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Opinion | You Shouldn’t Have to Take Care of Your Aging Parents on Your Own


Congress has the tools to ease the pressure. Another piece of Mr. Biden’s caregiving proposal would increase the amount of Medicaid funding going toward improving the access to and affordability of home- and community-based care. There are also legislative proposals to provide family caregivers with tax credits for their caregiving expenses and Social Security credits for those who leave the work force to look after loved ones. Other legislation would award additional funding to states that expand access to respite care. Paid family and medical leave and flexible sick leave would allow informal caregivers greater flexibility to deal with loved ones’ illnesses, postsurgical care and emergencies, like the minor falls that are so common yet potentially devastating for older people.

Federal policy is only part of the story; some states are addressing the issue aggressively. Washington State has established a public long-term-care insurance program. Last year Maine announced a pilot program that uses pandemic relief funds to reimburse family caregivers up to $2,000 for related expenditures. Thirteen states and the District of Columbia have established some type of paid family and medical leave, and around 15 allow for flexible use of sick time. Many allow qualified family caregivers to get paid for their duties, mostly through Medicaid. AARP maintains a scorecard of states’ support for family caregivers, tracking the extent to which states have embraced policies such as paid family leave and sick days, unemployment insurance for family caregivers who must leave the work force and spousal impoverishment provisions. States lagging in support policies should be looking to the front-runners for models of what works, and voters should demand it.

With more and more complex duties being heaped upon them, family caregivers also need much more training and education. Since 2014, most states have passed a version of the CARE Act, an important first step. It requires hospitals to ask patients if they have family caregivers, and, if so, to provide the caregivers with information about the patients’ discharge schedules, along with instructions regarding whatever care the patients will need after returning home. But this measure applies only to people who have been hospitalized, and implementation is uneven, with only perfunctory instruction provided in many cases. More needs to be done. The Better Care Better Jobs Act, for instance, includes incentives for states to make training more available to family caregivers.

The help that caregivers need goes far beyond the nuts and bolts of caregiving and its financial costs. They need better information on how to navigate a health care system that is complex and decentralized, along with help coping with what John Schall, a leader in caregiving advocacy, termed the “psychosocial aspects” of the work — the alienation, isolation, anger, guilt and anxiety that often come with the territory.

Caregiving is essential work in an aging society, and at some point, most of us will have to confront its challenges. No one should have to face them alone.

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Larry Fink, a pre-eminent American photographer, is best known for his intimate black-and-white images.





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