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: 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

May 192014

Despite surveys that indicate our overwhelming preference to grow old and die in our own home, those among us who grow old and frail are more likely to live in many different settings. The likelihood that we will face old age encumbered by multiple complex health conditions makes it very likely that we will, at one time or another, need care provided by an array of long-term care services and supports. If we hope to stay at home—or, at least, stay in the community—we will need services that support some degree of independence, and help up to fashion security for our finances, as well as our food, transportation, housing, and more. We will need health care, to be sure, but we will need much more—and much more than we needed during the phase of life when we were simply independent adults.

In the aging services world, the goal has long been to provide care in the least restrictive possible environment. With this aim in mind, aging services rely on community-based services which provide an array of services (e.g., not nursing homes and hospitals) that help maintain a person in their own home. These other services are rich and diverse, and include community-based group living arrangements, such as congregate housing; adult foster care residential and assisted living facilities; and community settings, such as adult day care and adult day health.

Community services include:

• care coordination/case management
• personal care assistant and attendant services
• homemaker and personal care agency services
• home hospice
• home-delivered meals
• home reconfiguration or renovation
• medication management
• skilled nursing
• telephone reassurance and monitoring services
• technologies that promote connectivity, monitoring, and telecare
• emergency help lines
• equipment rental and exchange
• transportation.

Community services often include educational and supportive group services for individuals to encourage self-care management, as well as their informal caregivers. In fact, caregiver education is positively associated with the care recipients health and quality of life.

Community services provide respite care to spell family caregivers. Friend and family caregivers are considered part of the focus for MediCaring services, and their involvement is a critical element of MediCaring, which is premised on targeting frail elders who have functional impairment to meet their specific needs.

MediCaring would center on a comprehensive care plan, which would be developed in concert with elders and their caregivers and the MediCaring team.

Today, many community services are in a state of flux; it is not entirely clear how patterns will emerge as Affordable Care Act (ACA) incentives and programs are implemented. However that plays out, there is a growing body of literature that indicates that frail elders at risk of institutionalization can successfully be served in the community. To this end, MediCaring promotes co-location of multiple services under one management unit to help harmonize needed services.

In the near future, we are likely to have computer applications that allow broad and rapid communication about available services to those involved in care planning. In such a system, a MediCaring team could see any number of factors that influence care decisions: the currently available rooms, services, consumer reviews, quality metrics, bus stops nearby, specialist nurse or physician availability, pharmacy response time, and dozens of additional elements in deciding the best and safest place for a person to live.

Any member of the MediCaring team could use the care plan as the basis for coordinating what frail elders and their caregivers need. Services would be flexible in design and delivery: if a team member noticed that outdated pills were causing delirium in a MediCaring member, that team member would be able to contact the appropriate clinician immediately to change course.

MediCaring follows the goals of enrolled elders and their families to help improve, modify, and maintain the optimum level of functioning for each. MediCaring communities will assess their regional resources and demands, while also providing an array of supportive and caring services, assuring continuity of care and following the comprehensive care plan.

key words: medicaring book, joanne lynn, janice lynch schuster, community-based services, frail elders

Apr 282014

 For most of us, for most of our lives, healthcare involves doctor visits for routine and acute care, and sometimes visits to specialists when dealing with complex or advanced illness. To be sure, many of us also find health and healing beyond the walls of a clinic or the contents of a medicine cabinet—attention to diet, exercise, spirit and community can also strengthen us. For the very old, the very frail, managing health becomes less a process of preventing and treating illness, and more a concern of maintaining function and enjoying quality of life. To this end, very frail adults often shift focus as their needs and situations change. And while medicine remains part of the equation, other services become tantamount: long-term care, for instance, as well as good nutrition, access to affordable and safe housing, reliable transportation, and ways to remain connected with the larger community.

MediCaring Communities will work to meet these needs by helping to align the needs of frail elders and their families with the mix of health care and social services a community can provide. The MediCaring model would ensure that all members of a multidisciplinary team would know all enrolled individuals: these individuals and their families would be real to professional caregivers, who would understand their situation and priorities, in part, through the presence of a comprehensive care plan.

