[Senate Hearing 107-291]
[From the U.S. Government Publishing Office]
S. Hrg. 107-291
WOMEN AND AGING: BEARING THE
BURDEN OF LONG-TERM CARE
=======================================================================
JOINT HEARING
before the
SPECIAL COMMITTEE ON AGING
and the
SUBCOMMITTEE ON AGING OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED SEVENTH CONGRESS
SECOND SESSION
__________
WASHINGTON, DC
__________
FEBRUARY 6, 2002
__________
Serial No. 107-17
Printed for the use of the Special Committee on Aging
U.S. GOVERNMENT PRINTING OFFICE
77-850 WASHINGTON : 2002
_____________________________________________________________________________
For Sale by the Superintendent of Documents, U.S. Government Printing Office
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SPECIAL COMMITTEE ON AGING
JOHN B. BREAUX, Louisiana, Chairman
HARRY REID, Nevada LARRY CRAIG, Idaho, Ranking Member
HERB KOHL, Wisconsin CONRAD BURNS, Montana
JAMES M. JEFFORDS, Vermont RICHARD SHELBY, Alabama
RUSSELL D. FEINGOLD, Wisconsin RICK SANTORUM, Pennsylvania
RON WYDEN, Oregon SUSAN COLLINS, Maine
BLANCHE L. LINCOLN, Arkansas MIKE ENZI, Wyoming
EVAN BAYH, Indiana TIM HUTCHINSON, Arkansas
THOMAS R. CARPER, Delaware PETER G. FITZGERALD, Illinois
DEBBIE STABENOW, Michigan JOHN ENSIGN, Nevada
JEAN CARNAHAN, Missouri CHUCK HAGEL, Nebraska
Michelle Easton, Staff Director
Lupe Wissel, Ranking Member Staff Director
(ii)
C O N T E N T S
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Page
Opening Statement of Senator John Breaux......................... 1
Opening Statement of Senator Barbara Mikulski.................... 3
Statement of:
Senator Tim Hutchinson....................................... 6
Senator Christopher Dodd..................................... 7
Senator Rick Santorum........................................ 9
Senator Larry E. Craig....................................... 29
Prepared Statement of:
Senator Mary Landrieu........................................ 31
Senator Olympia Snowe........................................ 31
Senator Maria Cantwell....................................... 34
Panel I
Hon. Blanche Lincoln, a U.S. Senator from Arkansas............... 10
Hon. Patty Murray, a U.S. Senator from Washington................ 15
Hon. Susan Collins, a U.S. Senator from Maine.................... 17
Hon. Debbie Stabenow, a U.S. Senator from Michigan............... 19
Hon. Hillary Rodham Clinton, a U.S. Senator from New York........ 22
Hon. Jean Carnahan, a U.S. Senator from Missouri................. 26
Panel II
Dr. Laura Young, Executive Director, Older Women's League,
Washington, DC................................................. 35
Gail Gibson Hunt, Executive Director, National Alliance for
Caregiving, Bethesda, MD....................................... 47
APPENDIX
Statement of Kathleen Kelly, Executive Director, Family Caregiver
Alliance, San Francisco, CA.................................... 59
Statement submitted by the American Association for Geriatric
Psychiatry..................................................... 61
Statement on behalf of the Women's Institute for a Secure
Retirement..................................................... 65
(iii)
JOINT HEARING ON WOMEN AND AGING: BEARING THE BURDEN OF LONG-TERM CARE
----------
WEDNESDAY, FEBRUARY 6, 2002
U.S. Senate,
Special Committee on Aging,
and Committee on Health, Education,
Labor, and Pensions, Subcommittee on Aging,
Washington, DC.
The committees met jointly, pursuant to notice, at 9:35
a.m., in room SD-106, Dirksen Senate Office Building, Hon. John
Breaux (chairman of the Special Committee on Aging) presiding.
Present from Special Committee on Aging: Senators Breaux,
Lincoln, Stabenow, Carnahan, Craig, Santorum, and Hutchinson.
Present from Committee on Health, Education, Labor, and
Pensions: Senators Mikulski and Dodd.
OPENING STATEMENT OF SENATOR JOHN BREAUX, CHAIRMAN
The Chairman. The committee will please come to order. Good
morning, everyone. Thank you for being with us this morning for
indeed a very special opportunity and a special joint hearing
of our Senate Special Committee on Aging joined together with
the Subcommittee on Aging of the Senate Committee on Health,
Education, Labor and Pensions, chaired by our colleague,
Senator Barbara Mikulski, who will be making opening remarks in
just a moment.
I think that it is unique that two committees concentrating
on this very important subject have come together to hear from
a very distinguished group of colleagues who have special
information and special concerns about the subject matter
before the committee today.
We are meeting here today because America really is in a
crisis. And the good news is that people are living a lot
longer. The bad news is that people are living a lot longer
without adequate long-term health care. So it truly presents a
crisis of monumental proportions when you consider that the
difficulties we have today will only be compounded many times
over as the 77 million baby boomers become eligible for senior
programs, entitlement programs, and still face a nation without
adequate long-term health care for our nation's seniors.
America is clearly the strongest nation in the world,
perhaps the strongest nation in the history of the world, and
yet the only really long-term care program that we have
available for our nation's seniors is a program that was never
intended to provide long-term health care for seniors, and that
is the nation's Medicaid program.
The Medicaid program was really a national health program
combined with the Federal Government and the states designed to
really provide health care for indigent low-income seniors.
Because of the absence of any other program, Medicare has
become the main program to provide long-term health care for
everybody. So you find the unusual and unfortunate and
oftentimes extremely embarrassing situation where seniors in
this nation have to become poor so they can enroll in a program
where they can find health care in a program that was never
intended to do so.
It is interesting now that Medicaid now pays for about 40
percent of all the long-term health care delivered in this
country, and it was a program that was never intended to do
that. So the real challenge before our country is to find out
what solution can we reach to help our growing number of
seniors live not only longer lives but live better lives,
particularly in the last years of their lives.
So what we are here today is to hear from a special group
of our lady colleagues in our Senate to give us information
about their experiences or any ideas or suggestions that they
have.
We are truly in a sandwich generation. Everyone in this
audience and probably everyone testifying and all of our
members up here know what it is to be in a sandwich generation.
My own situation is very similar to millions of other
Americans. My mother-in-law, who has diabetes, had breast
cancer, lives with us at our home. I have a daughter at the
same time who is in her third pregnancy and has been bedridden
since the very first day, requiring a great deal of care
because she has two small grandchildren--we have two small
grandchildren. She has two small children.
So we are in that sandwich situation where we are taking
care of people in our parent's generation, my mother-in-law, at
the same time trying to provide assistance to my daughter and
her children. And guess what? My wife does most of it.
You know, that is the situation where we find more and more
Americans in the female population who are providing most of
the care to people who need healthcare in this country. Three-
fourths of all the caregivers are women. And all the problems
that that presents, special needs that they have, is really
what we are trying to talk about today and find out how we as
the strongest nation in the history of the world can do a
better job.
This is something that we can no longer ignore and sweep
under the carpet. I am delighted that we have this joint
hearing. I am delighted to recognize our good friend and leader
in the Senate, the chairperson of the Senate Committee on
Health, Education, Labor and Pensions, their Subcommittee on
Aging. Senator Mikulski, comments.
[The prepared statement of Senator John Breaux follows:]
Prepared Statement of Senator John Breaux
I am pleased to be here today with Senator Mikulski and the
Health, Education, Labor, and Pensions (HELP) Subcommittee on
Aging. Hearings such as this to highlight long-term care and
caregiving are more important now than ever as we anticipate
the retirement of the baby boom generation.
I am pleased to have with us our women Senators,
representing those that bear the greatest burden of long-term
care and caregiving. I know many of the Senators testifying
today will have their own personal experiences of grappling
with these issues. I also want to welcome the Older Women's
League and the National Alliance for Caregiving who have been
working on these issues for many years and have innovative
ideas for addressing them.
Women make up a disproportionate share of caregivers in
this country, with very little public support. For example,
women comprise more than 80 percent of the family caregivers
for chronically ill elders. The average American woman can
expect to spend 17 years caring for a child and 18 years caring
for an elderly parent. I know that my own wife has this
experience. In addition, women live longer than men, and
therefore will need to personally access long-term care more
frequently. And yet our public policies do very little to
provide a network of support to caregivers.
We lack a cohesive long-term care system in this country
and we will pay a dear price for this when the baby boomers
retire. What we do have does little to support long-term care
programs that promote independent living such as home and
community based care. Addressing the need for a comprehensive
long-term care system in this country requires most of all
creating policies that recognize the role of caregivers.
Otherwise, we will face a national crisis when the baby boom
generaion retires.
Knowing the primary role women play in caregiving and in
our long-term care system, I am pleased to hear from our women
Senators who will be integral to this debate as we seek to
create better long-term care policies in this country.
OPENING STATEMENT OF SENATOR BARBARA MIKULSKI
Senator Mikulski. Thank you very much, Senator Breaux, for
organizing this hearing and for it to be a joint hearing of
this Special Committee on Aging, on which you have provided
such wonderful leadership, as well as our Committee on Health,
Education, Labor and Pensions. We have a Subcommittee on Aging,
which I chair, and my colleague Senator Tim Hutchinson is the
ranking member.
We look forward to really working with you and coming up
with a framework and the funding for long-term care because we
also know you are on the Finance Committee, and at the same
time I am the senior woman in the U.S. Senate, I want to thank
you for inviting all of the women of the Senate to participate
in this very unique conversation.
Each and every one of them, as you will soon hear, brings
their own perspective, their own expertise, and their own
recommendations for solutions.
We the women of the Senate do not have a caucus, but we
meet regularly to brainstorm on how we can look out for the
day-to-day needs of the American people, convert that into
public policy, and at the same time look at the long-range
needs of our country in terms of national security, economic
security, and health security.
So I am glad that you have the women's brigade here today,
and I am looking forward to hearing from my own colleagues and
introducing them. Like you, Senator, my own family has faced
the crisis of long-term care. My very dear father suffered from
Alzheimer's. My family and I watched him die one brain cell at
a time. This was the man who saw to our education, took me to
cowboy movies and bought me those good old cowgirl boots when I
wanted to be a Dale Evans. When a fire took his own business
away from him and as he rebuilt his business, he and my mother
sacrificed for me to go to college.
How heartbreaking it was to see the man who cared for me
and protected me now needed my care and my protection along
with my sister's and my mother. What we saw was like all
families; what did we find when we saw what we needed in terms
of long-term care? We believe that the family is the first
caregiver and ought to remain so. But America's families face a
fragmented system. They do not know where to go and often where
to start when they face the needs of a family member who has a
chronic and often progressive illness like Alzheimer's or
Parkinson's.
They also then are shocked by how expensive it is, and that
no matter how hard they work, no matter how hard they saved, no
matter how hard they prepared, that in order to qualify for any
financial help from anywhere that they had to spend down.
So here they are, bewildered, overcome with grief about the
situation, not knowing where they can go to get help, and not
knowing where they can get help to pay for the help. We have
got to give help to those who practice self-help and support
the American family. In our own situation, I had access to the
resources of Johns Hopkins Hospital where I could take my dad
for a geriatric evaluation to make sure we had the right
evaluation for his situation.
We had hoped that it was a vitamin deficiency, and all he
needed was vitamins and for the family to pitch in and send mom
and dad on a love boat cruise. Alzheimer's was the diagnosis.
But we used other support services like adult day care
before we had to face the need for a nursing home when dad
became so ill the family was facing that incredible 36-hour day
that Alzheimer's families face. So we need to really come back
to the family and how we can support them.
I believe that honor your father and mother not only is a
good commandment to live by, but a good policy to govern by.
Almost the only down payment we have had on long-term care was
the Spousal Anti-Impoverishment Act that I authored in the U.S.
Senate in my very first term with the wonderful help on a
bipartisan basis of the Finance Committee.
AARP tells us we have kept one million people out of
poverty and prevented liens on the family farm or the home
because of that. We have also worked on a bipartisan basis with
Senator Hutchinson, Senator Gregg, Senator Jeffords, Senator
DeWine, and Senator Kennedy to create the National Family
Caregiver Support Program under the Older Americans Act. That
is to provide information and assistance, counseling and
support groups, respite care and supplemental services to
family caregivers.
