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  2. 2. Long-Term Care: Managing Our Future The Voice of Midlife and Older Women 2014 Mother’s Day Report
  3. 3. 2014 Mother’s Day Report CONTENTS BOARD OF DIRECTORS.................................................................................................2 A MESSAGE FROM OWL’S PRESIDENT..........................................................................3 PREFACE.......................................................................................................................5 INTRODUCTION............................................................................................................7 FACTS AND MYTHS ABOUT LTSS...................................................................................8 CHAPTER I: LONG-TERM SERVICES AND SUPPORTS TODAY .....................................10 THE DEMAND FOR LTSS IN THE US ................................................................................ 10 A STEP BACK IN TIME .................................................................................................... 11 WHO PAYS FOR LTSS AND WHERE ARE THE SERVICES PROVIDED?.......................... 14 SPENDING DOWN IN REAL TIME.................................................................................. 16 THE CHANGING FACE OF LTSS CONSUMERS ............................................................ 17 A LIFELONG CONSUMER OF LTSS................................................................................ 18 CHAPTER 2: FAMILY CAREGIVING – THE PROVIDER OF CHOICE FOR LTSS ..............19 A FAMILY CAREGIVER DESCRIBES HER SITUATION.................................................... 22 FUNDING LTSS: THE US AND OTHER NATIONS ........................................................... 23 THE CLASS ACT: A PROMISING BEGINNING.............................................................. 24 LESSONS FROM EUROPE AND ASIA ............................................................................ 26 CHAPTER 3: THE DIRECT CARE WORKFORCE .............................................................27 A COLLEGE GRADUATE DESCRIBES HER DECISION TO BECOME A DIRECT CARE WORKER......................................................................................................................... 29 CHAPTER 4: POLICY RECOMMENDATIONS ...............................................................30 OWL’S LONG-TERM CARE RECOMMENDATIONS...................................................... 32 APPENDIX A: PROMISING PRACTICES.......................................................................33 APPENDIX B: ORGANIZATIONS THAT ADVOCATE AND PROVIDE INFORMATION ABOUT LONG-TERM CARE ISSUES..............................................................................40 END NOTES.................................................................................................................44 1
  4. 4. 2014 Mother’s Day Report BOARD OF DIRECTORS Executive Committee Margaret Hellie Huyck, President Chicago, IL Lida Rodriguez-Taseff, Vice President Miami, FL Joan Bernstein, Treasurer, Finance Chair Brewster, MA Janna Starr, Secretary Salem, OR Tina Bigdeli Peggy Parolin Baltimore, MD Parkville, MO Krista Drobac Audrey Sheppard Arlington, VA Washington, DC Carol Gardner Robin Strongin Portland, OR Arlington, VA Beedie Jones Chicago, IL Bobbie Ann Brinegar, Executive Director Research/Writing: Donna L. Wagner, New Mexico State University Ana Cole, New Mexico State University Contributors: Janna Starr, Oregon Health Authority Suzanne Mintz, Founder of National Family Caregivers Association Meghan Hendricksen, Altarum Institute Center for Elder Care and Advanced Illness Janice Schuster, Altarum Institute Center for Elder Care and Advanced Illness Brittany Reid, OWL Program Manager Cover Art: Layout and Design Amplify Public Affairs Claire Boozer Cruse Thank you to DLA Piper and AFL-CIO for their generous support. 2
  5. 5. 2014 Mother’s Day Report A MESSAGE FROM OWL’S PRESIDENT Happy Mother’s Day! May 2014 This year’s Mother’s Day Report is more than a sobering reminder about America’s need for a comprehensive, coordinated approach to long- term services and supports (LTSS). It is also a call to action. Even though entering the world of LTSS can be one of the most significant life events a person may experience, few older Americans are adequately prepared. Changing demographics and a scarcity of dedicated government funds make the need for planning more critical than ever. OWL has previously addressed the policies and practices involved in providing appropriate LTSS. We will likely need to do so again. Current estimates show that 70 percent of Americans over age 65 will require some long term services and supports for at least three years during their lifetime; and many of us may face a decade or more of very expensive care. It’s important to remember that the discussion of LTSS is not exclusive to elders. As documented in this report, about 40 percent of the consumers of such services are younger than age 65, a population that has been fighting for access, quality, and self-determination in LTSS for people of all ages for decades. Additionally, the caregivers who provide LTSS — a demographic primarily composed of friends and family — are often the most impacted financially. Unfortunately, the U.S. has shown neither the national will nor the wisdom to follow the example of countries like Germany, Japan, Korea, and the Netherlands, where a mandatory system of insurance for comprehensive long term services and supports spreads both the financial risks and the personal 3
  6. 6. 2014 Mother’s Day Report and social benefits of quality lives for the aging population. Modern medicine and technology have extended our life span, and have provided opportunities to improve our health span as well. Today, we have the ability to live with multiple health problems for years, and potentially, in a future of creative accommodations and coordinated services, even decades. It is time to manage that future. The Mother’s Day Report from OWL is a guide to collective action. I am profoundly grateful to the skilled experts who have crafted this report, and to all those who will work to implement its recommendations. Margaret Hellie Huyck, Ph.D. President, OWL National Board of Directors Photo by Jon Bilous 4
  7. 7. 2014 Mother’s Day Report PREFACE The 2006 OWL Mother’s Day Report addressed the topic of women and long- term care. “Women and Long-Term Care: Where Will I Live, and Who Will take Care of Me?” consisted of short essays by leading experts in the field regarding informal caregiving, aging in place, the aging network of services, assisted living and nursing homes, and the direct care workforce. Each expert provided an overview of key issues related to their topic and outlined a set of policy recommendations necessary to improve the quality of and access to long- term care supports and services. Virtually all of the recommendations put forward in the 2006 report are still awaiting policy-level action. Some of the most important recommendations from the 2006 report include the following: • Enact tax credit for family caregivers; • Provide paid family and medical leave benefits on a national level; • Provide Social Security credits for family caregivers who have missed years of work as a result of caregiving responsibilities; • Increased funding levels for home and community based services; • Eliminate institutional bias in Medicaid long-term care policy; • Increase funding for assisted living facilities to expand the availability of this important resource; • Require direct care workers in assisted living facilities to complete state-approved comprehensive training; • Provide adequate funding and staffing for programs tasked with protecting the rights and well-being of nursing home residents; • Improve the wages and benefits of direct-care workers as a mechanism to improve the quality of services. In 2014, long-term care continues to be one of the biggest risks Americans face to their financial solvency, independence and quality of life. The US continues to operate without a national long-term care system that provides quality care and insurance against the catastrophic costs associated with long-term care. In addition to the broad array of issues that have not been addressed on a national level, the American public still lacks understanding about long-term care; where it occurs, who pays for it, how to plan for it and why comprehensive, thoughtful and rational long-term care policy is of importance to all Americans. 5
  8. 8. 2014 Mother’s Day Report In this 2014 long-term care report, we update long-term care stakeholders on important policy and practice issues that have emerged since 2006, including; demographic changes that will continue to shape the nation’s response to long-term care practice into the future, long-term care models in other nations, and finally, innovations that hold promise for the elders of America. In the end notes of the report, we provide a complete bibliography of sources as well as a list of key organizations working on long-term care policy and selected consumer-based organizations. OWL has selected this topic once again for the Mother’s Day report because of its urgency and importance to the well-being of all Americans. The problems associated with long-term care are only becoming more acute as an unprecedented demographic shift takes place in a nation that is still struggling with the ability to provide basic health care to its residents. The absence of national long-term care policy jeopardizes America’s economic future. American families are the current default long-term care system for those who require long-term care services. By dipping into their personal finances and taking time out of the workforce early in life to care for elders and those requiring LTSS, they incidentally shift the financial risk to their own, and their dependent’s own, retirement security. It is our hope that this report will help inform readers about this complex topic, assist them in planning for their own futures, and encourage policy makers to take the actions required to protect the dignity and quality of life of the more than 10 million Americans who need long-term care. In 2014, long-term care continues to be one of the biggest risks Americans face to their financial solvency, independence and quality of life. 6
