Mary Altaffer/AP Photo
Nurse practitioner Amber Vitale talks to Arthur Katz at his home in Bellmore, New York, in May.
Eugene and Tina Jarrett reached a breaking point in the spring. Following several devastating falls that have hampered his mobility, Eugene, 66, reluctantly moved into a nursing home in June for the fourth time in two years.
The final decision came following Tina’s constant fight with home care service providers to maintain a consistent and daily schedule of caregivers. The couple, who live in Northumberland County, Pennsylvania, were promised 24-hour care by the service provider, paid for by Medicaid. But work schedules for their caregivers would unexpectedly shift without notification; they also would call at the last minute to say they weren’t coming; and some even quit—all of which left Tina in the lurch. She often had to take off from work, which is not a practical option considering she’s the main breadwinner.
“We have no children; we have no extended family that can help us. It is just he and I,” said Tina, 54, who suffered a wrist injury in 2019 while caring for her husband. (Tina had wrist surgery this July.) “And when you’re stuck in that kind of situation, you’re relying on the caregivers. That is your lifeline.”
By 2030, the demand for home care services will have boomed by 46 percent, requiring the creation of one million additional home care jobs.
Help for families like Tina and Eugene may be on the way. The $3.5 trillion reconciliation package put forward by Senate Democrats will include investments in the home and community-based services program on which the Jarretts and so many other families rely.
Nationwide, there is a shortage of home care workers, and the employment crunch potentially will become even worse as our nation ages. One in five Americans are projected to be 65 years old or older by 2030, outnumbering children for the first time in our nation’s history. Seven in ten will eventually require long-term care.
By then, the demand for home care services alone will have boomed by 46 percent, requiring the creation of one million additional home care jobs, according to a 2020 report from the National Domestic Workers Alliance (NDWA).
“We are seeing chronic worker shortages across the country, due in large part to low wages and a lack of benefits and support,” said Haeyoung Yoon, senior policy director for the NDWA. “This severely limits access to these services, while devaluing these essential workers.”
Raising wages for direct-care workers to $15 an hour or more has been found to pay for itself by reducing turnover, which results in better care. Direct-care workers are those who provide hands-on long-term care and personal assistance to the elderly and people living with disabilities or other chronic conditions.
More money for the program and particularly better wages for caregivers would help families like Tina and Gene’s. Less turnover and fewer shortages would ensure that they always had access to the care they are entitled to. When Tina asked the agency for help when Gene’s usual caregiver wasn’t available, the home care agency insisted that it was her responsibility to have an alternate plan. “If I had a backup plan, I wouldn’t need the agency’s help,” said Tina. “He would be home.”
In recent weeks, Sen. Bob Casey (D-PA) and Senate Democrats have introduced the Better Care Better Jobs Act to address the issue, which has now, at least in part, been included in the reconciliation package. Among its main provisions, the bill would permanently increase the Federal Medical Assistance Percentage (FMAP) for states by 10 percent. As one condition for receiving this federal Medicaid match, states would have to address payment rates for home and community-based services to promote recruitment and retention of direct-care workers. Also, this includes passing rate increases through to direct-care workers in order to boost their wages.
“This legislation is critical to advancing equity, spurring economic recovery and improving quality of life for older adults and people with disabilities,” said Sen. Casey in a statement.
States Taking Action
Some states are trying to get ahead of the problem and experimenting with their own programs to address the impending care shortage. Washington state has an extensive history of delivering an array of long-term services and supports, spending 73 percent of its long-term services and supports (LTSS) Medicaid budget on home health and personal care. That compares with 59 percent on a national average. The state’s LTSS system also currently ranks second in overall performance within the nation, based on the fourth edition of the LTSS State Scorecard.
Still, the shortage of care workers remains a concern in Washington, even though the base pay for home care aides (HCAs) is above minimum wage at nearly $17 an hour including benefits. The state estimates that nearly 77,000 additional HCAs will be needed to serve Medicaid consumers by 2030, according to the Washington State Plan on Aging. When the high turnover rate is taken into account, the number of additional HCAs needed surges to 125,000, the state report said.