The MediCaring model includes all covered services under Medicare and Medicaid.  However, by working with elders and their families to understand the realities of what they face, the benefits and costs of treatments, and strategies to achieve goals and priorities, MediCaring elders may be less inclined to opt for very expensive and burdensome medical treatments and more likely to choose options that enhance quality of life, maintain comfort, and ensure dignity. The MediCaring model would not bar choices or limit access; rather, it would aim to ensure that elders and family members clearly understand the degree to which a treatment or procedure will offer any help, and the costs (i.e., physical, emotional, financial) of pursuing it. Elders would never find themselves barred from medical treatments that they want. Rather, they and their families would be part of an informed and thoughtful decision-making process and able to understand and decide which treatments and procedures to pursue, and which to avoid.

The following list highlights key characteristics of a prototypical MediCaring community.

Multidisciplinary Team. A multidisciplinary team whose sole focus is frail elders will coordinate person-centered care in the community. Teams would include clinicians and practitioners trained and skilled in diagnosis and treatment; medication management; rehabilitation; self-care; nursing care; mental health; caregiver assessment, training, and support; nutrition; community services; and housing.  Teams would include a physician, nurse, and social worker, as well as ongoing and reliable access to pharmacists, rehabilitation specialists, mental health experts, housing services staff, caregiver support personnel, and legal advisors. The team’s capabilities and functioning would be measured and certified as meeting standards that reflect well-coordinated care, rather than adherence to a requirement for certain disciplines doing certain tasks.

Care Plans. The MediCaring team will work with elders and their families, and with one another, in developing comprehensive care plans. The local authority charged with implementing MediCaring would ensure that adequate and appealing community resources were available to meet the many needs elders have, including the need for services such as hospice and palliative care. The scope of care planning must respect limits that the person or surrogate prefer, while also addressing any issues that arise in terms of particular services, e.g., housing, finances, caregiver support, medications, and various therapies.

Primary Care. MediCaring builds on and ensures primary care for elders who live with advanced, serious, and complex conditions. Primary care for frail elders is not primary care as usual–doctor who provides routine prevention, chronic disease self-care education, and coordination of services from specialists. Rather, this is primary care writ large, responsive and responsible in recognizing and meeting the array of physical, psychosocial, and spiritual needs elders and families encounter. Although MediCaring builds on geriatric principles and palliative care standards and approaches, it is not limited to simply medical aspects of care for frail elders.

Continuity of Round-the-Clock Services. MediCaring includes continuity of services across time, settings, and providers, with round-the-clock coverage and real-time availability to the elder and  his or her caregivers. A MediCaring team would be charged with providing medical and nursing advice and support. In the case of an urgent phone call (or text or email) with a pressing health concern, a team member with appropriate skills for the problem would respond within ten minutes. Ideally, the team member on call would know the elder and caregivers, and would always have immediate access to an up-to-date care plan.

Home Visits. Very frail elders and their caregivers can be taxed and stressed by the challenge of simply getting to a physician’s office. Whenever feasible, urgent home visits to assess emerging situations should occur within three hours of a call (or, in rural or remote areas, telemedicine should be used). The process of developing care plans for MediCaring elders should include honest and forthright understanding about when and if to call 911, or to go an emergency department. For frail, homebound elders, many technical and supportive services, built on a competent physical examination, can be safely done where the elderly person lives, including simple diagnostic x-rays and imaging tests, blood and urine tests, skin biopsies, electrocardiograms, and more. This spares frail elders the difficulties and sometimes trauma of being moved to another setting simply to receive good care, especially when that care can so effectively be delivered to them. Home visits are a wise, safe, and effective alternative to preventing or delaying hospitalizations and nursing home placements.