We have tried to take a look at the VA because everywhere
we go when they talk about veterans healthcare, they now talk
about long-term care. The greatest generation in America is
faced with wondering how they are going to pay for their
prescription drugs, and how are they going to pay for their
long-term care. And we have had a quiet program going on at the
Veterans Administration. I think we need to be louder about it.
So, Mr. Chairman and colleagues, I think we have tools with
which we can give help to those who practice self-help, and
particularly to those Americans who have gone before us and saw
us through tough times, and we need to be sure that now when
they have their tough times, we need to get going and support
them. So, Mr. Chairman, I look forward to the rest of the
hearing.
[The prepared statement of Senator Mikulski follows:]
Prepared Statement of Senator Barbara A. Mikulski
I'm very pleased to join with Senator Breaux to bring
together the women of the Senate, the Subcommittee on Aging,
and the Special Committee on Aging to focus on women, long-term
care, and caregiving. I'm also pleased to welcome Ms. Gail
Gibson Hunt, Executive Director of the National Alliance for
Caregiving in Bethesda, Maryland.
Many Americans do not think about their long-term care
needs until a tragedy strikes. When a person needs long-term
care, it is a tragedy for the person who is ill, for the family
who is the caregiver, and for the taxpayer who has to share the
burden.
My dear father suffered from Alzheimer's disease. My family
and I watched him die one brain cell at a time. I know what
families live through when a loved one ages and needs more
care, eventually more than you alone can provide. Everywhere I
travel around Maryland, people come up to me and tell me what a
big issue long-term care is for their family.
Women are more often the ones who provide care to loved
ones and who eventually need care themselves. Three-quarters of
caregivers are women. Women live longer than men and are more
than twice as likely to live in a nursing home. Caregivers and
their families face mental, emotional, physical, and financial
stresses and strains. Some caregivers work three shifts--caring
for children, working a full-time job, and caring for an
elderly parent at home.
In the 20th century, we made more scientific and medical
breakthroughs than we have during any other century in American
history. People are living longer. More Americans can remain in
their homes and communities, delaying or preventing
institutionalization. But our country's approach to caring for
this growing number of aging Americans is piecemeal and
fragmented. We have some good down payments to build from, but
we must do more.
I believe that honoring your mother and father is not only
a good commandment to live by, but also good public policy to
govern by. One of the accomplishments that I am most proud of
is my Spousal Anti-Impoverishment Act. From my own family's
experience, I saw how cruel rules forced elderly couples to go
bankrupt before they could become eligible for Medicaid to help
pay for nursing home care. I changed those rules so that a
spouse living in the community could keep enough income to pay
the bills and live at home, while the other spouse is in a
nursing home.
I fought hard on a bipartisan basis to establish and fund
the National Family Caregiver Support Program under the Older
Americans Act. It provides information and assistance, respite
care, counseling and training, support groups, and supplemental
services to caregivers who need them. These are vital supports
to thousands of caregivers across the country.
I'm also the Senator for the VA. One of the biggest future
needs of the VA health care system is long-term care. There is
a great desire for these services. States are building VA
nursing homes, but there is no continuum of care. There must be
assisted living and other ways for veterans to be able to live
their last years with their families and age in place. On the
Medicare side, some of our biggest budget battles have involved
Balanced Budget Act givebacks to nursing homes, home health
care agencies, and other providers who care for our aging
population.
Our first responsibility is to the family and those that
practice self-help. Tax credits, spousal anti-impoverishment,
long-term care insurance for Federal employees, and the
National Family Caregiver Support Program are parts of what
should be the long-term care mosaic. But many pieces are
missing--there is no comprehensive approach. First there is the
family caregiver, but no one can care for someone by themselves
for years and years. Family caregivers need advice, counseling,
and support. Helping those who plan and practice self-help is a
downpayment. But we must do more. This is about getting behind
our nation's families.
I look forward to hearing from the other women Senators and
all our witnesses for their insights and ideas about the best
ways to help women and families better prepare for the burdens
of long-term care.
The Chairman. Thank you very much, Senator Mikulski. Any
comments, Senator Hutchinson?
STATEMENT OF SENATOR TIM HUTCHINSON
Senator Hutchinson. Yes, thank you, Chairman Breaux and
Senator Mikulski. I am pleased to serve as your ranking member.
This is an excellent statement and you are absolutely right.
The way we best honor our parents, our mothers and our fathers,
is not in word, but in deed, and that is being done by
millions and millions of caregivers, who are primarily women. I
want to thank you for holding this hearing and highlighting the
role of women as caregivers.
Recent results, and to me this was stunning, of a
survey conducted by Bruskin Research for the National Family
Caregivers Association, the NFCA, shows that the number of
persons who provided care for an elderly, disabled or
chronically ill friend or relative during the past year is more
than twice as large as what had been previously thought.
Survey results indicate that 26.6 percent of the adult
population was involved in caregiving during the last 12
months, and that translates into about 54 million people, of
whom over 60 percent are women.
So I am very pleased to have this very distinguished panel
of our colleagues here today. I know Senator Lincoln, my
colleague from Arkansas, will elaborate on this, but in
Arkansas, almost one-quarter million caregivers provide
assistance to friends or family members, and if that were paid
through insurance, it would cost taxpayers and policyholders
over $1.8 billion a year, according to our Department of Health
in the State of Arkansas.
Most of this caregiving is given willingly and given
lovingly, and it is a rewarding experience, but caregivers face
many, many challenges. Poor health, depression, a sense of
burden, concerns over financial costs are common among
caregivers. Most over half of caregivers, work outside the home
in order to help pay for out-of-pocket expenses because there
is no public assistance available.
Long-term care is an increasingly important issue, as we
all know, as we go into the 21 century, as the baby boomers
age. It is going to impact all of us. This is an issue that
deserves our full consideration and attention, and I applaud
Chairman Breaux and Chairwoman Mikulski for holding this
hearing today.
[The prepared statement of Senator Tim Hutchinson follows:]
Prepared Statement of Senator Tim Hutchinson
Chairman Breaux, Chairwoman Mikulski, I want to thank you
for holding this hearing highlighting the role of women as
caregivers.
Recent results of a survey conducted by Bruskin Research
for the National Family Care-givers Association (NFCA) shows
that the number of persons who provided care for an elderly,
disabled or chronically ill friend or relative during the past
year is more than twice as large as previously thought.
Survey results indicate that 26.6 percent of the adult
population was involved in caregiving during the past 12
months. Based on Census data, this translates into
approximately 54 million people, over half of whom (at least 60
percent) are women.
Family members and other informal caregivers are the main
fabric of our long-term care system in the United States. In
most cases, they provide uncompensated care to family or
friends with chronic illnesses or disabilities.
In Arkansas, almost one quarter million caregivers provide
assistance to friends or family members, and if paid for
through insurance would cost tax payers and policy holders over
$1.8 billion annually (according to the Arkansas DHS Division
of Aging and Adult Services).
Most caregiving is willingly undertaken and can be a
rewarding experience for the giver. But caregiving can also
result in great financial, physical, and emotional hardship--a
burden which is borne primarily by women. Women on average live
at least seven years longer than men, and they comprise 70
percent of the population age 85 and older.
Caregivers commonly experience poor health, depression, and
a sense of burden. Concerns over the financial costs of
caregiving are a major source of worry for many middle-income
caregivers. They are often not eligible for public assistance,
but cannot afford the out of pocket expenses associated with
such care.
It is estimated that as many as 50 percent of family
caregivers also work outside the home which can potentially
result in work disruptions and lost productivity, both
personally and in the workplace.
Caregiving will continue to be an issue well into the 21st
century as the baby boomer generation ages. This has brought
the concerns of caregivers into the public policy debate both
on Capitol Hill and in State Legislatures around the country.
Many decision makers in both the public and private sectors are
even themselves directly or indirectly affected by this issue,
as we will hear more about today.
This is an issue that deserves our full consideration and
attention.
The Chairman. Thank you, Senator. Senator Dodd, any
comments?
STATEMENT OF SENATOR CHRISTOPHER DODD
Senator Dodd. Well, Mr. Chairman. We have a big panel with
us here this morning. Let me just ask unanimous consent that I
will be able to put a statement in the record and to commend
both of our colleagues here for holding this hearing, and thank
our distinguished panel of colleagues and witnesses who are
going to share some thoughts with us.
This is a wonderful subject matter for us to be engaged in
here in the Senate, and obviously the statistics speak for
themselves. The numbers leap out at you. Rhetoric is wonderful,
but just you read the numbers and the problem is clearly
evident. When you are talking about 70 million Americans in the
next 30 years that will be over the age of 65, over 85 years of
age the fastest growing segment in the country, and then
looking at the disproportionate number of women who are already
but will be asked to bear the responsibility of caring not only
for themselves, because they will live so much longer than
their husbands. They will spend 17 years, the average woman
does, caring for children and 18 years caring for a husband or
a parent.
So it is pretty startling, the numbers, and clearly cries
out for some solutions. I would just mention briefly, I have
often said there are many things each one of us can claim, that
we are proud of having served in public life, but as long as I
live I will never forget the day in February 1993 when I stood
in the Rose Garden of the White House and watched President
Bill Clinton sign the very first law that he signed into law,
the Family and Medical Leave Act, which many of my colleagues
here made possible.
And that little piece of legislation which said you did not
have to lose your job if you took care of somebody, including a
parent. It is unpaid leave and so it is awkward for people
living with limited means, and we are trying to draft
legislation now to make this paid in some way without obviously
putting tremendous burdens on people, but it ought to be
available to people who are living on the margins economically
as well.
But the FMCA and the legislation that Senator Mikulski has
talked about, the National Family Caregiver Support Program,
have made a difference for an awful lot of Americans, and we
need to try and figure out how we can make that available to
more and more people. So I thank you both for doing this.
[The prepared statement of Senator Dodd follows:]
Prepared Statement of Senator Christopher Dodd
Chairwoman Mikulski and Chairman Breaux, thank you for
convening this important joint hearing. As we now know, over
the next 30 years, our nation will dramaticaly change as the
baby boom generation enters their retirement years. By 2030,
the number of those aged 65 and older will more than double to
an astounding 70 million Americans. Also, the number of those
age 85 and older is expected to grow faster than any other age
group. And as this morning's hearing will make evident, the
problem's presented by the aging of America are particularly
critical for women, as they represent a growing majority of the
population as age increases above the age of 65. Recognizing
this, the role of women as both caregivers and recipients of
long-term care services as they age themselves is a matter of
great concern and I appreciate the opportunity to examine this
critical issue.
As we'll learn today, the majority of those that provide
care for our elderly are women. In fact, research shows us that
approximately 75 percent of those providing care to older
family members and friends are women. And even though some
studies show a relatively equitable distribution of caregiving
between men and women, the same studies tell us that women
caregivers spend 50 percent more time providing care than their
male counterparts. Combined with the fact that women also
represent a significant majority of our elderly population, it
is clear why this morning's hearing is so important. As both
caregivers and recipients of care themselves, any examination
of the issue of how to best care for our senior citizens must
consider the important role of women in long-term care. Already
lacking, the need for increased access to valuable long-term
care services will only become more critical for many of our
nation's seniors. This is clearly a problem that is not going
to go away.
Today, women are thrust into many demanding roles, such as
mother, professional, doctor, researcher, teacher, and
caregiver. As statistics have shown us, it is women who mostly
take on the role as caregiver. They willingly take on the
responsibility of providing care for loved ones, seeking
information, listening, often taking on financial
responsibilities, along with their many other responsibilities.
This is laudable--though often thankless--very difficult work.
Those that provide care to an elderly family member or friend
need to be recognized and supported for the valuable work that
they are doing. Providing assistance to another is one of the
greatest gifts that a person can give. I believe that the
federal government should do all within its power to support
long-term caregivers and examine new ways to support their
efforts.
I was particularly pleased to have the opportunity to
author the Family and Medical Leave Act (FMLA)--legislation
that has afforded millions the chance to take valuable time
away from work so that they can care for a sick or elderly
family member. The FMLA grants the opportunity to caregivers to
take up to 12 weeks of unpaid leave during any 12-month period
to care for an immediate family member with a serious health
condition. When I first began looking at the issue of family
and medical leave, I was surprised to learn how many among us
take on the responsibility of caring for a sick or elderly
family member. In fact, a study conducted in my state of
Connecticut last year asked participants, ``during the past
month, did you provide regular care or assistance to a family
member or friend who is elderly or has a long-term illness or
disability to someone 60 years or older?'' Approximately, 15.2
percent or roughly 382,000 of Connecticut's adults are engaged
in elder care in any given month.
