Oct 222019
Logo of National Community Care Corps

By Sarah Slocum, Altarum Program to Improve Eldercare

We live in a country of neighborhoods. Our geographic neighborhoods often bond around a common ethnicity, a religion, similar economic status, or a group of occupations or employers. In large cities, perhaps it’s a school district. Across urban, suburban and rural areas, these factors that identify neighborhoods and communities are part of what helps us define where we live. This is particularly true of many frail elders and people with disabilities who often manage their daily needs with help from informal networks of individuals living nearby. A new initiative, funded by the federal Administration for Community Living (ACL), will create a formal network of volunteers ready to provide supports at the community level.

This brand-new effort, the Community Care Corps, will work with local organizations across the country to identify and develop tools that will be available to anyone wishing to start or strengthen a formal network of local volunteers. The project aims to develop the methods to support and enable these neighborly arrangements and create a network of volunteers who provide non-medical support to older and disabled people living in our communities — thereby enabling them to stay in their homes and remain connected to their neighborhoods. The Community Care Corps will identify best practices, standardize elements of high-performing volunteer programs in many different types of communities, and make starting and sustaining a volunteer support program much easier for any local organization to accomplish.

ACL has awarded St. Louis, Missouri-based Oasis Institute a five-year grant, with $3,800,578 in first-year funding ($19.7 million over 5 years) to stand up the Community Care Corps. In partnership with the Caregiver Action Network (CAN), the National Association of Area Agencies on Aging (n4a) and Altarum’s Program to Improve Eldercare, Oasis will help to develop and refine innovative models for volunteers to assist family caregivers, older adults and people with disabilities. Oasis will serve as the administrator of the project, awarding grants to communities nationwide. Community organizations will propose various creative ways of serving different populations, and a range of non-medical services, such as food, transportation, and other supports. The four lead organizations are eager to see what innovations they propose.

“This is a unique opportunity for Oasis to embrace a new role on the national stage as a grant maker for innovative caregiving projects,” said Paul Weiss, president of The Oasis Institute. “As a pioneer in healthy aging for more than 35 years, we recognize caregiving as a challenge that impacts families in ways that can limit quality of life tremendously. We are excited to be partnering with some of the most knowledgeable organizations in this sector to encourage creative approaches that can improve the lives of those who find themselves in the position of providing ongoing care for loved ones.”

Oasis will disseminate an RFP through multiple channels in late 2019, with anticipated grant announcements for the first year of funded pilot programs to be announced in spring 2020. Local funded programs will implement innovative approaches to recruit, train, and sustain volunteers who will provide neighborly help to disabled adults and their experiences will generate a toolkit of best practices for use nationwide.

“Volunteers have long played a key role in the reach and success of programs and services supported by the aging and disability networks,” said Edwin Walker, Deputy Assistant Secretary for Aging at the Administration for Community Living. “ACL is pleased to have this opportunity to further strengthen the important role of volunteers and looks forward to working with the Oasis Institute and its partners to achieve this goal.” An excellent article in the Kaiser Health News details this national initiative.

A local project is already underway in Livingston County, Michigan, where Livingston County Catholic Charities (LCCC) and Altarum are working to expand and update their volunteer services to elders and people with disabilities in their homes. LCCC was awarded a one year grant from the Michigan Health Endowment Fund to create a toolkit that will be available to any other organization that wants to set up a similar program to provide transportation, shopping, light housekeeping, companionship, and a number of other non-medical services to community members in need. LCCC is already well known for their volunteer services and this Care Corps project will enhance their ability to expand and provide more volunteer hours of service, as well as formalizing their volunteer recruitment, training, and retention strategies. The LCCC/Altarum project is one example of the type of community based effort Altarum will evaluate local efforts and will help identify best practices and ideas that are ripe for replication. The experience of people receiving support will be crucial in identifying the most effective strategies for delivering non-medical support and volunteers will be able to tell us a great deal about how well the program meets their needs. We expect many different and creative models arising from local projects and do not expect one model to fit all locales. As with the particular identity of a neighborhood, groups of volunteers and care recipients will have varying cultural and geographic characteristics and the Community Care Corps in their area will need to meet those needs.

