Aug 072020

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

Eldercare has long been the stepchild of society’s pursuit of well-being – shunned by medical care and starved by social arrangements. A century ago, this did not matter much – people did not live so long, families were large and mostly on farms where taking in a relative was not so hard, and medical care did not have much to offer. The situation has changed, but the social arrangements have not kept up. COVID-19 has illuminated a number of the shortcomings. There will be a few short windows of opportunity to change things, but the advocates need to be ready with workable proposals. This blog aims to accumulate proposals that seem worthwhile for use by whoever wants to use them. Please add your comments and suggestions in the comments at the end!

Action Steps

  1. Everywhere that we see an opportunity, encourage broad public and leadership awareness of the high likelihood that each American will live with serious disability for a substantial period and that we are exceedingly poorly prepared to enable late life to be comfortable and meaningful. Write letters to editors, op-eds, and blogs. Call in to radio shows. Ask questions of candidates.
  2. Push to revise how we finance supportive care for elders. Allow pre-tax payment for long-term care insurance. Call for a new social insurance to cover “catastrophic” levels of costs from needing long periods of long-term care. Call for Medicare’s capitated plans (Medicare Advantage) to cover an understandable standard set of supportive services for defined situations.
  3. Generate data that will enable communities to understand how well their community is performing with regard to eldercare and that can monitor efforts to improve. We need visible data about the availability of home-delivered food, adapted housing and transportation, direct service workers, medical care at home, and the quality and reliability of personal care.
  4. Enable some local authority to monitor and manage eldercare on behalf of the community – could be the responsibility of the Area Agency on Aging, the public health office, a coalition of concerned entities, county government, or another approach – – but somehow, we need to create a locus of responsibility for improving performance.
  5. Strategize to reduce reliance on hospitals and nursing homes. They are essential in some circumstances, but many more people could be treated at home or in an outpatient setting, and many more people could go straight home from a hospital stay, IF the community had readily available and fully adequate supports for disabled people living in the community. So – advocate for more adequate funding for the Older Americans Act, which supports meals, care coordination, Area Agencies on Aging, etc. Advocate for more outreach to prevent abuse and neglect. Learn what is not available in your own community and push for that.
  6. Support family caregiving. Employers could seek to be flexible in leave, adjusted hours, and working from home. Respite care could be made available. Family caregivers could be paid in some circumstances and could get social security credits and Obamacare health insurance coverage.
  7. Improve the working conditions for direct care workers. Require a living wage, whether working in facilities or homes. Require conventional workers benefits. Ensure that they have the personal protective equipment and COVID-19 testing (or whatever else arises) that they need. Build career ladders with certifications and opportunities to advance.
  8. Push our organizations to be strong supports – AARP, Alzheimers Association, caregiver groups, professional organizations, provider organizations, political organizations, etc.
  9. Send in suggested questions for televised debates of candidates. Tweet to reporters.
  10. Express outrage over the forced isolation (solitary confinement!) of nursing home residents without even asking them about their tolerance for the risks, or enabling survivors of the infection to be more liberated from restrictions.
  11. Highlight the need for all elders to have comprehensive care planning, including advance care planning for medical care. Nursing homes and assisted living centers should have nearly 100% compliance and failing to undertake this work should be a cause for penalties.
  12. Study and respond to the evident disproportionate impact of COVID-19 on nursing home staff and residents who are African-American, Latinx, or immigrants.
  13. Encourage very limited liability protections for alleged shortcomings arising from COVID-19. The country should avoid a plague of lawsuits, but whatever protections are put in place should be limited in time and scope.

I’ve become quite fond of the hopefulness of this quotation – and a devotee of having good ideas “lying around.” So – let’s get behind them and push them to be politically inevitable!

“Only a crisis – actual or perceived – produces real change. When that crisis occurs, the actions that are taken depend on the ideas that are lying around. That, I believe, is our basic function: to develop alternatives to existing policies, to keep them alive and available until the politically impossible becomes the politically inevitable.” Milton Friedman

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

Jul 132020
Dr. Joanne Lynn Portrait
Joanne Lynn, MD

By Joanne Lynn, MD

Nursing homes are so widely shunned as being thoroughly undesirable that many advocates have proffered that they should be shuttered, and all care of disabled persons should be “in the community” and not in facilities. That refrain is growing with the obvious risks of COVID-19.

