Sep 252017
 
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)
Dr. Joanne Lynn

by Joanne Lynn

Let’s try a thought experiment.

Imagine that the government assembled a “Medicare Design Commission” that includes not only the usual assorted experts, but at least as many 88-year old women living alone on Social Security in second floor walk-ups, aiming to have them represent the target population of elderly people coming to face the multiple challenges of disabilities, caregiving, and finances. What would emerge as the top priorities for an insurance plan? (Spoiler alert: It would look a lot different from the way Medicare looks today.)

Over the past few years, I’ve polled dozens of audiences on this question. Here are some of the most common rapid responses: dental care, eyeglasses, hearing aids, and podiatry. Accessible affordable housing, transportation, and nutrition services then come up, and many audiences branch out to other social supports — often respite care and help for family caregivers. Then there’s personal care, like help with bathing and with meals, and assistance with shopping and bills and cleaning. Sometimes medications are mentioned. Asked about hospital services, emergency care, and various medical procedures, many in the audiences seem perplexed. Yes, obviously, these need to be covered, but maybe they are not as highly prioritized by elderly people living with multiple chronic conditions and worsening disabilities. Sometimes someone calls out something like, “Save us from doctors!” Yet, Medicare covers those medical interventions and drugs, and none of the other things so readily listed.

When Medicare started, the average age at death was still under 70, and the usual causes were fairly abrupt – heart attacks, strokes, infections. Now, death comes, on average, nearly a decade later, and the usual experience of the last years of life is one of slow decline with substantial self-care disability. Nearly half of us will have cognitive failure in advanced old age[1]. Most people who live past age 65 will have two years or more of needing someone else’s help every day[2]; some will need that help for a decade or more. This is the major cause of personal bankruptcy now. This is the major exploding element in state budgets, as so many people need Medicaid for their long-term care expenses.

Yet, we have not generated a serious and creative discussion of how to support one another in old age. The current cohort of retirees does not generally have savings or insurance to cover their own costs, and the Boomer generation now coming to retirement is even worse, with few pensions, retirement savings lost in the 2008 recession and other stresses, and small and dispersed families unable to provide unpaid care. Older Americans Act funding has been stagnant for years [3], so waiting lists for food delivery are common, and many other supportive services are only occasionally available. Singapore in 1985 mandated that new buildings be adapted for disability living [4], so a person in a wheelchair there has housing options that elderly disabled Americans do not have.

Today, physicians can order up a drug or treatment regimen that costs $100,000. But they can’t order home-delivered meals, or suitable housing, or a hearing aid.

The fact is, Medicare needs some updating. And this invaluable bedrock social insurance program needs to be intelligently adapted and made more flexible so that it can work much more seamlessly with other programs that offer key services – like safe adapted housing and low-cost services that can be delivered at home. These are fundamental to keeping elders out of crisis and preventing elders from cycling repeatedly through costly care settings. The Senate has crafted a solid start – the CHRONIC Care Act (S. 870), which, with luck and some bipartisan cooperation, could be approved later this year. On the administrative front, a more flexible regulatory approach for the Program of All-Inclusive Care for the Elderly (PACE) could enable comprehensive and affordable care for disabled elders, including Medicare-only beneficiaries, who need both medical services and long-term care. Click to see our PACE analysis

The Center for Elder Care & Advanced Illness (CECAI) is calling for testing of a solid, evidence-informed model of care that would free communities to take an active role in monitoring and managing a good eldercare system: MediCaring Communities[5]. (Think “Villages” that are more ambitious and that are designed to take responsibility for all elders across a given area.) For a fast-growing population of elders living with worsening disabilities, the community where they live is their most important resource: It is where they find – or do not find — housing that is suitable for their limitations, home-delivered meals, subsidized accessible transportation, reliable personal care, appropriate medical care and support for family caregivers. Unlike many other countries, the U.S. doesn’t have a tradition yet of giving local communities a major role in ensuring the adequacy of eldercare services at a reasonable cost. The time has come to reconsider.

