The Ways & Means Committee of the U.S. House of Representatives heard testimony on “Caring for Aging Americans” on November 14. Dr. Joanne Lynn participated as an expert witness. A video of the hearing can be viewed at https://www.youtube.com/watch?v=20GgbnOMIn4.
Read Dr. Lynn’s comprehensive written testimony by clicking below.
Testimony_JLynn_to_WaysMeans_11-14-2019
By Anne Montgomery
Time is growing short to make big changes to basic processes for service delivery to elders, who will soon constitute one-fifth of the U.S. population. Basically, we have a mismatch between the health care delivery system and what many older adults actually need.
Typically, older adults typically see multiple clinicians working in many settings – e.g., primary and specialty care, hospital care and home care — and communication between these providers tends to be inadequate. This in turn contributes to fragmented care that can be frustrating and costly. Medical services are often disconnected from the life goals and treatment preferences of a given individual, and his or her need for various supportive services are often not documented. Finally, although numerous smaller-scale initiatives have shown that much of the disability and frailty associated with aging can be effectively managed (and sometimes delayed or prevented), innovative models that prioritize these goals have not yet been widely implemented.
This suggests it’s a good moment for policymakers to consider piloting designated entities, perhaps called community-based health organizations (CBHOs), in order to organize provision of cost-effective supports across a population of high-risk, high-cost elders living in a given area or region. Broadly similar to a model developed by Joanne Lynn, MediCaring Communities, [https://medicaring.org/book-online/] CBHOs, operating as an interconnecting network, could be chartered to prevent and delay more costly inpatient and institutional care, working in partnership with local medical care providers. They would likely begin at a modest scale, forming networks in order to further develop business acumen, acquire information technology that is essential for interoperability, and develop collaborative relationships and contractual arrangements that over time can transition into more formal integrated care systems. As a distinguishing characteristic, CBHOs could measure and reinvest savings in improving community care systems.
Shifting the Entry Point Average Cost/Day [Click to enlarge]
One intriguing graphic, created by Preferred Population Health Management and reprinted here with permission, provides an illustration in one community of how delivery system entry points and costs might be re-thought. For vulnerable populations, which includes many older adults, it may make sense to consider looking at community-based organizations (CBOs) or Area Agencies on Aging (AAAs), as another entry point to a more tightly coordinated care system that prioritizes cost-effective services that reduce the risk of needing higher-cost interventions.
Changing the Entry Point to Health [Click to enlarge]
Using grant funding, CBHOs could be charged with standing up coordinated, synergistic delivery systems for older adults and individuals with disabilities across a service area. Collaborations could take various forms: partnerships between AAAs/CBOs and PACE organizations; with Federally Qualified Health Centers (FQHCs); with Rural Health Clinics (RHCs), and other possible combinations. CBHOs would be tasked with analyzing available data on the needs of all older adults and individuals with disabilities who live in the area, filling in with more complete data over time. They would then create a five-year plan for serving older adults in the area, with approval requiring consultation and sign-off by a local coalition representing providers, advocates, and individuals currently needing (and/or anticipating needing) services. Approved grant funding would flow to CBHOs, and states would be asked to assist in tracking CBHOs and their performance vis-à-vis standardized metrics, costs, and outcomes for individuals. At the expiration of the grant period, the federal government, in consultation with states and community stakeholders, would determine which CBHOs could become permanent.
There are several indications that policymakers are starting to consider such approaches. For example, a Senate draft of the Older Americans Act reauthorization, which is now circulating for comment, includes language stipulating that future OAA demonstration projects must address determinants of health; reduce health care expenditures, “preserve or enhance” quality of care to individuals, and prioritize initiatives that focus on caregiver support, multigenerational engagement and community-based partnerships.
There are other hopeful signs in work that is being led by the Center for Medicare and Medicaid Innovation (CMMI), which is teeing up a range of possible alternative payment models, and adaptations of existing programs to recognize and address social determinants of health in vulnerable populations. For example, as noted in our blog last month, [https://medicaring.org/2019/05/08/2019-cmmi-proposals/] CMMI has announced two groups of models, called Primary Care First and Direct Contracting. As part of the Direct Contracting Model track, CMMI published a Request for Information on how geographic contracting could work. Because they are typically limited to services that are available locally, older adults living with serious chronic illnesses and functional limitations and younger people with disabilities are populations that would be well-suited for a geographically-organized care model.
If local governments were allowed to be contractors, this could open up new opportunities for the Aging Network. To date, nearly all major federal innovation efforts have been geared toward large organizations working within the medical care system, but this could change. About half of AAAs are embedded in local governments, and AAAs and CBOs already understand how supportive services for older adults and other vulnerable populations can be efficiently delivered in very different types of communities. Moreover, as the nation’s primary publicly-funded network of community-based supportive services providers, staff are trained to organize and provide services in the home, and are therefore attuned to the life circumstances of individual elders.