The problem of insufficient long-term care resources has
both great present and long-term implications. A decade from
now, we know that the baby boom generation will begin to
retire. With this our healthcare systems will be placed under
tremendous strain. Clearly this is a problem that we must begin
to think about today. I look forward to hearing from our
witnesses this morning concerning the question of how to best
develop a comprehensive long-term care infrastructure.
So, it is with great interest that I attend this morning's
hearing. I am also particularly interested in other issues that
will greatly affect our nation's senior citizens in the future.
Access to prescription medicines, Social Security and Medicare
reform, and access to safe and affordable long term care
services are all issues that must be closely examined if we as
a society are going to be prepared for the great increase in
aged Americans.
The one thing I am sure of, is that if we do nothing to
address this problem, it is our own loved ones requiring long-
term healthcare that will suffer. At its core, our discussion
this morning is about the quality of care we provide to some of
the most vulnerable among us. We owe it to both our seniors and
those that provide for their care to address this problem.
The Chairman. Thank you, Senator. Senator Santorum.
STATEMENT OF SENATOR RICK SANTORUM
Senator Santorum. I too will put a statement in the record
in deference to my colleagues who are here who have prepared
testimony. I just want to congratulate you for holding this
hearing. We have a huge problem right now, but as Senator Dodd
alluded to, it is going to get much, much bigger. We are going
to see an 80 percent increase in the number of elderly in this
country over the next 20 years, 80 percent increase.
And as Chris said, the fastest growing group of people in
America are people over the age 85. I had a little girl a
couple of years ago. I found out at that time that she has a
one in three chance of living to be 100, and one in six women
in this country alive today will live to be 100. This is an
incredible problem that is out there that is not--obviously the
human cost is obvious, but the economic implications for our
economy and with women such a vital part of our workforce and
the burden that we are placing on women as a result of the
aging population. It is a big issue. It is an important topic,
and the point that I just want to stress here, it is not that
bad right now compared to what it is going to be like 10, 20,
30 years from now.
And we really need to look at this in a comprehensive basis
and see what we can do about it, and I want to congratulate you
for doing this and all of you for testifying. Thank you.
[The prepared statement of Senator Santorum follows:]
Prepared Statement of Senator Rick Santorum
Thank you, Chairman Breaux, Chairwoman Mikulski, fellow
colleagues, and invited guests. If there is one thing that
unites all of us here today, it is perhaps the sentiment that
this hearing could not be more timely or necessary.
We all know of the tremendous fiscal pressures that the
coming baby boom retirements will impose on our public
healthcare and retirement programs, and that steps we take
today to reform programs like Medicare and Social Security will
go a long way to help meet the needs of our beneficiary
population down the road.
But a far less understood attendant policy challenge
stemming from our aging society is the growing costs and need
for long-term care services, and the unique factors that come
into play with regard to the well-being of women. So I again
thank the Committee members for holding this forum today.
Perhaps more than any other socioeconomic group, women are
disproportionately affected by long-term care. For many
centuries, women have served as the traditional, primary
caregivers of long-term health care. Today, women still bear
the responsibility of caring for their parents or loved ones
when they need attention.
And due to the fact that women are living longer than men,
they are more likely to develop the sort of functional ailments
that require long-term care services. Today, the average woman
can expect to live some seven years longer than her male
counterpart (to the age of 80 from birth, and to 85 if she
surpasses 65 years of age)--all the while increasing her demand
for vital long-term health care that ranges from help with day-
to-day activities to sophisticated therapies. In addition, more
women are working outside the home than ever before, and with
those professional responsibilities come the personal
responsibilities of essentially serving as another parent to
some loved family member. So we are witnessing a confluence of
disturbing trends that comprise the challenges that are
currently facing and will continue to face women and long-term
health care services.
The social costs of emotional strain and anguish that often
arise when daughters, granddaughters, sisters and nieces are
faced with such burdens are concerning in and of themselves, to
say nothing about such burdens' effects on personal financial
well-being and productivity in our economy.
I know that there are numerous proposals that many Members
of Congress and President Bush has put forth to help ease the
financial burdens of financing long-term care. Many of these
are bipartisan ideas, and have a lot of merit, such as
providing a tax deduction for long-term care premiums, giving
employees the opportunity to purchase group long-term care
insurance policies through their cafeteria plans, and offering
tax credits to help qualifying caregiving families pay for
supplies, home improvements and other services so vital to
keeping a loved one at home.
As for my own efforts, one facet of the long-term care
equation in which I am particularly interested and on which I
have been working with Senators Rockefeller, Lincoln, and
McConnell is legislation to allow Medicare home health
beneficiaries the option to receive some or all of their
Medicare home health services in an adult day setting. The idea
behind the Medicare Adult Services Alernative Act is to allow
caregivers more flexibility in attending to other things in
today's fast-paced family life, knowing their loved ones are
well cared for in a social and thereapeutic setting.
I look forward to hearing the experiences and perspectives
that each of these witnesses will provide. And I hope that they
will help illuminate the issues facing women and long-term
care, and help us identify what immediate and longer-term steps
we may take to prepare our country for the increasing costs and
need for long-term care services.
The Chairman. Thank you. Thank all of the members of the
committee, and I wanted to add that when I was talking about my
wife taking care of my mother-in-law, and our children, she
also has the real challenge of trying to take care of me, which
is probably the biggest problem of all.
Senator Dodd. I was going to make that point. [Laughter.]
The Chairman. She is also doing that which is a real
challenge. And women find themselves as homemakers in many,
many cases trying to do all of that and which is incredible.
We have a very distinguished group of our colleagues and we
are just delighted. I will try and introduce them first as they
arrive. I was going to say that our colleague from Arkansas,
Senator Blanche Lincoln, and I are joined at the hip. I mean I
want to make it clear it is the political hip. [Laughter.]
And we are members of the New Democrats together, the
Centrist Coalition together. She is a member of the Aging
Committee. She is a member of our Finance Committee. So we work
very closely together on a regular basis. I am delighted for
her leadership and pleased to have her comments. Blanche.
STATEMENT OF SENATOR BLANCHE LINCOLN
Senator Lincoln. Thank you. Well, a very special thanks to
you, Mr. Chairman, and to Chairwoman Mikulski, for having the
foresight of bringing this very important issue up. It is
certainly a pleasure to testify today, and we want to thank you
all and both of the committees and the members of the
committees for their hard work on this very important issue.
I am glad to be in the company of other women senators on
such a distinguished panel that I sit with here, sharing our
experiences and our point of view. As we all know, the face of
caregiving is female. Caregiving for the elderly and children
falls predominantly to women in our society. In our society, we
women care for our children, our parents and often our
husband's elderly relatives.
Caregiving is an issue I care about deeply. Over the past
year, I have hosted several forums on aging, long-term care,
and caregiving issues in Arkansas. Arkansas ranks fifth highest
for its population of 55 plus seniors and second for the
percentage of seniors living in poverty. Three out of five
elderly Arkansans are women.
As a baby boomer, I consider myself part of that sandwich
generation that Senator Breaux mentioned, a group obviously
responsible for caring for children and aging parents
simultaneously. And, in fact, I am actually a part of another
group called the ``club sandwich'' generation, whose members
are also taking care of their grandparents. My husband's
grandmother is now 104, living in an assisted living apartment
and unbelievable in terms of her abilities to get around.
But it certainly does put us in a situation of not only
having a generation on either side, but a second generation on
either side of those generations. I am a proud mother of twin
5-year-old boys who are extremely active, and as any parent
knows, just keeping up with two small children is as
challenging as it is rewarding, and I know that Senator Dodd
can add to that a great deal since his recent appearance on the
scene of fatherhood.
But, obviously, my typical day of making sure that lunches
are packed, both for my husband and my children, meeting a bus,
getting children to school, making sure that meals are planned
so that we do have somewhat of a resemblance of a normal family
home in terms of sitting down to dinner, involvement with
getting kids to soccer and karate practice. Thank goodness for
cell phones because in addition to my two boys and my husband,
I also help monitor the health of my aging parents,
particularly my 73-year-old father who is in the later stages
of Alzheimer's disease, and more important, his primary
caregiver, which is my mother.
And I know you all will not believe this, but she is an
extremely strong-willed woman and very independent-minded.
Don't know where it comes from. [Laughter.]
But it is often difficult as we deal with our parents and
those who are caregivers. We must consider not only their sense
of independence, but their sense of pride and their ability to
provide dignity to the individual that they are taking care of.
As Senator Mikulski brings to mind, the idea of looking at
someone who in my lifetime has been that strong provider, the
one who taught me how to fish or how to scalp cotton and chop
soybeans, the man who was there for me at every turn in my
life, now recognizing that he needs almost every second of his
day to be cared for by one of us.
And I can tell you from personal experience that these
responsibilities can seem awesome at times, not only from the
physical strength that is called upon by my mother in order to
be a primary caregiver, but also certainly the emotional
strength. I know that I am not alone in this, so I have been an
advocate for passing legislation supportive of the growing
number of frail elderly Americans as well as their caregivers.
As a member of the Finance Committee and the Special
Committee on Aging, I have a special interest in working with
others here in the U.S. Senate to prepare healthcare providers
and Medicare for the inevitable aging of America. I think the
numbers that were mentioned by all of our colleagues in their
opening statements, particularly Senator Santorum on the 80
percent of where we are going, is just phenomenal.
We also have the Geriatric Care Act of 2001, which calls
for increasing the number of geriatricians in our country
through training incentives and Medicare reimbursement for
geriatric care.
Our nation's healthcare system will face unprecedented
pressure as our population grows older. Demand for quality care
will increase and we will need physicians who understand the
complex health problems that aging brings. I had a phone call
from a constituent the other day in Jonesboro, AR who is caring
for her aging husband, and she had been seeing five different
physicians in five different places.
She had finally discovered the Don Reynolds Center on Aging
in Little Rock, and she called me with unbelievable delight
that she had actually found a place where she could take her
husband and all of her needs could be met.
The doctors talked to one another. The physicians as well
as all of the other medical professionals talked and exchanged
ideas and concerns about that one patient in order to give them
the ultimate of care. As seniors live longer, incidences of
disease and disability increase. Conditions such as heart
disease, cancer, stroke, diabetes, and also Alzheimer's disease
occur more frequently as people age.
The complex problems associated with aging require special
training of physicians in geriatrics. Geriatric medicine
provides the best healthcare for frail older persons.
Geriatrics promotes wellness and preventive care with an
emphasis on care management and coordination that helps
patients maintain functional independence, improve their
overall quality of life, and reduce unnecessary and costly
hospitalization, institutionalization and other complications.
Today, there are fewer than 9,000 certified geriatricians
in the United States. Only three medical schools in our
country, the University of Arkansas for Medical Sciences being
one of them, have a department of geriatrics. This is
incredible considering that all 125 medical schools in our
country have departments of pediatrics. Why would only three of
them have a department in geriatrics?
The number of geriatricians is expected to decline
dramatically in the next several years. In fact, most of these
doctors will retire just as the baby boomer generation attains
Medicare eligibility.
I will speak more about my bill later this month in a
Special Committee on Aging hearing devoted solely to that
issue, but I encourage my colleagues to look at it and the
great need that we have out there. I have also supported
enactment of other legislation to assist caregivers and to help
our growing elderly population to prepare for their long-term
care needs.
I helped enact the National Family Caregivers Act which
will provide funding to help caregivers gain access to support
groups, counseling and respite care. I appreciate the work that
Senator Collins did on that bill and that she worked with us on
it. What is important about this bill is that it focuses
squarely on the caregivers in the family, most often the
daughters and wives who make tremendous sacrifices to care for
their spouses, parents, and loved ones in their senior years.
By helping these caregivers get the support they need, we
open the door for more effective care and create greater
opportunities for people to age in their homes rather than in
nursing homes or institutions. Recently, we also made long-term
care insurance available.
Senator Mikulski. Senator Lincoln, we do not want in any
way to limit your testimony. The time has expired, and Senator
Murray has to leave.
Senator Lincoln. Certainly. What I would like to emphasize
in my testimony today, as well as in my written remarks, as I
refer to pieces of legislation, is that in these legislative
remedies we are looking for innovative and creative ways of
addressing our seniors' needs in long-term care.