Multiple studies have already shown reduced use of hospitals and medical interventions from honest and comprehensive care planning, reliable around-the-clock support, and appropriate medical care[6]. If some of the savings from avoided costs on the medical services side of the ledger can be made available for services that communities need to buttress supportive services and the local care workforce, then we would be able to engineer more comprehensive reliable services for elders within current budget constraints[7]. Not only would this improve the lives of the elders and families in the communities that volunteered to try this out — they would provide a path for further reforms.

The partisan debates that are now absorbing most of the attention and running in a seemingly endless congressional loop are avoiding the challenges of long-term care for the rising population of frail and disabled elders that will double in the first half of this century. They ignore the fact that we have less than a decade to be ready for longevity on a mass scale.

So let’s change the channel and do some re-designing! When we’re 88, we’re going to need a different approach to health care – one that emphasizes living meaningfully and comfortably with the health challenges that must be endured, rather than pretending that prevention, cure, and rehabilitation are always available and effective. It’s time to try out much more fundamental changes in Medicare and Medicaid, along with private savings and voluntary caregiving. Living well in advanced old age requires buttressing essential programs such as the Older Americans Act [8], housing programs and workforce training. And having the elderly populations of cities and counties live well with the illnesses and disabilities that accompany their last years of life will require enabling communities to take a hand in measuring their systems’ performance and to manage improvements. In advanced old age, we will need not just medical care that Medicare now covers. We will also need supportive services such as nutritious food, safe housing, accessible transportation, caregiver support, hearing aids and dental care. Now that we know what we need, let’s illuminate the policy path and do the testing and evaluation work to make it possible for our future selves.

[1] Gardner RC, Valcour V, Yaffe K. Dementia in the oldest old: a multifactorial and growing public health issue. Alzheimers Research and Therapy 5 (4):27, 2013.

[2] Favreault M, Dey J. Long-term services and supports for older Americans: Risks and financing research brief. Unban Institute and Milliman. https://aspe.hhs.gov/pdf-report/long-term-services-and-supports-older-americans-risks-and-financing-research-brief (accessed September 24, 2017)

[3] Parikh RB, Montgomery A, Lynn J. The Older Americans Act at 50: Community-based care in a value-driven era. N Engl J Med 373 (5):399-401, 2015.

[4] Graham W C K., Bilger M. (2017), Financing Long-Term Services and Supports: Ideas from Singapore. The Milbank Quarterly, 95: 358–407. doi:10.1111/1468-0009.12264.

[5] Lynn J. MediCaring Communities: Getting what we want and need in frail old age at an affordable cost. Altarum Institute, 2016. https://medicaring.org/book-online/ (accessed September 24, 2017)

[6] Lynn J. MediCaring Communities, pp 57-66.

[7] Bernhardt A, Lynn J, Berger G, Lee J, Reuter K, DaVanzo J, Dobson A. Making it safe to grow old: A financial simulation model for launching MediCaring Communities for frail elderly Medicare beneficiaries. The Milbank Quarterly, 94: 597–625. 2016. doi:10.1111/1468-0009.12199.

[8] New LCAO briefs on OAA:
One-Pager: The Older Americans Act
Issue Brief: The Growing Role of the Aging Network in Improving Health Care and Reducing Costs
(accessed September 26, 2017)

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Mar 012017
 
Portrait of Dr. Joanne Lynn
Joanne Lynn, MD

By Joanne Lynn

Most of us now reading this will get the extraordinary privilege of being able to live into old age. For nearly all of human history, few people lived to be old, and even fewer lived long with serious disabilities. Now, most of us will have a substantial period of increasing disability at the end of long lives. The experience of people with serious illnesses and disabilities in old age (“frail elders”) and the experience of caregiving for an elderly person are profoundly shaped by the availability of supportive resources and appropriate medical care in the local community.