In another encouraging development, CMS published an updated Scope of Work (SOW) in March for organizations applying to be Quality Improvement Organizations/Quality Innovation Networks (QIOs/QINs). Notably, this SOW instructs applicants to “coordinate with existing community-based efforts and reach community stakeholders to form community coalitions…[that] include the recruitment and engagement of providers across all care settings” — including those delivering community-based supportive services. QIN-QIOs will be required to use “a population based measurement strategy to show targeted improvement of beneficiaries that reside within specified ZIP codes” and to reach at least 414 community coalitions across the country. This means that QINs/QIOs will be actively supporting organizing of community stakeholders (providers, beneficiaries, caregivers and their families, emergency responders and more) in order to gather data that aims to improve care transitions and achieve specific reduction targets in high-cost inpatient hospital utilization.
By 2035, there will be 80 million older adults 65+ in the U.S., and the population age 85 and older will reach 12 million. And since many older adults have complex social needs and about one-third are living with a disability, this is an important time to try to shift the pattern of services further toward provision of home-based medical care and a more organized system of supportive, flexible, community-anchored services.
If we do too little now to deliberately boost the ability of the supportive services sector to innovate, it seems likely that unmet need for basic supports among many community-dwelling elders in the large boomer cohort will skyrocket. If this happens, health care costs will likely balloon. To help forward-thinking pioneers in this sector move forward faster, let’s hope that policymakers will give a green light to spurring development of collaborative, population-based care systems that are mission-driven to keep older adults at home and out of medical crisis for as long as possible. It’s a doable challenge, and the potential societal return on investment is large.
By Anne Montgomery, Sarah Slocum and Christine Stanik
What do you need to know in order to remain in your own home as the years advance? Where can you turn for good, reliable services in a costly, chaotic, constantly shifting health care system? One possible answer is PACE (the Program of All-inclusive Care for the Elderly) program. PACE is widely acknowledged to be the “gold standard” of comprehensive geriatric care – which is not just medical care, but also long-term services and supports (LTSS).
But PACE is not yet available in 19 states, and currently has limited capacity, serving about 45,000 beneficiaries (almost entirely elderly persons who are enrolled in both Medicare and Medicaid). Beyond the dually-eligible population, how can we expand PACE to a burgeoning population of Medicare-only beneficiaries, many of whom need some LTSS, and who would very much like to avoid spending down to Medicaid level?
Medicare Advantage
One area of likely growth for PACE is to partner with Medicare Advantage (MA) managed care plans. Recently, the Centers for Medicare and Medicaid Services (CMS) published guidance allowing MA plans to expand the range of supplemental benefits they may wish to offer to include a range of LTSS. MA plans could contract with PACE (or another service organization), to furnish PACE Center attendance and transportation to and from home; meals; and other services to help enrollees avoid hospitalization, emergency department visits, and maintain stability even during periods of decline. For working family caregivers, PACE can be a huge help, serving as a source of reliable respite. And increasingly, evidence is accumulating that such arrangements can reduce in-patient hospitalization and ED costs, and delay or prevent long-stay placement in nursing homes.
To serve current community needs and prepare for larger offerings through MA contracting, some PACE organizations provide services to non-PACE enrollees as a private pay offering. PACE plans have varying levels of experience providing a la carte or service packages to non-PACE enrollees. At the Program to Improve Eldercare, we are developing policy pathways and practical tools to help PACE organizations and MA plans prepare to work together to better serve frail elders. First we need to address the daunting Part D affordability barrier that faces Medicare beneficiaries wishing to enroll in PACE that Sonja Love Felton described in a previous blog. Fortunately, CMS is aware of the problem, and may be open to a system-wide solution. We invite you to encourage them (contact us for guidance at [email protected]).
Medicaid
Another set of challenges to accessing PACE for some Medicare beneficiaries is that they lack the personal resources to pay out of pocket for LTSS. Many in this group have just slightly more income than their state’s Medicaid income eligibility threshold permits. If their monthly medical expenses are high, and this can be documented, some of these beneficiaries can take advantage of the so-called “medically needy spend down” option 33 states have. However, in most states, this option requires a large monthly deductible leaving only small amount of income (as low as $400 per month in some states) to pay for all living expenses. The rest face the “Medicaid cliff” –with an absolute cut off level, usually 300% of the SSI limit, which is $2250 in 2018 and cannot qualify for Medicaid if they are one dollar over the limit. The predictable result is that many families wind up impoverishing themselves to gain access to LTSS – which may only be available in the highest-cost setting – a nursing home. To solve these dilemmas, the Program to Improve Eldercare is working with Medicaid experts to identify practical, workable policy solutions that can be readily implemented, and which can make PACE LTSS services available to many more Medicare beneficiaries. States will ultimately save Medicaid dollars and avoid premature nursing home placement by allowing people to avail themselves instead of lower cost PACE services.