  9. 9. 2014 Mother’s Day Report INTRODUCTION Long-term care is provided through a complex network of services and support that is tailored to meet the needs of the individual with functional limitations. More than 10 million Americans need long-term care services. About 40% of these consumers of long-term care are younger than 65 years of age. Although the personal risk of needing long-term services is highest among the older population, there are many children and young adults who need ongoing support and services as well. Throughout this report, we will be referring to long-term care as “long-term services and supports”, or LTSS. This term more accurately reflects the diverse services and support than the term “long-term care” which implies, inaccurately, a uniform set of services needed by and provided to those with long-term care needs. In reality, LTSS includes an array of services and supports that change over time as the needs of the individual change. A person’s circumstances may evolve based not only upon adapting functional abilities, but also upon the fluctuating nature of living environments and a caregiver’s ability to provide resources. More than 10 million Americans need long-term care services. Photo by Jon Bilous 7
  10. 10. 2014 Mother’s Day Report FACTS AND MYTHS ABOUT LTSS The MetLife Mature Market Institute1 conducted two nationally representative surveys to assess public awareness about long-term care issues and facts. Although the majority (70%) of respondents understood that long-term care involved more complicated services and support than a hospital stay, many of the myths about LTSS persist. Persistent myths include the following: • Demand for long-term care is underestimated by respondents. Only 36% correctly estimated their risk for long-term services over the age of 65 as correctly being between 60 and 70%. • Most (55%) of the respondents believed that the majority of long-term care was received in a nursing home. Most LTSS are received in the home of the person receiving long-term care. • One third of the respondents believed that Medicare and related products cover long-term care. In fact, Medicare does not cover any long-term care. Health insurance and disability insurance do not cover long-term care either, with the exception of limited home health benefits. • Most respondents did not realize that family and friends are primary providers of LTSS. In a recent (2013) survey of Americans 40 years of age or older, The Associated Press – NORC Center for Public Affairs Research explored attitudes and experiences of adults related to long-term care 2 . The survey included a nationally representative sample of 1,019 Americans. One of the key findings of the survey was that, although respondents were concerned about their own aging, few had taken steps to plan for their own old age or long-term care needs. Not surprisingly, there were many misconceptions about how long-term care is paid for, including the common myth that Medicare covers long-term care. On the positive side, the majority of respondents support public policy options for financing long-term care, including tax incentives to encourage savings for long-term care expenses. 8
  11. 11. 2014 Mother’s Day Report Here are some key facts that are important to bear in mind as you think about LTSS in the US: 1. The US does not have a national program to provide or pay for long-term services and supports. There is no LTSS safety net. 2. Medicare, while an important health care resource for elders, does not cover LTSS. 3. Most LTSS take place in the home and the community. Only 4% of older adults reside in nursing homes. 4. LTSS does not include health care services or nursing services needed to manage health care. 5. The primary providers of LTSS today are friends and family who provide ongoing assistance and who often pay for needed services out of pocket. 6. Many of the long-term care insurance providers have left the long-term care insurance marketplace and fewer private care insurance options remain for the consumer. Costs of long-term care insurance are based on age and gender, making it an expensive proposition if the consumer did not acquire a policy early in life. 7. The direct care workforce – professionals who provide personal care and home health services – continue to be poorly paid and poorly trained. In addition, there is a shortage of direct care workers today, which is expected to increase substantially in the future as the demand for direct care increases. Photo by Oleg Golovnev 9
  12. 12. 2014 Mother’s Day Report CHAPTER I: LONG-TERM SERVICES AND SUPPORTS TODAY In this chapter, we will review the demand for LTSS today, the characteristics of the consumer, and how an increasingly diverse consumer population changes the nature of LTSS. LTSS consist of a wide array of support services needed by individuals with functional limitations. These services and supports are provided by informal sources such as family and friends, home and community-based service providers, and in some cases, through a residential environment. LTSS are not medical services or services provided by medical professionals. Rather, these services are basic non-medical services such as meals, shopping, bathing and house cleaning, help with medication management, arranging needed services, transportation, and any of the activities of daily living individuals are unable to perform themselves. THE DEMAND FOR LTSS IN THE US Population aging and the increase of “oldest-old” Americans (over the age of 85) are key drivers of the demand for LTSS in the US. Over the next four decades, the age structure of the nation will change as a result of both the aging of the baby boom generation and immigration. By 2030, the 65+ population will shift from its current 13% to 19% of the American population. Most importantly for this discussion, the oldest-old (85+) group will increase in size from 5.8 million in 2010 to 8.7 million in 2030. And, not only is the potential demand for LTSS increasing as the oldest-old population size grows, this group is also projected to substantially increase in racial and ethnic diversity. By 2050, the older population is projected to be made up of 42% minority elders – an increase of 20% from 2010. Not only is the older population growing in numbers and ethnic and racial diversity, but this population is also more highly educated than those elders who came before. This increased educational attainment will provide additional diversity to the consumers of long-term services that will shape their demand for services and options as they age. According to a policy paper by Robert Wood Johnson Foundation, “In 2010, 40 million people were age 65 and older. This number is expected to jump to 88 million by 2050”. This report also predicts that for those turning 65, 40% will 10
  13. 13. 2014 Mother’s Day Report require LTSS for two or more years. The projections of the increased size of the oldest-old population are even more sobering since this group is at highest risk of needing LTSS. Compared to the 5.8 million oldest-old in 2010, there will be an estimated 19 million oldest-old in 2050. A STEP BACK IN TIME If you grew up in the 1950’s, you were likely to have a grandmother sharing your home. Some have misinterpreted this co-residence as evidence that families took better care of their elders in the “good old days”. In fact, sharing a house with an elder was a simple matter of economics. Most elders did not have Social Security to help with their living expenses. Welfare programs were modest and provided only a few dollars monthly to a widow. McGarry & Schoeni (2000) examined co-residence and the advent of Social Security benefits for widows and found that the percentage of widows living alone increased from 18% to 62% in 1990 and, conversely, the percentage living with adult children decreased from 59% to 20%3. At that same time, Americans did not have as much of a need for concern about long-term care as they do today. The average life expectancy in the 1950’s was low and, although many elders lived into their 80’s and 90’s, these were people lucky enough to avoid accidents and serious chronic disease. Neither geriatric medicine nor Medicare was available. Medical practices and pharmaceuticals available today to extend both the length and quality of life were not available during this time. And there were no LTSS to support an elder in the community. It was a different time to be old. Today, modern medicine and services have extended the life span but not necessarily the health span. Older adults with multiple health problems typically can look forward to living with these health problems for years and, in some cases, decades. Access to health care, medication and health care innovations have all played a role in the improvement of life expectancy. Women continue to live longer than men and are the majority of the LTSS consumers. Male life expectancy is improving, however. It is anticipated that the sex ratio (number of men per hundred women) for elders 90 years and older will increase from 39.5 in 2010 to 57.1 in 2050.4 According to the Centers for Disease Control and Prevention, National Center for Health Statistics, life expectancy at both age 65 and at age 85 have 11