The Community Care Corps is arriving at a time when a shortage of paid caregivers is putting a lot of pressure on community based care systems. Many service providers already report great difficulty filling jobs and retaining workers to provide care. Some worker advocates view volunteer efforts as competition, but the Community Care Corps partners see the roles volunteers will fill as part of a set of solutions that will support family caregivers and perform certain tasks that will lighten the load on paid caregivers. The same groups setting up the Community Care Corps are also highly interested in better wages, training, and career opportunities for direct care workers. Pursuing improvements in both the paid and unpaid caregivers’ situations will relieve some of the pressure on systems that will only intensify as our nation ages and more and more of us need care.

The Community Care Corps request for proposals will be available later this fall. What can you do? Make sure your local volunteer organizations know about this opportunity and encourage them to apply. Organizations that want to apply or would like more information should sign up for communications for an announcement by clicking here.

Once the first round of projects start, make sure elected officials know about this great innovation happening in their district and are invited to visit with volunteers and the organizations that support them. Speak up publicly to state and federal officials about the need for renewed social structures that promote neighborliness.

We can’t wait to get started!

Oct 182018
Portrait of Dr. Joanne Lynn
Dr. Joanne Lynn, MD

by Joanne Lynn

Our aging society is a mountain to be moved – a large collective challenge we have to tackle together. Problem is, right now we’re using shovels when bulldozers would hardly do the job.

The mountain is reforming how eldercare is delivered and funded. We’ve allowed so many forces to converge over the years in a payment-driven, provider-centric framework, that we’ve managed to create a grim future for the last phase of aging. Most of us will have at least a couple years of self-care disability in the last years of life, no matter how healthy our life styles may become. While “healthy aging” is a terrific idea, it is one that eventually fails in most lives, simply because some form of frailty will still disable us, for a long time, and presage death.

Families are smaller, older, and more dispersed – there is often simply no one able to provide free care at home. Retirees have ever lower savings and insurance, overwhelmingly too little to pay for an expectable range of personal care. Medicaid is stretching state budgets and many more are set to spend down to eligibility. Communities have no entity actively monitoring and managing the performance of their unplanned and poorly coordinated eldercare arrangements. Serious illnesses and disability in old age is the dominant cause of family impoverishment and bankruptcy. Paying current per capita costs by raising taxes is not plausible by the mid-2030s [National Research Council. 2012. Aging and the Macroeconomy: Long-Term Implications of an Older Population. Washington, DC: The National Academies Press. https://doi.org/10.17226/13465] – we will find ourselves balancing crippling the economy with abandoning dependent patients. Being able to support an expansion of public services and supports to accommodate more elders in need depends upon a thriving economy, and that depends upon highly productive young adults. Yet we now have half of children born into poverty and we tolerate high rates of young adults being unprepared for productive work.

Many issues compete for our attention. Why bother with dealing with old people? Two pragmatic reasons: old people and their children vote, a fact that makes it unlikely that elder care issues will be abandoned; and all of us will eventually join that cohort, a fact that makes it everyone’s issue. Furthermore, we really are part of a community, and we really won’t be able to ignore a retired school teacher’s homelessness, the gnawing hunger and painful isolation of a former jazz musician. Our better natures will require making basic needs available on a reliable basis.

In 2016, our team at Altarum worked with other national partners to push for caregiver planks in state and national party platforms — 11 states included a plank as well as having the issues show up for the first time in both Democratic and Republican national platforms. [Scribner, B. et al. (2017). Creating A Nationwide Nonpartisan Initiative for Family Caregivers in Political Party Platforms. J Am Geriatr Soc, 65: 1126-1131. doi:10.1111/jgs.14814] A key finding of voter polling work in this project was that voters of all political persuasions are energized and passionate equally about the needs of caregivers and supports that ought to be made available to families.

But how? The costs look to be overwhelming. The effects upon the economy and the opportunities for younger persons look to be disastrous. It is so much easier to duck and run – answer to the immediate issue but make no fundamental changes. There’s a better way.
Our arrangements for medical care assumed that people are mostly healthy and on their own, and from time to time they need medical care to return them to health. In frail old age, the question is not mostly to “fix it” but to “live well with it.” In this setting, continuity, care planning, and caregiver support matter – three elements that are mostly missing in our current health care. We need to dramatically reorganize health care to require these elements as essential in elder care.