For example, some communities have ready availability of services such as home-delivered meals and wheelchair-adapted housing, while others have exceedingly long waiting lists for often-inadequate services. Some communities have developed substantial geriatric medical care, including house calls and telemedicine, while others rely on the hospital for every complication. Little is known about the experiences of elders and their caregivers in the usual community, since very little is captured about the community’s experience of this part of life in conventional surveys and reports. Many health systems and communities like to take on the responsibility of monitoring and improving the care system for disabled elders and their caregivers, rather than just offering rescue services for serious and often preventable complications; but they find that the reliable metrics needed to guide improvement are unavailable.

We’ve given some thought to potential ways to meet these needs, and here’s what seems possible and affordable in order to make a measurement dashboard to guide improving a community’s eldercare system. First, one could mine large existing databases, such as Medicare and Medicaid claims, Outcome and Assessment Information Set (OASIS) home health agency assessments, and Minimum Data Set (MDS) nursing home assessments. Then, one could monitor demand for and performance of key service providers, such as wait lists for home-delivered meals or availability of wheelchair-adapted housing. Third, the community could interview family and caregivers for a sample of elderly decedents and describe the experience of the last couple of years. This strategy would sample those who received few services and demanded little, and it would allow exploration of critical issues such as bankrupting elders and families and providing culturally appropriate services.

Our last data source, learning by aggregating care plans, is a bit beyond current implementation, but it could enable the opportunity for substantial monitoring and improvement efforts. We envision having records with the key elements of service needs for nearly all frail and disabled elders in a geographic area. Being able to combine them electronically would yield rich data in order to summarize needs, services provided, gaps, oversupply, and quality problems—both for the whole community and by mapping to clarify the locus of some issues. If, for example, the community has 500 elderly people so disabled that they should have medical care at home, and the community had current capacity only for 100, then one could identify and map the areas of need and examine the current and potential supply options to address the gaps. Furthermore, with data on demand and supply for a dozen important service needs, the community would be able to set priorities for investments in public resources. You can read more about how this kind of community management would work in our book.

Of course this work requires adequate care plans, preferably in a format that allows electronic identification of the plan and its elements. At present, too few elders living with advanced illnesses have reasonably comprehensive care plans created, and even fewer have them written down, even in narrative form. We’ve also realized that shortages of, or quality shortcomings with, important services are addressed explicitly or noted in the record. Thus, a person who really would do better with door-to-door wheelchair transportation and lives in a community lacking this service will instead have the substitute arrangements in his care plan, such as “transportation relies on the availability of his son-in-law Tom, so appointments need to revolve around Tom’s availability.” The shortage of appropriate transportation options might be inferred but is not likely to be explicitly stated. Similarly, the lack of respite for a caregiver will not be noted. Therefore, additional work is needed to develop comprehensive care planning, which includes collaboration with the regulatory and technical bodies that are working on the standards for care planning.

With funding from the Gordon and Betty Moore Foundation, we are working to develop the methodology to do care plan aggregation. We are actively seeking communities that would like to help us develop these methods by letting us try it out with their population. We want to know what information from care plans you think would be most relevant and how you’d want to act on that knowledge, what entity in your community might be able and willing to act, and whether it is worthwhile to push for better and more standardized care plans.

Please email us at [email protected] if you know of or belong to an organization that might be able to work with us.

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Jul 262016
 
MediCaring Communities cover

By Joanne Lynn

Nearly all Americans want a long life, and many of us will live into our 80’s and beyond. But as a society, we have avoided addressing the challenges of living well in the last years at a cost that our families and taxpayers can sustain. That’s about to change.

A new MediCaring Communities book from the Center for Elder Care and Advanced Illness, authored by Dr. Joanne Lynn, provides a comprehensive blueprint for re-engineering — in highly practical, doable terms — how to better organize service delivery and current publicly financed programs so that all Americans can count on living comfortably and meaningfully through the end of life. MediCaring Communities are deliberately designed to customize care around the priorities of elders and their families. The model also offers local organizations and governments a financial lifeline and a way to share in managing a care system so that it is as reliable and efficient as possible.