  14. 14. 2014 Mother’s Day Report increased. An elder reaching age 65 can expect to live an additional 19.2 years (five years longer than their 1960 counterpart); and at age 85 women can look forward to 7 more years with men averaging 5.9 years of additional life. White Americans have higher life expectancy than Black Americans until they reach 85 years of age; at which time a Black American has a slightly higher life expectancy than a White American. Nonetheless, life expectancy of Americans continues to lag behind other industrial nations – see Table I. If you grew up in the 1950’s, you were likely to have a grandmother sharing your home. Photo courtesy Getty Images 12
  15. 15. 2014 Mother’s Day Report Table I: Life expectancy at birth for women in highest and lowest expectancy nations Highest life expectancy nations AGE Lowest life expectancy nations AGE Japan 87 Lesotho 48 China, Hong Kong 86 Afghanistan 49 France 85 Sierra Leone 49 Italy 85 Swaziland 49 Spain 85 Guinea-Bissau 50 Switzerland 85 Zambia 50 Australia 84 Botswana 51 Austria 84 Central African Republic 51 Cayman Islands 84 Dem. Republic of Congo 51 China, Macao 84 Chad 52 Guadeloupe 84 Mozambique 52 Iceland 84 Israel 84 Martinique 84 Republic of Korea 84 Singapore 84 Sweden 84 Canada 83 United Kingdom 82 United States of America 81 Source: United Nations, July, 2012. 13
  16. 16. 2014 Mother’s Day Report Older adults are a higher risk for LTSS than younger adults. Chronic illness, dementia, and disability are more likely to adversely affect an individual’s functional abilities. An individual’s need for LTSS is assessed by their functional status. Assessing the extent to which an individual needs help to take care of Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) are two common assessments used to determine the need for LTSS. LTSS does not include medical care or nursing services needed to manage medical care. In a recent analysis of the consumers of LTSS, O’Shaughnessy estimates that 11 million adults over the age of 18 receive LTSS.5 The majority (57%) are 65 years of age and older, with 43% between the ages of 18 and 64. There are many different estimates of the individual risk of needing LTSS. For example, the US Department of Health and Human Services predicts that 70% of Americans over the age of 65 will require some LTSS during their lives. WHO PAYS FOR LTSS AND WHERE ARE THE SERVICES PROVIDED? LTSS take place in a range of settings depending upon the ability to pay for costs. Nursing homes are the most expensive LTSS setting, averaging more than $80,000 a year. Assisted living facilities provide another LTSS alternative for the private-pay elder. Other LTSS settings include home health care, adult day services on a daily basis for those who need supportive care during the day, and a range of home and community based services such as meals, transportation services, and social activities. In 2011, the total spending for LTSS was $210.9 billion. The largest portion of this spending was for nursing homes and related facilities (61%). The costs of LTSS by source were estimated by O’Shaughessy (2013) as follows: MEDICAID - 62% OUT-OF POCKET SPENDING BY CONSUMERS AND/OR THEIR FAMILY MEMBERS - 22% PRIVATE LONG-TERM CARE INSURANCE AND OTHER INSURANCE - 12% OTHER PUBLIC (VETERAN’S AFFAIRS AND STATE FUNDING) - 5% 14
  17. 17. 2014 Mother’s Day Report Medicaid funds pay for poor American’s nursing home costs and various Medicaid waivers help provide them with home and community-based services. Medicaid home and community-based services waiver funding varies dramatically by state. In Oregon, for example, 83% of the LTSS spending supports home and community-based services. In contrast, Medicaid waiver programs fund only 24% of home and community-based services in Mississippi. Although there is a national effort to re-channel Medicaid funding from residential settings to home and community-based settings, the decisions and approach are determined by each state. In the US, the payment system for LTSS is inadequate for the care of those who currently need LTSS. Absent a funding source for LTSS, many Americans rely upon their family and friends for help. Others go without any LTSS at all. Few Americans can afford the more than $80,000 a year to receive care in a nursing facility or the $30,000 per year it costs to receive just 30 hours of home care a week.6 Medicaid waiver programs that cover home and community- based services cannot meet the demand for LTSS and often require long waiting periods before eligibility begins. What happens when an individual needs LTSS but has limited resources to pay for these services? Medicaid funding requires a “spend down” to poverty levels in order to qualify. This process requires an individual to pay out of pocket, using their own savings or assets to pay for needed services until they are impoverished, at which time they then meet the income eligibility guidelines of Medicaid. Under spend-down requirements, there is only a limited guaranteed protection of some assets for the spouse of the person spending down (refer to the 2014 SSI and Spousal Impoverishment Standards). Spending down to Medicaid eligibility occurs on a regular basis for many Americans living without adequate savings to accommodate unplanned health or living expenses. Weiner, et al (2013) observed that between 1998 and 2008, nearly 10% of the non-Medicaid population over the age of 50 spent down to eligibility. Interestingly, half of the people who spent down to Medicaid eligibility did not use any LTSS. Rather, these individuals spend down to eligibility due to high out–of-pocket medical expenses or other financial exigencies. About 20% who spend down to Medicaid do so in order to use personal care services in the community. And, finally, although it is commonly assumed that spend-down to Medicaid eligibility is primarily a population that is middle class and needing nursing home care later in life, those who spend down have low income and many fewer assets than those who do not spend 15
  18. 18. 2014 Mother’s Day Report down. Weiner and his colleagues suggest that spending down to Medicaid is not an unusual experience but is part of a “larger issue” related to retirement insecurity and more complicated than just the cost of nursing home care. Weiner, et. al., suggests that addressing the care needs in late life will require a mandatory long-term care insurance program that covers LTSS and other long- term care options needed by an aging America.7 SPENDING DOWN IN REAL TIME Mrs. Baker (not her real name) volunteered to participate in a caregiver “out-of-pocket” spending study conducted in 2007.8 At that time, she was 92 years of age and providing assistance to her 94 year old husband. After two weeks in the study, she was having difficulty keeping her diary of expenses, and a research assistant was assigned to her to collect her information about spending over the phone in order to keep her in the study. Respondents who kept expense diaries for the full 30 days were provided with an honorarium of $100. This was an important incentive for Mrs. Baker, who expressed a great deal of anxiety about her financial situation. For the first two weeks of the study, most of her spending was associated with providing money to her niece and nephew to cover gas money to drive her to a nursing home to visit her husband. Mrs. Baker was very concerned about her ability to visit her husband. She no longer drove a car and was dependent upon her relatives for help. She had some help from her neighbor with grocery shopping and a church friend who came by weekly to help with meal preparation. Once the research assistant began speaking with Mrs. Baker on a regular basis, a much more complicated story of caregiving and independence emerged. Mrs. Baker was in the middle of spending down to Medicaid eligibility for her husband’s care. During the month she was in the study, she spent nearly $4,000 for his care at the facility, successfully transitioning him into Medicaid eligibility. Mrs. Baker was very worried about her ability to manage her daily living in her small home and concerned about her own financial situation. The Bakers had no adult children and were relying upon her niece and nephew for help, advice, and transportation. 16
  19. 19. 2014 Mother’s Day Report Mrs. Baker felt overwhelmed by the events occurring around her and her visits to see her husband were her number one priority. She was concerned about doing the right thing in order to make sure her husband had the care he needed and, although anxious about her own well-being, was focused on his care and well-being above all else. THE CHANGING FACE OF LTSS CONSUMERS As described earlier, the older population is not only growing in size, but in diversity as well. The older population is becoming more ethnically and racially diverse. Aging in place, coupled with immigration of older adults, creates a shift in the demand for culturally competent services as well as new and different options. In Montgomery County, Maryland, a large and growing diverse Asian community has translated into an array of senior centers and meal programs that serve Asian seniors. In Las Cruces, New Mexico, meal programs for seniors routinely include ethnic food related to the Hispanic culture and history of the state. Designing meals and center activities that are appropriate for diverse elders is an important quality-of-life feature. Addressing LTSS preferences and designing LTSS with sensitivity to different norms and cultural standards are more complicated activities. The increase in minority elders through 2030 is estimated as follows: HISPANICS 238% ASIAN AND PACIFIC ISLANDERS 285% NATIVE AMERICANS 147% AFRICAN AMERICANS 131% 9 In addition to ethnic and racial diversity, the older population is changing as a result of lifestyle diversity and educational attainment. The growing gay, lesbian, bisexual and transsexual elder community is organizing and participating in the development of services and supports that are consistent with their values and lifestyles and that respect their differences and the factors that influence their values and their place in society. Diversity in the future elder population will also be shaped by other changing demographic patterns. The number of single-person households in the US, for 17