Comprehensive services. In some cases, urgent issues created by crises of housing, nutrition, transportation or family caregiving arise, and, unchecked, can have a significant effect on health. MediCaring will focus on preventing such crises by having a sort-of disaster preparedness approach to frail elders: direct care workers will be on standby to cover a caregiver crisis; safe housing will be readily available for emergency placement; short-term funding will be provided for heat or air conditioning needs; reliable and safe transportation will be available for necessary appointments and other responses for addressable issues. Addressing the social determinants of health ensures an approach that avoids the current challenges many frail elders and their families endure.

key words: MediCaring book, Janice Lynch Schuster, Joanne Lynn, eldercare

Jul 172013

Testimony of Joanne Lynn, MD, MA, MS
Director, Center for Elder Care and Advanced Illness
Altarum Institute

For the Commission on Long-Term Care

July 17, 2013

Hearing on Populations in Need of LTSS and Service Delivery Issues

Good afternoon, members of the Commission. I am Dr. Joanne Lynn, and on behalf of the Center for Elder Care and Advanced Illness at Altarum Institute, I am pleased to be invited to contribute to this pivotal national discussion of how we can come together to transform our health and long-term care systems to achieve reliable care at a sustainable per capita cost.

As a geriatrician, researcher, educator, public health official, and Medicare medical officer, I have served thousands of very ill elderly people in various settings, including their homes. Having also served public policy at the federal and local levels, I understand various perspectives on the health care issues that face frail older adults in our society. And as an old person in training, I have some perspective on what my own future holds in this regard. Indeed, most of us in this room will live to become frail when we are old. Some will succumb to cancer or another disease that shortens life — but most of us will live into our 80s, 90s and perhaps even beyond. During that phase of life, we will experience a trajectory of increasing disability and frailty – enjoying all we can of life despite various illnesses, worsening muscle weakness and a gradual decline of overall reserves. And half of us will also struggle with cognitive impairment. We will have years of depending on others for help with our daily care.

As matters stand now, care provided to frail elderly persons is usually poorly planned and regularly inflicts inappropriate services, unnecessary and unwanted treatments, and overwhelming personal, financial, and emotional costs.

So how can we change our own futures? Not by relying on federal resources alone, or state resources alone. And certainly not by expecting that each individual has to figure it out for himself or herself. Too many people are already too old or too poor to save enough, and the system is too complicated. Any one of those approaches, by itself, ensures failure. And failure would mean crippling costs or abandonment – both even more serious failures.

Simply put, services for frail elder persons, individually and as a group, need to be planned far better than they are currently— which, in many instances, is that there is no planning at all. Most things that go wrong are predictable and many are preventable — and nearly all can be improved with forethought. Now is the moment for us to review, confirm and, organize what we know, and make the greatest possible use of our combined federal, state, local, private, and volunteer resources.

My experience working with patients, care teams, and communities aiming to improve care for frail elders has taught me much, but this in particular: This country can do better. Those who are involved in serving frail elderly people should be expected to (and freed to) implement best practices in geriatrics and to use insights from gerontology research. We have models of care that meet the needs and reflect the priorities of frail elder people; but tradition, habits, rules, and incentives keep us mired in dysfunction. We do not even have the practices and rules that call for clinicians and frail elderly patients and their families to come to understand the patient’s situation and what lies ahead.

A major opportunity lies in having some community-level management of the delivery system for frail older people. Frail elder persons are highly dependent on what their immediate community can offer. If someone needs to be spoon fed, for example, that person will not be able to travel somewhere to obtain that assistance. They have to stay home, wherever that was, and wait for health and long-term care services to come to them. We need to be efficient in the way we provide these and other home-based services.

That strategy starts with acknowledging — using as a vehicle, a carefully designed, comprehensive care plan — that people in the latter phase of life have priorities that are quite different from those held by people in this room. As we approach the end of life, we will value relationships and shun isolation; we will value keeping control of what we can manage and we will disdain being regimented or warehoused. We will also seek comfort and reliability and we will certainly want to avoid disruptive or painful interventions. We will not generally be eager to leave this life, but most of us will have come to terms with the fact of our mortality.

Contrast this vision with the care system we have today, which is structured around the hopes and fears of middle-aged men and women: ready access to emergency services and dramatic medical interventions. But what we now need — immediately — is to build a care system that takes into account the hopes and expectations of an 88 year old person who is living alone with disabilities and other limitations.

A care plan to meet the needs of most people in this room could be fairly simple; but the plan that is needed when you are frail and disabled is usually complicated and must take many disparate factors into account. Most of the services that younger adults seek and receive reflect a single symptom or diagnosis.