The MediCaring Communities model takes the best of “lessons learned” and “best practices” from the public literature and on-the-ground experience gained from working with frail elders and across many services systems. It addresses the unique needs of elders who need both medical care and long-term care through organizations that are either adapted or established de novo in order to deliver tailored geriatric and supportive services. These services are in turn modulated by each elder’s care plan – defined as a record of services that comport with an individual’s treatment preferences and quality of life goals. The substantial Medicare savings that result from lower utilization of high-cost services and improved, appropriate geriatric care, are then repurposed and reinvested in vital and underfunded homecare and related social supports, including home delivered meals, transportation, and training and respite for family caregivers.

Virtually everyone agrees this type of care is what they want for themselves and for their loved ones. We know exactly where we need to go, but how do we get there?

PACE Expansion

The Program of All-Inclusive care for the Elderly (PACE) provides one opportunity. PACE already has a solid reputation as a comprehensive program primarily for dually eligible beneficiaries who need medical care and long-term services and supports (LTSS). With the November 2015 passage of the PACE Innovation Act (P.L. 114-85), which brought innovations with PACE under the authority of the Center for Medicare and Medicaid Innovation (CMMI), the federal government now has streamlined authority to fund innovations in the PACE model. With a green light from CMMI, PACE programs will be able to test expansions in two key populations: (1) Medicare beneficiaries or “pre duals,” who need LTSS services, and (2) dually eligible beneficiaries who are not yet disabled enough to meet their state’s Medicaid definition of a nursing home level of care.
If PACE scales to take on these new populations, the program’s advisory board could readily evolve to become independent and reflect a broader community perspective on frail elders. In so doing, it could take on greater responsibility for monitoring and improving eldercare services across the community. Such PACE expansion programs could show how to anchor a comprehensive model of care for all similarly situated frail elders in the area, whether or not they are disabled enough to qualify for a Medicaid nursing home level of care.

ACOs and MCOs

Another mainstream Medicare model is an Accountable Care Organization or a managed care plan. Either could sponsor a MediCaring Community by accounting for frail elders in a defined geographic area separately from their overall business, and establishing an integrated clinical and LTSS delivery system in that community. The savings harvested from avoiding low-value, overutilized services would be calculated annually. A share would go to Medicare, but most would be retained for reinvestment in social and supportive services. Challenges associated with an adapted ACO model are that the usual ACO has little track record to build upon for constructing an independent board and for collaboration with LTSS providers, but other organizations in their communities would likely have strengths in these areas and be willing to collaborate. ACOs also have substantial barriers to establishing dominance in an area and their current quality metrics are not well matched to service needs of frail elders, so both of these would need work to overcome. ACOs also often have limited expertise in geriatric care, and would need coaching to build strong interdisciplinary teams quickly.

MCOs likewise could sponsor a MediCaring Community, in much the same way as ACOs. An MCO would collect per member per month premiums, and savings would be the profits in hand. The challenges in developing clinical expertise, care plans, connections with LTSS providers, and an independent board would be fairly similar to the ACO issues outlined above. MCOs also face the challenge of today’s “star rating” system for quality. Excellent frail elder care effectively means not complying with many standard quality metrics, including tight control of diabetes, hypertension, and screenings for cancer. Also, MCOs are now required to offer the same package to all beneficiaries, so an MCO could not offer a MediCaring Community package in one area and not in others without a federal waiver.
There are several potential paths forward, but much work will be needed to get there. However, there are steps you can take today to get America moving in the right direction. You can push your Congressional representatives and state officials to allow MediCaring Communities to proceed, and encourage consumer and professional organizations to get involved. Lastly, spread the word about the MediCaring Communities book — Read it, and write a review on Amazon! We also welcome your thoughts and feedback. Write us at [email protected] with suggestions for improvement.

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Jul 052016
 

New York, New York, July 5, 2016—A new financial simulation for a novel model of care, called MediCaring Communities, has shown significant Medicare savings for frail older adults who need both medical care and nonmedical support services.

Medicare savings ranged from $269-$537 dollars per person per month, depending on the community, its past patterns, and the pace of change anticipated. The four communities in the simulation were Akron, OH, Milwaukie, OR, Queens, NY, and Williamsburg, VA.

