Carolyn Villers, executive director of the Massachusetts Senior Action Council, hears many stories from members who gave up income to care for elderly spouses. One man worked at General Electric and quit to take care of his ailing wife. With no income and a lower pension because he retired early, he moved into subsidized housing and, after his wife died, spent his retirement in poverty. Another member worked professionally as a personal care attendant, but could not be paid to care for his spouse.
What makes such tales especially heartbreaking is that those spouses are not just caring for their loved ones — they are helping everyone by reducing the overall demand for commercial care. Massachusetts is confronting a burgeoning crisis with an aging population and a lack of workers to care for older adults. People who provide care that may keep an ailing spouse out of a nursing home, or reduce the need for other services, ought to be compensated. Yet while MassHealth allows children, siblings, and other relatives to be paid caregivers for their loved ones, it makes one glaring exception: spouses.
The spousal exception is rooted in the idea of a “legally responsible” relative — the notion that spouses have a duty to care for one another “in sickness and in health,” just as parents have a legal obligation to care for their children. But the Centers for Medicare and Medicaid Services changed the rules in 2004 to let spouses be paid caregivers and, since then, states have gradually loosened their restrictions.
Today, according to AARP, around 23 states let spouses be paid as caregivers, many of which newly adopted that policy during the pandemic. The US Department of Veterans Affairs also lets spouses receive caregiver pay.
(Most long-term care insurance policies that people purchase privately do not pay for services provided by family members.)
Bills sponsored by state Senator Jo Comerford, a Northampton Democrat, and Representative Adam Scanlon, a North Attleborough Democrat, would require Massachusetts to apply for permission from the federal government to let MassHealth reimburse spouses for providing home-based care. Anyone receiving or providing care from a spouse would have to go through the same eligibility checks that apply to anyone in the MassHealth program related to income and health needs.
There are compelling human reasons to allow a spouse to be a paid caregiver. If a person feels most comfortable receiving their care from a willing spouse, money should not be the barrier. If someone leaves their job to care for a spouse, they should not face financial ruin. Having a family caregiver alleviates the frequent turnover among hired home health aides.
Jessica Costantino, advocacy director for AARP Massachusetts, said there are 780,000 family caregivers in Massachusetts who provide $15 billion annually in unpaid care. Caregivers spend on average $7,200 out of pocket each year caring for loved ones, according to a national report by Carewell, a company that sells caregiving products. “These people are doing it because … they love the person, but it’s really hard,” Costantino said. “They deserve support, and we should be building in systems that help them to do this.”
From a societal perspective, Massachusetts has a dearth of home health care workers, and adding more family caregivers could free up agency workers. An April 2023 report by the Executive Office of Elder Affairs found nearly 4,400 people statewide waiting to be matched with a home care worker. The policy could also help keep people out of nursing homes. Care is more expensive in nursing homes than in the community, and nursing homes are also facing worker shortages.
The most significant concern that has been raised about the policy is financial. A 2018 study by MassHealth estimated that the cost would be between $40 million and $70 million, of which $20 million to $35 million would be paid by the state. The report raised the potential for a “woodwork effect,” in which people who are not enrolled in MassHealth’s personal care services — including those whose spouses are now providing care without pay — would enroll to get the benefit, adding 1,400 to 2,400 new users of personal care services.
But advocates for the bill suggest the cost will be offset if fewer people enter nursing homes. A 2012 study in The Gerontologist, an academic journal on aging, based on California data found that Medicaid expenditures tended to be lower among those with paid family caregivers compared to those with nonrelative caregivers, and those with paid family caregivers had lower rates of hospital and nursing home admissions.
The bill has been introduced in the Legislature for years unsuccessfully. But the health care labor shortage may finally spur action. Comerford said not a week goes by that she does not get a call from a constituent about someone affected by related issues, whether economic insecurity for seniors or a shortage of nursing home beds. “The glaring reality is nieces, nephews, cousins, daughters, sons, aunts, uncles, even divorced spouses can be paid,” Comerford said. “This is an omission here, and shame on us for letting this happen.”
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