Sep 262017
Red Image of America Cares Chartbook

The America CARES Forum was held on November 14, 2016, a week after the national election. Sponsored by Altarum with Caring Across Generations, the forum featured national polling data from Lake Research Partners and The Tarrance Group. The polling showed strong support for major policy advances for both family caregivers and direct care workers, as demonstrated in the data from the Chartbook for America CARES [click to download the PowerPoint file]. Voters of all stripes ranked caregiving as a major concern and all endorsed substantial policies to make caregiving more possible and less burdensome.

Overall, the number of older adults over the age of 65 will nearly double by 2050 and the 80+ population is projected to increase 79% from 2010 to 2030 and 44% from between 2030 and 2040. These changes, coupled with falling birthrates, will create a care gap, with less than 3 people of working age (potential caregivers) for each older adult in need — compared with a 7:1 ratio in 2010. Meanwhile, labor force participation among women ages 25 to 64, who currently make up 73% of the home care workforce, will increase by only 2 million in the next decade, compared to 6.3 million in the previous decade.

Caregiving issues will shape the politics and policies of the coming decades.

May 242017
Poster showing elder and caregiver

The Center for Elder Care and Advanced Illness is proud to support CARE, a 65-minute documentary about the increasing importance of caregiving in our aging society; the passionate caregivers who often earn poverty wages; and the families who struggle to afford the care they desperately need. We hope you will join the CARE team in support of the work we all do to move towards a more just, and equitable care system for all!

How can you help?

Bring CARE to your church, community organization, campus, or workplace. Local screenings help to spread awareness of eldercare issues, create fundraising opportunities for local care networks, and empower and educate the public about efforts to improve our care system to better support both elders and caregivers. To learn more, reach out to the film team by visiting or contacting Denae Peters at [email protected].

Jan 102017

By Anne Montgomery and Josie Kalipeni, Caring Across Generations

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.

Responses to poll from Lake Research Partners on policies to help people who are ill, elderly, or disabled.

Polling Data from Lake Research Partners on policies to help people who are ill, elderly, or disabled.

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 [email protected] if you would like to march with us, and we will send you the details.

Dec 062016

By CECAI and Caring Across Generations Staff

Caring for others has become the defining issue of our time, and grows increasingly salient in political campaigns with each passing day. This emerged as the defining theme of a November 14th forum, “America CARES,” which was headlined by Altarum Institute’s Center for Elder Care and Advanced Illness and Caring Across Generations.

Coming less than one week after the national election, more than 200 caregivers, researchers, analysts, and advocates gathered online and in person in Washington, D.C., to discuss voter preferences, share information about what stakeholders and advocates are prioritizing, and focus on what can be moved forward through deliberate collaborative work.
Much attention was paid to what voters think, as measured in bipartisan national polling conducted on election eve and election day by Lake Research Partners (LRP):

Responses to poll from Lake Research Partners on policies to help people who are ill, elderly, or disabled.

As both LRP principal Celinda Lake, a Democratic pollster, and Brian Nienaber of The Tarrance Group, a GOP pollster emphasized, the most striking finding is that both Trump and Clinton voters overwhelmingly chose “all of the above.”

“When you look across these demographics, this [caregiving] issue is of major salience to groups in both coalitions,” Lake said. Women care particularly intensely about this issue, [and] so do seniors.” She continued: “This issue needs to be embedded in a broader economic frame. We are talking about it in too minor a way.” Nienaber added: “When you get people volunteering ‘all of the above’ that is huge…[It] is one indicator that [voters] grasp the depth of the problem, and I think too an indicator that they are just not sort of fully versed in what the most appropriate or easiest bite-sized solution is.”

For this reason, Lake suggested that messaging on this issue should always be “1/3 problem, 2/3 solution.” As Josie Kalipeni of Caring Across put it, “[It] creates an umbrella to say that we need a system that works for all…and to have a unified message while bringing expertise of what [each organization] is advocating for to the table.” Moreover, a third of respondents favored all three options presented for expanding the number of direct care workers: increasing wages to $15 per hour, benefits including paid time off and retirement savings, and opportunities for skills training and career advancement.

What voters say they want are the things we don’t have in place in our health care system today—except for in-home services—and these are not reliably available or affordable for many people. The system that we have in place today, in other words, is effectively not the one we need in a rapidly aging society.