I believe that we need to take this crisis as an opportunity to revise how we deal with long-term disability and the need for services and supports by persons who cannot manage daily living for themselves. Who makes up the populations that probably should have nursing homes available? I think there are five general categories for adults (I’ll leave children to others who have relevant experience):

(1) Adults discharged from hospitals who need a short period of around-the-clock support and therapy in order to be capable of going home (or to another community setting), often in part because their home situation does not provide enough appropriate and reliable support;

(2) Severely brain-damaged persons, e.g., from severe dementia, strokes, or hypoxia, who are unaware of their surroundings, and lack available family or loved ones to assist with in-home care, even though most will still be capable of suffering from adverse symptoms;

(3) People who need a great deal of personal assistance or supervision (for example, around-the-clock paid care) and who do not find it very important to live independently in the community rather than in a home-like and reliable congregate setting;

(4) Elderly people with substantial care needs who prefer congregate living and either can pay for it privately or the costs to public funds are lower in this setting; and

(5) People who need an in-patient setting while dying. Inpatient hospice should be available for serving this group. It is a serious shortcoming of the present arrangements that dying elders are often sent to skilled nursing for “rehab” because Medicare covers that service, when what they really needed was inpatient hospice care for a short time, mostly less than a month.

What sort of facility environment is ideal for each of these populations? We might especially consider the post-hospital and unaware categories (1 and 2 above), in contrast to persons who need long-term supports due to substantial disabilities (3 and 4 above). For those first two groups, the nursing facility can be set up to feel rather like a hospital – let’s call it “post-hospital.” The post-hospital resident will not stay more than a few weeks and does not expect to make friends.  The severely unaware resident may stay for years, but still will not be able to make any personal connections. The staff will care about these residents, but a less home-like setting is not likely to have a negative impact on the residents.

In contrast, the usual elderly person living with serious disabilities (#3 and 4 above) needs an environment that is set up for living – comfortable, home-like, conducive to conviviality, and responsive to personal preferences and priorities. This really should become the resident’s home. The care plan needs to be anchored in the resident’s situation and preferences, and it needs to be flexible to accommodate communal living, just as it is in family living. In general, these facilities need to be set up to be, or to seem to be, relatively small groups where staff and residents get to know one another and collaborate.

The hospice in-patient environment needs to be home-like and comfortable for visiting, but it does not need to try to create long-term relationships, create a home or have shared activities like a long-term residence should.

Whatever images you fill in to customize your vision of ideal long-term care facilities, you’ll agree that current nursing homes mostly fall far short. Not only might they be regimented, understaffed, and unresponsive; but with COVID-19, they have become very nearly prisons without visitors. For more than three months, most nursing homes have barred nearly all family and friends – and even ombudspersons and consultant physicians. Residents have been restricted to their rooms and, if the facility has all the recommended personal protective equipment, the residents have not seen a smile or felt a human touch for all that time. Neither the residents nor their families were asked about this plan.

Imagining myself as a nursing home resident with profound physical disabilities but substantial awareness, I would prefer to take my chances with COVID-19, prudently, in order to visit with family, to experience group activities, and to hold a hand. I don’t know how many residents would feel as I do, if they were aware of their likely future course with “protection” and with more “openness.” But I do know that none were asked, and none are being asked, about the merits of these policies. I’d consider this to be age-ist in a most repugnant way. Public health has the authority to constrain self-determination for a while, but surely not for so long. We’ve been willing to impose solitary confinement on 1.3 million nursing home residents without input from them or from those who love them – for about 4 months, which is a large proportion of the rest of their lives.

We must not allow the experience of COVID-19 to mean that all facility-based long-term care becomes as sterile as hospitals often must be. Directions that would be more helpful and appealing would include having much smaller settings, so that outbreaks of COVID-19 or future infections would be easier to contain. Staff should be paid enough and should have career satisfactions so that they can work in one setting and continue to support and befriend a set of residents over time. Facilities should be ready to deal with necessary isolation and potential expansion to help serve their communities. Families, friends, and community groups should be welcome, except for short periods when community infection risks are too high. All residents should have comprehensive care plans, including how to address worsening health status. Medicaid rates must be high enough to support good care and fair wages. Facilities that rely on Medicare or Medicaid payments should be required to spend 85% of their revenues in direct patient care, parallel to the “medical loss ratio” for medical care insurers.