  20. 20. 2014 Mother’s Day Report example, has increased to 27% of all household types since the 1970’s. There are now more than 32 million Americans who live alone. Family households have dropped from 81% of household types to 66% of household types. The US Census reports that part of the shift is a function of deferred marriage and child-rearing. Deferred child rearing and single lifestyle hold profound implications for care needs in old age. Later in this document we will be discussing how some of the early pioneers in organizing new supportive communities for old age are experimenting and making a change that will likely play an important role in designing our future aging communities and adapting to these demographic shifts. A LIFELONG CONSUMER OF LTSS The disability community has been an active driver for quality long-term care services and supports that respect and enhance the autonomy of the individual. Self-determination and choice is important for all, regardless of their limitations. And a “normal” lifestyle supports these goals. Kristy was born with developmental disabilities and significant medical conditions, including a serious heart defect. As Kristy approached adulthood, she and her family were faced with decisions about strategies that would allow her to become as independent as possible while receiving the LTSS she needed to manage her daily living. The choices were limited as the family weighed their options. Should Kristy stay with her family for as long as they were alive or should she move into a nursing facility? In the end Kristy lived near but not with her family. She relied upon services that provided her with roommates and full time staffing to attend to her medical and cognitive support needs. As she grew older and gained more independence skills, she had her own apartment with staffing that provided ongoing help with daily activities and medical needs. When she was in her mid-40’s, Kristy’s medical condition became more severe, constant, and demanding and she was unable to live alone. Self- determined since childhood, Kristy worked with her staff, family, and friends to find the perfect assisted living situation that would meet her long-term needs. 18
  21. 21. 2014 Mother’s Day Report CHAPTER 2: FAMILY CAREGIVING – THE PROVIDER OF CHOICE FOR LTSS Family caregivers have been referred to as the default long-term care system. In truth, they make up the primary care system relied upon by individuals with LTSS needs. The Congressional Budget Office estimated that families and friends provided services and supports on a voluntary basis that were worth $234 billion in 2011. This is the equivalent of 55% of the total LTSS expenses in the US for that year. Institutional care (nursing homes) made up 31% of the actual LTSS budget, home and community-based services were 14%, and the remainder was the imputed value of voluntary services provided by family and friends.10 An estimated four out of ten US adults are involved in providing care and assistance to an elder or sick relative. In fact, the caregiving activity has become so common that an estimated 68% of Americans believe that they will be able to rely upon their family members when they need LTSS. 11 However, the demographic reality may well result in a very different future for those in need of LTSS. Ryan, et al (2012) examined cohort differences with respect to the availability of informal caregivers for the baby boom generation.12 They found that baby boomers might be less likely than current elders to have a child or spouse living nearby and available to provide caregiving when LTSS are needed. This realization is sinking in for many of them who, while taking care of their aging parents, may look around and wonder how this will or will not work for them. In Canada, an interesting study suggests that the “normative” role of the family caregiver may be dissipating. Guberman, et al. (2012) compared today’s baby boom generation with their parents in regard to caregiving roles and assumptions. 13 Their interviews suggest that the standard assumption that caregiving is “normative” and something to be managed as parents age and need LTSS, is being questioned. While respondents were planning on providing some caregiving assistance, they were less clear on managing these tasks without help. Rather, the respondents suggested that they had a high expectation of support services from the Canadian social service system and did not expect to spend their time taking responsibility for the majority of care needed by parents. 19
  22. 22. 2014 Mother’s Day Report In another revealing analysis, Redfoot, Feinberg and House (2013) of AARP’s Public Policy Institute conducted a study to estimate the potential caregivers who will be available for elders needing LTSS over time. Using data from Regional Economic Models, Inc., they developed ratios for caregiver support for the population 80+ based on the population of adults 45-64. They identified three time periods: 1990 to 2010, 2010 to 2030 and 2030 to 2050. Between 1990 and 2010, baby boomers were aging into “prime” caregiving years, resulting in a ratio of 7.2 caregivers for an elder with LTSS needs. Between 2010 and 2030, this ratio declines to 6.1 in 2020 and 4.1 in 2030. Between 2030 and 2050, the ratio declines from 4.1 to 2.9. It is important to remember that this ratio is a theoretical ratio only and does not factor in willingness or ability of family members to provide care if care is needed. One thing seems clear in this analysis: the “free” services and contribution to the LTSS provided by family and friends today will be coming to an end. The questions remain: how quickly family caregiving will begin diminishing and what the effects will be on the LTSS system and the consumers of LTSS. An additional demographic change that is likely to affect that availability of family caregivers in the future is the increase in unmarried baby boomers. Lin, I. and Brown, S. (2012) found that one in three baby boomers were unmarried in mid-life14. The economic circumstances of unmarried women, along with their social resources, place these women in disadvantageous positions compared to others in their age group. Although the US is currently dependent upon the generosity of family and friends to support the nation’s LTSS, both the increase in demand for services as the numbers of oldest-old Americans increase, and the decrease in availability of family and friends, suggest that the party might be over in the near future. These resources simply may not be available to the new generation of older Americans. Planning for future LTSS needs will have to be more proactive than assuming adult children will help their parents out. And certainly, on a public policy level, the reliance upon a Medicaid-based impoverishment model for LTSS must be addressed in order to maintain both the quality of life of our elders and the economic future of our families. In summary, the role of family caregivers is vast and expansive. Most family caregivers are providing hands-on care and managing needed services, and they are also paying for services they cannot afford. Family caregiving takes time away from work and other family members. The average family caregiver spends nearly 20 hours a week in caregiving activities. This is on top of the time 20
  23. 23. 2014 Mother’s Day Report they spend at work and in taking care of other family members. It’s a complicated job, one often accompanied by conflict between other family members and difficulties in balancing work, family and personal needs. For the most part, it is a relatively thankless task that is invisible to the policy makers and decision-makers who are responsible for LTSS. The provision of long-term services by family members is guaranteeing the shift in the costs of LTSS to future generations. As family caregivers leave the workforce to do caregiving, their future retirement savings are adversely affected. As a family chooses to pay out of pocket for LTSS and medical needs not covered by the care recipients’ insurance, the family often makes sacrifices that may negatively affect them in the future. Absent a reliable funding source for LTSS in the future, futures for some American families are being mortgaged now for the wellbeing of the elder. “We have accepted that we need help and because we’ve been open to it, people respond.” —Suzanne Mintz, 2014 Photo by michaeljung 21
  24. 24. 2014 Mother’s Day Report A FAMILY CAREGIVER DESCRIBES HER SITUATION My husband, Steven, has multiple sclerosis. He was 31 when he was diagnosed in 1974. There is nothing unusual about that: MS is a disease of young adults. Fortunately, Steven was able to continue his career as an economist for the federal government, retiring in 2010. I founded an advocacy group for family caregivers, now known as the Caregiver Action Network (CAN). Still, MS has taken its toll over the years, slowly eating away at his functional abilities, first his legs and more recently his arms and his hands. He needs help with – well everything. He’s in a wheelchair, can’t get in and out of bed, or go to the bathroom on his own. He used to be able to feed himself, but now, I often have to feed him. Despite the day-to-day challenges, we have been fortunate. Although MS has taken away Steven’s physical independence, his mind is sound; his wit is sharp; he is still “Steven”. In some ways we have it easier than many other caregiving families. But we have also been realists, making decision with the current and future effects of MS in mind. We are smart and educated, living in the Washington, DC Metro area with access to great medical and community support services. We were a two-income family, which gave us the income we needed to purchase the goods and services that make life so much easier for people with disabilities. But, as we age, life is getting harder. We’ve had help two days a week for some years, but we’ve just added another day. It’s at night, actually. Someone comes to get Steven ready for bed, sleeps over in case he needs help during the night and gets him up, showers and dresses and gets his breakfast. It gives me a chance to be off-duty and rest. We have accepted that we need help and because we’ve been open to it, people respond. Between the paid caregivers and family and friends, we have put together a package that gives us a good quality of life. As stressful as our lives are, I know others have it so much worse. We are a fortunate couple. —Suzanne Mintz, 2014 22
