Mothers dayreport final editsv2_very final-2

Long-Term Care: Managing Our Future
The Voice of Midlife and Older Women
2014 Mother’s Day Report
www.owl-national.org

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
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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.
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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
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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
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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.
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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.
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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
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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.
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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
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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
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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
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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
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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.
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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%
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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
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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.
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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
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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.
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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.
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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

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
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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

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

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

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.
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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

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

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

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

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

• 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
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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!
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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: http://www.vtvnetwork.org/
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

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: http://thegreenhouseproject.org/
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.
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

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: https://www.edenalt.org/
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

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.
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: www.cohousing.org
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

5. The Innovation: Beatitudes Campus
WEBSITE: http://www.beatitudescampus.org/
Beatitudes Campus [http://www.beatitudescampus.org/] 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.
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
37

6. The Innovation: Lifespan Respite Care Program
WEBSITE: http://acl.gov/Programs/CDAP/OIP/LifespanResite/index.aspx
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.
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: www.npaonline.org (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

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.
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: www.alaseniorliving.org/ala-shared-housing-initiative
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.
39

APPENDIX B: ORGANIZATIONS THAT ADVOCATE AND PROVIDE
INFORMATION ABOUT LONG-TERM CARE ISSUES
Advocacy Organizations
Older Women’s League
www.owl-national.org/
ABA Commission on Law and Aging
www.abanet.org/aging
Center for Advocacy for the Rights and Interests of the Elderly
www.carie.org/
The National Senior Citizens Law Center -- Long Term Services and Supports
www.nsclc.org/index.php/health/long-term-care/
Assisted Living Federation of America’s Political Action Committee
www.alfa.org/alfa/ALFA_PAC.asp
National Committee to Preserve Social Security and Medicare
www.ncpssm.org
Alliance for Retired Americans
www.retiredamericans.org
Leadership Council of Aging Organizations (LCAO)
www.lcao.org
California Advocates for Nursing Home Reform
www.canhr.org/
National Association of Area Agencies on Aging (n4a)
www.n4a.org/index.cfm
American Society on Aging
www.asaging.org
40

National Council on Aging
www.ncoa.org/
Services & Advocacy for GLBT Elders [SAGE]
http://sageusa.org/
National Association of States United for Aging and Disabilities (NASUAD)
www.nasuad.org
Alzheimer’s Foundation of America
www.alzfdn.org
National Aging Pacific Center on Aging (NAPCA)
www.napca.org
National Caucus and Center on Black Aging (NCBA)
www.ncba-aged.org
National Hispanic Council on Aging (NHCOA)
www.nhcoa.org
National Indian Council on Aging
www.nicoa.org
Direct Care Alliance
www.directcarealliance.org
Consumer Education Organizations
The Consumer Voice for Quality Long-Term Care
www.theconsumervoice.org/
Leading Age
www.leadingage.org
Long Term Care Community Coalition
www.ltccc.org/
41

National Long-Term Care Ombudsman Resource Center
www.ltcombudsman.org/
Long-Term Quality Alliance
www.ltqa.org/
The Long-Term Care Advocacy Project (NY)
longtermcareadvocacyproject.com/
National Association for Home Care and Hospice
www.nahc.org
Children of Aging Parents
www.caps4caregivers.org
Rosalynn Carter Institute for Caregiving (RCI)
www.rosalynncarter.org/
Families USA
http://familiesusa.org/initiatives
Caregiver Action Network
www.caregiveraction.org
National Adult Day Services Association (NADSA)
www.nadsa.org
Health & Medicine Policy Research Group Center for Long-Term Care Reform
www.hmprg.org/Programs/Center+for+Long+Term+Care+Reform
National Association of Nutrition and Aging Services Programs (NANASP)
www.nanasp.org
AARP's Caregiving Resource Center
www.aarp.org/caregiving
42

Research Organizations
National Alliance for Caregivers
www.caregiving.org/
The Commonwealth Fund
www.commonwealthfund.org/Topics/Long-Term-Care-Quality.aspx
The Bipartisan Policy Center
http://bipartisanpolicy.org/blog/2013/09/03/facts-long-term-services-and-
supports
The Brookings Institute - Engelberg Center for Health Care Reform
www.brookings.edu/events/2008/07/11-care-reform
The Urban Institute – Health Policy Center
www.urban.org/health_policy/long-term_care/
Center for American Progress
www.americanprogress.org/issues/healthcare/view/
The Scan Foundation
http://thescanfoundation.org
Gerontological Society of America (GSA)
www.geron.org
The National Academy on an Aging Society
www.agingsociety.org/agingsociety/
AARP Pubic Policy Institute
www.aarp.org/research/ppi/
Alliance for Aging Research
www.agingresearch.org
Family Caregiver Alliance (FCA)
www.caregiver.org
43

END NOTES
1 MetLife Mature Market Institute (2009). MetLife Long-Term Care IQ.
www.maturemarketinstitute.com
2 Tompson, T., et al. (2013). Long-Term Care: Perceptions, Experiences, and Attitudes among
Americans 40 or Older. http://www.apnorc.org/projects/Pages/long-term-care-perceptions-
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.
www.nhpf.org
6 Tumlinson, A. et al. (2013). Insuring Americans for Long-Term Care: Challenges and
Limitations of Voluntary Insurance. Washington, DC: Avalere Health LLC.
www.avalerehealth.net.
7 Wiener, J. et al. (2013). Medicaid spend down: Implications for Long-term Services and
Supports and Aging Policy. www.TheSCANFoundation.org.
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. www.cbo.gov.
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. www.aarp.org.
12 Ryan, L, et.al. (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. www.commonwealthfund.org
44

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.
www.nhpf.org.
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. www.iom.edu/agingamerica.
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. http://www.medcareadvocacy.org/national-commission-on-long-
term-care.
Photo by BlueSkyImage
45

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