In the course of analyzing these challenges, we have been speaking with Michigan families who generously agreed to tell us their stories. Michigan is a state with an absolute cut-off for Medicaid – if your income is more than $2250 per month, you cannot qualify, even if your medical costs and personal care needs alone are $3000 per month. We relied on family caregivers to speak for elders they are supporting. They provided us insights into what happens to families who find PACE attractive, but who do not qualify for Medicaid and do not think they can afford to pay for long-term services and supports (LTSS) out of pocket. To protect the privacy of those interviewed, we have changed the names below, and details from several individuals are combined in the two composite narratives.
Tom’s Story
We spoke with Tom less than six months after he had contacted PACE on behalf of his octogenarian mother. Because she was becoming increasingly frail and unable to live on her own, Tom moved his mother into his own home. Not yet at retirement age, he soon realized that the demands of caring for her were at odds with a job that kept him away from home for up to 10 hours a day. Tom called PACE to express concern for his mother’s safety when she was home alone, noting that her physical condition was likely to degenerate over time due to several worsening health conditions.
Although Tom and the PACE program concurred that enrolling his mother would be the right solution to an otherwise hazardous situation, the cost of PACE, more than $4000 per month, put it beyond their reach. This left Tom to piece together services as best he could. However, eventually his mother had a fall when he was away from home, breaking her hip. At the time of the follow-up interview, she was convalescing in a nursing home, and Tom was desperately trying to find a better alternative. He was deeply concerned that a lack of adequate rehabilitation at the facility was preventing his mother from regaining her mobility. Although he did not have a plan to keep her safe if she returned home, Tom was exploring options to try to bring his mother home and also obtain therapy that could help her regain strength and the ability to walk. Overall, from a family caregiver’s perspective, the options presented had gone from hazardous to punishing – reliable, ongoing supportive services in a safe environment that would have made both of their lives much better were simply unavailable, because they fell between having a bit too much income for Medicaid, but not enough to pay for PACE.
Sheila’s Story
We spoke with Sheila a couple of months after she had contacted PACE on behalf of her elderly father. After the death of her mother, Sheila became concerned about her father’s social isolation and depression. Declines in physical health and the beginning signs of cognitive impairment were limiting his ability to venture out on his own to see friends and attend medical appointments. Sheila believed the PACE program would be ideal for her father, given that the PACE Center could provide an easy way to access the social interaction he sorely needed, and his medical care would be managed and monitored, alleviating worries about making and tracking various appointments for medical services that created burdens both for him and for her.
Unfortunately, her father’s small pension made Sheila’s father ineligible for Medicaid — without providing enough money to pay the out-of-pocket monthly PACE fee. Given the difficulty of caring for her father’s health needs, and growing concern for his acute loneliness, Shelia made the decision to buy a larger home that would allow her father to live with her family. Unfortunately, this did not work out as well as she had hoped, in part because she and her husband had full-time jobs, and had difficulties transporting her father to various medical appointments that were always scheduled during business hours.
Sheila was also concerned about her father spending most of his days alone. He still drove his own car, but was starting to show signs of forgetting even the most familiar of routes, and she suspected he would soon be unable to drive at all. Sheila was highly motivated to do all she could to help her father maintain a good quality of life in his final years and reported that the PACE Center continued to be the most attractive option for both medical services management and for social interaction. At the time of our last call, she had begun looking into the feasibility of having her father’s pension reduced in order to try to qualify him for Medicaid, so she could enroll him in PACE.
Reflections and Next Steps
Tom and Sheila were both doing their best to care for parents who had reached advanced old age. Both parents worked all of their adult lives and had accumulated some resources for retirement, and the comprehensive care model of PACE was a terrific solution for addressing several concerns. PACE was by far the option – but under current rules, it was beyond their financial means, and no other set of services was adequate or available.
These stories show why we are working on advancing flexibility in PACE, both in Medicare and Medicaid. PACE is well-positioned to serve many more people in a long-lived society if we can get policymakers to agree to implement commonsense solutions that remove current barriers. We hope you will join us in the endeavor, and if you want more information about PACE innovations, please contact us at [email protected].
By Sonja Love Felton, LMSW, MPA
Executive Director of Huron Valley PACE
huronvalleypace.org
Huron Valley PACE, in Ypsilanti, Michigan, is a young PACE organization – we were established only 4 years ago. However, we’ve been moving quickly since the day we opened our doors. Most readers likely know that PACE is an acronym for Program of All-Inclusive Care for the Elderly, a tremendously innovative program that became federal law back in 1997. Today, we provide comprehensive, high-quality, person- and family-centered care, mostly to dually eligible beneficiaries 55 and older – but as the Executive Director of Huron Valley PACE, I can attest that we have larger ambitions.