Our hope is is that we can keep our loved ones in their
homes and that we will look for those innovative ways through
legislation in order to be able to make that happen. Thank you.
[The prepared statement of Senator Lincoln follows:]
Prepared Statement of Senator Blanche Lambert Lincoln
Good morning. It is my pleasure to testify today. I want to
thank Senators Breaux and Mikulski for calling for this hearing
on such a significant topic. I am glad to be in the company of
other women senators, sharing our experiences and our points of
view. As we all know, the face of caregiving is female.
Caregiving for the elderly and children falls predominantly to
women in our society. In our society, we women care for our
children, our parents, and often our husband's elderly
relatives.
Caregiving is an issue I care about deeply. Over the past
year, I have hosted several forums on aging, long-term care,
and caregiving issues in Arkansas. Arkansas ranks fifth-highest
for its population of 55-plus seniors and second for the
percentage of seniors living in poverty. Three out of five
elderly Arkansans are women.
As a baby boomer, I consider myself part of the ``Sandwich
Generation'' a group responsible for caring for children and
aging parents simultaneously. In fact, I belong to the ``Club
Sandwich Club,'' whose members are also taking care of their
grandparents. My husband's grandmother is now 104 years old.
I am the proud mother of twin 5-year-old boys. As any
parent knows, just keeping up with two small children is as
challenging as it is rewarding. In addition to my boys, I also
help monitor the health of my aging parents particularly my
father, who is in the later stages of Alzheimer's disease.
I can tell you from personal experience that these
responsibilities can seem awesome at times. I know that I am
not alone in this, so I have been an advocate for passing
legislation supportive of the growing number of frail elderly
Americans and of caregivers.
As a member of the Finance Committee and the Special
Committee on Aging, I have a special interest in preparing
health care providers and Medicare for the inevitable aging of
America. I am the author of the Geriatric Care Act of 2001,
which calls for increasing the number of geriatricians in our
country through training incentives and Medicare reimbursement
for geriatric care. By improving access to geriatric care, the
Geriatric Care Act of 2001 takes an important first step in
modernizing Medicare for the 21st century.
Our nation's healthcare system will face unprecedented
pressure as our population grows older. Demand for quality care
will increase, and we will need physicians who understand the
complex health problems that aging brings. As seniors live
longer, incidences of disease and disability increase.
Conditions such as heart disease, cancer, stroke, diabetes and
Alzheimer's disease occur more frequently as people age.
The complex problems associated with aging require special
training of physicians in geriatrics. Geriatricians are
physicians who are first board certified in family practice or
internal medicine and then complete additional years of
fellowship training in geriatrics. Certified geriatricians pass
a certificate of added qualifications administered by either
the American Board of Internal Medicine or the American Board
of Family Practice.
Geriatric medicine provides the best healthcare for frail
older persons. Geriatrics promotes wellness and preventive
care, with an emphasis on care management and coordination that
helps patients maintain functional independence, improve their
overall quality of life, and reduce unnecessary and costly
hospitalizations, institutionalization and other complications.
Given our seniors' dependence on prescription drugs, it is
increasingly important that physicians know how, when, and in
what dosage to prescribe medicines to older persons and have
knowledge of possible interactions with other medications.
Today, there are fewer than 9,000 certified geriatricians
in the United States. Of the approximately 98,000 medical
residency and fellowship positions supported by Medicare in
1998, only 324 were in geriatric medicine and geriatric
psychiatry. Only three medical schools in the country the
University of Arkansas for Medical Sciences (UAMS) being one of
them have a department of geriatrics. This is incredible,
considering that all 125 medical schools in our country have
departments of pediatrics.
The number of geriatricians is expected to decline
dramatically in the next several years. In fact, most of these
doctors will retire just as the baby boomer generation attains
Medicare eligibility. I will speak more about my bill later
this month in a Special Committee on the Aging hearing devoted
solely to this issue.
I have also supported enactment of other legislation to
assist caregivers and to help our growing elderly population to
prepare for their long-term care needs. I helped enact the
National Family Caregivers Act, which will provide funding to
help caregivers gain access to support groups, counseling, and
respite care. What's important about this bill is that it
focuses squarely on the caregivers in the family most often the
daughters and wives who make tremendous sacrifices to care for
their spouses, parents, and loved ones in their senior years.
By helping these caregivers get the support they need, we open
the door for more effective care and create greater
opportunities for people to age in their homes, rather than in
nursing homes or institutions.
Recently, we also made long-term care insurance available
to Federal employees. This is a major step forward in making
long-term care insurance affordable and accessible for as many
as 13 million people. That's 13 million people who will have an
opportunity to protect themselves and their families against
financial ruin as they age. What's also important about this
law is that it's going to serve as a benchmark for the private
sector. The government is setting a standard by offering this
insurance, and I'm confident that we have created a model that
industry will want to follow.
Also, I co-sponsored the Long-Term Care Security Act, which
will allow taxpayers to deduct the cost of long-term care
insurance premiums and would provide tax credits for long-term
care expenses.
An initiative I am also interested in pursuing is doing
more to shift a greater portion of Federal funding from
institutional care to community-based care. Currently, we spend
75 percent of federal dollars on institutional care. We must
create opportunities for home care, adult day services, and
hospice centers to flourish. By channeling more federal funding
to these community-based services, we can develop a variety of
options for care that are more responsive to the needs of our
seniors.
Adult day services meet an essential element in the
continuum of care for elderly persons. Last year, the Arkansas
Center for Health Improvement was asked by the Arkansas
Division of Aging and Adult Services in collaboration with the
Robert Wood Johnson Foundation to develop information on the
status of adult day services in Arkansas. I was disturbed by
the finding that the general public has a very limited
knowledge of the program and that many health care providers
have a limited understanding of adult day services as a
community-based option to nursing home or residential care
facilities. We must do more to make sure that the elderly and
those providing their care are aware of community-based
services, such as adult day services.
I am also concerned that our Nation's veterans and their
dependents may not be fully aware that they are entitled to
benefits and services through the Department of Veterans
Affairs. One of the most important benefits the VA provides is
comprehensive health care, including low-cost prescription
medications. Last year I submitted a Senate resolution calling
on the Secretary of Veterans Affairs to work with the
Commissioner of the Social Security Administration to better
inform the Nation's veterans and their dependents about
benefits available from the VA.
What I want to emphasize in all of these legislative
remedies is that we're looking for innovative and creative ways
of addressing our seniors' needs for long-term care. Whether
it's tax credits, deductible insurance premiums, community-
based care, or focusing on caregivers, we need to find new ways
to encourage people to prepare for their long-term care needs
and to explore options besides institutions.
Again, I am grateful to Senators Breaux and Mikulski for
organizing this hearing. I also appreciate sitting beside other
women senators who each bring a unique perspective to their
duties in the Senate, and particularly on the issue of women
and caregiving. I look forward to working together to come up
with workable solutions.
Senator Mikulski. Thank you and we will look forward to
your hearing as well and your ongoing and continued leadership.
I am apprised that Senator Murray has to leave, and I would
like to suggest that she speak and then Senator Collins to make
sure the other party gets a chance to speak, and I would like
to bring to the committee's attention that Senator Snowe might
be appearing, but both Senator Snowe and Senator Kay Bailey
Hutchison have had long-standing leadership in this area.
The Chairman. Well, Senator Murray, obviously, thank you
very much for being with us. I mean you have been a leader in
this area on the Senate Health, Education, Labor, and Pension
Committee, and you have a story that we are aware of, and we
look forward to hearing you and know that you have been a
terrific leader in this area, and thanks for participating.
Patty.
STATEMENT OF SENATOR PATTY MURRAY
Senator Murray. Thank you very much, Chairman Breaux,
Chairman Mikulski, for your leadership on this issue and for
calling this very important and unique hearing. When I look at
the issues of long-term care, I really think back to my own
experiences in my family, starting with my mother.
My mother was my hero. She was the best basketball player
at five feet tall on her team when she grew up in Butte, MT.
She went to college to become a pharmacist. She loved every
Notre Dame team and could name all the players and list all of
the scores.
She raised seven kids on a shoestring budget. When I was 15
with siblings ranging in age from one to 16, my father was
diagnosed with multiple sclerosis and had to quit his job and
soon became wheelchair bound and homebound. My mom went back to
work, she got every one of us off to college, and she worked
full time as my dad's caregiver.
When other moms were taking trips to Hawaii after their
kids were grown, my mom was lifting my dad out of bed and
dressing him every single morning. When my mom's friends
learned to play bridge and golf, my mom learned how to get a
motorized wheelchair in and out of a car.
When other moms cared for their new grandchildren, my mom
was making dinner and feeding my dad. My mom never became a
pharmacist. She only took one trip in her life, and that was
here to Washington, DC., when her daughter became a United
States Senator.
My mom never went to the opera, saw a movie, or went to
lunch with her friends, and, you know, she never complained,
even when it affected her own health. She accepted her role as
a caregiver, but I think for many families, like my own,
caregiving is cloaked in silence. Caregivers like my mom cannot
speak out for one simple reason: they do not want the person
they are caring for to ever feel that they are a burden. So we
have to speak out for them.
Today, both my parents are gone, but thousands of people at
home are silently taking care of someone they love, and they
need us to speak out. I see two proposals that I think could
help.
First, we need to double funding for the Family Caregiver
Support Program. Senator Mikulski has proposed this and I
strongly support it. Second, I think we need a respite care
benefit under Medicare. You will recall that in 1997 President
Clinton proposed that idea and it would provide really needed
support and relief for family members who are caring for a
relative in their home. Even if it only provides up to 72 hours
of respite care a year, I can assure you it would be a life
line for thousands of families. Seventy-two hours a year for my
mom would have been an incredible miracle.
My mother was a hero because she worked in silence, but
today we can break that silence and give families the support
they need as they care for loved ones. I am very grateful to
you, Chairman Breaux, Senator Mikulski, members of this
committee, for holding this hearing and allowing us to do the
right thing for so many people who are caring for a family
member in silence. Thank you.
The Chairman. Thank you very much, Senator Murray, and we
appreciate your being with us, and if you do have to depart, of
course, we understand that.
[The prepared statement of Senator Murray follows:]
Prepared Statement of Senator Patty Murray
Thank you Chairman Mikulski and Chairman Breaux for your
leadership on this issue and for calling this unique hearing.
When I look at issues like long term care, I think back to my
own experiences in my family starting with my mother. My Mother
was my hero. She was the best basketball player on her team
where she grew up in Butte, MT. She went to college to become a
pharmacist. She loved every Notre Dame team and could name all
the players and could recite all the scores. She raised 7 kids
on a shoestring budget.
When I was 15, my Dad was diagnosed with Multiple Sclerosis
and had to quit his job, so Mom worked. She got every one of us
kids off to college, and then she worked full time as my Dad's
caregiver. When other mothers were taking trips to Hawaii after
their kids were grown, my mom was lifting my dad out of bed and
dressing him every single morning. When her friends learned to
play bridge and golf, my mom learned how to get a motorized
wheel chair in and out of the car. When other moms cared for
grandchildren, my mom was making dinner and feeding my dad.
My mom never became a pharmacist. My mom only took one
trip--one that she treasured forever----when she came to
Washington DC to see her daughter become a U.S. Senator. My mom
never got to go to the opera, or see a movie with friends, or
go out to lunch with her neighbors. You know: she never
complained even when it affected her own health. In my memory,
she was one of the happiest people alive. She accepted her role
as a caregiver. But I think for many families like my own,
caregiving is cloaked in silence.
Caregivers like my mom can't speak out for one simple but
important reason: they don't want the person they are caring
for to ever feel they are a burden. So we must speak out for
them.
Today both my parents are gone. But thousands of people are
at home today silently taking care of someone they love. They
need us to speak out. And I see two proposals that could help.
First, we should double funding for the family caregiver
support program. Senator Mikulski has proposed this, and I
fully support it. Second, I still think we need a respite care
benefit under Medicare. You'll recall that in 1997, President
Clinton proposed this idea. It would provide vital relief for
family members who are caring for an aging relative in the
home. Even if it only provides up to 72 hours a year of respite
care, it would be a lifeline for thousands of families.
My mother was a hero because she worked in silence. But
today, we can help break that silence and give families the
support they need as they care for loved ones. I'm grateful to
Senators Mikulski and Breaux for holding this hearing and
allowing us to do the right thing for so many people who are
caring for a family member in silence.