In old age, waiting to react reflects poor planning and inadequate knowledge and yields suffering and costs. For a 92-year-old man to show up at an emergency room where no one knows his situation, preferences, or plans indicates a thoughtless lack of planning. For that same man to show up at his physician’s office where no one knows his situation, preferences, or plans is thoroughly outrageous. Yet, that’s the standard. We don’t even have a way to put a comprehensive care plan into our evolving electronic health record system.

Meaningful use requirements for hospitals and physicians to earn financial support for electronic health records do not require documentation of function, likely future course, or care plans. We don’t have any way to measure the quality of care plans against outcomes – even though, for frail elderly people, this is nearly all that matters: are we serving the person’s priorities effectively? The most important outcome in frail elder persons — from their perspective — is how you can live in the life remaining.

Today, a physician can order up any treatment or test for a frail elderly patient, with virtually no regard to cost. Yet, we cannot get a home health aide to keep the person clean, or a good nutritious meal, or a place to live, thus saving a huge amount in medical costs down the road, unless we place the patient in nursing home facilities and the like. This has to be the most expensive scheme for supporting housing, food, hygiene, and personal care that one could imagine, and it has been the source of all manner of dysfunction. Virtually every other country, even “underdeveloped” ones, provide housing and food for its disabled elderly persons, but we do not. Virtually every other country provides support for family caregiving, but we provide so little that you can hardly see it.

In fact, we begrudge providing social support services, leaving them as a set of poverty programs that come and go, causing service gaps and frustration, while we treat medical services as an open-ended entitlement. This pattern does not match the needs of frail elders now, and unless we do something about it, the mismatch will become extremely severe and the consequences extremely expensive, as the number of frail elder persons in this country rise.

For those who continue to hope that the family can step in to save the day, the facts are against you. We will have too few 21st century family caregivers, and they will often have to work or will be disabled themselves. Similar to the declining ratio of workers to retirees, the number and availability of family caregivers will decrease dramatically during the coming age wave.

The budget-focused proposals that are now circulating in Washington seem to presume that the main strategy is to get the financial incentives right in Medicare and Medicaid. The prevailing wisdom seems to be that, if we can just get the financial incentives right, the clinical service array would follow. This is implausible, both in terms of logistics and cost.

Instead, this Commission must be more direct in working to reshape the existing service delivery system. We should talk, for example, about how we can enable local governments, public health offices, coalitions of providers, and Area Agencies on Aging to take a leading role in measuring and managing the supply and quality of services for all frail elderly residents across each community. That care, like so much in life, is — and must be — local.

This type of community-based planning could readily be implemented on a broad scale. Once we require good care plans for every frail elderly person, a local coalition or agency could monitor performance by aggregating and geo-mapping the service needs from those care plans. This would make it easy to see where the community has undersupply, oversupply, or poor quality; this would pave the way for efficient action to optimize services. We would see, for example, that it is not efficient to have multiple home care agencies traveling across a metropolitan area twice a day to serve clients who live in adjacent apartments. At Altarum Institute, we are working to establish multi-disciplinary networks of providers in urban and rural communities who can follow each frail older person’s unique care plan, and who will be accountable for meeting quality measures.

For your consideration, we’ve developed some achievable policy recommendations. I won’t go through them now, but am happy to take questions now or to have follow-up conversations. We wish you the greatest success possible in the short time you have, and hope you will count on us to serve as full and enthusiastic partners in our mutual quest to improve long-term care.

Thank you.

Recommendations to the Long-Term Care Commission from Altarum Institute’s Center for Elder Care and Advanced Illness

Recognizing that the Long-Term Care Commission is charged with advancing policy recommendations to improve the coordination and quality of care and the competency and quality of the workforce, we suggest that the Commission consider making strong recommendations in the following areas:

1. Quality/coordination of care metrics for physicians should be broadened to incentivize, and then require, comprehensive care planning for frail elders;

2. Direct care workers should be given a fair deal on income, access to their own health care services, solid baseline training, and ongoing opportunities for further education and expansion of skills;

3. Family caregivers should be provided with both general guidance and hands-on training about how they can — if they agree to do so — provide supportive services to an ill or disabled loved one and given access to their own respite services.

