Family caregivers need a voice in our political debate

Family caregivers need a voice in our political debate
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It’s hard for over 40 million people to speak with one voice when the interest they share is not in any way political.

Family caregivers selflessly take care of loved ones, from a child with a chronic disease to an aging parent, every minute of the day. They prepare meals, install handrails, keep track of pills and injections, treat wounds, and much more. It can be the most rewarding experience of their lives. But the 40 million plus family caregivers across the United States also face a big toll on their finances and health — implications which are completely overlooked by federal policy.

It doesn’t have to be this way. By better understanding three sacrifices family caregivers are making, it’s clear that there are some simple solutions that can make a difference in their lives — and those under their care.

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Their biggest financial sacrifice comes from a loss of income. When a family caregiver needs to leave a job or cut back hours, their long-term financial outlook can turn bleak. For example, caregivers age 50+ who leave the labor force to care for a parent forego more than $300,000 on average in lost wages, Social Security benefits, and pensions. Women sacrifice about $324,000 on average and men $284,000.

They also face out-of-pocket costs from the small acts of kindness for a loved one that can add up to big sums of money. Family caregivers on average spent $7,000 on caregiving expenses in 2016. That was 20 percent of their income. To put that amount in perspective, it is similar to the cost of raising of child. A middle income married couple spent an average of 16 percent of their income on raising a child in 2015.

Why is the comparison with parenting important? Society supports parenting in lots of ways like tax credits and tax exemptions for parents. The tax policy principle is that income taxes should exclude basic costs of living. Yet family caregivers don’t receive similar tax treatment for the similar cost of living expenses they incur on behalf of their loved ones.  

Family caregiving has a big impact on health, too, as it is often extremely stressful work. More than half of family caregivers perform medical or nursing tasks like injections and tube feedings. Four out of ten caregivers rank the emotional stress of caregiving as a four or five on a five-point scale. The same number say they felt “down, depressed, or hopeless in the last two weeks,” according to a survey by the AARP and the United Hospital Fund. It should come as no surprise that family caregivers have higher rates of chronic disease and worse physical health than the average person.

Fortunately, private-sector support for caregivers is growing. For example, a new program pioneered at the Dana-Farber Cancer Institute and Boston Children’s Hospital trains caregivers for several days before a central line is inserted and sends a nurse to a home to support family caregivers. Such training has dramatically reduced bloodstream infections stemming from care at home, which helps reduce hospitalizations and costs.

What about support from policymakers?

One simple solution would be a tax credit for family caregivers. Sens. Joni ErnstJoni Kay ErnstPush for paid family leave heats up ahead of 2020 Ivanka Trump to meet with GOP senators to discuss paid family leave legislation On The Money: Negotiators aiming to reach deal Monday night | Why border talks stalled | Treasury calls reports on dip in tax refunds 'misleading' | Cuomo, Trump to discuss SALT deduction cap MORE (R-Iowa) and Michael BennetMichael Farrand BennetDemocratic donors stuck in shopping phase of primary Overnight Health Care — Sponsored by America's 340B Hospitals — CDC blames e-cigs for rise in youth tobacco use | FDA cracks down on dietary supplements | More drug pricing hearings on tap The Hill's Morning Report - Presented by the American Academy of HIV Medicine - Next 24 hours critical for stalled funding talks MORE (D-Colo.) and Reps. Tom ReedThomas (Tom) W. ReedDems ready aggressive response to Trump emergency order, as GOP splinters Dems hit GOP on pre-existing conditions at panel's first policy hearing A rare display of real political courage MORE (R-N.Y.) and Linda Sánchez (D-Calif.) have proposed a targeted credit for out-of-pocket caregiving expenses (S. 1151, H.R. 2505). Their bill would begin to put family caregiving on par with parenting in the tax code.

In addition to financial support, questions arise over who exactly is responsible for supporting family caregivers as they care for others. Everyone from social service organizations to providers to health plans will provide support at some point, but without a coordinated effort, gaps will persist.

That’s also where policymakers can play an important role. Sens. Susan CollinsSusan Margaret CollinsGOP Green New Deal stunt is a great deal for Democrats On unilateral executive action, Mitch McConnell was right — in 2014 Congress must step up to protect Medicare home health care MORE (R-Maine) and Tammy BaldwinTammy Suzanne BaldwinDems offer smaller step toward ‘Medicare for all' Overnight Health Care — Sponsored by America's 340B Hospitals — Powerful House committee turns to drug pricing | Utah governor defies voters on Medicaid expansion | Dems want answers on controversial new opioid Why does the bankruptcy code discriminate against disabled veterans? MORE (D-Wis.) and Reps. Gregg HarperGregory (Gregg) Livingston HarperCongress sends bill overhauling sexual harassment policy to Trump's desk Dems cry foul in undecided N.C. race Mississippi New Members 2019 MORE (R-Miss.) and Kathy CastorKatherine (Kathy) Anne CastorDemocrats’ Green New Deal leaves lots of room for improvement Dems downplay divisions over Green New Deal Overnight Energy: Ocasio-Cortez rolls out Green New Deal measure | Pelosi taps members for climate panel | AOC left out | Court reviews order for EPA to ban pesticide MORE (D-Fla.) have introduced the RAISE Family Caregivers Act (S. 1028, H.R. 3759). It would require the administration, working with an advisory council, to come up with a strategy that includes recommended actions that communities, providers, government, and others are taking and may take to support family caregivers.  Fortunately, it is very close to winning enactment in Congress.

If helping over 40 million people wasn’t impetus enough, the number of family caregivers is about to shoot up thanks to our nation’s changing demographics. In 2010, the ratio of caregivers aged 45-64, who are in the primary caregiving years, to aging seniors aged 80+, who are most likely to need assistance, was about 7:1. That ratio is projected to be 4:1 by 2030 and 3:1 by 2050. We not only have to do right by today’s family caregivers, but also for those with a greater challenge in the future.

Our aging society will need to rely on family caregivers even more in the future. Let’s start today to give them the support they need and deserve.   

Dave Kendall is the senior fellow for Health and Fiscal Policy at Third Way. Jacqueline Lampert is the founder and principal of Lake Street Strategies.