Senator Mikulski. Thank you. Mr. Chairman, I want to
introduce Senator Susan Collins, a dear friend and colleague. I
also need to acknowledge the role of the Republican women
in the economic security and health security facing families
and women. Senator Kay Bailey Hutchison has been a strong
advocate particularly on the economic security issue. She and I
worked, when she took the leadership, on the issue of expanding
spousal contributions to IRAs, recognizing the role of the
homemaker and she has also worked on other issues.
The senior senator from Maine, a member of the Finance
Committee, our own colleague from the House of Representatives,
has long been a champion of long-term care, making sure that
women have access to the health care they need, and also for a
very sensible prescription drug benefit. So they are going to
try to get here, but I want everyone to know that we really
worked on a bipartisan basis. We are going to hear from Senator
Sue Collins, her own ideas, but though they are not here at the
hearing, I want you to know that the Republican women are at
the table when we discuss these issues.
Senator Sue Collins has been a champion of making sure the
elderly have the benefits that they need. She has been a real
advocate in terms of the issues of Medicare givebacks, in terms
of the spartan reimbursement for nursing homes, and
particularly the skimpy ones for home health care. She and I
teamed up because we had visiting nurses visiting in Maine and
in Maryland in snowmobiles in order to make sure people got
their home health care.
She has been an advocate in these areas, and she has also
worked very hard on the issue of diabetes, which is a chronic
and progressive illness, that if not properly managed, requires
long-term care from kidney dialysis to other support services.
She is the ``Legislator of the Year'' of the Visiting Nurses
Association of America and the Juvenile Diabetes Foundation has
recognized her. I introduce Senator Sue Collins.
STATEMENT OF SENATOR SUE COLLINS
Senator Collins. Good morning, and thank you very much,
Madam Chair, and for your very gracious invitation to testify
and your very kind introduction. I want to commend you and
Senator Breaux and all of the members of this committee for
your leadership in holding this very important hearing.
As we have heard so eloquently this morning, this is an
issue that touches every American family. Each of us has had
the experience of trying to figure out how to ensure
compassionate care for a much loved elderly relative, but the
simple fact is that this issue affects women even more than
men.
Women can expect to live 7 years longer than men on average
so we are more likely personally to need long-term care. In
addition, as has been mentioned, 75 percent of all caregivers
are women. Senator Santorum mentioned that his daughter has a
one out of three chance of living to 100. She also has a very
good chance of ending up taking care of her father. [Laughter.]
That should give us all pause. The challenges for women are
particularly great because it comes at a time when more women
than ever before are working outside of the home. The fact is
that the average caregiver in the United States today is a 46-
year-old woman who works full time outside of the home and yet
spends an additional 18 hours a week caring for her 77-year-old
mother.
Long-term care is the major catastrophic healthcare expense
faced by older Americans. It is therefore particularly
troubling that while women are at greater risk of needing long-
term care than men, they are usually far less prepared for the
financial consequences. In a recent poll of baby boomers, 33
percent of the women surveyed reported having less than $25,000
in their retirement plans.
That amount would not even cover a single year of nursing
home costs. To help address this problem, I have joined with
Senator Mikulski in calling for a doubling of funding for the
National Family Caregivers Support Program authorized by the
Older Americans Act. I have also joined with my colleagues,
Senator Lincoln, Senator Grassley, Senator Breaux, and a
bipartisan group in sponsoring the Long-Term Care and
Retirement Security Act.
This important legislation would give a tax credit for
long-term care expenses of up to $3,000 to help families
already struggling to provide long-term care to a loved one. It
will also encourage more Americans to plan for their long-term
care needs by providing a tax deduction to help them afford
private long-term care insurance.
Finally, I cannot let this opportunity pass without noting
that we still have work to do to prevent an additional cut in
home healthcare payments from going into effect in October of
this year.
Home healthcare is a less expensive alternative to nursing
home care for many older Americans. Moreover it allows them to
receive the care in the security, privacy and the comfort of
their own homes. So I want to also remind all of our colleagues
that we still have work to do in that area as well.
Just as women have more at stake when it comes to long-term
care, we also stand to gain the most from public policies that
help families meet their long-term care needs. As a member of
both this distinguished committee as well as the Health
Committee, I look forward to continuing to work with my
colleagues to address these important issues. Thank you for the
opportunity to appear today.
[The prepared statement of Senator Collins follows:]
Prepared Statement of Senator Susan Collins
Mr. Chairman, Madam Chairman, thank you for your leadership
in calling this hearing on an issue of critical importance to
us all, but of particular concern to women long term care.
The simple fact that women can expect to live as many as 7
years longer than their male counterparts puts them at far
greater risk of needing long-term care. Moreover, not only are
women far more likely to need long-term care, but they are also
the ones who most often shoulder the burden of providing long-
term care to their loved ones. Today, almost 75 percent of our
nation's caregivers are women wives caring for husbands,
daughters caring for parents, even daughters-in-law caring for
parents-in-law.
And this is at a time when more women are working outside
the home than ever before. The average caregiver in the United
States today is a 46-year old woman who works outside the home
and spends 18 hours a week caring for her 77-year old mother.
Long-term care is the major catastrophic health care
expense faced by older Americans. It is therefore particularly
troubling that, while women are at greater risk of needing
long-term care than men, they are usually far less prepared for
the financial consequences. In a recent poll of baby boomers,
only 27 percent of women surveyed had more than $100,000 in
their retirement plans. Thirty-three percent of the women
surveyed reported having less than $25,000, an amount that
would not even be sufficient to cover 1 year of nursing home
costs.
To help address this problem, I have joined with Senator
Mikulski in calling for a doubling of funding for the National
Family Caregiver Support Program authorized by the Older
Americans Act. I have also joined with Senators Grassley,
Breaux and a bipartisan group of our colleagues in sponsoring
the Long-Term Care and Retirement Security Act. This critically
important bill will give a tax credit for long-term care
expenses of up to $3,000 to help those families already
struggling to provide long-term care to a loved one. It will
also encourage more Americans to plan for their long-term care
needs by providing a tax deduction to help them purchase
private long-term care insurance.
Just as women have more at stake when it comes to long-term
care, they also stand to gain the most from public policies
that help families meet their long-term care needs. As a member
of both the HELP Committee and the Special Committee on Aging,
I look forward to working on these issues and thank the
Chairmen for the invitation to testify.
The Chairman. Thank you, Susan.
Senator Mikulski. Let me turn now to Senator Debbie
Stabenow, and by the way, Senator Lincoln, we like that phrase
``the club.'' We talked about the sandwich generation. Is that
``club sandwich'' your line? We are going to start to talk
about that and make sure it has got the bacon in it.
Senator Stabenow is our next witness. Senator Stabenow is a
sister social worker. She has a master's degree in social work.
She is essentially a certified do-gooder, but brings incredible
background from experience in the Michigan legislature and also
the House of Representatives and now in the Senate where she
has really championed the issues of the elderly from a
prescription drug benefit to the issue of home health care.
The National Committee to Preserve Social Security and
Medicare has recognized her with a top award, and the National
Association for Home Care has named her a ``home health hero.''
A national magazine has also named her one of the ten
powerhouses in Washington. So let us hear the kilowattage.
STATEMENT OF SENATOR DEBBIE STABENOW
Senator Stabenow. Well, good morning, and I want to thank
my colleague, Senator Breaux, for your leadership on the
committee, as well as Senator Mikulski. I am here today sitting
at the witness table as opposed to sitting in my usual seat
which would be as a member of the committee, and I look forward
to joining the committee as we move forward on these issues.
My colleagues here have spoken very eloquently about the
fact that we share a bond as mothers, sisters, daughters,
grandmothers, who all are playing a role in long-term care for
our loved ones. My mother also is my hero, and my father was
ill when I was growing up, and she was, in fact, a nurse, a
director of nurses at the local hospital, but, in addition to
caring for us, cared for my father and she really is my hero.
She is now at 75 on two golf leagues and doing water aerobics
and so my guess is she will be caring for me rather than me
caring for her. And I am very pleased to have her genes.
But there is no question that while women constitute far
and away the highest number of consumers of long-term care in
both the community-based services and facility-based settings,
we also comprise an overwhelming percentage of both the formal
and informal caregiving workforce, and it is so critical that
we understand that, and I would hope that we would have the
same sense of urgency on a policy level that we have in our
homes when our mothers, or fathers, or grandparents need care.
When something happens in our own family, I know for us the
world stops until you fix it. There is a sense of urgency about
healthcare, particularly long-term care, and I would hope that
we could engender the leadership on our two committees that
same sense of urgency in the policy arena of what it means to
say to a family we will have to wait a year, or 2 years, or 5
years, or 10 years.
Our families are struggling everyday, whether we are paying
attention to the issue or not. We have all heard the
statistics. I have very specific information that I would like
to leave in the written testimony as it relates to Michigan and
what has been happening. My great concern is that we are seeing
at every level cutbacks, both because of downturns in the
community we have seen in the Michigan economy and downturns
and cutbacks in Medicaid and the challenges of Medicare and so
on.
But we are going in the opposite direction of where we need
to be in terms of the need. We are seeing under Medicaid
waivers that we are seeing cutbacks, and in fact we are in a
situation where we have also seen 18 nursing homes closed in
Michigan since 1998, half of them voluntarily, and one of them,
in fact, is being closed by the State of Michigan this week due
to performance deficiencies.
I also would join with my colleague, Senator Collins, in
speaking about the critical needs of home healthcare and the
cutbacks that occurred through the BBA and the need to continue
to restore those funds, and I would remind all of us that
another 15 percent cut is scheduled for this fall and would
devastate services, absolutely devastate services available to
families nationwide.
I think probably more than any other combination of issues,
the one I hear the most about and have heard about from years
from the people I represent have been requests for home
healthcare and the challenges of prescription drug costs. And I
need to mention that today because I believe they are combined
as more and more people are attempting to be at home rather
than in a nursing home or a hospital. Much of that relates to
their ability to have access to prescription drugs, and that is
an incredibly challenging issue for us, and I believe
underlines the majority of the cost increases that we are
seeing in all level of healthcare today, and one that we
certainly need to address.
There are many positive things that we have been trying to
move forward on as a Congress. In 2002, we reauthorized the
Older Americans Act, as we all know, and included a National
Family Caregivers Support Program, which is very positive, and
I think one of the most important things is that we included
respite care, which again we all hear over and over again, and
I know we have experienced in my family the need for that time
out so that when you are the caregiver and have the day-to-day
pressures of caregiving, it is very important to give those
caregivers a time out.
In conclusion, I would just say again it is a privilege to
be here with my colleagues, each of whom including Senator
Mikulski, who is on the dias, who have been champions on this
issue, both because of our own personal experiences, but also
because of the people we represent, and I am hopeful that we
will be able to address the challenges and create the sense or
urgency that is needed and the sense of urgency that is felt in
each family struggling with issues of long-term care and that
we will be able to bring that sense of urgency here to the U.S.
Senate. Thank you.
[The prepared statement of Senator Stabenow follows:]
Prepared Statement of Senator Debbie Stabenow
It is a pleasure to join my colleagues today at the witness
table rather than in my usual seat as a member of this
Committee. We women are here today to emphasize the role that
we, our mothers, our sisters, our daughters and our
grandmothers play in providing long-term care for loved ones.
While women constitute far and away the highest number of
consumers of long-term care services--in both community based
and facility based care settings--they also comprise an
overwhelming percentage of both the formal and informal care-
giving workforce.
You all have heard the statistics and what they tell you is
that wives are caring for husbands, mothers are caring for
children, and grandmothers are caring for entire extended
families. Our economy is reliant upon this uncompensated care
provided by loving family members, most of who are women. Many
of these woman face difficult choices between family and work
and because of time away from the workforce may jeopardize
their retirement savings, as well. Unfortunately, Michigan's
women are facing ever decreasing choices in acquiring or
retaining long term care services and help for themselves or
their families.
For instance:
In-Home Care: The Center for Medicare and Medicaid
Services (CMS) started the Medicaid waiver program for the
elderly and disabled as an optional Medicaid program in 1981.