But there is also good news: Kevin Simowitz of Caring Across Generations pointed out, “caregiving entered the presidential campaigns this year in a way we haven’t seen it enter before,” with care appearing on both the Republican and Democratic national party platforms (for more on how this happened, see the Family Caregiver Platform Project). Multiple speakers reiterated the need to make an economic case for care policy in combination with stories about the people impacted. As Ben Chin of the Maine People’s Alliance pointed out, “the public is with us on tax fairness right now. “Maine People’s Alliance managed to get a measure on the ballot in 2016 that provided 3% surcharge on income over $200,000 to fund education. “In districts where many voted for a right wing populist, they did vote for this,” he said. This dynamic can be used again, he argued, noting that polling from Caring Across Generations has found broad bipartisan support for universal family care funded by tax increases on those making more than $100,000.

In a new long-term care white paper, Caring Across Generations recommends the creation of a state level public long-term services and supports benefit that is accessible to all who need it regardless of income. “We continue to see tremendous opportunities in the states, and we believe that states can and must take intermediate steps to expand access to affordable and accessible long-term care until federal improvements are made,” said Sarita Gupta, co-director of Caring Across Generations. “State-based programs can address the unique care problems faced within each individual state, yield invaluable insights into what works and what does not, and build momentum for an eventual federal solution.”

The fact that people want much more integrated and well-coordinated care was also clearly reflected in responses to an online survey of registered participants fielded by Altarum. Participants were asked to rate their support for a number of policies. Of the 5 most that were most strongly supported, 4 out of 5 related to coordination of support: 1) ensuring availability of adapted housing; 2) development of a comprehensive repository of social resources and the community level; 3) caregiver assessment in Medicaid, Medicare, and the VA; 4) flexible workplace policies; and 5) expansion of integrated, community-based programs such as the Program of All-Inclusive Care for the Elderly (PACE).

To establish a system that is effective, we need to adapt, re-engineer and redesign to include health-related social services and supports in the array of services that are available on a reliable basis. Roughly 70% of us will spend several years—and for some it will be many years—living with both multiple chronic conditions and functional limitations.

We know that 34 million family caregivers and 2.2 million care workers provide care to older adults and people with disabilities in the community. Both groups struggle to maintain financial stability, to coordinate care, to maintain physical and mental well-being, and to balance their work and family responsibilities, and are becoming increasingly active as political groups. One of the goals of this event was to unite family caregivers and care workers with a common care agenda.

The most prominent theme of the forum was that care is a unifying issue that provides a blueprint for tailoring positive advocacy in a more populist era. Again and again, speakers emphasized the universality of the need for care. Noting that there will be 47 mayoral elections and 36 gubernatorial elections in 2018, Lake suggested that advocates, analysts, stakeholders and their allies have a solid opportunity to make caregiving actionable at the ballot box. Participants also highlighted the Caregiver Advise, Record, Enable (CARE) Act as evidence of what can be accomplished at the state level, in addition to the ways in which care transcends partisan politics. This bill would require that hospitals record the name of the caregiver in the medical record, inform them if the loved one is transferred, and provide instructions and training on tasks that the caregiver will be expected to perform at home. The traditionally red state of Oklahoma, John Schall of Caregiver Action Network noted, was the first state to pass the CARE Act.

Voters have provided a green light to move forward—at the national level, the state level, and the local level. And we look forward to working with all of you to do that. Together we have a clear opportunity to shape policy and to ensure that those who care, whether as unpaid family members or as workers, live in dignity and have the tools they need to support those for whom they care.

Mar 282016

By Joanne Lynn and Elizabeth Blair

For about the last decade, federal policymakers have shunned serious consideration of long-term care, apparently feeling either that it is a black hole of need or that dealing with it gets too close to acknowledging rationing and death panels. People who tried to encourage a focus on long-term care, often now called long-term services and supports (LTSS), were quickly suppressed at the federal level. In 2013, after the repeal of the Community Living Assistance Services and Supports program or CLASS Act, which was found to be actuarially unsound, the Commission on Long-Term Care was appointed to develop policy recommendations for long-term care financing and service delivery. However, the Commission was unable to come to accord on a financing plan, and policymakers did not take up its other recommendations. Meanwhile, states have watched their budgets get swallowed by Medicaid LTSS costs and have responded with various endeavors to integrate LTSS with medical care or simply limit their costs.

However, change is coming. Already this year, four major reports have been promulgated by influential groups, and the U.S. House of Representatives Energy and Commerce Committee held a hearing on March 1 to summarize these issues and illuminate options. The data and consensus point to a striking convergence.