4. Communities should be allowed and enabled to take on some monitoring and management of their elder care system, including hospitals, housing, care at home, rehabilitation, hospice, transportation, nutrition, and other essential needs. To do so requires standardization and availability of some data sets and re-examination of the role of geographic concentration and provider competition.

More specific ideas to achieve the four broad goals outlined above include:

Quality/coordination of care

* Recommendation to HHS to give higher updates under a reformed Sustainable Growth Rate (SGR) physician payment system to practitioners who can demonstrate that they (1) have comprehensive care plans for more than 50% of their patients who are over 80 years old or who have disabilities; (2) are providing continuity of care across settings to more than 70% of their patients; and (3) ensure that an appropriate clinician follows up within 24 hours of when a new issue arises for a disabled patient living at home or in a nursing home.

* Recommendation to the Office of the National Coordinator (ONC) for Health Information Technology to provide, as part of implementing “Meaningful Use” Stage 3 standards, an optional place for recording care plans in the electronic health record. Thus, practitioners and providers who are serving frail elders will at least have a place to record the plan and help move it across settings of care. This recommendation could also ask ONC to work with the Agency for Health Research and Quality and the Centers for Medicare and Medicaid Services to standardize some elements of the care planning process, the care plan documentation, the continuity of care plans across settings of care, and the evaluation of the performance of care plans.

* Recommendation to HHS, in consultation with outside experts, to identify a set of core quality care measures for persons who need long-term services and supports — a set that encompasses process, outcomes, and quality of life measures, which includes measuring whether the services helped the patient achieve important goals. This could be combined with a requirement for HHS to examine core quality measures for long-term services and supports that are collected by states from contracting providers as part of reviewing and approving Medicaid waivers and demonstrations, and for all programs serving dual eligible persons.

* Recommendation to HHS to develop a new option under Medicare and Medicaid for frail elder persons, in consultation with the Administration for Community Living, to establish a coordinated services delivery and payment reform model similar to ACOs, which explicitly requires including providers of long-term services and supports (including those offering options for counseling, housing assessments, nutrition services and transportation). Approved entities would provide services within defined geographic areas and include aging services network providers and relevant community-based organizations, as well as medical and nursing services.

Direct care workers

* Recommendation to the Obama Administration to issue a final rule broadening Fair Labor Standards Act protections to include personal and home care aides; prompt evaluation and widespread dissemination of the “best practices” training programs that have been developed under the Personal and Home Care Aide State Training Program (PHCAST), along with seed funding for Sec. 5302, Subtitle D, of Title VII of the Public Health Service Act, which provides tuition assistance for direct care workers seeking to expand their skills.

Family caregivers

* Recommendation to Congress to require standardized assessments of all family caregivers who seek assistance for themselves or their loved ones through Area Agencies on Aging, Aging Disability Resource Centers, and Medicaid home and community-based waiver and demonstration programs; such assessments would include asking the family caregiver which services (e.g., respite, lifts, monitoring devices) would be most helpful.

* Recommendation to the Institute of Medicine to undertake an analysis of what kind of training and support would most benefit family caregivers who commit to caring for ill and disabled loved ones in a safe and voluntary manner.

* Recommendation to Congress to establish a “Caregiver Corps” of community-based volunteers (ranging from young college graduates to retired adults) who could be screened and trained to provide assistance to homebound frail elders in need of assistance with Instrumental Activities of Daily Living (e.g., chore services, shopping and household management) as a way of contributing to the community’s welfare, in return for a very modest stipend, credit, room and board, or other return.

Community monitoring and management

* Recommendation to HHS (CDC, CMS and AHRQ) to cooperate to develop public health metrics by geographic area for frail elders, so that trends can be monitored and priority needs identified at a community level.

* Recommendation to HHS (Medicare and Medicaid Innovation Center) to provide technical assistance to communities that are willing to learn how to monitor and manage a care system that is reliable, efficient and sustainable for its population.

* Recommendation to HHS to provide technical assistance that enables shared savings among practitioners and providers willing to contract to serve a targeted population such as frail elders on an ACO –like model for communities that excel at high-quality services, delivered efficiently.