Here’s how we plan to grow: In March, we broke ground on a new wing that will allow us to enroll an additional 120 participants next year. Today, we serve 162 participants. Beyond enrolling more dually eligible participants, we are tackling the challenge of identifying policy pathways and implementing changes that will allow us to expand to serve a Medicare-only population. With our country’s age wave steadily gathering momentum, we want to build our capacity to enroll seniors who are not Medicaid eligible – either because they do not require a nursing home level of care or because they are not financially eligible (less than $2,250 in gross monthly income and less than $2,000 in assets).
To do this work, we are partnering with Altarum in a project supported by a grant from the Michigan Health Endowment Fund to find innovative ways to expand availability and affordability of PACE services to more elders and people with disabilities in our local service area. In our work to date, we have identified a major barrier for enrollment of Medicare-only participants – the cost of prescription drug coverage. Here’s the dilemma: dually eligible participants have all of their Part D costs covered, but due to conflicting provisions in the original PACE statute and the 2003 law that established the Part D program, Medicare-only participants are now forced to pay exorbitantly high premiums for their drug coverage — $1099 per month in 2018 in our program. That compares to the average $45.15 for a local Part D Prescription Drug Plan (PDP).
To resolve the conflict – which arises because PACE prohibits payment of co-pays and deductibles, and the Part D law requires that co-pays and deductibles be paid to qualify for discounts during the “doughnut hole” coverage gap as well as for catastrophic coverage – Altarum and Huron Valley PACE crafted a PACE and Part D waiver that we have submitted to the Centers for Medicare and Medicaid Services (CMS). In developing a waiver package, we also worked with the actuarial firm Milliman, Inc., to develop a pricing strategy that would allow Medicare-only participants to pay us a premium that covers buying a market-based plan and also covers out-of-pocket copays, deductibles, and over-the-counter medications. The monthly amount would total about $320. We think this is a creative solution that would allow people to keep their Medicare Part D plan and remain enrolled in PACE. We are excited about having the support of the PACE Association of Michigan (PAM), the National PACE Association (NPA), and Representative Debbie Dingell for this waiver.
In 2011, CMS approved a similar waiver for Medicare-eligible veterans, so that they could receive their drug coverage from the VA’s very affordable, high-quality prescription drug coverage program. As of mid-May 2018, we are awaiting news from CMS about our ability to move forward and begin to offer this innovative, lower-cost prescription drug option.
Another exciting development in Michigan that will make PACE more available to frail older adults is a revision to Michigan’s Nursing Facility Transition (NFT) Program which will include PACE as an option for people moving out of nursing homes and back to the community. Much of the NFT work Michigan has done – and thousands of people have already been helped to move back to the community from a nursing home – has been under the federally enacted and funded Money Follows the Person (MFP) program. While the current version of the MFP program is expiring, federal policy makers and advocates are optimistic that a new version of MFP will be forthcoming. Including PACE as an option for people who want to move from nursing homes back to the community will provide a more complete and choice-based set of options for our elders and people with disabilities.
Finally, for people who would be served well in PACE but have a bit too much income to qualify for Medicaid, Huron Valley PACE and Altarum are working with national and state level experts on Medicaid policy to develop a pathway that would enable the participant and Medicaid to share in the costs. Currently, these individuals eventually have to use a nursing home, almost all of their income is paid to the nursing home, and Medicaid picks up the rest. The cost to Medicaid would be lower in PACE and the elderly person would keep living in his or her home much longer.
PACE has been successful in providing comprehensive, coordinated, customized, high quality social and medical care to some of our most vulnerable citizens. Huron Valley PACE is pleased to be a part of this work with Altarum to explore groundbreaking ways to make PACE more available and affordable for a broader array of people who need such support and care in our community. Once we blaze the trail, many other states and PACE programs can make PACE much more broadly available.
For information concerning PACE at the national level, visit the National PACE Association website
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)
A new analysis from The Center for Elder Care and Advanced Illness lays out the key regulatory flexibilities that are central to allowing a greater number of Medicare beneficiaries to enroll in PACE, and includes links to relevant regulatory and statutory policy.
The Program of All-Inclusive Care for the Elderly is a highly promising model that can be adapted to meet the needs of large numbers of older adults who require a mix of medical care and long-term services and supports. These beneficiaries need reliable, well-coordinated, geriatrically competent, longitudinal services that are delivered in the community. These services must be affordable to participating older adults and to U.S. taxpayers.
Click Here to View PACE Flexibility Provisions That Would Help Medicare-Only Enrollees
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):
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,
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.
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?
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.
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.
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
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 (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.
“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.
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.
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.