The basic data came out in Health Affairs in November of 2015. Favreault et al. reported the findings from a rigorous, substantial simulation of various strategies for financing LTSS. This work concluded that a plan that relies on voluntary purchase of long-term care insurance (LTCI) will not get enough people covered and will not result in any substantial savings to Medicaid. The researchers examined the various approaches of public involvement, adjusting features such as the length of time until LTCI starts paying and the maximum payments. The bottom line is that getting a broad financing mechanism requires both private savings and public investment and that the most workable solution would be to enhance the private LTCI marketplace by providing a public program to cover catastrophic costs. In LTCI, catastrophic costs mostly arise from unusually long duration of need. Most people have less than 2 years of LTSS need, but some have many decades. If Americans were expected to save or purchase LTCI to cover 2 or 3 years of LTSS and the community (through government programs) pitched in at that point, then the pricing and risks of LTCI would become much more predictable and the purchase of LTCI would become much more affordable. The Health Affairs article laid out the data but did not advocate any one option.

Picking up where the modelers left off, the Bipartisan Policy Center (BPC) took a step closer by issuing a report that recommended the creation of a publicly financed catastrophic LTCI program, along with additional recommendations to strengthen private LTCI programs.
At about the same time, LeadingAge released its 2016 Pathways Report: Perspectives on the Challenges of Financing Long-Term Services and Supports, affirming its commitment to engaging policymakers on the issues of LTSS financing.

Then on February 22, the Long-Term Care Financing Collaborative took the obvious but previously unspoken step of overtly calling for a federal program to cover LTSS once the person has been disabled for 2 or 3 years. With a public program covering the back end, families, elders, employers, and LTCI companies could come up with flexible, workable ways for most Americans to save for LTSS needs in old age, either by purchasing LTCI or by saving enough for this limited period.

On March 1, while the country was watching Super Tuesday, the Energy and Commerce Committee held a hearing on LTSS financing, with Alice Rivlin speaking to the BPC report, Anne Tumlinson discussing the data, and William Scanlon addressing broad policy issues. The members asked good questions and clearly were looking for even partial solutions. Not a single member implied that LTSS needs were not a federal issue or that families should do more.

The rebirth of this conversation is important and it is important that it is framed with data that make it very difficult to pretend that we could adopt an entirely voluntary approach. Some degree of protection from catastrophic duration of LTSS need will have to be a public issue in order to make LTCI affordable. Some array of incentives and education will be needed to get large numbers of persons having coverage for the “front-end” first few years.

We must recognize that the challenge of so many of us needing LTSS in old age will require addressing two additional issues. First, any solution for financing LTSS is likely to require more than a decade to become fully operational. Indeed, if it relies greatly on worker savings, the lag will be around 20 years, the usual duration between retirement and need for LTSS. We need stopgap solutions for the interim.

Second, the financing of LTSS needs to go hand in hand with reforms in the delivery of comprehensive services, LTSS, and medical services. We need to reduce the per capita cost of comprehensive care, probably more in the medical line of work than on the LTSS line, which may actually have enough unmet need that initiating better availability of services would increase costs for a time.

Long-term care is back! It’s time to organize a strong voice for caregivers, to propose MediCaring Communities, to test appealing possibilities, and to organize for permanent reforms. The effort needs to stay bipartisan, guided by data, and a point of pride in the society. Let’s push these issues in the current elections, encourage professional and consumer groups to create agendas, and end up with LTSS being reliable and affordable.

Read the BPC’s recommendations here:
Read the LeadingAge Pathways Report here:
Read the Long-Term Care Financing Collaborative’s report here:
Read the Health Affairs article on the modeling here:
View the Energy and Commerce Committee hearing “” and read testimony here: and

Feb 222016

By Anne Montgomery

A tremendously positive legislative achievement occurred on November 5, 2015, when the PACE Innovation Act (P.L. 114-85) was signed into law. Although it has received little notice, what this five-line statute does is provide the Centers for Medicare & Medicaid Services (CMS) with the authority to loosen the rigidity of the best, most established service delivery model for a geriatric population wishing to “age in place” at home: the Program of All-Inclusive Care for the Elderly. Some of the most salient possibilities for evolution of the PACE model are wrapped up in a potential PACE Expansion.

