The response from the caregivers is clear.
In the US today, approximately 38 million people provide unpaid elder care. That number is likely to grow dramatically in the future as the number of people in need of care grows. One of the biggest challenges with unpaid care … is that it’s unpaid – and, in fact, it often is. it reduces people’s income. Providing care may require caregivers to take time off work, be demoted to flexible work, or leave work altogether. Given this financial challenge, it is not surprising that policy makers are focusing on supporting caregivers. The problem – as some colleagues say in the new study – is that it is not clear which policies will benefit carers the most.
To find out what caregivers want, the study authors took a novel approach – they asked them! During a series of focus groups, the researchers covered six policies: 1) paid family leave; 2) direct payment from the government for providing family care; 3) tax credits for providing care; 4) caregiver credits for Social Security benefits; 5) paid respite care; and 6) reimbursements for out-of-pocket caregiver expenses. The groups included 25 caregivers aged 26 to 67 who varied in income, race/ethnicity, and employment status. Figure 1 summarizes the results. While caregivers would love any support they can get, the two top policies share one thing in common: cash, now!
People had very little enthusiasm for some of the policies. Respite care payments were less popular than direct payments for several reasons. As one caregiver put it succinctly: “I don’t trust most people.” In addition, some are concerned about whether the respite care provider will be able to communicate with the care recipient. Or, as a focused group member puts it: “[i]if you’re going to send someone who’s not, they’d need body armor.”
The debts got worse. The Social Security credit system – basically caregivers can get a higher Social Security benefit even if they don’t work to get paid while they care – they fall prey to the most likely culprit: time. According to one focus group member: “I’m not [going to] I’m retired for another 20 years, so I’d rather have money now.” Tax credits and extended sick leave have been unpopular, particularly because they are linked to jobs that caregivers may not be able to hold.
So, how do the current policies stack up against those preferred by caregivers? Not very well. Although many states’ Medicaid programs offer direct payments to informal caregivers, one focus group member pointed out the pitfalls: “It’s a long approval process, maybe four to six months, and the person you’re caring for has to get federally funded Medicaid. .” Also, although the tax credit for care expenses exists, it is not refundable, so it cannot put cash in a carer’s pocket, just reduce their tax bill. In any case, the credit can only be used for expenses that enable the carer to hold a job or look after it – it’s not particularly useful for retired carers or carers who can’t hold a paid job.
OK, if current policy fails, what about future policy? Currently, the main action at the government level is on paid leave – which in fact no one in the focus group seemed to prioritize. Some states are also investigating respite care payments, the most popular method. At the federal level, recent congressional action has focused on Social Security credits, the least preferred method among the focus group.
But, while the current and proposed policies fall short, to me, there is something positive that can be taken from these focus groups. The best way to help caregivers is probably the simplest – just give them cash. Tax credits or extended sick leave that includes job benefits and future Social Security credits miss two important points. They don’t care of course there is to work, not just get paid, and provide a valuable service. Again, they provide that service and suffer financial costs now. So, money now makes a lot of sense.
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