  25. 25. 2014 Mother’s Day Report FUNDING LTSS: THE US AND OTHER NATIONS Population aging and the related increase in the oldest-old presents a challenge for not only the US, but for countries around the world. The global effects of population aging will require significant accommodations in public policy in virtually all nations. Applebaum, Bardo and Robbins (2012) developed a typology of LTSS in order to compare nations.15 According to their analysis, the US is in the middle of this five point typology characterized by funding as follows (nation listed are examples and not a comprehensive list): Group Funding profile Example nations Group 1 Funding for LTSS by public insurance Germany, Japan, Korea, Netherlands Group 2 Mix of public insurance and means-tested programs for LTSS France, Ireland, Spain Group 3 All funding for LTSS is means- tested Estonia, Italy, Poland, Romania, US Group 4 Funds mean-tested but limited Argentina, Brazil, China, Mexico, India Group 5 No public funds for LTSS Bangladesh, Ghana, Kenya In countries listed in Groups 3 and 4, informal family care is essential. In Group 5 informal family care is the only care available. The US has only one public payment system for LTSS and that is Medicaid, a means-test program available only to those with few resources. In the early 1990’s, public policy was designed to foster and subsidize private long-term care policies as a “solution” to the LTSS funding problems (Gleckman, H. 2010). 16 Despite incentives and significant marketing efforts, very few Americans participated in the private long-term care insurance market. Only about 10% of employees with access to long-term insurance benefits have opted into the program. Private marketing of long-term care insurance to the individual market has also had only modest success. 23
  26. 26. 2014 Mother’s Day Report Writing for Forbes Magazine (2012), Howard Gleckman describes the problems facing the long-term care insurance industry today: Consumers remained in the market rather than dropping out before there was a need for the benefits as predicted in the actuarial formula for long-term care insurance underwriters. There were also diminished opportunities for returns on investments of premiums as a result of a down market, and the financial need to modify benefit offerings due to the poor economic situation. Those companies that are remaining in the long-term care market are increasing their premiums, modifying benefits and otherwise making their products less desirable to consumers in the marketplace. Moreover, some of the original insurance companies working in this market are pulling out of the individual market totally (UNUM, Prudential, eg.). Long-term care insurance has not been a successful public policy option for the current or future demands for LTSS despite significant public investment in marketing and subsidization of costs. Gleckman (2012) suggests that there are three elements that are required for a “successful” national long-term care insurance system: consumer choice and flexibility, universal or close to universal coverage and, funding that is stable over time. The US has only one funder for LTSS: Medicaid. New elements of flexibility and choice have been introduced with the “Money Follows the Person” program and the Community First Choice State Plan Option. Both are programs designed to support non-institutional LTSS options, and both are tailored to meet the specific needs of the LTSS consumer.17 Nonetheless, these options are available only to those who qualify for Medicaid. THE CLASS ACT: A PROMISING BEGINNING The CLASS Act, a signature legislative effort of Senator Ted Kennedy, was passed by both the House and the Senate in 2009 and was included in the Affordable Care Act when it was passed in 2010. This program was a voluntary social insurance program designed to provide long-term care coverage to Americans through a cash benefit. An estimated $75/day benefit was envisioned – an amount that would cover some home health services. As designed, only those Americans who were working could join the CLASS Act and pay premiums. 24
  27. 27. 2014 Mother’s Day Report The Act was a dramatic departure from other long-term care initiatives in that it was a public social insurance program. However, participation was voluntary and, in order to support this type of program it would be necessary for a large number of healthy, working adults to sign up for the program. Concerned about the actuarial projections, the Obama Administration reported that they would not go forward with the Act and it was removed from the Affordable Care Act in 2011. Weiner (2013) suggests that, although a CLASS Act model might be revitalized, the voluntary nature of the Act would continue to be limited to the program, and there would likely be political opposition to a mandatory social insurance plan to cover long-term care needs. 25
  28. 28. 2014 Mother’s Day Report LESSONS FROM EUROPE AND ASIA • Many nations, regardless of their location or style of government, are facing a strong and growing demand for LTSS as a result of population aging and a dramatic growth in the oldest-old; • Programs for long-term care and LTSS require a sustainable funding strategy that will provide support for all elders regardless of their income levels; • Most of the nations that have adopted national programs have chosen universal benefits; • Cash benefits over a service benefit has been important in other countries and provides flexibility in the complicated LTSS need paradigm of older adults; • Programs that consider the needs and roles of family caregivers as well as the care recipients offer a more realistic approach to the LTSS formula. To complicate the comparisons to and usefulness of other nations’ models, the US has a very different social and political history than most of the EU nations. The role of government is not viewed in the U.S. as one of taking care of social problems or even, as we are now experiencing, the health care needs of its citizenry. It is difficult to imagine that many people’s attitudes about the role of government will shift just because they are now experiencing first-hand the challenges of providing care for older family members and friends. As described by Wiener (2013: 834): “…baby boomers ...see their trials as a personal rite of passage, instead of a sign of systemic problems in need of repair. Until the personal becomes political and politics drives policy, it seems unlikely that much will change.” 26
  29. 29. 2014 Mother’s Day Report CHAPTER 3: THE DIRECT CARE WORKFORCE LTSS consists of formal services that rely on a workforce of professionals that, for the most part, work directly with older people or younger people with functional health limitations. The 2012 National Study of Long-Term Care Providers demonstrated that the services included the following array of providers: • Adult day services (4,800) • Home health agencies (12,200) • Hospice (3,700) • Nursing homes (15,700) • Residential care communities (22,200)18 Adult day services and home health agencies are of particular importance to the majority of elders who prefer to remain independent in the community despite function limitations they may have or that a spouse of partner may need help with. Many older caregivers find adult day services to be essential to their continued ability to keep a loved one with dementia at home. Home health visits are also of critical importance to an older caregiver when their spouse or partner is recovering from a hospitalization and/or serious illness. The one thing all of these providers have in common is the direct care workforce. There are 1.9 million direct care workers who work as nurse aides and home health aides in the workforce.19 More than 90% of the workers are women. Direct care workers provide personal care and services to more than 13 million Americans and are, more often than not, paid low wages (between $11 and $12 an hour). About 22% of certified nurse aides and 11% of home health aides are immigrants. The Report issued by the Assistant Secretary for Planning and Education for the US Department of Health and Human Services points out that many of these workers have relied upon public benefits (25% received cash welfare at some time and 40% received food stamps). In a 2012 analysis of federal data, Baughman & Smith found that turnover among the direct care workforce was high with an average duration of work for the same employer 9.7 months. Moreover, less than 1/3 of workers leaving a direct care workforce position do so to enter another direct care position.20 27