What happens to support frail elders depends critically upon the arrangements for support in their geographic community. Is disability-adapted housing available and affordable? Can you get appealing and affordable home-delivered food? Is there an adequate workforce skilled in handling personal care at home, even for persons with dementia and persons who are difficult to serve? Do the dominant employers provide flexibility for family and volunteer caregivers? Are there volunteers organized to fill in most “instrumental activities of daily living,” such as minor home repairs and delivering food? Perhaps most important, is there an entity with the responsibility to address these issues – to monitor performance in that community and take steps to improve it?

With many communities doing this, communities would be able to benchmark performance and manage the arrangements in their community. Lots of independent businesses would still thrive, but collective action would also be possible and practices that distort service availability or quality could be constrained. Altarum developed a Financial Forecasting Tool [https://medicaring.org/2018/07/24/mcforecasting/] that can help communities understand the resources they already have — medical and health services, social services, community volunteer organizations, and others — and quantify the possible savings a reformed system of eldercare can produce. There is a lot of money being spent in the period when elderly persons live with serious disabilities, but it is not being used in planned, efficient, person-centered ways.

This is a more fundamental reform than just moving medical care to the home or providing coordinated post-hospital care, or whatever combination of currently “evidence-based” improvements you prefer. This is making some part of elder care into a public concern, managed at the community level. It is not just for dual-eligible elders, it is not just for persons who run up high bills, and it is not just for persons with particular diagnoses. This reform is for us all. We’ve called it MediCaring Communities. [https://medicaring.org/book-online/]

We must work on financing and service delivery at the same time. If we started now to build private savings for long-term care (through savings accounts or insurance), we’d have capital to stimulate the economy as well as less demand for public funding in fifteen years. Having a federal back-stop on long term care costs would create a vibrant marketplace for long-term care insurance. Professionalizing assistance with personal and supportive care would create better paying jobs in the care sector and these professional caregivers would be able to build a new middle class around eldercare professions, thus boosting, rather than draining, local tax bases. Planning for the whole populace also requires substantial reinvestment in ensuring that our children come into adulthood as highly productive citizens.

This is our opportunity time. If we buckle down and enable substantial innovation in some counties and cities, we’d learn what’s possible and other counties and cities would follow suit. We urgently need an era of profound and far-reaching innovation and learning. What can you do make it possible to overthrow the status quo? Be in touch with one another and with us – let’s dramatically increase the pace of improvement and build an elder care system that is highly reliable and efficient and build it in time to accommodate the rising numbers of disabled and frail elders.

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 www.caredocumentary.com 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.

Jun 202016

MediCaring Communities: Getting What We Want and Need in Frail Old Age at an Affordable Cost
Published June, 2016
194 pages, 6″ x 9″ (15.24 x 22.86 cm)

ISBN-10: 1481266918

List Price $9.95 at Amazon.com

Americans want a long life and most of us will get to live into our 80’s and beyond, but we have not squarely faced the challenges of living well in the last years of long lives. This book lays out a thoroughly pragmatic way to organize service delivery and financing so that Americans could count on living comfortably and meaningfully through the period of disability and illness that most will experience in the last years of life – all at a cost that families and taxpayers can sustain. MediCaring Communities offers to customize care around the priorities of elders and their families and to manage the local care system so it is reliable and efficient.

MediCaring Communities book cover

MediCaring Communities book (click cover to view on Amazon.com)

Three out of four of us will need long-term care. The period of needing someone’s help every day now lasts more than two years, on average. Most of us will not have saved enough to get through this part of life without financial help from family or government – indeed, we’ll spend almost half of our total lifetime healthcare expenditures in this last part of life, mostly on personal care that is not covered by Medicare. We have not yet required housing to be modified for living with disabilities or secured a ready supply of home-delivered food, and we certainly have not required medical care to focus on the patient and family priorities in order to enable the last years to be meaningful and comfortable. Family caregiving will be a crisis as families become smaller, more dispersed, older, and facing inadequate retirement income for the younger generation.