It’s time to rethink facility-based long-term care – its aims, its financing, its place in the society. Let’s be ready for the opportunities for reforms that might be upcoming.

Jan 272020
Anne Mongomery & Nils Franco
Authors Anne and Nils

By Anne Montgomery and Nils Franco

As the age wave rapidly transforms Medicare and the wider U.S. health care sector during the 2020s, policymakers and stakeholders are starting to pay much closer attention to including supportive services as part of the continuum of health care delivery. A growing number of Medicare Advantage (MA) plans are now offering certain limited supplemental long-term services and supports, such as transportation and personal care. Community-based organizations (CBOs) are eager to expand to provide these and other services, and more Area Agencies on Aging (AAAs) are forming networks in order to contract with a range of health care organizations. And in the Medicare fee-for-service (FFS) sector, an expanding array of Alternative Payment Models (APMs), starting with Medicare Accountable Care Organizations (ACOs), are being developed and implemented to incentivize both practitioners and beneficiaries to shift toward more coordinated models of service delivery and tighter financial integration.

Following is an examination of an array of models that are aiming to foster better coordination, quality oversight, and efficiency in care for tens of millions of Medicare beneficiaries who need both medical care and supportive services.

Current Transformative Models in Medicare

At their core, Medicare ACOs are hubs of doctors, hospital(s), and other medical care providers that share financial and clinical responsibility for providing good care while also limiting unnecessary spending. Where successful, ACOs receive incentive payments that reflect a share of Medicare spending reductions for patients attributed to them. They can take on various structures of ownership, risk and decision-making power held by constituent medical practices. The Direct Contracting (DC) model recently announced by the Center for Medicare and Medicaid Innovation (CMMI) may prove attractive to a subset of ACOs, because it offers greater flexibility for contracting with non-medical organizations, and it lets participating entities capture a larger share of savings (by taking on more downside risk). Direct contracting may attract other types of health care organizations, including some PACE (Program of All-Inclusive Care for the Elderly) plans.‎

In related work, CMMI is encouraging more comprehensive care planning and service provision by primary care practices through medical home models. The Comprehensive Primary Care Plus (CPC+) initiative, for example, pays medical home practitioners to coordinate their patients’ primary care and their referrals for certain tests and specialists. Medical home practitioners are also eligible to receive a modest bonus tied to achieving benchmark quality measures such as lower preventable hospital readmissions or patient-reported care coordination. Notably, the CPC+ model requires participants to “identify patients’ high-priority health-related social needs and resources available in your community to meet those needs.”

Starting in 2021, CPC+ will evolve into the higher-risk Primary Care First (PCF) model, in which primary care practices will help their patients follow through on all services for which they are referred. Both clinical quality and patient experience measures – including use of advance care planning as well as patients’ survey responses, blood pressure and glucose levels, and cancer screening rates – will be used to determine which PCF practices are eligible for bonuses. The PCF model also ties payment to attributed beneficiaries’ overall Medicare spending. To succeed in this model, therefore, practitioners must be able to effectively track their patients across multiple care settings.

A more specialized PCF model for seriously ill beneficiaries whose care is hard to predict – those who frequently use the emergency room and incur high hospital costs, and who lack a consistent primary doctor – will also be implemented. PCF practices must change seriously ill beneficiaries’ pattern of health care, and they must establish a cohesive plan to link and track these patients with other medical and social services providers.

Together, these CMMI models, especially newer forms that pay flat amounts per beneficiary, have the potential to provide a new source of referrals to CBOs and to thereby expand the reach of supportive services to the frail and chronically ill elderly. For the medical sector, the new models are making physicians and hospitals more aware of the social needs of beneficiaries they see. In ACOs and in MA plans, screening for social determinants of health (SDOH) has translated to only modest growth in referrals for supportive services to date. But actually connecting patients to a reliable source of supportive services is key to keeping beneficiaries with multiple chronic conditions out of crisis. Closer business and service delivery relationships between CBOs and medical providers are needed to reduce costs and improve care.