The U.S. could provide much better care for disabled and sick elderly people without exceeding what we now spend, the study shows. The team estimated enrollment and effectiveness of improvements, using local experience and research data.

These findings, from Altarum Institute’s Center for Elder Care and Advanced Illness (CECAI) [now Program to improve Eldercare] in partnership with Dobson DaVanzo & Associates, LLC, were published today in The Milbank Quarterly.

In the model, medical services were reconfigured to improve the experience of frailty in old age, starting with a comprehensive, elder-driven care plan constructed to reflect each older adult’s specific situation, prognosis, and personal priorities. Added to the mix were improvements to ensure that supportive long-term care services were reliable and readily available.

The financial simulation included Medicare beneficiaries with dependencies in two activities of daily living or cognitive impairment necessitating constant attendance.

“This model will be successful if just some of these savings from high-cost medical services are invested in nonmedical in-home support,” said Joanne Lynn, MD, CECAI director. “It should be easier for a disabled elderly person to get home-delivered meals, or for a family caregiver to get a few days relief, than it is for a doctor to prescribe a $10,000 pill. At present, we have our priorities wrong.”

“Programs already exist that could make this happen if CMS (Centers for Medicare & Medicaid Services) allowed it. Accountable Care Organizations and the Program of All-Inclusive Care for the Elderly (PACE) would be terrific foundations for a MediCaring Community,” continued Lynn. “To address the needs of millions of seniors, we must use the next few years wisely, aiming to deliver much more reliable and comprehensive care to high-cost elders—without increasing the costs. Now is the time to take these lessons and use them to change how we help older adults, and bolster programs across the country that will help elder communities thrive in the oncoming ‘age of longevity.’”

Contact: Judith Zimmer [email protected] 212-355-8400

About Altarum
Altarum (www.altarum.org) integrates objective research and client-centered consulting skills to deliver comprehensive, systems-based solutions that improve health and health care. Altarum employs almost 400 individuals and is headquartered in Ann Arbor, Michigan, with additional offices in the Washington, D.C., area; Portland, Maine; and San Antonio, Texas.

About The Milbank Quarterly
Continuously published since 1923, The Milbank Quarterly features peer-reviewed original research, policy review, and analysis from academics, clinicians, and policymakers. The Quarterly’s multidisciplinary approach and commitment to applying the best empirical research to practical policymaking offers in-depth assessments of the social, economic, historical, legal, and ethical dimensions of health and health care policy. The Milbank Quarterly is published in March, June, September, and December on behalf of the Milbank Memorial Fund by John Wiley & Sons. www.milbank.org/the-milbank-quarterly

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Jun 282016
 

Geriatricians, as well as the  frail, sick, and disabled elders for whom they care, are at serious risk under the proposed implementation of the Medicare Access and CHIP Reauthorization Act (MACRA). To read Joanne Lynn’s comments on the Notice of Proposed Rulemaking for Merit-Based Incentive Payments and Alternative Payment Models under MACRA, click here.

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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.

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Apr 082016
 

By Joanne Lynn

The time has come to seek cooperation from the Centers for Medicare and Medicaid Services (CMS) so MediCaring Communities can get underway in many parts of the country. These programs are as necessary to an aging society as pediatrics and obstetrics are for children and maternal care. Empowering communities to take care of their own residents who aim to age in place and eventually live with frailty is a challenge we can meet without impoverishing younger people or stalling the economy. But it will take some action now. Can you and your community be among the pioneers?

The core ideas are simple and well-proven. Now is the time to pull them together into a workable and affordable system of care. First, we have to be willing to acknowledge that becoming old and frail—having two or more limitations in Activities of Daily Living, presence of cognitive impairment, or being older than 85—is now an expectable part of life for most Americans. When this period arrives, we usually need a more supportive and adaptable care system. The arrangements we have now for health care and supportive services are frustrating, wasteful, and a serious misfit for providing the comfort, meaningfulness, personalization, and reliability that are so greatly desired at that point in our lives. Critically important, we become more and more individual as we grow old: each of us has a unique set of relationships, values, resources, aspirations and fears, as well as a particular medical situation. This demands that frail elderly people have a thoughtful care plan for the services needed across time—one that fits their individual preferences and priorities.