  30. 30. 2014 Mother’s Day Report The direct care workforce is not only poorly paid, it is very often poorly trained and lacking the basic workforce protections other workers enjoy. Categorized as “companion” workers, these workers have traditionally been exempt from minimum wage and overtime protections. However, as of January 2015, these workers will no longer be exempt from these protections and will be covered by the minimum wage and overtime rules. Those direct care workers who are employed directly by the person they are caring for will continue to be exempt from these protections, as will those workers who are not providing medical services. Training opportunities for the direct care workforce are limited and often do not focus on the geriatric patients this workforce will be assisting. The 2008 Institute on Medicine suggests that training standards for the direct care workforce need to be strengthened and that both the direct care worker and the family caregiver need to be “better integrated into the health care team.”21 Stone & Bryant (2012) reported that the Affordable Care Act (ACA) included important provisions to improve the capacity of both the direct care workforce and the health care provider workforce to provide care to a geriatric population. “The vast majority of today’s workforce caring for elder Medicare beneficiaries has had no exposure to geriatric principles” (Stone & Bryant, 2012:194).22 The ACA included provisions to address the lack of training and expansion of this workforce. Stone & Bryant suggest that the provisions that focus on geriatric training are inadequate due to the nature of the existing workforce. Only 7,000 geriatricians are practicing in the US today, and the ACA care demonstrations rely upon nurses and social workers with no training in geriatrics. Few nurse educators are trained in geriatrics and fewer than half of the schools of nursing in the U.S. have faculty trained and able to prepare future nurses. There has also been a decline in social workers with specific training in geriatrics and a lack of interest by students in both social work and nursing. Social work schools have few internship settings available to students who might want to work with older adults; and, as of the date of the article written by Stone & Bryant, the training provisions in geriatrics had not been funded. A stigma against working with older adults has also been reported in the workforce literature. The Institute on Medicine (2008) suggests that we will need 30,000 geriatricians by 2030 to meet the care demands of elders. In 2010, only 75 residents entered geriatric medicine. Less than 1% of RNs, Pharmacists and Physicians Assistants are trained in geriatrics. Only 3% of psychologists and 4% of social workers 28
  31. 31. 2014 Mother’s Day Report focus their practice on older adults. These dismal statistics predict a problem, if not a crisis, for quality care of the growing older population in the future. The direct care worker needs training and supervision by qualified professionals in order to provide high quality care and manage the stress that is present in the difficult direct care job. A COLLEGE GRADUATE DESCRIBES HER DECISION TO BECOME A DIRECT CARE WORKER When I graduated from college with a degree in visual arts recently, I faced the challenge so many Millennials share: What Next? I needed to make a living. A relative suggested working with older people based upon my involvement with older family members. I applied for a direct care worker position and was hired. When I told friends about my plans, most were shocked. When I started my job, I was shocked. The training was inadequate, the workload unpredictable and uneven. Each client presented an unknown challenge. It was exhausting work but I enjoyed getting to know each and every one of them during the nearly two years I was working in direct care. However, I was appalled by the kinds of care being provided. Like me, my co-workers were hired without any geriatric care training. We watched a short video during our orientation. There was little supervision and the only tracking mechanism was a self-reported journal in each client’s home. I thought a lot about what I could be doing to help the elders I was caring for and how the care system could improve their lives. I also thought about how we might be able to improve our communication with the elders and contribute to their well-being. Photo by hxdbzxy29
  32. 32. 2014 Mother’s Day Report I chose to enter graduate school in a public health program. This is not a typical progression for most direct care workers, who often do the job as a source of second income to try to make ends meet. There is no career ladder for the direct care worker and few options for the direct care worker to gain additional education or training. Instead they are faced with a thankless job and few supports. I know now that it is important to good care for the elder who needs care to plan this care with a geriatric team that includes professionals and the direct care worker. My personal and professional goal is to make care planning an integral part of every frail elder’s care. —Meghan Hendricksen CHAPTER 4: POLICY RECOMMENDATIONS Congress created a Commission on Long Term Care in January, 2013. This 15- member Commission was to review the problem of long-term care and develop a set of recommendations within 100 days. Their report came out in mid-September 2013 and their recommendations fell short of addressing the problem associated with paying for long-term care. Dr. Judy Feder, a member of the Commission and a professor of public policy at Georgetown University, voted against the final recommendations because they failed to address the issues in a comprehensive way. The Commission was set up after the CLASS Act, a voluntary long-term care program, was abandoned by the administration as being actuarially unsound. Dr. Feder and four other Commissioners, who also voted against the report, including Laphonza Butler, Pres. of SEIU-United Long Term Care Workers, Henry Claypool, Exec. VP of the American Association for People with Disabilities, Lynnae Ruttledge, Co-Chair, National Council on Disability, and Judith Stein, Executive Director of the Center for Medicare Advocacy, issued their own set of recommendations on September 23, 2013.23 Their recommendations include the following: • Create a financing solution through the development of a social insurance program that includes a LTSS benefit in Medicare Part A, or as a new public program, so that individuals are not required to carry the burden of long-term care by themselves. 30
  33. 33. 2014 Mother’s Day Report • Strengthen and improve the LTSS Workforce by ensuring workers receive a living wage, are well-trained and have a ladder for advancement. • Develop a national strategy to support family caregivers with policies that include family caregivers in the assessment of the older adult and the care planning process. At the same time, family caregivers need to be assessed along with the care recipient. • Modify Medicare’s post-acute care benefit by removing the three day hospital requirement so those with care needs can receive covered nursing facility services without staying in the hospital or being homebound. In addition, they recommend elimination of annual caps on therapeutic services such as physical, speech or occupation therapies. • Strengthen Medicaid and remove the “institutional bias”, increase funding for LTSS within Medicaid, and increase access to LTSS for people with disabilities. OWL has a long history of advocacy on behalf of women and their families. As was described in the beginning of this report, our 2006 Mother’s Day Report included a number of recommendations for improving the state of long-term care in the country; most of which have not been addressed by policy makers. However, there is now, eight years later, a growing awareness of the problems associated with the institutional bias of Medicaid, the problems associated with the direct care workforce and the family caregiver. Our recommendations are informed by the work of scholars and advocates that we have included in this report as well as our persistent belief that all health care needs to be of high quality, accessible to all, and not dependent upon one’s ability to pay. Our recommendations follow. “I know now that it is important to good care for the elder who needs care to plan this care with a geriatric team that includes professionals and the direct care worker.” —Meghan Hendricksen 31
  34. 34. 2014 Mother’s Day Report OWL’S LONG-TERM CARE RECOMMENDATIONS 1. Develop a public social insurance program for long-term care that requires full participation of all Americans and that supports independence and community-based services for people of all ages and income. Benefits of this program should include flexibility, including a “money follows the person” element that enhances the range of available services and supports. 2. Develop a federal paid family and medical leave program to meet the needs of family caregivers. The state you live in should not determine whether you are able to take a paid leave to provide care to family members. 3. Require living wages and benefits for direct care workers and that training and ongoing professional development of this workforce be a component of all workplaces that are involved in serving the LTSS population. 4. Develop an assessment program for LTSS users that enhances the quality of their care experience and that also includes the family caregiver in both the care planning and the assessment. 5. Increase the federal funding available for LTSS services and improve access to LTSS for those who do not qualify for Medicaid. 6. Pass a federal tax credit for family caregivers. This tax credit has been put forth by both Republicans and Democrats in different formats but never passed. 7. Develop a national campaign to educate the American public about long-term care issues, how LTSS is funded, and the role of family caregivers in both providing and paying for LTSS. Long-term care is in most of our futures. The current system is unsustainable and requires families across the country to mortgage their future and the future of their children. We all have a stake in the outcomes; even the policy makers who appear to be loath to address the topic. Working together on this issue, we can increase the dialogue about the issues and move the quality care agenda along. Let’s get busy! 32