Partnered Efforts for Population Health in the Community

Screenings are fundamental to the Accountable Communities for Health (ACHs). The movement gained steam through CMMI’s State Innovation Models, and AHCs now have funding for screening for supportive care needs and navigating Medicare and/or Medicaid enrollees to community resources under a demonstration that runs from 2017 through 2022 (the Accountable Health Communities Model). In general, ACHs are local collaborations that ask the public health, social services, and medical sectors to act together in order to address social issues that face their constituents and affect their health. A medical partner or other “bridge organization” conducts screenings, and the ACH works with supportive services providers to try to ensure that referred clients are linked to follow-on services.

While ACOs and primary-care medical homes receive medical system dollars to conduct screenings and to send referrals to CBOs, CMMI’s model for ACHs includes public health agencies, LTSS providers, and CBOs, and investments in IT infrastructure and capacity can be shared among participating organizations. The demonstration’s bridge organizations include a broad range of medical and non-medical groups: they include hospital systems, public health departments, and direct service nonprofits. There are also ACHs with other sources of funding. Overall, ACHs aim to create change “through integration with delivery and payment system reform, and funded by both private and public payers,” according to a 2017 survey, which notes that to date, some ACHs have been slowed by the capacity of partners to raise start-up funds and to communicate across organizations.

Catalysts Needed to Continue Innovation and Coordination

Additional reforms are needed, as illustrated by a 2018 survey (Bleser et al, Health Affairs, June 2019) of ACOs serving seriously ill Medicare beneficiaries, which identified significant infrastructure deficits in data, analytics, social supports and workforce. Surveys of CBOs and AAAs about their contracts with the health care sector have identified persistent barriers to collaboration, as documented by the Scripps Gerontology Center and the Aging and Disability Business Institute at the National Association of Area Agencies on Aging (n4a). Both financial risks and the “time it takes to establish a contract” were cited as barriers, and CBOs cited a need for more sophisticated data systems to contract with health care partners. The survey also found that CBOs seeking new business opportunities in the health care sector have often opted to join a “coordinated group of community-based organizations that pursues a regional or statewide contract with a health care entity” (Kunkel et al., 2017, and Kunkel et al., 2018). This shows a path forward to improve community infrastructure and financing opportunities for programs, attractive to both grantmakers and investors.

Building on new incentives and referral sources in the health care system, entrepreneurial community-anchored delivery systems can be flexibly designed to serve larger numbers of older and disabled adults – before the full impact of the age wave arrives. This could be done by encouraging partnerships among interested health care organizations, such as PACE and D-SNPs, to partner with CBOs in order to create linked networks that serve Medicare beneficiaries who need both health care and supportive services. Locally focused arrangements of this sort, which we refer to as Community-Based Health Organizations (CBHOs), could be developed and built out in grants for planning, piloting and dissemination.

Lawmakers Wrestle with Financing and Capacity Needs

On Capitol Hill, policymakers are continuing to become more aware of the role of supportive services in eldercare. For example, in a November 2019 hearing before the U.S. House Ways & Means Committee, witnesses testified about improving nursing home and hospice quality, family caregiving, the growing number of older Americans with Alzheimer’s, and taking steps to build out long-term services and supports (LTSS). Altarum Senior Policy Analyst Joanne Lynn highlighted work conducted by UMass Boston and the Urban Institute that could undergird development of federal legislation that covers the “tail end” of long-term care risk using a social insurance model that could be financed by an additional 1 percentage-point increase in the Medicare payroll tax for workers older than 40. To cover “front end” risks, Dr. Lynn suggested testing a variety of options, including adding limited supportive services coverage to Medigap plans serving FFS beneficiaries, as is being considered in Minnesota.

Kickstarting New Collaboration

Over the next 10 years, Medicare service providers seem likely to move much further in the direction of integrating more services across settings and time, aligning with incentives provided by various contractual arrangements, bundles, and initiatives that pay health systems based on overall costs to Medicare. For community service organizations that serve the frail elderly population in traditional Medicare, new partnerships are now encouraged that can unlock new opportunities to expand service capacity and infrastructure. The question, for funders and entrepreneurs, is how to kickstart and optimize those collaborations among interested CBOs and health care organizations.