Michigan was one of the last states in the nation to implement
a statewide waiver in 1998. In FY 2001, the waiver served
almost 15,000 clients. However, that same year, the Michigan
Department of Community Health (DCH) decided to stop new
enrollments in the waiver program, except for people
transitioning out of nursing homes. In FY 2002, the DCH decided
not to provide waiver slots to people moving out of nursing
homes. The waiver program is now closed to anyone in the
community who qualifies for Medicaid and is in danger of moving
to a nursing home. The only options for such an individual are
enrolling in the Medicaid Home Help program (which uses the
most restrictive Medicaid income and asset tests) or moving to
a nursing home.
The DCH has also placed restrictions on the amount of care that
can be received by the waiver clients that are still being
served. The DCH has only provided enough funding for an average
stay of 270 days, and waiver agencies estimate that the average
stay will greatly exceed that figure this fiscal year. For this
reason, waiver agencies have been forced to cut back on the
services received by frail elders and younger people with
serious disabilities.
18 nursing homes closed in Michigan since 1998--half
of them voluntarily--and one of which is being closed by the
State of Michigan this very week due to performance
deficiencies.
Assisted living facility beds--both licensed and
unlicensed--remain unaffordable to many in the long-term care
market, which again is predominated by women.
Other poorly funded community services face even greater cuts and
reductions as the current state budget crisis in Michigan deepens. As
with so many issues and systems, the major problem with long-term care
is that there is a serious deficiency in funding--and consumers in this
area are uniquely unable to pay for it.
While I know I must keep my remarks short, I must also briefly
mention that funding for home health care was severely cut in 1997 by
the BBA and I have been working ever since to restore funding. I would
like to remind everyone that another 15 percent cut is scheduled for
this fall that will devastate services available to families
nationwide.
This is the bad news. But, there are positive stories to tell, as
well. In 2000, Congress reauthorized the Older Americans Act. In the
reauthorization a new ``National Family Caregiver Support Program'' was
created. It provides funding to states (which pass the funding on to
Area Agencies on Aging) to provide information and services to family
caregivers. A key component of the services provided is respite care.
Respite care can take many forms, but in essence it is there to help
relieve the burden of family members caring for loved ones. While this
includes help for elderly spouses caring for an ill husband or wife, it
also includes providing support for a growing trend in our country--
grandparents caring for grandchildren.
Last year, Michigan received its first allotment for the Family
Caregiver Program, $3.8 million dollars. Area agencies on Aging held
forums and roundtables throughout the state to make sure resulting
services and programs would be tailored to meet the needs of the
community. I am already getting positive feedback about this program
and I hope that it continues to grow and provide much needed help to
families.
In conclusion, I feel is a privilege to join with my Senate
colleagues today--both women and men--to voice a concern that families
are facing across the nation. Long-term care needs are not being met
and women bear much of the burden of filling in the gaps that currently
exist. I am hopeful that today's hearing can begin the debate that will
lead to offering more choices and affordable solutions for families.
The Chairman. Thank you very much, Senator.
We are pleased to have Senator Hillary Clinton as our next
presenter, fresh from glowing accolades from her opening night
performance at the Correspondents' Dinner last night where she
was a terrific hit. It is hard to believe that almost 10 years
ago, you were before Congress testifying as the chair of the
Task Force on Health Care over on the House side. I remember it
quite well when you were advocating a national health policy
and really talking about some of the same issues that 10 years
later we are still talking about, and it shows you the urgency
of Congress trying to find a solution to these very difficult
problems, which only get more difficult everyday.
So we are delighted to have you back with us and look
forward to your suggestions. Hillary.
STATEMENT OF SENATOR HILLARY RODHAM CLINTON
Senator Clinton. Thank you very much, Senator Breaux and
Senator Mikulski and my colleagues. I am pleased to testify
along with so many people who have made a real contribution to
the ongoing discussion about how we are going to deal with the
inevitable transformation of the baby boom into the senior
boom, and we are going to be faced with decreasing resources as
we look forward. The increasing needs of a population that will
become much more dependent, not only on their families but on
society.
We have heard some extremely moving testimony as well as
stories from the senators on the panel about their own
families, and we can only multiply that literally millions and
millions of times over to understand the extraordinary pressure
that exists today on so many caregivers, and it is not only
something that has to be borne by individual families who are
heroically dealing with the challenges of caring for not only
older relatives but in many instances children with long-term
disabilities, people in the prime of life who are struck down,
and I hope that this hearing bringing together the resources of
the Senate will begin to address the problems.
We have already touched on the number of women who far
outnumber men in the aging population, and these women suffer
disproportionately from our failure to develop a coherent long-
term care financing system, and many women who are not only
caring for the loved ones, but are also facing their own
deteriorating health and frailty, because older women are twice
as likely as men to live in nursing homes and twice as likely
to live in poverty.
Because we have an inability in our system to finance and
support long-term care, we rely on informal unpaid caregiving
and the brunt of that is borne by women. Seventy-five percent
of unpaid caregivers are women who on average provide 50 more
hours of informal care per week than men.
Third, and finally, an underlying reason why our caregiving
systems are in disarray and why these important functions are
undervalued, underfinanced, and too often uncompensated in our
society is because it is work that women perform in their
homes. We too often take for granted the contribution that
women make as caregivers, and for too long this work has been
invisible. No one paid for it. It did not show up in the GDP.
Now just because family caregiving is unpaid does not mean
it is costless. The costs include not just time and lost
economic opportunities, but also the personal and emotional
strain, fatigue and very frequently poor health. These costs
should be recognized. These caregivers must be supported
through respite care and other services.
Now, we have made progress, and I particularly applaud my
colleagues, especially Senator Mikulski, for taking the
leadership position on this, but as economists and as our own
common experience tells us, when work is undervalued, it will
unfortunately be undersupplied, and we are quickly realizing
that our country is suffering not just from a budget deficit
but what Mona Harrington has called a ``care deficit.'' In
nursing, in child care, in the teaching profession, and in
long-term care, we see shortages and looming crises that
threaten the provision of care on which our children, our
parents, our families, and our society depend.
We have estimated that in New York alone, we have 3.5
million informal unpaid family caretakers. Now thanks to the
vigorous advocacy of leaders like Senator Mikulski and others,
Congress has passed the National Family Caregiver Program. I
think we should expand on the successes of this program. I am
working on a bill to extend the concept of the National Family
Caregiver Program, which has worked so well for the elderly to
other populations, parents who care for chronically ill
children, families of disabled individuals, many of whom report
to me that they desperately need respite services.
We also should address the need for greater long-term care
financing. Medicaid now pays for nearly 40 percent of all long-
term care spending, but Medicaid, originally designed as a
safety net healthcare coverage system for low-income families,
was not designed as a long-term care financing system for
middle-income families.
Yet the expenses of long-term care can wipe a family out
and many middle class families find themselves quickly spending
down their savings and ending up on Medicaid for publicly
financed support. I believe that will only increase the problem
if we do not address it.
We need new financing tools that are better suited to
middle income seniors and families with modest incomes and
assets. I have talked with many New Yorkers about what we want
out of such a system. I remember talking to a 72-year-old woman
who just looked at me with just this great sort of expression
of what am I going to do? I am taking care of my 94-year-old
mother with Alzheimer's and my 52-year-old daughter just had an
automobile accident and I am now taking care of her.
These stories are not unique anymore. And what we believe
would work is a joint state-Federal program to help make long-
term care affordable. We want to have a program separate from
Medicaid with flexibility so that individuals can decide what
services to buy, whether it is paying for home health, an adult
day care program, transportation services, or nursing home, and
I look forward to working with my colleagues on a bill to
capture the features of that kind of flexible plan.
And let me just end by saying that this conversation has to
take place within the context of our current budgetary
situation. Every option that we think would be needed for
available healthcare is going to become harder to provide if we
look into the future and see that we are spending the Social
Security and Medicare surpluses to pay for operational expenses
today. That will put not only our individual families but our
entire society in a much more difficult hole to dig our way out
of.
So I hope that as we look at a broad array of the needs of
the aging and include those who are the unpaid informal
caretakers, we recognize that we all have a stake in working
out a system that will provide for the help that we need so
people can keep their loved ones at home. When necessary, there
will be social supports, but I think realistically we are not
going to be able to come up with the options that we should if
we do not have the resources to provide that help. Thank you
very much.
[The prepared statement of Senator Clinton follows:]
Prepared Statement of Senator Hillary Rodham Clinton
Thank you Senator Mikulski, Senator Breaux, Senator
Hutchinson and Senator Craig for your leadership on issues
concerning the provision of long-term care in our society.
I am so pleased to be able to testify today, and I look
forward to hearing the testimony of other to gather insights on
how, as a member of the Subcommittee on Aging, I, along with my
colleagues, can help address this urgent challenge.
Our country's piecemeal long-term care financing system is
in dire straits, and this system will be under increasing
strain in coming years as life-spans increase, and as the Baby
Boom becomes the Senior Boom.
And the reason this is of particular importance to women is
three-fold. First, women outnumber men among the aging
pouplation. Thus women suffer disproportionately from our
failure to develop a coherent long-term care financing system,
a problem that is exacerbated by the fact that older women are
also twice as likely as men to live in a nursing home, and
twice as likely to live in poverty.
Second, our the inability to finance and support long-term
needs in this country means that many must rely on informal,
unpaid caregiving, and you can guess who bears the brunt of
that burden: women. Seventy-five percent of unpaid caregivers
are women, who on average provide 50 more hours of informal
care per week than men.
Third and finally, an underlying reason why our caregiving
systems is in disarray, and why these important functions are
undervalued, under-financed, and too often uncompensated in our
society is because it was work that women performed in the
homes. We too often take for granted the contribution that
women made as caregivers. For too long, this work was
``invisible,'' no one paid for it, and it didn't show up in the
GDP.
Just because family caregiving is unpaid does not mean it
is costless. The costs include not just time, and lost economic
opportunities, but also personal strain and fatigue, and poor
health. Thes costs should be recognized and these caregivers
must be supported, through respite care and other services.
But we've made some progress, and now confront new
challenges. Women have more opportunities now than they did
then, and more responsibilities. So many women in New York have
told me how they feel there's not enough time in the day to do
everything--holding down a job, shuttling kids to soccer
practice and taking a parent to the doctor; helping a child
with homework and bathing a parent at night. Some who can
afford to purchase care do, and we need to look at how we make
high quality care available and affordable, but the many who
continue providing care informally, need our support as well.
These responsibilities should, after all these years, finally
get the visibility they deserve, rather than being taken for
granted.
As economists will tell you, when work is undervalued, it
will unfortunately be undersupplied. And we are quickly
realizing that our country is suffering not just from a budget
deficit, but what Mona Harrington has called, ``a care
deficit.'' In nursing, in child care, in the teaching
profession, and in long-term care, we see shortages and looming
crises that threaten the provision of care on which our
children, our parents, and our families all depend.
Thanks to to vigorous advocacy of leaders like Senator
Mikulski and others, Congress passed the National Family
Caregiver Program, and we must expand on the successes of this
program. I am working on a bill that would extend the concept
of the National Family Caregiver Program, which has worked so
well for the elderly, to other populations as well--parents who
care for chronically ill children, families of disabled
individuals, many of whom report to me how desperately they
need respite services.
We must also address the need for greater long-term care
financing. Medicaid now pays for nearly 40 percent of all long-
term care spending. But Medicaid, originally designed as safety
net health coverage for low-income families, not as long-term
care financing for middle-income families. Yet the expenses of
long term care can wipe a family out, and thus many middle-
class families find themselves quickly spending down all their
savings and end up on Medicaid for publicly financed support.
Now a large bulk of Medicaid spending consists of long-term,
not acute care expenditures.
We need new financing tools that are better suited to
middle-income seniors, and families with modest incomes and
assets. I have talked with many New Yorkers about what they
want out of such a system. They like the idea of a joint state-
federal program, to help make long-term care affordable. They
want to be responsible for their share of costs, but they don't
want to lose all their assets either. They like having a
program separate from Medicaid, and they also like flexibility,
so they can decide what services to buy--whether it's paying
for a home health aide, or an adult day care program, or
transportation services, or nusing home care. I am working on a
bill to capture the features of the plan that would best meet
their needs.
Again I thank the Committees for exploring the imporant
intersection of gender, long-term care, and caregiving, and I
look forward to working with both committees to explore these
and other ideas for improving long-term caregiving not just for
women, but for all Americans.
The Chairman. Thank you very much.
Senator Mikulski. Excellent.