Medical care for frail elderly Medicare beneficiaries also needs to fit their situation. Screening to prevent illnesses that are unlikely to become a serious problem for a decade or more is a good example of low-value care that should be avoided, while preventing falls and delirium assumes a very high priority. Going to the hospital may sometimes be essential; however, for frail elders, this entails much more risk (e.g., infections and falls) than it did earlier in life, so hospitalization decisions need to be carefully considered. More medical services should be provided in the person’s home once it becomes very difficult and disorienting to go to a doctor’s office or clinic.

Here’s another key point: For the mainly homebound frail elderly Medicare population, supportive services are critically important to daily well-being and must be readily available and reliable. Some frail elders need food delivered or housing adaptations. Others need ongoing personal care or supervision. The great majority hopes to stay in their homes and not have to move to institutions, and most want to keep up relationships with neighbors, family, religious groups, and others. Family caregivers of the future will be both less available and will face more substantial challenges than in the past, and we need to support them.

Scores of improved practices are known to achieve better care, but to date all have been small projects, hard to sustain and difficult to scale up and spread. The current funding rules in the United States encourage overuse of medical care while providing scant supportive services and almost no tools for communities to evaluate local needs and priorities. It is bizarre that any physician can write a prescription for a drug costing $100,000 that has been found to be only a little helpful for only a few potential patients, but neither the doctor nor anyone else can order up a substitute caregiver when the spouse is ill or find a way to get food delivered when there is a long waiting list for Meals on Wheels. Most families and elderly people find this strange as well, once they experience the situation. But most people are only gradually realizing that this sort of distortion is a direct result of policy choices—and that we could choose differently.

MediCaring Communities is a way to choose differently. Here’s how: Each community would develop a way to reflect the voice for its frail elders, which we’ll call a “Community Board,” though it could have a number of names and organizational features. The important thing is that it would help guide providers in the local system toward achieving and maintaining high-value care. For example, the Community Board would work with health care, public health, and social services providers to monitor performance metrics that reflect the priorities of frail elders in the area, including the preferences of individuals, and help decide on priorities for investments and improvements.

Where would funding for investment and system management come from? The funding would come from savings arising from much-improved coordinated services that are adapted appropriately for the population of frail elderly Medicare beneficiaries, follow their preferences, and adhere to the principles of geriatrics, and that reduce overutilized, low-value services in Medicare! The potential for savings varies, but an average of about 30% is plausible for almost any MediCaring Community program. Even saving 10% would enhance the ability of communities to make supportive services that are needed by elders—and which are the mainstay of long-term care—much more available. A program could be built on a managed care platform, an Accountable Care Organization arrangement, or a Program of All-Inclusive Care for the Elderly (PACE) program.

Recent legislation has made a new avenue possible through the PACE program, the most established, community-based service delivery model for older adults. The PACE Innovation Act (P.L. 114-85), signed into law on November 5 2015, provides the Centers for Medicare & Medicaid Services (CMS) with the authority to loosen the rigidity of the PACE program. CMS’ Center for Medicare & Medicaid Innovation (CMMI) can now pilot expanded PACE models to serve a broader population. For the first time, the program can be readily adapted to serve Medicare-only beneficiaries who have a need for some LTSS but are not yet functionally at their states’ nursing home level of care and have incomes above their state’s Medicaid financial eligibility threshold. Building MediCaring Communities on an ACO, MA plan, or PACE platform will require some cooperation with CMS.

That’s where your help is needed. The time has come to ask CMS to take up the challenge of working with willing applicants, starting by opening the door to allow pioneer MediCaring Community programs, including willing PACE programs, to move ahead.
Here’s what we have found likely to be important in the first set of communities, enabling them to lead in building reliable, sustainable services for frail elders in the MediCaring Communities model:

  • A history of cooperation in the public interest;
  • Implementation of some improvements already in frail elder care, such as some experience with models like PACE, GRACE, INTERACT, local support of nutrition and transportation services, age-friendly environments, or similar models and programs;
  • Leaders who are concerned about the future effects of increases in the numbers of persons needing daily help in old age;
  • Enough frail elders to field a convincing project but still small enough to be able to make improvements quickly (perhaps 500–10,000 is a reasonable range, and frail elders are about one-tenth of all persons older than 65);
  • Reasonably self-contained area, with boundaries that are well-known, that is, the health care and supportive services to people who live in the area are generally provided by services anchored in the area.