  35. 35. 2014 Mother’s Day Report APPENDIX A: PROMISING PRACTICES The innovations included in this section are not exhaustive. Around the nation there are informal and formal initiatives being tried to improve the quality of LTSS and “living long” with care needs. Individuals are opening their homes to others to create a caring community that replaces the traditional extended family structure of the past. About 15% of the informal care provided in the country comes from neighbors and friends and, as single person households increase, this is likely to increase as well. We have selected a few interesting innovations to help you begin to think about your own future, what you might need, and what steps you might take to meet that need. 1. The Innovation: The Village Movement WEBSITE: An apt way to describe the Village Movement comes from Jane Gross in her coverage of Beacon Hill Village, one of the very first Villages in the United States – “[villages are] community-based models for aging in place designed by the people who use them”. In a “village”, neighbors come together to develop a support system that meets their needs. For example, the Beacon Hill Village relies upon a professional manager who is responsible for ensuring needed services are available to the members. These models enable their residents to remain in their homes and their communities as they get older. Through the development of social and pragmatic supports, the Village Model recruits volunteers and service workers to cultivate a community of assistance that leads to improved health and independence among older adults. These supports are limitless; examples include helping an older adult with their grocery shopping or driving to a doctor’s appointment or fitness program. Typically, villages are self-supporting nonprofit organizations, but some of the Village models are financed by a membership program and federal grants. Often the memberships are annual and range from $450 for an individual to $600 for a household; however, some of the Village models are able to provide a lowered cost membership to individuals or families who may be financially constrained by a typical cost membership. Through assisting older adults by recruiting volunteers, leaders can keep the costs low for the communities and older adults (as well as their families) so they are able to incur minimal costs. 33
  36. 36. 2014 Mother’s Day Report Who would benefit the most from this innovation? The Village Model would benefit older adults who live alone, as well as their families who may or may not be close by to offer the same types of assistance. Older adults who wish to remain independent and continue to live in the community as they age and their needs change over time are well served by the Village Model. More Resources: • Aging at Home: For the Lucky Few, A Wish Come True – The New York Times – Jane Gross • Villages: Helping Old People Age in Place – AARP Magazine – Martha Thomas • The Beacon Hill Village Website 2. The Innovation: THE GREEN HOUSE® Project WEBSITE: In an attempt to remove the impersonal aspects of an institutional setting, the Green House Project was developed to add elements to the facility that are not associated with institutions – pets, small intimate sized units, home-like environments. With a little over a fourth of assisted living residents residing in institutions with 26 or more fellow residents, the Green House Project boasts each home is specifically designed to develop warmth, comfort and community by housing as few as 10 residents per home. The Green House Project aims to maximize autonomy for residents by encouraging them to make choices, even if it’s just something as simple as when to eat dinner. Dr. Bill Thomas, founder of the Eden Alternative described below, developed this model. Who would benefit the most from this innovation? Older adults in need of Institutionalized care would benefit greatly from housing projects like the Green House Project. The Green House Project seeks to revolutionize how care is provided and to personalize the care experience. A key component of changing the culture of care is the responsibility for decision making given to direct care workers, also known as Shahbazim. These workers receive training and autonomy and as a result, experience higher 34
  37. 37. 2014 Mother’s Day Report levels of personal and work satisfaction than workers in other institutionalized settings. More Resources: • Move over Nursing Homes — There's Something Different – National Public Radio – Ina Jaffe • The Green House Project Reinvents Long-Term Eldercare – The Huffington Post • A Nursing Home Shrinks Until It Feels Like a Home – The New York Times – Laurie Tarkan 3. The Innovation: The Eden Alternative WEBSITE: Designed by Dr. Bill Thomas, the Eden Alternative is an organization that assists long-term care facilities transition from an institution-directed model of care to a resident-directed model of care. These models of care differentiate in almost every aspect of how a long-term care organization is run. Examples of differentiation include how staff members and residents of assisted living and skilled nursing facilities communicate with each other, how staff members are respected by superiors, and even facility policies. The Eden Alternative reflects a desire to make assisted living and nursing home facilities more like a vibrant home setting, rather than a hospital setting. The Eden Alternative advocates 10 Principles that an elder-centered community should embrace in order to create an environment that resembles a home and its comforts (including filling the ‘home’ with plants and animals and promoting intergenerational activities). These environments have shown positive health benefits for the residents, as well as positive work satisfaction among the staff members. Most recently, the Eden Alternative has expanded to providing its unique model to home health care agencies in a new program called Eden at Home. The principles of the Eden Alternative (specifically that old age is not a decline towards death but an important human developmental stage) are applied to a home health setting by encouraging older adults, as well as family caregivers, to become “care partners” with a home health agency. The Eden Alternative asserts that without that, even a home can take on an institutional atmosphere which often reflects a sense of loneliness, powerlessness, and 35
  38. 38. 2014 Mother’s Day Report boredom. Therefore, by adopting the Eden at Home perspective, older adults are encouraged to not only participate in their care plans but help to develop them. Who would benefit the most from this innovation? Individuals who need ongoing support but are able to live in their own home with additional services provided by a trained home health worker. More Resources: • And Thou Shall Honor: An Interview with Dr. Bill Thomas about the Eden Alternative - PBS • Promoting Thriving in Nursing Homes: The Eden Alternative -- Journal of Gerontological Nursing -- Beth E. Barba • The Promise, Practice, and Problems of the Eden Alternative – Long Term Living – Bethany G. Sampsell 4. The Innovation: Elder Co-Housing WEBSITE: Elder Co-Housing or Senior Co-Housing is a component of the larger co- housing movement. Co-housing was developed in Denmark and came to the US more than a decade ago. The Co-Housing organization identifies characteristics of co-housing, including: (1) Participatory process in the design and construction of a community; (2) The inclusion of common facilities (common kitchen, exercise room, etc.); (3) Resident management; (4) No shared economy – the community is not an income-generating organization for residents; (5) Open and shared decision-making. Who would benefit most from this innovation? This innovation is ideal for individuals or partners who have the time and resources to plan a co-housing project with others and/or can afford to buy into a co-housing community that meets their needs. 36
  39. 39. 2014 Mother’s Day Report 5. The Innovation: Beatitudes Campus WEBSITE: Beatitudes Campus [] is located in Phoenix, Arizona, where older adults make up 13.8% of the population of the city. Beatitudes was designed to create a new model of a nursing home. Over 35 years the facility expanded to a 23-acre campus with more than 600 residents and hundreds more serviced through home health services, rehabilitation, and wellness programs. The facility is based upon a person- centered philosophy and addresses the residents’ needs on their schedules, including late night showers and meals. Residents’ quality of life is important and the facility offers residents almost any food they request, including chocolate, which is viewed as a therapeutic approach to stress-reduction for residents with Alzheimer’s disease. Activities are planned around the resident’s interests and accommodations are made to ensure that each resident finds meaning in her or his day. Who would benefit the most from this innovation? Finding positive and innovative ways of communicating with patients with Alzheimer’s disease is beneficial not only for the older adults who reside in the facility and their family members, but also provides a model for other residential communities serving this population. More Resources: • Giving Alzheimer’s Patients Their Way, Even Chocolate - The New York Times – Pam Belluck • How Beatitudes Campus is Spreading Comfort in New York City – LeadingAge - Geralyn Magan • A Sense of an Ending – The New Yorker – Rebecca Mead Photo courtesy Getty Images 37