Taking a Toll
Having Eugene live in a nursing home had never been an option for the Jarretts, even after he suffered his initial fall in June 2019. He was home, and Tina found him on the floor upon her return from work. “That’s when everything really started to escalate,” said Tina, adding that he stayed in a nursing home for up to six weeks.
He fell two other times during the latter part of 2019; and by December, he was diagnosed with hydrocephalus and had to have surgery to remove fluid on his brain. His initial stay was to be just two weeks for recovery and physical therapy, but that turned into months, partly due to the pandemic.
His current stay will depend on his ability to regain his strength and perform some of the basic activities of daily living. That includes eating, dressing, and getting in and out of a chair or bed.
“I’m not sure he’s going to be able to do it because he’s gone so far in terms of weakness,” Tina said, adding that he’s slipped into a depression during this time frame that’s affected his cognition and memory.
“We’re both dealing with depression, and just constantly fighting not to break down and just be strong for each other. It’s hard.”
Women Struggle the Most
Women like Tina have borne the emotional and financial brunt of the home and community-based caregiver shortage. Many are pushed out of the labor market to care for loved ones. A 2006 study showed that women who care for a parent over a two-year period decreased their work hours by 367 hours per year, or 41 percent, on average. What’s more, research shows that families forgo $28.9 billion a year in wages because caregiving responsibilities pull them out of the labor market.
Following eight years of caring for her mother, Janet Stecher, 68, delayed her retirement to recover her loss in income and boost her Social Security contributions. To cover the costs of care, she also applied for Medicaid on her mother’s behalf. “It took a huge toll,” said Stecher, who moved in to take care of her mother.
To alleviate the stress that came with providing the care, Stecher relied on family friends and acquaintances to support her mother’s caregiving needs. Yet she eventually was left with no choice but to move her mother, who had dementia, into a memory care residence. Care at the residence, however, presented Stecher with other issues, including the low number of direct-care workers to residents—a ratio of 1 to 9.
That imbalance was one of many reasons that led Stecher to move her mother into an adult family home where two caregivers were available for every five residents.
“Not Easy” Being a Caregiver
“Being a caregiver is not easy … it’s hard work,” said Aurora Castillo Garcia, 28, who took on the care of her mother-in-law as she battled cancer in early 2020. “It’s emotional, it’s physical, but it is also rewarding.”
Garcia, a single mother of two who lives in Moses Lake, Washington, first took on the task of supporting her mother-in-law as an unpaid caregiver. While caring for her, Garcia worked in retail, stocking produce for a large grocer, though she soon saw her hours reduced during the course of the year. She also was a seasonal delivery driver for a produce company. That was until she pursued training in caregiving through the SEIU 775 Benefits Group in early 2021. (SEIU 775 represents 45,000 long-term care workers in Washington and Montana.) Since the training to become a paid caregiver for her mother-in-law, the additional income and benefits she has received have helped to fill in a gap for her family.
The Bipartisan Policy Center and Morning Consult recently conducted a poll on the impact that caregiving has had on workers since the beginning of the COVID-19 pandemic. The poll of a national sample of 2,200 adults found that 66 percent of Black and Latinx caregivers said that family caregiving responsibilities impacted their ability to work, a level ten percentage points higher than it was for white caregivers.
Accordingly, investments in care infrastructure are particularly important to women of color, who face additional structural disadvantages in accessing quality jobs, including occupational segregation and discrimination.
Garcia now feels like she finally has found a career path and has begun the process to become a full-time certified home care aide to work for an outside agency and care for others in need. “Before, I felt like I didn’t have a skill, but now I have passion about what I do. This is where I belong.”
We will need more caregivers like Garcia as our nation ages. Making sure these workers have access to good jobs, with wages and benefits that let them stay in the field, will help families who struggle with finding caregivers for their loved ones. These investments in care infrastructure set forth by Democrats in Congress will help ensure that workers have access to jobs that create a path to the middle class, and that families have access to the care they need.