PACE already has a solid reputation as a comprehensive program tailored to dually eligible beneficiaries who need a mix of medical care and long-term services and supports (LTSS). Yet it has a small footprint across the country, serving about 35,000 adults age 55 and older. With the additional flexibility provided by the new law, PACE is now in the ambit of CMS’ Center for Medicare & Medicaid Innovation (CMMI). For the first time, the program can be readily adapted and tweaked to serve Medicare-only beneficiaries who have a need for some LTSS but are not yet functionally at the nursing home level of care (which varies between states) and have incomes above their state’s Medicaid financial eligibility threshold. During the height of the Baby Boomer-driven “age wave” a little more than a decade from now, when tens of millions of seniors living into their 80s and beyond will be seeking reliable, affordable assistance to remain in their homes, many might welcome a flexible, comprehensive program that offers both ongoing medical care and tailored LTSS.

Here is how an adapted PACE model might work: Medicare-only beneficiaries would be empowered to buy into PACE for their LTSS services with private dollars, whether in the form of tiered bundles of services, on a menu-driven basis, or a combination of both approaches. These at-risk beneficiaries would be appropriately motivated and incentivized to buy just the amount of LTSS that they actually require, which would be determined based on a comprehensive assessment and a corresponding comprehensive care plan. The amount they would pay would be far less than what has long been required for Medicare-only PACE enrollees, who, by regulation, are now forced to pay the full Medicaid capitation rate. Because the Medicaid capitation rate is a blended rate to cover the needs of those who are eligible for nursing homes and to stay with them to the end of their lives, the fee is typically several thousand dollars a month. Vanishingly few Medicare-only elders think that they will need this level of service, so there are very few Medicare-only PACE enrollees today. If, instead, Medicare beneficiaries could secure tailored LTSS at much more reasonable premiums, this would stretch and conserve their retirement savings. From the vantage point of states that are struggling to plan for substantially larger Medicaid LTSS populations, this could have a positive impact on slowing spend-down rates.

In addition, it may be possible to consider whether the out-of-pocket payments made in such an arrangement could be made through a revised, more affordable private long-term care insurance (LTCI) market. Some initial promising ideas for improving LTCI have recently been announced by the Bipartisan Policy Center.

More importantly in the near term, the overall state of readiness of the Aging Network (AN), which is still not well-understood within the health care industry, must be enhanced. For an expanded PACE program or any other health care provider to succeed in serving a significantly larger population of Medicare beneficiaries with varying needs for LTSS, which are delivered in the home, will require much more focused attention to the AN by policymakers and stakeholders in the health care sector. Composed of thousands of small, locally administered Area Agencies on Aging (AAAs) and related community-based organizations across the country, the AN is charged with arranging for and providing social services and supports (e.g., home-delivered nutrition services, respite care and flexible, adapted transportation systems) to all older citizens who are deemed to be in need in any given community. In practice, the ability of the AN to deliver on this promise is compromised by an inadequate financing base. Although the AN is moving as quickly as possible to transition to partnering with health care partners, some of the key infrastructure required (e.g., data systems to collect, report, and analyze performance metrics that are compatible with what health care providers are asked to submit) is poorly developed. This suggests that more focused attention, as well as well-targeted financial investments, must be made in order to create a reliable, comprehensive, cost-effective service system that spans the health and social services sectors.

To date, investments by the health care agencies in the federal government to link the AN’s service delivery system with the health care system have been miniscule. Along with chronic underfunding through the appropriations process despite steadily rising need among aging seniors in communities across the country, underinvestment in the AN’s infrastructure is arguably stymieing further development of this sector. Questions about how an expanded PACE program (and similar evolving initiatives) can be positioned to work with the AN most cost-effectively are probably best answered through prudent investments in research, pilots, and demonstrations, along with ongoing monitoring and quality improvement efforts. Without such investments, LTSS services for millions of community-dwelling Medicare beneficiaries could become increasingly unreliable or perhaps even completely unavailable. If this happens, the likely outcome will be that health care costs for a rapidly growing population of older adults who need LTSS services but cannot secure them will continue to rise quickly.

On the other hand, an expanded PACE model approach offers the possibility of connecting an already established, high-quality, interdisciplinary health care model with an existing, though still loosely organized, community-anchored social services sector. It is a possible and exciting adaptation of the best that our current care system has to offer. To make it a reality will require timely, concerted action on the part of CMS and interested stakeholders. Also needed are local leaders and community and aging services advocates who recognize that there is an opportunity at hand to create a strong foundation for a more comprehensive system of care—one that explicitly includes supports that address the social determinants of health.

Click here to view a slide deck on the Frail Elder Expanded PACE Program.