  40. 40. 2014 Mother’s Day Report 6. The Innovation: Lifespan Respite Care Program WEBSITE: The Lifespan Respite Care Program is a government-funded program that allocates resources to provide respite care to family caregivers of older adults and children with physical or developmental disabilities. The objectives of the program include developing, expanding and enhancing respite care across the United States as well as integrating respite care into long-term care service plans and options. The program has conducted environmental scans to best understand the needs of the family caregiver and the needs of his or her family members. The program has also started a social marketing campaign to raise awareness about the importance of respite for family caregivers and disseminate information on how to take advantage of respite care on local and state levels. Funding varies by state, but increased funding has resulted in better training for respite care workers and volunteers and has helped create statewide databases of respite services. Who would benefit the most from this innovation? According to the National Respite Coalition, over half of family caregivers of older adults who received 4 respite hours reported improved physical health and 78% reported improvement in emotional well-being. In addition, half of the respondents described improvement in their care recipient. Respite is good for caregivers and care recipients. More Resources: • Wanted: A National Respite System - The New York Times - Karen Stabiner • The Importance of Respite Relief for Family Caregivers - The Help Guide • Respite Care: Finding and Choosing Respite Services - Comfort Keepers Blog 7. PACE: Program for All Inclusive Care for the Elderly WEBSITE: (National PACE association) PACE began in the early 1970’s as a care experiment in San Francisco’s On Lok Senior Health Services. Over the decades it has continued to be an innovator in care for elders. According to its website, PACE is “centered around the belief that it is better for the well-being of seniors with chronic care needs and their families to be served in the community whenever possible.” PACE serves 38
  41. 41. 2014 Mother’s Day Report people who are 55 years of age or older who have been certified to need nursing home care. The program’s goal is to meet their needs through integrated health services that would eliminate the need for a nursing home and allow them to remain in the community. As of 2014, 103 PACE programs are currently operational in 31 states. Care includes all medical and social services needed by an elder, including prescription medication, respite care, and adult day care that offers therapeutic services. Who would benefit the most from this innovation? This program benefits older adults at risk of entering a nursing home and losing their independence in the community. Its integrated approach to health care offers a full range of services and coordination to ensure that each participant is receiving high quality of care that meets their needs, ideally in the community. Only 7% of the PACE participants are in a nursing home; a service that is covered by the program. 8. Home-Sharing WEBSITE: Home-Sharing was a popular program in the 1970’s and 1980’s but dwindled in its importance over time. Home-Sharing is back and appears to be increasing in popularity again with this group of elders. The Affordable Living for the Aging has a home sharing housing initiative now. Who would benefit the most from this innovation? Elders who live alone and prefer companions. Shared housing is a great option for widows or single elders with a house who would like a companion or two and equally great for elders who are renters and would like an environment which includes companions and a family –like social setting. Photo courtesy Getty Images 39
  42. 42. 2014 Mother’s Day Report APPENDIX B: ORGANIZATIONS THAT ADVOCATE AND PROVIDE INFORMATION ABOUT LONG-TERM CARE ISSUES Advocacy Organizations Older Women’s League ABA Commission on Law and Aging Center for Advocacy for the Rights and Interests of the Elderly The National Senior Citizens Law Center -- Long Term Services and Supports Assisted Living Federation of America’s Political Action Committee National Committee to Preserve Social Security and Medicare Alliance for Retired Americans Leadership Council of Aging Organizations (LCAO) California Advocates for Nursing Home Reform National Association of Area Agencies on Aging (n4a) American Society on Aging 40
  43. 43. 2014 Mother’s Day Report National Council on Aging Services & Advocacy for GLBT Elders [SAGE] National Association of States United for Aging and Disabilities (NASUAD) Alzheimer’s Foundation of America National Aging Pacific Center on Aging (NAPCA) National Caucus and Center on Black Aging (NCBA) National Hispanic Council on Aging (NHCOA) National Indian Council on Aging Direct Care Alliance Consumer Education Organizations The Consumer Voice for Quality Long-Term Care Leading Age Long Term Care Community Coalition 41
  44. 44. 2014 Mother’s Day Report National Long-Term Care Ombudsman Resource Center Long-Term Quality Alliance The Long-Term Care Advocacy Project (NY) National Association for Home Care and Hospice Children of Aging Parents Rosalynn Carter Institute for Caregiving (RCI) Families USA Caregiver Action Network National Adult Day Services Association (NADSA) Health & Medicine Policy Research Group Center for Long-Term Care Reform National Association of Nutrition and Aging Services Programs (NANASP) AARP's Caregiving Resource Center 42
  45. 45. 2014 Mother’s Day Report Research Organizations National Alliance for Caregivers The Commonwealth Fund The Bipartisan Policy Center supports The Brookings Institute - Engelberg Center for Health Care Reform The Urban Institute – Health Policy Center Center for American Progress The Scan Foundation Gerontological Society of America (GSA) The National Academy on an Aging Society AARP Pubic Policy Institute Alliance for Aging Research Family Caregiver Alliance (FCA) 43
  46. 46. 2014 Mother’s Day Report END NOTES 1 MetLife Mature Market Institute (2009). MetLife Long-Term Care IQ. 2 Tompson, T., et al. (2013). Long-Term Care: Perceptions, Experiences, and Attitudes among Americans 40 or Older. experiences-and-attitudes-among-americans-40-or-older.aspx 3 McGarry, K.& Schoeni, R. (2000). Social Security, Economic Growth, and the Rise in Elderly Widows’ Independence in the Twentieth Century. Demography. Vol. 37, No. 2, May, 2000: 221-236. 4 US Census Bureau, 2008. 5 O’Shaughnessy, C. (2013). The Basics: National Spending for Long-Term Services and Supports (LTSS), 2011. National Health Policy Forum, The George Washington University. 6 Tumlinson, A. et al. (2013). Insuring Americans for Long-Term Care: Challenges and Limitations of Voluntary Insurance. Washington, DC: Avalere Health LLC. 7 Wiener, J. et al. (2013). Medicaid spend down: Implications for Long-term Services and Supports and Aging Policy. 8 National Alliance for Caregiving and Evercare (2007). Family Caregivers – What They Spend, What they Sacrifice. Bethesda, MD: National Alliance for Caregiving. 9 Parker, V. (2011) The Importance of Cultural Competence in Caring for and working in a Diverse American. Generations. Vol. 34, No. 4. Pp 97-102. 10 Congressional Budget Office (2013). Rising Demand for Long-Term Services and Supports for Elderly People. Washington, DC: CBO. 11 Redfood, D., Feinberg, L, Houser, A. (2013). The Aging of the Baby Boom and the Growing Care Gap: A look into the future declines in the availability of family caregivers.” Washington, DC: AARP Public Policy Institute. 12 Ryan, L, (2012). Cohort Differences in the Availability of Informal Caregivers: As the Boomers at Risk? The Gerontologist. 52 (2), pp. 177-188. 13 Guberman, N. et al (2012). Baby Boom Caregivers: Care in the Aging of Indiviudalization. The Gerontologist. 52 (2), pp. 210-218. 14 Lin, I-Fen & Brown, S.L. (2012). Unmarried Boomers Confront Old Age: A National Portrait. The Gerontologist. 52(2), pp. 153-165. 15 Applebaum, R.; Bardo, A; Robbins, E. (2012). International Approaches to Long-Term Services and Supports. Generations. Vol 37, No. 1, pp. 59-65. 16 Gleckman, H. (2010). Long-Term Care Financing Reform: Lessons From the U.S. and Abroad. The Commonwealth Fund, Pub. No. 1368. 44
  47. 47. 2014 Mother’s Day Report 17 O’Shaughnessy, C. (2013). Medicaid Home-and Community-Based Services Programs Enacted by the ACA: Expanding Opportunities One Step at a Time. National Health Policy Forum Background Paper, No.86. Nov. 19, 2013. The George Washington University. 18 Harris-Kojetin, L., Sengupta, M., Park-Lee, E., Valverde, R. (2013). Long Term Services in the United States: 2013 Overview. National Center for Health Statistics. 19 Office of the Assistant Secretary for Planning and Evaluation (ASPE), Office of Disability, Aging and Long-term Care Policy (2013). The Direct Care Workforce: An Integral Part of Long- term Services and Supports. ASPE Issue Brief 1. 20 Baughman, R. & Smith, K. (2012). Labor Mobility of the Direct Care Workforce: Implications for the Provision of Long-Term Care. Health Economics, Vol. 21, pp. 1402-1415. 21 Institute of Medicine of the National Academies (2008). Retooling for an Aging America: Building the Health Care Workforce. 2222 Stone, R.I. & Bryant, N. (2012). The Impact of Health Care Reform on the workforce Caring for Older Adults. Journal of Aging & Social Policy, 24:2, pp. 188-205. 23 Butler, Claypool, Feder, Ruttledge, Stein. (2013). A Comprehensive Approach to Long-Term Services and Supports. term-care. Photo by BlueSkyImage 45
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  49. 49. On Mother’s Day, we honor the past and shape the future. OWL - The Voice of Midlife and Older Women 1625 K Street, NW Suite 1275 Washington, DC 20006 Phone: (202) 567-2606