There will be other considerations, but none are as important as commitment and leadership. We invite you to think on it and talk it over with others, and if building the elder care system of the future is plausible and appealing in your community, city, or county, please let us know! We are planning some webinars and perhaps some meetings to spell out details, answer questions, and shape up our request before we head to CMS to get approval for leadership communities to get underway.

Serving a far larger population of elders is a solvable problem—it is only made difficult by protocols and regulations that were developed for a different (younger) demographic reality. Let’s modernize our care system for our old age and create a trustworthy set of arrangements that generate pride instead of waste and frustration. Send us an email today.

What do you think? Can you help to make this happen? Write to us at [email protected] if you can see a good opportunity in a community that you know. Also encourage support from the leadership of professional and advocacy organizations, political leaders, and CMS. Let us know if you are doing this and what progress you are making. If you contact us, we’ll be in touch and will aim to include your community in the list of potential pioneer communities to help persuade CMS to let us proceed.

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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
https://docs.house.gov/Committee/Calendar/ByEvent.aspx?EventID=104584

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Feb 222016
 

By Anne Montgomery

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

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

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

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

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

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

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

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

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Jan 042016
 

By Anne Montgomery and Leslie Fried of the National Council on Aging

One of the hallmarks of the 21st century—increased longevity of the population—will increasingly drive federal, state, and local health care programs to focus on optimizing coordination of services across a range of medical care and community services providers. Discharge planning will play a central role in these efforts, particularly discharge to home.

In November, the Centers for Medicare & Medicaid Services (CMS) issued a proposed regulation for hospitals (defined as including critical access hospitals, long-term care hospitals, and inpatient rehabilitation facilities) and home health agencies. Overall, it is a solid effort and a welcome step forward in calling for Medicare and Medicaid to interface with Older Americans Act providers and disability programs under the jurisdiction of the Administration for Community Living. All of these programs and others are centrally concerned with managing beneficiaries who have complex chronic conditions. They are also well-positioned to set out criteria that can help providers establish systems of joint management of complex patients over extended periods.

However, while the rule prominently references Aging Network providers—Area Agencies on Aging, Aging Disability Resource Centers, and Centers for Independent Living—in the preamble, it does not carry substantive discussion through to actually require health care providers to coordinate with these community-based organizations.

We see this as a shortcoming, since the array of services offered by these organizations, which include home and physical environment modifications, access to assistive technologies, transportation, meals, household services, and housing support, are essential to millions of Medicare beneficiaries who cannot function day-to-day without some assistance. Absent clear requirements for health care providers to coordinate with social services organizations, risks will remain high that many fragile, complex older adults living in the community will fall through the cracks and into crisis, cycling in and out of high-cost health care settings.

If we think about discharge planning in a larger context, it is effectively only the start of a successful transition. Keeping information about patients with chronic conditions in the hands of a “sending” health care provider only, with no explicit requirements to make adequate provisions for communications and preparations with “receiving” community-based organizations, is likely to result in frustration for families and missed opportunities. By comparison, to maximize opportunities for success, CMS could bring the Aging Network into discharge planning discussions as soon as health care providers start to prepare for a patient’s transition—and could determine the actual availability of these services. If it turned out that publicly funded community services were not available (possibly due to waiting lists and/or underfunding), health care providers could be asked to explore alternatives. In all cases, figuring out what options are actually available and affordable must be done in consultation with the patient and family caregiver.

To improve the chances that community social services organizations can be better funded, we believe that CMS should direct nonprofit hospitals to assess services shortages as part of their Community Benefit Needs Assessments, and take subsequent steps to mitigate and augment critically needed services in the community. For-profit hospitals should be similarly required to work with public health offices and Aging Network providers to assess and correct any inadequacies in service supply.

