It is estimated that approximately 38 million family caregivers spend 36 billion hours each year caring for loved ones. The patchwork of federal and state aid available to them is disproportionate to the weight of this burden.
One policy in particular stood out and they felt it would help them: direct payments for the time they spent as carers. While this benefit exists in many state Medicaid programs, these programs help a limited number of people because eligibility requirements are difficult to meet.
However, direct payment is by far the most popular policy option: 44% of caregivers who participated in a recent focus group said it was their first choice among various financial aid options.
Direct payments also happen to deliver the biggest financial boost. Caregivers were not informed of this fact during the focus group sessions. But the researchers estimate that over a seven-year period, the average span of care, the direct payments would amount to a substantial amount — $76,000.
“We don’t have unlimited funds,” one caregiver explained during a focus group conducted by researchers at the University of Massachusetts and the Center for Retirement Research in Boston. “Even though mom is sick, this will help.”
Direct payments are particularly popular among blacks and Hispanics, who are often young adults caring for parents or grandparents rather than spouses. They are also likely to provide a high level of care, with half putting in about 60 hours a month – a level that forces some out of the workforce.
The second most popular option is to reimburse caregivers for costs such as modifying homes to have wheelchair ramps or accessible bathrooms, or purchasing computer software for people with cognitive, speech or hearing impairments.
24% of participants in the focus group (an equal share of high and low earners) preferred this option.
Caregivers said the reimbursement would improve their quality of life. Many of these large items are not insured, forcing them to pay out of pocket. But the lifetime value of the reimbursement is relatively small — about $6,700.
The second most valuable policy from a financial perspective is to pay for alternative care to provide the primary caregiver with much-needed downtime. This could mean adult day care for elderly parents, or a home health aide for an elderly spouse or disabled child.
On average, this policy will provide more than $17,000 in lifetime assistance. However, only 12% of caregivers in the focus group preferred it.
But one sees a clear benefit: “It would be nice to have time where I don’t have to worry about being here…so I can do the things I want to do.”
Family caregivers are often forced to stop working or reduce their hours to care for family members. One way to help them is a proposed federal policy that would give those caregivers who are out of the workforce a credit on their Social Security earnings record. This policy was supported by 12% of participants.
But Social Security’s long-term payoff—retirement benefits years from now—has little appeal for people who need support today. “I’m not [going to] Another 20 years to retire,” one caregiver said. Tax credits are even less popular.
Paid family leave policies already in place in 14 states are also not considered very useful. No one chooses this as their first choice. The policy proposed by the focus group would pay 60 per cent of a carer’s salary for up to 12 weeks if someone in the family has a serious illness.
Some participants were aware of the programs. But they said paid leave wouldn’t help caregivers who aren’t working, and others worried about the benefits’ time limits or that it wouldn’t be practical or feasible for certain types of workers, including the self-employed.
Carers say direct payments are the best way to compensate them for the financial burden of caring for older and disabled family members.
To read this short By Marc Cohen, Anqi Chen, Claire Wickersham, Christian Weller and Brandon Wilson, see “Which long-term care support policies are best for caregivers?”
The research reported in this article was conducted under a grant from the U.S. Social Security Administration (SSA) as part of the Retirement and Disability Research Consortium. The views and conclusions expressed are those of the authors and do not necessarily represent the views or policies of SSA or any agency of the federal government. Neither the United States Government, nor any of its agencies, nor any of its employees makes any warranty, express or implied, and assumes no legal responsibility or liability as to the accuracy, completeness, or usefulness of the contents of this report. Reference herein to any specific commercial product, process, or service, whether by trade name, trademark, manufacturer, or otherwise does not necessarily constitute or imply endorsement, recommendation, or support of the U.S. Government or any agency thereof.
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