Value Our Elders and Those Who Care for Them: A Message from the White House Conference on Aging

By Ai-jen Poo

Today marks the 50th anniversary of the Older Americans Act, which will swiftly be followed by the 50th anniversaries of Medicare and Medicaid, and the 80th anniversary of Social Security. Yesterday, I was honored to join hundreds at the White House Conference on Aging to celebrate these key programs and look ahead to the next decade of issues impacting older Americans. It could sound like a broken record to say that there’s no better time than now to take stock of what we need to do to meet the needs of our elders and 21st-century families. But judging from yesterday, we need to play it louder.

A couple of heartening and sobering notes from the conference to keep in mind as we continue to chart a path forward. David Hyde Pierce, a longtime Alzheimers’ advocate, reminded us that “to age is to live, and to care is to be human.” This simple declaration underscored how “aging” issues, whether retirement or long-term care or elder abuse, are not just about older Americans. They are about all of us and all our families. Professor Fernando Torres-Gil put it another way later when he noted, we are all “temporarily able.” As a culture, we must embrace that reality and prepare for it with creativity and compassion, and put dignity at the center of our planning.

There is no area where this is needed more than long-term care. Nearly 100 million Americans are impacted by the need for long-term care, and that number grows every day. But many individuals have unmet needs because government-funded programs often provide insufficient coverage for long-term services and supports. Meanwhile many families cannot afford to hire home care workers and their family caregivers are stretched too thin.

Britnee Fergins, a mom who also cares for her aging father and a two-year old, is one of these family caregivers, or who I like to call members of our nation’s Careforce. She sat with me on the morning’s caregiving panel. When asked if she had enough support, she unsurprisingly answered no. She said the support that was available was at best a patchwork of understaffed and confusing runaround of services. And she could greatly benefit from badly needed policies like paid family leave, so that she could accompany her father who has Alzheimer’s on his way to surgery without fear of losing her job.

She is not alone in her frustration. Nationwide, there are more than 40 million adults who are caregivers for an aging parent, a spouse, or other loved one who needs additional assistance. And among all adults over the age of 40, nearly 1 in 10 are both supporting a child and providing ongoing living assistance for a loved one. Many in this sandwich generation — caregivers squeezed between caring for an aging parent and their own children — should be called part of the Panini generation, because they’re so pressed and overwhelmed. 

Women comprise the majority of the paid care workforce and family caregivers, and a disproportionate number are women of color. Like too much of work that women primarily do, care work is often significantly undervalued. Research on the undervaluing of care work is ongoing, and new research has also begun to focus on the needs of those caring for veterans, youth who are primary caregivers, and LGBT older adults. These challenges will only continue to grow over the next decade.

We all want to see our elders age with dignity — cared for by people who love what they do and have the support they need to do their best work. While the White House Conference on Aging began to highlight the importance of these issues, local and state governments will likely need to lead the way to the bold, comprehensive and innovative solutions this country needs. But there are several steps the federal government can and should make more immediately to get the ball rolling.

Caring Across Generations and the Make it Work Campaign, with the support of seniors, family caregivers, home care workers, people with disabilities and women of color across the country, present the following policy proposals making long-term care affordable and flexible for all families while also supporting high quality jobs and care.

To address affordability and flexibility, family caregivers need more support. No one should have to choose between paying their bills and being there for the family they love. We support the FAMILY Act, which provides paid leave so that people can afford to care for their loved ones and themselves when they face serious illnesses. Additionally, to protect the retirement security of caregivers, we also support caregiver credits that provide individuals with Social Security credit for time spent out of the labor market to provide care to close family members. And we also propose support for family caregivers including respite care, in-home training, and inclusion in discharge and care planning.

In addition, as a down payment on the innovation needed to find the best, most flexible , affordable long-term care solutions, we are advocating for a new federally funded state innovation fund to support planning and pilot programs, so that we can create, replicate and scale programs that address long-term care needs and care workforce development. These innovations must include creative ideas about home and community-based care. While institutionalized care is necessary in certain cases, most Americans want quality care in their homes and community. In fact, 90 percent of Americans prefer to receive care in their home. That’s why we also support rebalancing public programs toward a greater investment in, and emphasis on, community and home-based care.

Home care is one of the fastest growing industries in our economy, providing critical daily care, services, and supports to millions of individuals and families across the country. However, the quality of home care jobs is very poor, with low wages, few benefits and protections, high turnover, and a high level of job stress and hazards. Those caring for the people WE love should also be able to care for those THEY love. This requires a significant federal investment to support the more than one million new jobs needed over the next decade. That investment must cover training initiatives, like the one announced yesterday, and other measures to guarantee high quality jobs and care. Paid caregivers, including live-in domestic workers, must receive overtime protections, a minimum wage of at least $15 an hour, paid sick days, and flexible, predictable work schedules. They also need access to affordable, high quality, flexible care for their own children and elders, and paid family and medical leave.

These investments in the care workforce will support high quality care, as higher paid employees will be less likely to leave for other work and more training and career pathways will improve the skills and capacities of the workforce. We need a public investment large enough to ensure that families are not pitted against providers and affordability and quality can go hand in hand. We are committed to ensuring that increased costs from raising wages and improving benefits do not lead to reductions in services to consumers. 

When President Johnson signed Medicare into law on July 30, 1965, he said: ”No longer will older Americans be denied the healing miracle of modern medicine. No longer will illness crush and destroy the savings that they have so carefully put away over a lifetime so that they might enjoy dignity in their later years.” We call upon our elected officials to tell us what they will do to be able to add to this: “No longer will caring for our family members be a struggle, but an easier, affordable part of everyday life.”

The Caring Across Generations Campaign (via Bend the Arc: A Jewish Partnership for Justice and Jewish Funds for Justice) is an Atlantic grantee.