Now we would like to turn to our colleague Senator Jean
Carnahan of Missouri, also a member of this Special Committee
on Aging. Senator Carnahan comes with extensive experience from
the State of Missouri. She has been long an advocate for
Missouri's families. As first lady, she was well-known for
being a champion of the needs of children and the needs of
parents to be able to care for their children as well as the
elderly. She has received numerous awards for her positions on
public policy including the state's Martin Luther King Special
Achievement Award, the March of Dimes and others.
But I think we have all admired the way Senator Carnahan
has just come to the Senate, picked up her responsibilities,
has put Missouri first, and made sure that the Missouri
families are thought of everyday when she is doing her job. We
look forward to hearing from you with your background.
STATEMENT OF SENATOR JEAN CARNAHAN
Senator Carnahan. Thank you, Senator. Missouri author Adele
Starbird writes about a visit she made with her mother in a
nursing home. The conversation went like this. Her mother says,
``Well, things are going well for me. I am on an entirely new
tract. I am just trying to be pleasant all the time.''
Adele responds, ``Is it a great effort?''
Her mother says, ``Did you ever try it?''
Adele: ``No, I'm going to wait until I'm your age before
trying anything so drastic.''
They both laughed, and then she grew serious. ``It is the
only thing that is left now that I can do for anybody. I can't
read or write, but I can at least be pleasant and not add to
the troubles of others. You know I think that every human being
is already carrying about as much as they can bear, and I don't
want to make it harder.''
Adele concludes: ``Pleasant. She was more than pleasant.
She was gallant.''
Well, I tell this story as a prelude to my remarks today
because today's hearing focuses on women as caregivers, but you
cannot truly understand what it means to be a caregiver until
you look at the whole picture, and the whole picture includes a
human being who is a recipient of that care. Whether that
person is your husband, or mother, or father, chances are they
do not want to be a burden. Chances are they do not want their
kids caring for them when it should be the other way around.
The first stage in the caregiving process occurs when the
aging family member moves from independence to dependence, and
for many seniors this involves leaving their home of some 30,
or 40, or even 50 years. The decision is usually precipitated
by an event that forces the change to occur. The reason can be
declining health or finances, a fall or an accident or the
death of a spouse.
While it may be clear to the family that their loved one
can no longer live on their own, it is not always clear to the
individual. I speak about this from personal experience. After
my mother passed away, it was clear to me that my father would
be better off in my home. The problem was I lived in Missouri,
and he had lived all of his life in the Washington area.
He was asthmatic, he was diabetic, and he was subject to
insulin reactions. He needed reliable care to make sure that he
ate properly and that he exercised regularly. Most of all, he
needed the love and support of his family. While I recognize
that he should move in with me, that was not at all clear to
him. In fact, it was a real test of my powers of persuasion. I
gave him all the logical reasons why he should come home with
me, and although he listened, he was not convinced.
Finally, in one desperate appeal, I took him by the hand, I
looked him in the eye, and I said, ``Dad, remember what you
hear in church on Sunday morning, that sometimes you have to
make a decision based on faith, and this is one of those times.
You need to believe that this is going to work.''
Well, there was a pause and finally he looked at me, and he
said where is my suitcase? Well, I am happy to say that my
father lived with me and my husband, and our four children for
the 7\1/2\ years before his death. I cherish the memory of
those days and I would not trade them for anything. Thank you.
[Prepared statement of Senator Jean Carnahan follows:]
Prepared Statement of Senator Jean Carnahan
Thank you, Mr. Chairman.
Missouri author Adele Starbird writes about a visit with
her mother in a nursing home. The conversation went like this:
Mother says: ``Well, things are going well for me I am on
an entirely new track. I'm just trying to be pleasant all the
time.''
Adele: ``Is it a great effort?''
Mother: ``Did you ever try it?''
Adele: ``No, I am going to wait until I'm your age before
trying anything so drastic.''
We both laughed and then she grew serious.
``It's the only thing that's left now that I can do for
anybody.
``I can't read or write, but I can at least be pleasant and
not add to the troubles of others.
``You know I think that every human being is already
carrying about as much as he can bear, and I don't want to make
it harder.''
Adele concludes: Pleasant. She was more than pleasant she
was gallant.
I tell this story as a prelude, because today's hearing
focuses on women as caregivers. But, you cannot truly
understand what it means to be that caregiver unless you look
at the whole picture. The whole picture includes a human being
who is the recipient of that care. Whether that person is your
husband, mother, or father, chances are they do not want to be
a burden. Chances are they do not want their kids caring for
them when it should be the other way around. The first stage in
the caregiving process occurs when the aging family member
moves from independence to dependence. For many seniors, this
involves leaving their home of some 30, 40, or even 50 years.
The decision is usually precipitated by an event that
forces a change to occur. The reason could be declining health
or finances, a fall or an accident, or the death of a spouse.
While it may be clear to the family that their loved one can no
longer live on their own, it is not always clear to the
individual.
I speak about this from personal experience. After my
mother passed away, it was clear to me that my father would be
better off in my home. The problem was I lived in Missouri, and
he lived in the Washington area all his life. He was asthmatic
and diabetic and subject to insulin reactions. He needed
reliable care to make sure he ate properly and exercised
regularly. Most of all, he needed the love and support of his
family.
While I recognized that he should move in with me, this was
not clear to him at all. In fact, it was a real test of my
powers of persuasion. I gave him all the logical reasons why he
should come home with me. Although he listened, he was not
convinced.
Finally, in one final desperate appeal, I took his hand and
said this to my father: ``Remember what you hear in church on
Sunday morning? That sometimes you need to make a decision
based on faith. This is one of those times. You need to believe
that this is going to work.'' There was a pause. He replied to
me ``Where's my suitcase?'' I am happy to say that my father
lived with me and my husband and our 4 children for the
remaining 7\1/2\ years of his life. I cherish the memory of
those days. I would not trade them for anything.
Thank you.
The Chairman. Thank you very much, Senator Carnahan. Thank
everybody on the panel. I mean these were just, Barbara,
terrific personal experiences, and there are millions just like
all of ours that are out there, and to add to the question now,
you know, what do we do? I mean, you know, Senator Clinton was
here 10 years ago talking about this, and we have all been
talking about this.
You know as the strongest nation in the history of the
world, we ought to find a way to help take care of elderly. I
have just one question. Senator Dodd and I were talking about
this. I sponsored and have worked on trying to make long-term
health care insurance more affordable, and it is very expensive
now. Nobody can afford it hardly.
We have legislation in with Senator Gramm, Senator
Grassley, myself and others that provides a $3,000 tax credit
for family caregivers that is phased in, also up to $5,000 tax
deductions for the purpose of long-term healthcare insurance.
Senator Dodd and I were talking, and Chris was making the
point that the president's budget calls for tax credits for
tuition for private schools, tuition tax credit, and if, as
which is clear, we have a very tight budget situation, what
about offering, as an alternative to a tuition tax credit,
offering tax credits for the purchase of long-term healthcare
insurance?
Do any of you have any thoughts about that? I mean everyone
does not have to--Susan, what do you think? Let us start there.
Senator Collins. Well, I have been a cosponsor of your bill
for a long time so I am a strong supporter of it, and I think
it would make a real difference. What I have found with a lot
of my constituents is that they have assumed that Medicare is
going to pay for long-term care, and despite the fact that that
has never been the case other than for that short period of
time after hospitalization, I think that perception is still
out there.
One of the things I like about your bill is I think it
would start to encourage all of us who do not have long-term
care insurance to start buying it now and that would help with
the affordability.
The Chairman. OK. Anybody else?
Senator Stabenow. I would just add to that. I think it is
an excellent idea. When I was in the House of Representatives,
I also sponsored similar legislation, but the common comment
that I heard on the bill that I had introduced was that it was
not a large enough amount. I think the real concern is whether
or not $3,000 will be able or $5,000 will truly be able to make
a dent as we look at the costs long-term, and I would go back
along with this because it certainly is a start, and I
certainly would support it.
But that is the most common comment that I heard regarding
the $3,000. The other piece, though, really does go back to the
whole question of prescription drugs, and I think we have to,
when we look at long-term care, also be looking at the fact
that the majority of these people are looking at very large,
hundreds of dollars a month, prescription drug costs, and that
that is very much a part of what is happening.
So I would hope as we do this, and I know, Senator Breaux,
you have been focused on that, as well as many members have.
But the tax credit makes sense, but somehow we have got to also
address this huge issue, which is more out-of-pocket costs even
than long-term care.
The Chairman. Senator Mikulski.
Senator Mikulski. Well, I just wanted to thank my
colleagues for their outstanding testimony and to say a couple
of things. I think we have issues really that we could do this
year. If we are going to talk about tax breaks, then we ought
to talk about targeted ones and I think this whole idea of
giving help to those who practice self-help is really
important.
The other is I want to remind my colleagues that again
working on a bipartisan basis, because this is the way we get
it done, we passed the long-term care insurance opportunity for
Federal employees so that Federal employees can buy long-term
care insurance. They will receive no government employer
subsidy, but because we are buying it in bulk, we will be able
to reduce those rates.
That is coming out--the legislation passed 18 months ago.
It was done with our colleagues here. Senator Grassley was a
leader, our colleague Senator Cleland, others on the Government
Affairs Committee. The point that I am making is Federal
employees will be able to buy this, Federal retirees will be
able to buy this, and then we are going to get lessons learned
on really what is the best way to fund long-term care also
through private insurance. So that is a good match.
The National Family Caregiver Support Program passed
because we were able to reauthorize the Older Americans Act
that had not been reauthorized in almost a decade. I am going
to be holding a hearing, Senator Breaux, on the National Family
Caregiver Support Program. I welcome advice and insight on an
oversight hearing. Is it working and how can it work better?
But I do think the issue of BBA givebacks continues to be a
toxic cloud that is over our nursing homes, our home
healthcare, and even our own acute care facilities, and I think
we really need to address that along with this prescription
drug benefit.
But, you know, when we really work together, each and every
one of my colleagues, both at the witness table and up on the
dias here, has made a difference, but when we work together, we
can make change, and I look forward to doing that.
The Chairman. Thank you. Now, our ranking member of the
Senate Aging Committee who has been here and working with us
very closely, Senator Craig.
STATEMENT OF SENATOR LARRY E. CRAIG
Senator Craig. Well, Mr. Chairman, chairmans, chairpersons,
thank you very much, but certainly to Senator Collins and
Senator Stabenow, let me thank you and your colleagues for your
phenomenal testimony today. I think all of us were not only
interested in hearing it, but you began to share with us the
leadership roles you have taken on some of these critical
issues.
As I for a short period of time chaired the Aging Committee
before Senator Breaux picked it up, and I began to focus more
clearly on the issues of aging, there were some figures that
stood out in my mind that spoke to me more loudly than anything
I had seen or heard. And that was that we tend to focus on
those in need of care in the aging community that are visible
to us, and those are a small, small minority of those that are
truly being cared for in the homes of Americans.
Within our culture is a marvelous commitment, and that is
to care for our own as best we can. It is not just a sense of
obligation. I do believe it is a part of us, and what we have
focused on and what you have focused on, and I heard Senator
Mikulski say it, to try to help those who help themselves.
Clearly, the cost of care today to that busy person out there,
and you are right, in most instances it is the woman that gives
the care, is not only expensive from a true dollar standpoint,
it is phenomenally expensive from a time commitment.
While I do not think it is in this country's best interest
to want to change that culture, it clearly is in this country's
best interest to help it, to improve it where we can, because
my guess is that providing all of the resources, there will
still be that great sense of obligation on the part of the
daughter or the son to want to care for his or hers as best
they can as long as they can. And, yes, there are a variety of
options out there for those who have more, but clearly as a
baseline in this country, for those who feel it necessary to
keep their aging parents or relative within their homes, there
ought to be some benefits that help them assure that care can
be given.
I think one of the most important hearings that Senator
Breaux and I held was a hearing that spoke of the need to know
and how to be able to handle and cope with an aging parent who
develops disabilities and becomes a physical burden as well as
an emotional burden, and how to train and be trained and to be
educated in how to handle this in a way that with some limited
skills can certainly improve the time spent and lessen the
pressures borne.
We can help there, though, and all of you have offered
legislation or have spoken out in leadership roles for that
purpose, and let me thank you all so very much for doing that.
That is part of what we can do. Sometimes it is the little
incentive. Sometimes it is the bigger incentives.