MediCaring Communities improve care by building care plans around the health needs and living situation of the elderly person and family, and especially from respecting their choices about priorities. The improvements in service delivery arise from integrating supportive services at home with customized medical care and installing local monitoring and management. The improvements in finance arise from harvesting savings from the current overuse of medical tests and treatments in this part of life. These come together in MediCaring Communities.

Strong evidence supports each component, but the real strength is in the combination, where savings support critical community-based services, communities build the necessary environment, and elders and their families craft their course with the help of interdisciplinary teams. This book lays it out, using expansion of PACE (The Program of All-Inclusive Care of the Elderly) as the test case. The book provides a strong and complete guide to serious reform, and just in time for the aging of the Boomers which will escalate the needs dramatically during the 2030’s. Now is the time to act.

You can read extracts online.

Advance Praise for MediCaring Communities

“For decades, Joanne Lynn’s has been the clearest, strongest, most soulful voice in America for modernizing the ways in which we care for frail elders. This essential book is her masterpiece. It offers a magisterial, evidence-based vision of that new care, and an entirely plausible pathway for reaching it. Facing a tsunami of aging, our nation simply cannot afford to ignore this counsel.”
—Donald M. Berwick, MD, President Emeritus and Senior Fellow, Institute for Healthcare Improvement, and former Administrator, Centers for Medicare & Medicaid Services.

“MediCaring Communities integrates good geriatrics and long-term services and supports, and building upon an expanded PACE program can be a tangible start. We should try this!”
—Jennie Chin Hansen, Lead in Developing PACE; Past President, AARP; and Past CEO of On Lok Senior Health Services and the American Geriatrics Society.

About Joanne Lynn

Joanne Lynn, MD, MA (Philosophy and Social Policy), MS (Quantitative Clinical Sciences), is Director of Altarum Institute’s Center for Elder Care and Advanced Illness. Dr. Lynn has served thousands of persons in their last years of life in home care, office practice, hospice care, and nursing homes. She was one of the first hospice physicians in the United States. Dr. Lynn has been a tenured professor at Dartmouth and George Washington University, a quality measurement expert on the staff at the Centers for Medicare & Medicaid Services, the Bureau Chief for Cancer and Chronic Disease in the public health office for Washington (DC), a senior researcher at RAND, and on the Institute for Healthcare Improvement’s quality improvement faculty. She is a member of the National Academy of Medicine, a Master of the American College of Physicians, a Fellow of the Hastings Institute and the American Geriatrics Society, and an author of more than 280 peer-reviewed publications, 80 books and chapters, and a dozen amicus briefs and publications for public commissions.

The reader can learn more about our work and give us advice and insights at MediCaring.org.

About Altarum Institute

Altarum Institute (Altarum.org) is a nonprofit research and consulting organization based in Ann Arbor, Michigan. Altarum integrates independent research and client-centered consulting to create comprehensive, systems-based solutions that improve health. One focus has been addressing the challenges of living with advanced illnesses and disabilities in old age through the Center for Elder Care and Advanced Illness. The dozen staff at the Center aim to help the United States achieve social arrangements that ensure that, when we must live with serious chronic illnesses associated with advancing age, we can count on living meaningfully and comfortably, at a sustainable cost to our families and society.

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: http://bipartisanpolicy.org/library/long-term-care-financing-recommendations/
Read the LeadingAge Pathways Report here: https://www.leadingage.org/pathways/
Read the Long-Term Care Financing Collaborative’s report here: http://www.convergencepolicy.org/ltcfc-final-report/
Read the Health Affairs article on the modeling here: http://content.healthaffairs.org/content/early/2015/11/13/hlthaff.2015.1226
View the Energy and Commerce Committee hearing “” and read testimony here: https://energycommerce.house.gov/committee-activity/hearings/hearing-on-examining-the-financing-and-delivery-of-long-term-care-in-the and

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.”


[1] http://www.aarp.org/relationships/caregiving/info-07-2011/valuing-fs.html

[2] http://www.caregiving.org/research/general-caregiving/

[3] https://www.cepr.net/documents/publications/paid-family-leave-1-2011.pdf

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