barg advised to ensure the agency conducts background checks on its workers and provides around-the-clock customer service.
Barg, his brother, and sister were able to help their mom stay in her home after her stroke. Then they decided closer care in a facility was better for her, making the transition from at-home care to long-term care.
Paying for care
Heather Smothers' household in Key West includes her husband, 2-year-old daughter, mother in-law and her 86-year-old grandfather. He is a fifth generation Conch according to Smothers.
"He's into butterflies and botany, and he loves planting his yard. It looks like a jungle," she said.
He has a home health care aide visit in the morning to help with his breakfast and his medicine. Smothers said it costs about $50 an hour. If an aide visits in the afternoon, the annual cost would be about $30,000.
"It's a little bit pricey to have that service, but in the long run, I feel like it's worth it. And he's lucky enough to have the finances available to afford that," she said.
Smothers said he pays out-of-pocket now for the help, but he had insurance.
"It eventually ran out," she said.
Home health care insurance "isn't the most common thing" according to elder care attorney Steve Dunn. And it has gotten a lot more expensive as people are living longer and services are getting more expensive.
"Premiums have actually soared over the last several years because the claim experience is much greater than what the insurance companies anticipated when they began to underwrite the policies. So premiums are surging right now," he said.
Dunn pivoted his professional legal career to elder care after the personal experience of caring for his father, more than a decade ago. Dunn said he sued his father's home health insurance carrier after it denied a claim. He eventually won the case and decided to dedicate his legal practice almost exclusively to elder care insurance.
His father was a World War II veteran who was the youngest in a family of eight children. Dunn said he used the GI Bill to go to college and law school.
"He pulled himself out of poverty and helped pull the rest of his family out of poverty. He was an amazing, amazing person, and I'm in long term care [work], and all the things that I'm doing now, because of my father. I gave him all the credit," Dunn said.
Most home health care is paid through Medicaid, the state-federal government health care program. And the program sets maximum fees for aides. In 2021, the maximum reimbursed rate for an unskilled home health aide visit in Florida is $17.46 an hour, according to a schedule published by the Agency for Health Care Administration.
There is explosive demand for the work. Between 2010 and 2020, the number of home health aide jobs jumped 60%.
However, during the same decade, the average hourly wage for the workers increased less than 2%. In 2020, the home health aides in Florida were making 22 cents an hour more on average than what they made 10 years earlier.
"Unlike other sectors, in the long-term care sector, the regular sort of rules around supply and demand and the relationship to wages don't necessarily apply," said Stephen McCall, data and policy analyst at PHI. "While a place like McDonald's can adjust prices or dip into profits to increase their wages in a tight labor market, home care providers are having to go to the Legislature every year."
Home health care employees are overwhelmingly female. About half are Black or Hispanic. And over half are older than 45 years old themselves.
Low pay, competitive wages from other industries, sometimes strenuous working conditions, and aging of the home health care workforce itself will continue putting pressure on the imbalance between demand for the work and the supply of employees.
"By 2035, we're expected to have what amounts to a catastrophic shortage of [registered nurses]," said Kyle Simon, director of government affairs for the Home Care Association of Florida, a trade group representing about a third of licensed home health care agencies in the state. "The urgency of this couldn't be more overstated."