Voters Care About Caregiving – and Political Leaders Are Getting the Message

Family caregivers have long been the invisible backbone of America’s long-term care system as they assist their older parents, spouses, and other loved ones. What’s new is that our political leaders are waking up to this important reality.

The latest examples come from both Vice President Kamala Harris, who has proposed expanding Medicare benefits to cover in-home care, and Donald Trump, who, at a recent rally, reaffirmed his commitment to supporting family caregivers through proposed tax credit.

Either of their plans would build on an array of measures that have been enacted throughout the country in recent years to ease the physical, emotional, and financial toll on family caregivers.

Let’s be clear: These devoted, hard-working family members and others need more support. The demands of caring can upend people’s lives. Family caregivers typically provide 24 hours of unpaid help each week – and that is usually on top of a full- or part-time job. Their responsibilities run the gamut from preparing meals, driving to medical appointments, and handling financial and legal matters to performing complex medical tasks like cleaning wounds and giving injections.

Over the past decade, AARP has learned a great deal from our members about caregivers’ needs and challenges. And we have used this information to push for much-needed policy solutions at the state and federal levels. We have raised public awareness with a coast-to-coast campaign and made major headway in making supporting family caregivers a genuine political priority.

Our advocacy has led to hundreds of legislative victories in red, blue, and purple states – commonsense measures with bipartisan backing that have helped save family caregivers time and money and provided them with more support.

AARP’s signature CARE Act legislation has created new support for caregivers in the hospital discharge process in 45 states, DC, Puerto Rico, and the Virgin Islands. We’ve helped push paid leave over the finish line in 13 states and obtained a tax credit or financial stipend for caregivers in another 5. We’ve successfully advanced policies related to respite care, telehealth, guardianship reform and power of attorney laws, home care, registries of home care workers, and more.

The Biden Administration last December announced that 29 states are planning to use federal funds to help train family caregivers, and to support respite, counseling, and other services. Overall, states were planning to spend $1.3 billion on varied efforts to help family caregivers, with financing from the American Rescue Plan Act.

At the same time, AARP has worked to give caregiving a more prominent place in federal policy, and we’ve been encouraged by efforts at the Centers for Medicare & Medicaid Services (CMS) to integrate family caregivers into the system of care.

Consider the challenges that arise when an ailing loved one is sent home from the hospital. Even after the CARE Act, family caregivers can sometimes be overlooked at this critical moment. To address this concern, CMS last year reaffirmed the responsibility of hospitals to engage caregivers in the discharge process, finally recognizing the crucial role they play in preserving the health and independence of their loved ones after they leave the hospital.

In 2023, CMS also finalized a Medicare rule to reimburse health care providers for training family caregivers. This was a monumental step that AARP fought hard for, acknowledging the essential role that family caregivers play within Medicare. Recent federal policies have also proposed training for family members who provide in-home medical care, help with navigation for caregivers of those with dementia in Medicare in the GUIDE Model, and strengthened assistance for family members who care for veterans.

Despite all this progress, much more is needed, both for individual families and the health care system overall.

America’s more than 48 million family caregivers make up the largest category of health care providers in the country. Indeed, there are about 10 times more family caregivers than paid direct care workers. They serve virtually every community – whether you look at it by geography, gender, race, age, or any other demographic. Six in 10 family caregivers are women, meaning that four in 10 are men. Four in 10 are people of color. Three in 10 are either millennials or members of the youthful Gen Z. Close to three in 10 belong to the sandwich generation, caring both for a parent, child, or grandchild.

Varied and diverse as caregivers certainly are, they share many of the same challenges. To meet those challenges, AARP is advocating several important pieces of bipartisan legislation pending on Capitol Hill.

• Credit for Caring Act would provide eligible working family caregivers with financial relief in the form of a tax credit to help offset some care expenses.
  
• Lowering Costs for Caregivers Act would allow family caregivers to use money from health savings and flexible spending accounts for qualified medical expenses associated with care for their parents or parents-in-law.
  
• Connecting Caregivers to Medicare Act would make it easier for family caregivers to gain access to the personal health information in Medicare of the loved one they are caring for with their permission.
  
• Alleviating Barriers for Caregivers Act would help reduce red tape for family caregivers in program eligibility, processes, procedures, forms, and communications in Medicare and Medicaid, the Children’s Health Insurance Program (CHIP), and Social Security Administration.

We are grateful for the champions in Congress who are sponsoring these bills, and we are heartened at support on both sides of the aisle. But more action is needed to push these bills across the finish line. For lawmakers who have not yet focused on this issue, I would respectfully point out that family caregivers are a large and growing constituency. Put simply, family caregivers vote

And there are a lot of them. AARP data show that one in 5 voters provides care to a loved one. They want elected officials to take actions that improve their lives and the lives of those they care for. Nearly, 7 in 10 older voters in the battleground states have told us that “policies to help seniors live independently at home as they age” will be very important to their voting decisions in November.

Now, as we head into the final stretch of the election season, the large and diverse constituency of family caregivers should not be overlooked.

By speaking out for caregivers and supporting their needs, thoughtful political leaders have an opportunity to help families, strengthen the system of long-term care – and give themselves a boost in the ballot box.