Congress Weighs Aid for Struggling Family Caregivers

Unlike so many societal issues, proposals to help family caregivers stand out as a practical, bipartisan way our government can make life better for people all over the country.

Feature article from The Engage Reader III

by Nancy LeaMond

Women, in particular, bear the greatest challenges of family caregiving. Importantly, the many pressures that arise from helping loved ones stay independent are experienced in all communities and regions. Moreover, the need for solutions is urgent: Trends in demographics and health care show a great need for more family members and friends to help their ailing loved ones in the future.

I say this both as the chief advocacy and engagement officer at AARP and as the caregiver of my late husband, who had amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease. Family caregivers are confronted with an array of stress-inducing challenges, including out-of-pocket expenses, unceasing demands on their time and energy, and expectations that they handle medical duties in the home. 

Traditionally, we have struggled with these challenges quietly behind closed doors, and caregiving has not been viewed as a pressing issue. Many people did not even see themselves as family caregivers. However, as more people live into their 80s, 90s, and beyond, often contending with health conditions that make it hard or impossible to stay independent, awareness is dawning that public policy must supply better answers and better support for caregivers. 

Increasingly, members of Congress are considering tangible solutions to the difficulties of caregiving. This is a welcome development, and I wish to highlight the new leading proposals sponsored by far-sighted and thoughtful leaders in both houses of Congress.

Each of these four bills has bipartisan sponsorship in both chambers of Congress. Democrats and Republicans are all hearing from constituents who seek more support as they struggle in a system of care that is costly, uncoordinated, and confusing. 

AARP’s 2021 study on Caregiving Out-of-Pocket Costs showed that overall, family caregivers spend an average of more than $7,200 annually in caregiving expenses on behalf of their loved ones. The study also showed that on average, these caregivers devote 26% of their income to caregiving.

It should be pointed out that the duties of caregivers have become more difficult in recent years. With little notice, the medical system now treats family caregivers as health care providers who must manage treatments in the home. Caregivers may be expected to tend to post-surgical wounds, operate medical equipment, give injections, and handle multiple prescriptions. Many caregivers have told AARP they feel unprepared for these tasks, which come on top of traditional caregiving services such as helping with personal care, preparing meals, cleaning, shopping, driving, and coordinating doctors’ appointments.

“With little notice, the medical system now treats family caregivers as health care providers who must manage treatments in the home.”

All this unpaid labor enables their ailing loved ones to stay independent and in the community, which is almost everyone’s ardent wish. Indeed, it is no exaggeration to describe family caregiving as the backbone of long-term care in America. Yet, for all they do, caregivers still do not receive the public support they need.

However, the growing number of legislative proposals suggests that policymakers may finally be starting to recognize the importance of their contribution — and the potential for caregiving support as a winning political issue. 

View the full issue of The Engage Reader III

In today’s divided political world, support for family caregivers stands out as a potentially unifying concern, an uncontroversial example of something government can do to enhance people’s quality of life and help families. AARP salutes the lawmakers in both parties who have taken leadership on this issue, and we will work with them to gain support for their efforts to support America’s family caregivers.

Slate of Bills to Benefit Caregivers

Credit for Caring Act

^{This bill would provide a non-refundable federal tax credit of 30% (up to $5,000 of long-term expenses that exceed $2,000 in a taxable year) for certain costs incurred by eligible family caregivers. AARP research shows family caregivers shell out an average of several thousand dollars annually to help their loved ones, reflecting the critical need for this legislative initiative.} 

^{Original sponsors: Senators Michael Bennet (D-CO) and Shelley Moore Capito (R-WV) and Representatives Mike Carey (R-OH) and Linda Sánchez (D-CA).}

Connecting Caregivers to Medicare Act

^{Too often, family members do not get the information they need to provide care for their loved ones. This practical proposal would inform people about the voluntary option for Medicare beneficiaries to allow family caregivers to access their health information through 1-800-MEDICARE. Having access to health information would make it easier for caregivers to communicate with Medicare and advocate on their loved one’s behalf.} 

^{Original Sponsors: Sen. Thom Tillis (R-NC), Sen. Maggie Hassan (D-NH), Rep. Mike Carey (R-OH), Rep. Judy Chu (D-CA).}

Alleviating Barriers for Caregivers Act 

^{This is another practical proposal to help caregivers navigate the system by trimming the red tape they may encounter when working with Medicare, Medicaid, the Children’s Health Insurance Program, and Social Security programs.} 

^{Original Sponsors: Sen. Ed Markey (D-MA), Sen. Shelley Moore Capito (R-WV), Rep. Kat Cammack (R-FL), Rep. Seth Magaziner (D-RI).}

Lowering Costs for Caregivers Act

^{It costs money to enable ailing loved ones to live at home. This bill would help by allowing flexible spending accounts, health savings accounts, health reimbursement accounts, and Archer medical savings accounts also to be used for qualified medical expenses incurred by a caregiver’s parent or their spouse’s parent.} 

^{Original sponsors: Sen. Jacky Rosen (D-NV), Sen. Bill Cassidy (R-LA), Rep. Vern Buchanan (R-FL), Rep. Mike Thompson (D-CA).}