Varying configurations of CBOs and health care organizations are possible, allowing communities to design linkages for their needs. For example, some CBHOs might involve PACE programs, Medicare special needs plans (D-SNPs or C-SNPs), Medicare Advantage plans, larger health care systems, and Federally Qualified Health Centers and/or Rural Health Clinics. Fundamentally, such collaborations would have an anchor institution – one that has expertise in serving Medicare beneficiaries and a predictable source of revenue from CMS. The institution would collaborate with AAAs and CBOs to address the needs of high-risk Medicare and dually eligible beneficiaries who are identified as needing ongoing assistance and supportive services to remain at home (or other setting of choice). Contracts between an anchor organization and CBOs could be designed to both organize packages of services for older adults and to grow and gradually expand the number of older adults able to benefit from highly coordinated and comprehensive services. In addition to the satisfaction of improving care, organizations participating in a CBHO-type partnership might benefit financially through contractually apportioned shares of any savings realized.

For both health care organizations and CBOs, a new era is afoot. CBOs are poised to address health-related social needs for older adults with upstream interventions at much lower cost. This may spur health care innovators to see that investing (or reinvesting) in supportive services for aligned or enrolled Medicare beneficiaries makes good business sense, and where referrals to CBOs position medical practice to reap incentive payments, lower net business costs, and/or gain access to a share of savings. These insights, among others, are embedded in CMMI’s PCF and DC models, which are taking steps to encourage innovators to enter into formal relationships with CBOs. Similar relationships have already been fostered under private insurance plans and through Medicaid, but new flexibility in the approach to FFS Medicare beneficiaries with complex needs means that this important group of seniors is likely to be at the center of a new wave of contracting.

In the process, CBOs will need to make an accurate case for the value of their services; and, they will need to rapidly develop the capacity to both analyze and to share information with health care providers. Beyond that, they may find it in their interest to participate in organizational hub CBHO-type arrangements that handle financing, referrals, contracts and ongoing operational activities. From the beneficiary or client’s perspective, a CBHO could mean that services might be coordinated and delivered more reliably. CBHOs could also promote partnerships, not unlike ACOs, which act as hubs for various medical practices that are striving for improved coordination between settings and for greater efficiency.

Nov 132019
Dr. Lynn testifying before Congress.
Dr. Joanne Lynn, MD

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

Read Dr. Lynn’s comprehensive written testimony by clicking below.


Apr 302019
Portrait of Sarah Slocum
Sarah Slocum

By Sarah Slocum

Across the U.S., we see more and more reports about a shortage of well-trained staff who are committed to providing in-home and other long term supports and services. The pinch of the shortage is apparent in many communities where it’s difficult to execute in-home service plans, and residential providers struggle to stay adequately staffed. We all see this problem, but what are we doing about it?

An upcoming Michigan Department of Health and Human Services Long Term Care Study, including Workforce, is described in legislation Altarum and PHI, will lead the workforce component of the study that will formally quantify the current workforce and its future and make recommendations for how to meet the growing need for recruiting new caregivers. Some have asked, “Why study this again? We already know it’s a problem.” By now, everyone agrees – it has become urgent to develop consensus around an action plan and move rapidly to implement solutions. That is the mission of our study – to analyze what causes shortages; to agree on what can make entry-level caregiving jobs economically competitive and to create a plan that outlines continuing education, training, promotion, and mentoring practices that can transform currently dead-end jobs into rewarding and sought-after careers.

One issue to tackle is inadequate pay. When entry-level caregiving jobs compete with retailers, it is no surprise that those less complicated and less personally stressful retail positions are filled first. So raising pay levels in stepwise increments is one obvious answer. But beyond pay, we can already see a need for skills-based, value-focused career ladders that motivate direct care staff to stay and advance as they gain experience, take extra training, and acquire new competencies. Proposals like Advanced Care Aides, Mentor Caregivers, and Lead Direct Care Workers (see a summary at: are gaining momentum as avenues for professionalizing the field of direct care into one that encourages entry-level employees to be part of larger care teams – to take partial responsibility for good patient outcomes that are in turn linked to the possibility of greater recognition and reward.