On a related point—assessment of the discharge planning process—we strongly encourage CMS not to limit these reviews to assessment of the impact on readmissions (§482.43(c)(10)). Rather, in the spirit of the regulation’s frequent references to Aging Network providers, we urge that hospitals be required to establish advisory committees to conduct periodic reviews that include community social services organizations and other stakeholders in order to track the full impact of discharge planning on patient outcomes over time.

In another area—the specific elements that must be covered in discharge planning documents—the regulation proposes varying requirements for different providers. In the case of home health agencies, for example, discharge and transfer summaries must include demographic information; contact information for the physician; an advance directive, if available; the course of the illness/treatment; procedures; diagnoses; lab tests and other diagnostic testing; consultation results; a functional status assessment; a psychosocial assessment, including cognitive status; social supports; behavioral health issues; reconciliation of discharge medications; all known allergies; immunizations; smoking or nonsmoking status; vital signs; unique device identifiers for implantable devices; recommendations for ongoing care; patient goals and treatment preferences; the current plan of care, including goals, instructions, and the latest physician orders; and “any other information necessary to ensure a safe and effective transition of care that supports the post-discharge goals for the patient.”

In contrast, there is a much shorter list for critical access hospitals to consider in the context of “areas where the patient or caregiver/support person(s) would need assistance.” It includes admitting diagnosis or reason for registration, relevant co-morbidities and past medical and surgical history, anticipated ongoing care needs post-discharge, readmission risk, relevant psychosocial history, communication needs (e.g., language barriers, diminished eyesight and hearing), patients’ access to non-health care services and community-based care providers, and patients’ goals and preferences. Yet another list of criteria pertains to “discharge to home” situations, which requires instruction on post-discharge care to be used by the patient or the caregiver/support person; written information on warning signs and symptoms; prescriptions, including the name, indication, dosage, and significant risks and side effects; medication reconciliation; and written instructions for patient follow-up care, including appointments, diagnostic tests, and pertinent contact information.

Logically, there should be a list of core elements that could also be the foundation for a common care plan, and which could then be readily shared across providers working in different settings. Requiring a list of core elements would simplify care coordination and basic communication between providers, and decrease confusion and chaos for families who are often confronted suddenly with very difficult tasks when taking a seriously ill or disabled person home. Perhaps the list of required elements outlined for home health agencies could be the basis for crafting standardized core elements for all covered health care providers, along with a person’s likely future course, strengths, treatment preferences, and goals.

Concerning the critical role played by family caregivers, the rule recognizes and acknowledges the importance of families in many places – yet does not clearly establish the voluntary nature of this support: In other words, the primary consideration in discharge planning with regard to family caregivers should be to determine their willingness to provide services. To address this, we hope that CMS will consider requiring health care providers to engage in a conversation and subsequently document that a family caregiver has been asked about specific supports that he or she may need, taking into account the family’s economic resources.

The regulation features thoughtful discussion medication reconciliation and health information technology (HIT). For beneficiaries with complicated medication regimens or a track record of medication problems, we believe that CMS should encourage covered providers to use a pharmacist or physician (as compared to a software program or a nurse) whenever practicable. To make strides on HIT, there may be scope for the agency to require a standard format for recording a care plan, in order to improve interoperability and to make care plans an integral part of standards for certified electronic medical records.

Finally, the regulation should guarantee that discharge planning documents are immediately accessible to patients and family caregivers. Under current protocols governing medical records, it is often difficult for family caregivers to obtain a medical record from a hospital until after discharge, even with a patient’s signed consent (which is not always possible to get if the patient is seriously ill). This is unhelpful and counterproductive for families and should not be allowed to be extended to discharge planning documents.

CMS’ discharge planning regulation is moving in the right direction. As the agency considers these and other ideas for improvement, we hope that the agency will take the opportunity to advance a national conversation on how discharge planning can play a key role in health and social services delivery system reforms.

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