Mar 242015

By Elizabeth Blair, Victoria Walker and Anne Montgomery

Standing behind a podium in a Capitol Hill meeting room at the March 3 launch of a new congressional caucus aimed at increasing policy attention to family caregivers, Marianita Gorman of New Mexico took a deep breath and looked at the audience of healthy, able-bodied staffers and stakeholders. Caring for Robert, a colleague she met at work who became her “bestest friend” and ultimately died of chronic obstructive pulmonary disease, was “very challenging” and even sometimes “frightening,” she told them. “I think when you start the process of caregiving for someone who is a friend or a relative, it is unscheduled,” yet the demands are “like taking on a second job with no financial benefits.”

Among those demands: significant physical assistance, emotional support, organization of financial and household affairs and for many, responsibility for helping to make critical end-of-life decisions.

Gorman was one of a group of four caregivers and four legislators at the launch of the new bipartisan, bicameral caucus known as Assisting Caregivers Today (ACT). Her story resonates with millions of Americans who selflessly give of their time, energy, and resources to the tune of $450 billion in estimated support each year.[1] Caregiving is undoubtedly a noble commitment, but one that is increasingly unsustainable in a rapidly aging society, where the number of elders and individuals needing assistance will more than double while the numbers of family caregivers will decline precipitously. In short, it is time for policymakers to lend caregivers a helping hand.

At the launch, the four co-chairs pledged their support:

“We ought to come together as a country and agree that supporting caregivers is a clear, convincing priority that needs to be addressed…. We can’t afford not to do it.” —Rep. Michelle Lujan-Grisham

Family caregivers are “unsung heroes and unseen in many ways.” —Sen. Michael Bennet

Often, women who are family caregivers “either have to leave the workforce or…have to leave their school setting…or a volunteer setting in order to be the primary caregiver of someone that they love. This is a very consuming job and responsibility, and we need to give them relief and find ways that people can stay in their homes in the most comfortable setting as long as they can possibly stay there.” —Rep. Diane Black

“We’re willing and wanting to hear what you think…. This is just the beginning.” —Sen. Kelly Ayotte

So let’s get moving. Right now, more than 65 million family caregivers in the United States, who daily demonstrate their commitment to their spouses, children, parents, grandparents, and friends who are ill and disabled, are caught in a web of poorly coordinated health and social services.[2] They need solutions that go well beyond recognition of their efforts. Caregiving requires time, money, and timely access to information and in-home assistance. Our current health and social services systems offer very little support in any of these categories. As Joanne Jenkins of AARP said at the ACT caucus launch, now is the time “to find solutions to make life better for those in need.”

To start, caregivers need policy at the federal, state, and local levels to address workplace flexibility and the financial insecurity that results when they forego their own needs in the face of a fragmented care system that offers them no reliable support. There are some helpful solutions that can be considered. For example, the Family and Medical Leave Act (1993), which ensures that unpaid leave can be taken in times of health crises for workers and their families, could be slightly broadened to include all family members who provide care. Several states have developed paid family and medical leave programs, finding minimal adverse effect on employers.[3] Care systems in some other countries have decided that it is easiest to pay family caregivers. Many have established reliable respite programs. Why not the United States? Our health care system, which is gradually moving from paper to electronic records, does not even record the name of a patient’s caregiver, much less provide tangible help when it is most needed.

It is good news that Congress has established the ACT caucus. But it will take time to enact new programs or come to agreement on expanding existing programs. Meanwhile, here are some ways to raise the importance and salience of family caregiving at the local and state levels:

  1. Attend candidate forums and ask a question or two about caregiver support. Tell your story, or a story of a caregiver whom you know, and suggest how the community can do more to support these efforts.
  2. Insert some language about family caregiving into the agendas and reports of volunteer groups to which you belong, as well as professional organizations.
  3. Write responses and comments to blogs and articles about health care and social services programs. Put forward some ideas for solutions.

Right now, this country relies heavily on family caregivers to maintain the long-term care and health care systems but offers little to nothing in return—not even the assurance that they will have the basic information they need to ensure that their loved one is not in pain and discomfort. There is no national or regional “one-stop shop” of information and resources that can be queried for immediate help, counseling, and training and turned to by families in need of basic, reliable assistance.

It’s time to change this. A dwindling number of family caregivers can’t be expected to continue taking up the slack for poorly organized care systems. As family caregiver Chris Courington of Tennessee pointed out at the ACT launch, if Congress, states, and communities can partner to make it easier to access information about what to expect, what questions to ask, and where to turn when help is needed at home, “this would help all caregivers be more present with their loves ones and not worry about all the little things so much.”