In California, the California Future Health Workforce Commission ( has a plan to eliminate the state’s shortage of care workers by 2030. A state investment of $3 billion over the next 10 years will support changes in education, training, and recruitment of workers, and includes strategies to address care worker shortages in rural areas with particular focus on the needs of people of color. California chose to take a hard look at the worker shortage and created a bold, multi-faceted set of solutions that can serve as a template for action in other states.

In Michigan and elsewhere, issues we already know about include the need for employee supports in areas like benefits, paid time off, childcare, transportation support and better training. How do we actually address these issues? Again, studies are an important first step – but they must be structured to lead to follow-up and implementation. Altarum and PHI (see PHI’s 2018 report on workforce at will collaborate to quantify typical benefits packages for direct care workers today and estimate costs for improving them. We’ll also focus on the costs and possible return on investment for employers opting to offer ongoing training programs to help their staff accumulate new skills. And we will endeavor to examine whether a case can be made that a well-trained and well-supported workforce can lead to better patient outcomes.

As one care worker in Michigan recently said, “It is my mission to care for people, and I don’t quit even though there are many hardships. Just a little help – a little more support, can keep me and my co-workers providing care. But we need the help now!”

Nov 282018
Photo of Anne Montgomery and Aging Today Logo
Anne Montgomery

By Anne Montgomery

Originally published in AgingToday Volume xxxix: Number 6; November–December 2018 and is reposted here with permission.

In America and worldwide, the “age wave” has gathered in force—no more so than in Japan, where 27 percent of the population is already older than age 65, a number that will rise to 40 percent by 2060. Policymakers, spurred by widespread public interest in Gratton and Scott’s influential book, “The 100-Year Life” (London, UK: Bloomsbury Publishing, 2016), recently em¬braced this stark demographic fact.

International Efforts to Help Family Caregivers

Japan’s Prime Minister Shinzo Abe in 2017 convened a “Council for Designing 100-Year Life Soci¬ety,” directing members to expand “social security for people across all generations,” and institute free early childhood education and daycare and other “measures to secure the necessary caregiv¬ing personnel for reducing the number of people who leave employment to provide nursing care to zero.” The Council has met nine times, each time chaired by Abe.

A relatively new advocacy community that has sprung up to support family caregivers wel¬comed Abe’s efforts. Founded in 2010, the nonprofit organization Carers Japan has developed ini¬tiatives and objectives, notably enactment of a law to outline carers’ rights. The organization is helping and advising the Liberal Democratic Party, and others, to set up a parliamentary group for carers. Carers Japan also is sponsoring study groups for local politicians interested in amending city regulations to champion carers’ needs and priorities.

In the labor sector, advocates are pressing for added employment flexibility, to make it possible for carers to both work and support an ill or disabled loved one living at home. A recent change al¬lows Japanese workers supporting family members who need full-time medical care to take unpaid leave in up to three installments ( The maximum leave for years has been 93 days, and the legal entitlement belongs to the cared-for person, who has that amount of time to spend across his or her lifetime, which family members may use ( Japanese companies are not required to pay employees during family care leave; if no wages are paid or only a partial wage below 80 percent of the worker’s base wage is paid, an employee can draw 40 percent to 80 percent of his or her base pay from unemployment insurance (

These issues are becoming more prominent in many other countries. In the Middle East, Care¬givers Israel, launched in 2014, formed solid corporate relationships, and sponsors advocacy ini¬tiatives focused on paid and sick leave, new social security support for those caring for an ill family member and severance pay for people who must leave employment to care for a disabled family member.

In Asia, Carers Hong Kong formed to engage the government on pressing challenges—the need to invest in building a much larger workforce of paid aides, nurses and other personnel to support older adults and individuals with disabilities. In Europe, Carers Denmark organized in 2014 around a “Carers Charter,” which includes developing standardized caregiver training; creating caregiver consultants in all local municipalities to organize respite and daycare, and to conduct outreach to families and carers; and promulgating policies for political parties that speak to carers’ “rights and circumstances.”

