Perspective: The Public Attitude on Caregiving in 2016—The America CARES Forum

On November 14, 2016, six days after the election, Altarum Institute’s Center for Elder Care and Advanced Illness and Caring Across Generations (CAG) hosted a national forum: America CARES. As participants, we talked broadly about what voters signaled they wanted; what implications the election may have for our work looking ahead; and what our primary objectives are as our country hurtles into the longevity era.

As the morning progressed, it became clear that our core, collective work of moving initiatives forward to help family caregivers and care workers who provide assistance in the home, is precisely in line with what all of us want—both for ourselves and our aging family members. We found evidence of this when we looked at exit polling data from voters who were interviewed on election eve and election day; when we reviewed what advocates and experts said was important; when we took into account recommendations from the National Academy of Sciences, Engineering, and Medicine’s recent report on caregiving; and when we examined our own advocacy.

We talked about how our current health care system typically treats only immediate, pressing health care issues, while ignoring those for which ongoing management is the best solution. And, we discussed what we can do to move initiatives forward that will improve the economic security of tens of millions of caregiving Americans in communities across the country, while also boosting the fortunes of the four million workers who care professionally.

“As a nation we really are at a crossroads right now,” noted Sarita Gupta of Caring Across Generations. “We can stay with the status quo patchwork system and let the next economic crisis take place in our homes; or we can take advantage of this tremendous opportunity to build the care infrastructure we need, and support the realities of 21st century families [by] meeting the country’s soaring needs for home-based care and more affordable childcare.” That involves, she added, “making major investments in our ‘people’ infrastructure.”

“On a fundamental level what we have in common is that we want to create a much stronger care economy,” Anne Montgomery of Altarum said. “There is no doubt that we have it within our power to create change that is wanted and needed, and to take that forward. Our system is designed to make that possible, and we know that money does not produce the best ideas. Collective work does.”

To push such an agenda forward, America CARES forum participants worked to distill the day’s deliberations and conversations around a set of principles:

• Providing better financial assistance to family caregivers—in the form of tax credits, direct payments, flexible paid family leave that includes both child care and elder care, and substantially improved access to coverage options that incorporate high-quality, affordable long-term care services;
• Providing improved skills training and advancement opportunities for care workers, along with access to retirement savings and other standard employment benefits; and
• Establishing creative new ways of prioritizing and paying for adapted housing that enables people with disabilities and other types of limitations to live as independently as possible.

Along the way we hope to be able to widen the base of support for tens of millions of Americans who are caring today, as well as the roughly three-quarters of us who—if we live long enough—will need support. The truth is that very few people can pull this off entirely by themselves—either the caregiving or the arranging of and paying for care. The odds of success are much better if we work together in complementary and interdependent ways to organize caring systems in our communities. Josephine Kalipeni, director of policy at Caring Across Generations said, “Building support, the ‘caring majority’ if you will, is critical to moving forward what we want to see. The voice of the caring majority can demand improving and expanding existing programs, creating new needed programs, and holding elected officials accountable for what we all really need—an affordable, accessible system that works for everyone.”

As we grow older, we want our health care system to provide the “right care at the right time guaranteeing an organized continuum of services that are adjusted for each person’s unique needs, goals and preferences. This is the essence of person and family-centered care, and there is already considerable evidence that it is both attainable and cost-effective. The question we have to ask ourselves is, if we had the opportunity to do it all over, would we rebuild the system of acute care interventions that was the blueprint in the 1960’s, or would we build something different that works for the 21st century family?

At the November 14 forum, Gupta noted that “the more opportunities we have to come together to share updates on our work and look for the opportunities to cross-collaborate, the stronger our organizing, and the stronger the care agenda will be.” Affirming this, CAG political director Kevin Simowitz emphasized that “we have to talk about care as an economic issue and not solely as a moral imperative.”

At a national level, the Trump Administration and the 115th Congress will be required to address hundreds of challenges every day. Competition for the attention of policymakers will be fierce, and multiple proposals representing a wide range of interests will be aggressively pushed and lobbied. In the public sector, the fate of national health care programs that serve frail elders and people with disabilities is highly uncertain—notably in the case of Medicaid, which could be transformed into a series of divergent state programs if funding caps are approved and longstanding quality and accountability rules are erased. But there is no doubt that amplifying the voices and advocating on behalf of more than 90 million Americans who voluntarily step up to support someone who needs care is a high honor. Our New Year’s prediction for 2017 is that increasingly, policymakers will recognize that supporting family caregivers and care workers is simply the right thing to do. But we know recognizing this isn’t enough. We need action.

Toward that end, we hope you will join our efforts as we strive to help build an even stronger movement dedicated to improving how we care for each other in old age and during times of illness and disability.

Are you a member of the caring majority who is receiving or providing care? Add your voice to this growing movement. Share your story with us. Send us materials to post at the link above. We’ll also be out on January 21 bringing a message of inclusiveness to the Women’s March on Washington from family caregivers and direct care workers who cannot be there. Please email anne.montgomery@altarum.org if you would like to march with us, and we will send you the details.