Jul 302014

by Janice Lynch Schuster

Age-related issues, including family caregiving, must become integral to the domestic policy agenda. Until now, they have received lip service. But here’s our opening to push for real conversation: The Obama Administration has declared a domestic policy focus on improving the lives of working families. At a June White House Summit on Working Families, cosponsored by the Department of Labor and the Center for American Progress, I was struck by an array of political, media, and business superstars—and their failure to focus on the fact that workers age and become and need family caregivers. In a workforce teeming with family caregivers, one thing is for sure: The work is unpaid, but it has real costs.

For now, programs that help family caregivers are few, often limited in time and scope. At the federal level, the Family Medical Leave Act provides 12 weeks of unpaid leave; but in a world in which caregiving may require years, not weeks, that is simply not enough. Working families cannot afford a week, much less 3 months, with no income. Time away from work means lost Social Security contributions; lost retirement; and, for some, a loss of skills. Aging workers are themselves challenged by illness, disability, and ageism in the workplace.

Those of us aiming to build a better future for elders (and ourselves) must push for a conversation that includes family caregivers. Whenever we can, we need to remind our opinion leaders and policymakers that family caregivers are working families. Policies that help pregnant and new moms and dads are fantastic, but so are policies that help families support loved ones who are old or frail or have disabilities.

The well-documented yet unsolved problem is creating public policies that support family caregivers—not just in name, and not just with lip service, but with real, meaningful financial, social, and physical help for the challenges that we all may face eventually. Throughout the day at the White House Summit, people talked about what working families need, but as if those needs ended with paid maternity leave, high-quality daycare, or an onsite lactation room.

The fact of the matter is that we will spend more years as caregivers to adults than we spend parenting children from birth to age 18, and those years will have a profound effect on our income and our economic security.

Private industry leading the way for working families?

At the White House Summit, several business leaders described what their organizations have been doing to improve life for their workers and, by extension, their families. Several had exceeded the minimum wage, offering what is known as a living wage, which, even at $15/hour, is far from what a family of four needs to thrive. Employers like Seattle-based Moz have implemented “no-meeting Fridays” and flexible commuting and worksite policies that encourage telecommuting and flex schedules.

Executives from companies large and small shared their strategies for helping employees balance work life and family life. A restaurant owner from Washington State described the consequences of providing paid sick leave to her staff of 52; the cost was offset by an increase in business from a community that admires her commitment. Mark Weinberger, CEO and Global Chair of EY (formerly Ernst Young), noted his efforts to lead by example—to demonstrate for his employees that family obligations and opportunities should always come first—flying home from his own first-ever keynote address in China, he said, to get to a family event.

When government and business work to develop effective policies for families, Weinberger cautioned, employers should remember that “women don’t want to be singled out and men don’t want to be left out.”

Breakout issue, not just breakout rooms

Yet caregivers are regularly left out of policy discussions. Even at a major event focused on working families, family caregiver issues were mostly in the breakout rooms. Important as it was to have Ai-jen Poo of National Domestic Workers Alliance and Gail Hunt of the National Alliance for Caregiving on the agenda, neither was featured in the plenary, with its standing-room-only, high-profile program.

The voices of older adults must be center stage, not just in the breakout rooms or as afterthoughts, but as central to what helps working families.

Congressional leadership for working families

Recent actions on Capitol Hill offer hope. The challenge for proposed policies and programs is to generate will and awareness, despite the possibility of an increased payroll tax. Examples follow:

  • Rep. Rosa DeLauro (D-CT) and Sen. Kirsten Gillibrand (D-NY) have introduced [and reintroduced in 2019] the FAMILY Act, about which DeLauro has written, “The FAMILY Act would create an independent trust fund within the Social Security Administration to collect fees and provide benefits. This trust would be funded by employee and employer contributions of 0.2% of wages each, creating a self-sufficient program that would not add to the federal budget. The expected cost to the average worker would be similar to the expense of one tall latte a week.” When needed, benefits would be paid out to cover about 66% of a worker’s wages for some period of time.
  • Rep. Nita M. Lowey (D-NY) and colleagues in the House have introduced the Social Security Caregiver Credit Act of 2014, which would allow family caregivers to continue to accrue credits necessary to earn Social Security benefits, even when they leave the workforce temporarily to care for another. Supporters can find out how to lend their voice via a website from the Center for Community Change.
  • U.S. Senator Robert P. Casey, Jr. (D-PA) has announced his plans to introduce legislation to create a national Caregiver Corps, an idea first launched as a grassroots movement to address workforce shortages, build intergenerational support, and promote opportunities for adults of all ages interested in community volunteerism.