Progress Being Made, but Challenges Remain

Making sustained gains that support family caregivers requires investing in more reliable communi¬ty services, and realizing a clearer understanding of family caregiver needs and wants. Underfunded community care and fragmented medical and community services across multiple providers and siloed settings could easily thwart significant progress. This is a particular challenge for America, where accountability for “whole person care” remains diffuse and elusive. Further reforms to promote employment flexibility—unpaid leave and teleworking—are needed, along with more focused pol¬icy discussions about the importance of paid leave to support family caregivers and people strug¬gling to cope with unexpected periods of illness and disability.

Among Organisation of Economic Co-operation and Development (OECD) nations, the U.K. has the richest history of advocacy and political work on behalf of carers. Founded in 1988, Carers UK is a continuation of earlier organizations, including the National Council for the Single Woman and Her Dependants, which secured the first tax benefit for carers in 1967, the Dependant Relative Tax Allowance. Following devolution 30 years later, Carers UK expanded into associated organiza¬tions—Carers Wales, Carers Scotland and Carers Northern Ireland.

Today, Carers UK champions rights to paid care leave and increased flexibility in the labor mar¬ket. Its 2013 report, The Case for Care Leave (, notes that “with the public expenditure costs of carers feeling unable to continue to work estimated at £1.3 billion a year, it is crucial that we take steps to help carers in work. There is an opportunity to turn these losses into economic gains, with public finances seeing an estimated £1 billion in additional tax revenues if car¬ers can be supported back into the workplace.”

The report argued that “a statutory entitlement to care leave would help many carers to juggle their caring responsibilities with work in a sustainable and manageable way, making them more productive and less stressed, and saving businesses and the economy money in the long run.”

In the healthcare sector, policymakers are preparing to issue in November 2018 a new Long-Term Plan for England’s National Health Service (NHS), which will extend until 2028 ( Carers UK and other advocacy and political organizations are consulting with government officials to help shape the NHS plan with regard to carers.

New Policies on “Caregiver Strategies”

Though “caregiver strategies” are being developed in various countries, a 2016 OECD chart (; p. 5-12) makes clear that countries are all over the map on how they structure care¬giver leave rights. Italy allows two years of paid leave over an employee’s lifetime, at 100 percent of earnings up to a ceiling, and Sweden provides paid leave at 80 percent of earnings up to a ceiling in episodes that can be up to 100 days. Cyprus allows only seven days of unpaid leave per year. The United States, under the Family Medical Leave Act, provides up to 12 weeks of unpaid leave for employees who have a year’s worth of service and work for medium-size and large firms.

Currently pending in the U.S. Congress is the Family and Medical Insurance Leave Act, which would provide paid leave for up to 60 days a year. Several states, including California, New Jersey, Hawaii, Rhode Island, New York and the District of Columbia, have already enacted state paid leave programs (

In recent developments, the Progressive Policy Think Tank’s 2016 report, Caring for Our Carers: An International Perspective on Policy Developments in the UK (, notes that “Australia’s and Canada’s Human Rights Commissions are leading the way in emphasising what a human rights approach to care and caring can bring, in starting to articulate a right to care, and in setting out the frameworks needed to make caring a real choice for carers and those needing sup-port.” The report also notes that “Japan, Germany, France, Belgium, Sweden and other countries are now using their long-term-care insurance schemes and tax systems to stimulate the develop¬ment of a wider range of care, household and personal services to ensure there is good support for care at home.” In America, there are plans to craft a federal blueprint for action following enact¬ment of the RAISE Family Caregivers Act in early 2018 (

In Europe today, there are an estimated 100 million caregivers, according to Carers UK. In Amer¬ica, though estimates vary, the number of family caregivers supporting older adults is reported to be about 44 million. In other surveys, four in 10 Americans report they are caregivers (; in Canada, half of the population reports having provided support to a chronically ill or disabled loved one or friend at some point during their life ( The reach of politically organized family caregivers seems primed to grow—and for families across the globe, that’s good news.

Anne Montgomery, M.S., is deputy director at Altarum Institute’s Program to Improve Eldercare, in Washington, D.C.

May 242017
Poster showing elder and caregiver

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

How can you help?

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

Dec 062016

By CECAI and Caring Across Generations Staff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jun 202016

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

ISBN-10: 1481266918

List Price $9.95 at

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

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

About Altarum Institute

Altarum Institute ( 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.

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.