Progress is not inevitable

While all these great ideas would make useful laws, we need to do more to advocate and be sure that our issues and aspirations are not lost in the ongoing debates over domestic policy. At the White House Summit, Labor Secretary Tom Perez spoke movingly of what it means not just to “put food on the table but to have time to eat at the table.” He also noted, “Progress does not roll in on the wheels of inevitability.”
Progress occurs because we make it occur. If we simply wait to react to the “age wave,” we will be swamped.

When it comes to an aging America, denying the numbers and science cannot change the future: If cancer does not kill us in our 60s and heart disease spares us in our 70s, dementia and frailty will come for us in our 80s and 90s. It is not just death and taxes that are inevitable: Aging, after all, is the only path to a long life.

key words: Medicaring, Working Families, White House Summit, family caregivers

Apr 242014

Another in our series to build the MediCaring book. Judith R. Peres contributed significantly to this post. Please feel free to comment, expand, tell us what we’ve got right, and what we have missed.

For decades, older adults have relied on the medical system to cure or treat what ails them; but those aging into advanced age will soon discover that what they most need—and most cannot afford or find—are social services that deliver essentials, such as food, safe housing, and reliable transportation, as well as hands-on, personal care for activities of daily living.

Our healthcare system has long delivered—and paid for–the most advanced, most expensive medical tests and treatments, with little regard to their cost. Consider, for instance, our willingness to pay for the very latest cancer drug for very old people, even when it costs $100,000 per treatment, and even when it yields little improvement to quality of life or length of life.

And while we are keen to prop people up with medical treatments, we balk at paying for what very old people need most: housing, food, transportation, and personal care. Only when an individual has virtually no assets left does Medicaid’s  safety net kick in and help out. And even then, that help may be insufficient, particularly for services delivered in the home. Recent economic and political challenges have threatened the very fiber of that safety net, and millions of older Americans have found themselves wait-listed for food. Estimating the suffering and financial costs of these arrangements, as compared with a more optimal set of services, is difficult; but, by any metric, the magnitude of waste and unnecessary suffering is enormous.

Medicalization of Care: Leaving Frail Elders Behind

Traditionally, our social arrangements have separated medical services from social services, or long-term care (LTC). And neither of these has really been linked to services that guarantee adequate and safe housing environments. But for frail elders to thrive, these circles of care must become concentric and collaborative.

Imagine, for instance, what happens to a still-not-back-to-functioning frail elder who is discharged from the hospital. She gets home to a house that still includes stairs at the front door, or bathroom doors too narrow for her wheelchair or walker. Or consider the heart failure patient discharged from the emergency department, who is waitlisted for Meals on Wheels and, in the meantime, can only afford canned vegetables or soups laden with sodium. These all-too-common situations reflect failures of coordination that eventually cause healthcare setbacks, trigger re-hospitalizations, increase suffering, and lead to very high costs. With coherent care planning among spheres of care and influence, all of this could have been avoided—and better outcomes attained.

Rather than focusing only our open-ended payments for medical treatment, we should consider investing more in housing, nutrition, livable communities, caregiver support, and other services for frail elders. While most developed countries spend about 1.7 times as much on social services as on medical care, the U.S. spends only about 70% as much on social services as on medical care. (Bradley and Taylor, 2013) This medicalization of care affects frail elders particularly hard, since they need help that goes beyond medication, and includes help with the ordinary  tasks of daily life, such as eating, bathing and moving around. Who could deny that accomplishing these are, in fact, essential elements for a decent, dignified old age?

Aging in Place Will Require Doctor Housecalls—But So Much More

Aging Boomers, all 80 million of them, imagine and hope that they will be able to age in place, remain in their own homes and neighborhoods rather than moving to a nursing home. To achieve this, they will need a score of services that span medical and social supports, from needed include care coordination, medication management, home health and hospice, durable medical equipment, and telemonitoring and management, to personal care assistant service, such as those offered by homemaker and personal care agency services; home-delivered meals; home reconfiguration or renovation; transportation and more. Social services must also help their family caregivers, providing them training, respite, and support.

In the same way that pediatrics and obstetrics recognize that certain services are required to meet the unique needs of these phases of life, serving frail elders well entails an approach that proposes to make certain common sense modifications to the way services are delivered. This includes services that are paid for privately, publicly financed services provided by Medicare and Medicaid, those financed by the Older Americans Act and related state and community programs, and housing initiatives.

We term this approach MediCaring, which uses geriatric principles and palliative care standards and approaches – but expands to include a real focus on moving resources to cover essential social services. Imagine the elders described above. The first would have been referred to services to help pay for and modify the home to make it safe and accessible. The second would have had immediate access to nutritious, home-delivered meals.

At the same time, frail elders are likely to need help with medication management, and support for taking medications whenever a capable caregiver is not present, for instance, or a diet adjusted to fit whatever his or her personal care assistant can cook.  Elders and their families will surely need to consider how to handle the finances of long-term survival with worsening dependency, and how to deal with the next exacerbation of a chronic condition that could justify hospital care but might be better treated at home.

Some health information exchanges are beginning to include social services information –a major step forward.  All Area Agencies on Aging and Aging and Disability Resource Centers maintain a catalog of services in their community, though medical providers often do not realize just how valuable these services are.  As they are being developed today, community-based teams that are working to implement variations of the MediCaring model are also closely engaged in shaping the availability and quality of both health and social services – both  to arrange services for frail elders who need them, and to help set priorities for the most appropriate and cost-effective interventions available in their communities. It is a step forward—but we also need a leap.


Bradely, EH, and Taylor, LA. The American Healthcare Paradox: How Spending More is Getting Us Less. Academy Health Presentation, 2013. Accessed online at on April 24, 2014.


keywords: MediCaring book, Judy Peres, Judith Peres, Joanne Lynn, Janice Lynch Schuster

Jun 242013

by Dr. Muriel Gillick

A whopping 86 million Americans are family caregivers for an adult with significant health problems, according to a new report. Untrained, unpaid, and unlicensed, they take care of some of the sickest patients in the U.S.

Just under half of these caregivers provide complex medical care: this is a level of care that only doctors or nurses would be allowed to administer if the patient were in a hospital or nursing home. They supervise their family member’s medications, drugs that may have side effects so severe that patients taking them need to be hospitalized. They apply dressings to wounds, a procedure that is sometimes so painful that the patient has to take narcotic pain medicines beforehand. A minority even give intravenous medication or use equipment such as dialysis machines or ventilators that are customarily operated by specially trained professionals.

In the last three years, the percent of Americans serving as caregivers to an adult with health issues has gone from 27% to 36%, presumably related to the growth of the elderly population, the recession (which forced families to take on caregiving responsibilities rather than hiring outsiders), and the rise of chronic illness (fully 75% of older adults have at least one chronic disease such as diabetes or emphysema). The focus of the new survey is how these caregivers get the training they need to do their jobs.

The answer is both unsurprising and disturbing. When caregivers seek help, they rely heavily on a web search.

Caregivers often do consult a health professional—79% of them report they spoke to a clinician about their concerns. But they report wanting and needing much more guidance in carrying out their daily responsibilities. They say they use the internet to learn how to monitor drugs and how to diagnose and treat disease. What they uncover on the web ranges from sophisticated, up-to-date medical information to downright disinformation. Fortunately, a professional agrees with their diagnosis 41% of the time, according to the study. In the majority of cases, a clinician disagrees with the caregiver’s web-based diagnosis (18%) or the caregiver never seeks the advice of a clinician (35%).

It is time to recognize family caregivers as members of the health care team and make sure they get the right kind of training to do their job, just like their professional colleagues. To date, “caregiver support” has largely been psychosocial, intended to ease the stress that comes from taking care of a chronically ill relative an average of 20 hours a week. “Support” for the sophisticated role that caregivers often play, a role that is the key to optimizing medical treatment and minimizing hospitalizations, will require new resources. We need to be creative about designing these materials, recognizing that 60% of all caregivers have another job, usually full time. We will need to design videos and massive on-line courses (MOOCs) as well as how-to guides. The physicians who care for the frailest and sickest patients should take the lead: it’s what their patients need.

Dr. Muriel Gillick, is a geriatrician, a palliative care provider, and a professor at Harvard Medical School. She blogs weekly at Life in the End Zone ( She is the author of “The Denial of Aging: Eternal Youth, Perpetual Life, and Other Dangerous Fantasies.” This post appeared on her blog on June 24, 2013, and is reprinted with her permission.

key words: geriatrics, frail elders, family caregivers, caregiver support, Muriel Gillick, palliative care<