Senator Stabenow, I cannot disagree with you on the issue
of prescription drugs. This Senate in a bipartisan way must
lead on that issue. It is without question the driving force in
healthcare costs today, and that is probably the larger issue
that has to be dealt with and should be dealt with, as the
other issues of creating the incentives and/or the help for
those who want to keep their aging parent or relative within
their home. Thank you all very much. Susan, thank you. Mr.
Chairman, thank you.
The Chairman. Thank you, Senator Craig, for your
contribution.
Senator Craig. Let me ask unanimous consent that my opening
statement be a part of the record.
[The prepared statement of Senator Craig follows along with
prepared statements of Senator Landrieu, Senator Snowe, and
Senator Cantwell:]
Prepared Statement of Senator Larry Craig
Good morning. Thank you for attending this Joint hearing
between the Senate Special Committee on Aging and the Health,
Education, Labor and Pensions Subcommittee on Aging.
We are all aware that women play a role in addressing the
long-term care needs of their family members and loved ones. In
fact, Idaho, consistent with the national average, has almost
one quarter of its households providing care to family and
friends over the age of 50. Through this hearing, we will all
get a better understanding of the vast amount of care that is
actually provided and the large toll that it can take on women
providers.
We have the honor today of hearing testimony from many of
my female colleagues who will share their unique experiences in
caring for their own family members and friends. These
individual stories, I believe, will be representative of the
stories of thousands of women across this country.
On our second panel, we will be hearing from two of the
outstanding advocacy groups on this issue. The Older Women's
League will share with us specific financial and health
concerns that can be raised for females when assisting a family
member with their long-term service and support needs. And the
National Alliance for Caregiving will speak about the role of
women caregivers.
The title of this hearing the ``Bearing the Burden of Long-
Term Care.'' This is not meant to imply that caring for family
members and friends is something that is univiting and should
be avoided. In fact, in my experience, most individuals want to
help take care of their family members. Instead, we are holding
this hearing to shed light on the issue so we can begin to
assist the many daughters and wives who are struggling with the
daily task of caring for older family members.
Again, I would like to thank the witnesses for testifying
and I look forward to hearing your testimony.
Thank you.
------
Prepared Statement of Senator Mary Landrieu
Good Morning. I would like to thank the committee for
allowing me the opportunity to testify on women and aging, a
subject that affects all Americans today, either directly or
indirectly. I would especially like to thank my Senior Senator
John Breaux who has been an extraordinary leader in this area.
He is relentless in his pursuit of common sense solutions to
the issues involving the elderly and for this he should be
commended. I am proud to join him in his fight to address the
needs of aging women.
The statistics on this issue confirm what common sense has
told us for some time. The first of the baby boom generation
will turn 65 in just ten years and with the advances of
medicine more of them are living longer. It is expected that by
2040, there will be nearly four times as many Americans over
age 85 as there are today. While these numbers affect the
elderly population as a whole, they have a disproportionate
effect on women. On average, women outlive men by seven years.
On the other end, three quarters of all caregivers are women.
Because women live longer, they are exposed to more chronic
diseases and disabilities--heart disease and lung cancer,
osteoporosis and breast cancer. In addition to supporting
programs aimed at better research and treatment of these
diseases, Congress must do all that it can to ensure that the
programs that serve women with these diseases are as up to date
and effective as possible.
This is particularly true of Medicare. Fifty-seven percent
of Medicare's 39 million beneficiaries are women. As we know,
our Medicare system has not kept pace with medical advancements
and as a result has become outdated. Medicare should adopt the
best management, payment, clinical and competitive practices
used by the private sector to help maintain high-quality
services and keep spending growth in line with private sector
spending. In addition, strong and effective federal
administration of Medicare should be assured.
We also must do what we can to help improve education and
accessibility to long-term care insurance. Less than 1 percent
of long-term health care expenditures are paid for by
insurance. As a result, seniors are plagued by an ongoing
concern about the cost of long term care for themselves or a
loved one. These are not decisions that our parents and
grandparents should have to make alone. We must strengthen
programs that help provide greater access to insurance programs
for these purposes.
Finally, I would like to stress how important programs like
independent living services, rehabilitation services and
community based support programs are for our senior citizens.
Many elderly women have spent their lives engaged in the
service of others, whether serving as a wife for their spouse,
a mother to their families or a leader in their communities or
their professions. It is often very hard for them, because of
health needs, to become ``dependent'' on others. There are many
very successful programs that provide the assistance support
and care these women need in a setting that allows them to
continue to be independent and productive citizens.
Again, I am proud to join my colleagues in support of this
important hearing. I hope it is the first of many opportunities
forus to engage in a discussion of future solutions to what is
a very real problem.
Thank you.
------
Prepared Statement of Senator Olympia Snowe
I would like to express my appreciation to the Chairman and
Ranking Member of the Special Committee on Aging, Senators
Breaux and Craig, and to the Chair and Ranking Member of the
HELP Subcommittee on Aging, Senators Mikulski and Hutchinson,
for holding this hearing and bringing attention to the dual
challenges women face when it comes to long-term care. Women
not only have to worry about their own long-term care
arrangements, they are also the predominant caregivers for
their family members.
The fact is, long term care is a women's issue. First of
all, these issues affect women the most, as women are the
primary recipients of long-term care. Two-thirds of home care
consumers are women, and women are three-fourths of all nursing
home residents over age 65. More than 80 percent of family
caregivers for chronically ill seniors are women and the
average woman can expect to spend 17 years caring for a child
and 18 years caring for an elderly parent. Women also make up
more than 90 percent of paid long-term care workers in the U.S.
Long-term care issues have been of critical interest to me
throughout my tenure in Congress. As the Co-Chair of the
Congressional Caucus on Women's Issues for 10 years and as a
member of the House Select Committee on Aging, I focused on
issues affecting the health and economic equity of women. In
fact, Senator Wyden and I served together on the Select
Committee on Aging and have worked together on issues ranging
from long- term care, to funding for Alzheimer's disease and
osteoporosis research.
Improving the availability and quality of care for patients
with Alzheimer's disease has been a priority for me. In 1984,
my efforts resulted in a requirement for the Administration on
Aging to place a priority on grant applications from students
who specialize providing care for Alzheimer's patients. In
1987, I introduced the Alzheimer's Disease Coordination Act,
which was included in the Older American Amendments of 1987.
Another concerning of mine has been the quality of care
that long-term care patients receive, and in 1987, I introduced
the Long-Term Care Patient's Rights Act, which was including in
the Budget Reconciliation Act. As a result, states are now
required to inform people of their rights when they become a
patient in long-term care facility. And, my good friend Senator
Mikulski and I both worked on the spousal impoverishment issue
in 1987 one of the very few provisions of the Medicare
Catastrophic Coverage Act that Congress did not repeal in 1989.
More recently, my focus has turned to providing tax credits
to family caregivers to reduce the financial burden of caring
for a loved one at home, and providing additional Federal
support for respite care services. As a member of the House in
1986, I introduced the first resolution to designate National
Family Caregivers Week with Senator Glenn, who was a member of
the Senate Aging Committee, in an effort to bring attention to
the needs of our family caregivers.
My interest in increased funding and emphasis on
Alzheimer's disease resulting in the Alzheimer's Disease and
Related Dementias Research Amendments, which was signed into
law in the 102d Congress. I was also successful in expanding
the Older Americans Act to provide supportive services for
family caregivers. These services, which caregivers can now
receive today, include training, access to support groups,
respite care and information and referral for other related
services. Through my efforts the Older Americans Act also now
provides improved services to protect the rights of older
individuals who are in a guardianship.
To make long-term care policies more affordable, I have
worked to improve the tax deductibility of long-term care
insurance policies and introduced legislation to accomplish
make this a reality. In 1996, as part of the Health Insurance
Portability and Accountability Act, Congress expanded the tax
treatment of long-term care policies so that they are treated
the same as other health care insurance coverage expenses. I
was also successful in ensuring that long-term care policies
that offer per diem benefits, which offer a set dollar amount
each day for services, are treated the same as policies that
provide reimbursement for specific long-term care services.
Today, we need to refocus and reinvigorate our efforts on
long-term care. The challenges will only grow more difficult,
and it has been nearly 10 years since Congress took a
comprehensive look at long-term care during the health care
reform debate. When Americans were beginning their love affair
with the automobile in 1900, there were three million people in
the U.S. over age 65 and the average life expectancy was 47.
Today, there are 35 million people over age 65 and the average
life expectancy is 79 for women and 74 for men. Between now and
2050, the number of people over age 65 will more than double to
82 million seniors--1 in 5 Americans--56 percent of whom will
be women.
And, the number of people afflicted with Alzheimer's
disease now will almost double by 2020 to seven million--with
70 percent receiving care at home. The number of patient's with
Alzheimer's disease will double again to 14 million, reaching
epidemic proportions, by the year 2050 unless scientists
discover preventive therapy or a cure. We are in a race against
time, a race against the aging of the Baby Boomers and the
diseases of aging, and a race to find solutions to a pending
national crisis in long-term care.
We used to think about the retirement of the Baby Boomers
as if it were a far off event like the arrival of the 21st
century. Now, here we are, with only ten more years before the
first Baby Boomers retire, which is the leading edge of a large
storm front of Baby Boomers who will follow them into
retirement. This issue won't just go away, and there is no
simple one-size- fits-all solution.
What must drive our effort is the reality that while
Congress debates the issue, thousands of family caregivers have
stepped forward to take care of their loved ones. These family
caregivers mostly women are caring for chronically ill family
members or those with disabilities on a 24/7 basis because they
want them to be able to stay at home in a loving and caring
environment. More than 26 percent of all adults in the U.S.
have taken care of a loved one or close friend during the last
year. With Alzheimer's disease alone, there are more than 5
million families caring for their loved ones three times more
than in 1987 and, almost 4 in 10 have been providing that care
for more than 5 years. The average caregiver provides care for
8 years, and one-third provide care for 10 years or more.
Family caregivers put aside vacations and hobbies, have less
time to spend with other families members, pass up job
promotions, incur substantial out-of-pocket expenses, and many
suffer from physical and mental health problems as a result of
their caregiving. And, at some point, the caregiver deserves a
break, a respite, from their compassionate commitment.
When Senator John Glenn and I introduced the first
legislation on Family Caregivers in 1986, we did so in order to
bring attention to the important work they do and the crucial
role they play in the nation's long-term care system. And we
have made some progress. Two years ago, Congress established
the National Family Caregiver Support Program as part of the
Older Americans Act reauthorization. States can use these funds
to provide respite care in the home, or in an adult day care
center, or even over a weekend in a nursing home or assisted
living facility.
But we need to do more. And one key area where we can help
right now is to change the tax code to provide assistance with
respite care costs. Family caregivers not only take care of
their loved ones, but in fact they save us a lot of money. If
federal, state, and local governments were suddenly faced with
providing this care through paid home care staff, they would
have to find an additional $196 billion each year in their
budgets. One key area where we can help right now is to change
the tax code to provide assistance with respite care costs. We
should take an important step toward lessening the financial
and emotional cost of Alzheimer's disease by providing relief
to patients and their families. Legislation that I have
introduced would permit families to deduct the cost of home
care and adult day and respite care from their Federal income
taxes, if care is provided to a dependent suffering from
Alzheimer's disease.
We also should expand the dependent care tax credit to
apply to respite care costs. I have introduced a bill to
accomplish this and in so doing also restore the original
intent of the credit to provide the largest possible benefit
for low-income individuals by expanding the credit and making
it refundable. My legislation would increase the percentage of
work-related dependent care costs that qualify for the tax
credit from 30 percent to 50 percent for families earning
$15,000 or less, and phase the credit down to a 20 percent tax
credit for those earning $45,000 or more annually. The
dependent care tax credit was created in 1976 to help low- and
moderate-income families alleviate the burden of employment-
related dependent care. We need to update the credit so it
reflects today's world.
Respite care, while important, is just the tip of the long-
term care iceberg. In order to address the serious and growing
long term care challenges, we owe it to current and future
generations of women and their families to make long-term care
our priority.
We should take steps to ensure the long-term care that
seniors receive today is of the highest quality. We need to
have effective regulatory and enforcement procedures and more
focused attention on those providers with a history of
compliance problems and poor quality care. We need to examine
Medicaid funding for long term care services, and we need to
permanently eliminate the 15 percent cut in home health care
payments.
Next, we need to look at longer-term solutions that will
benefit future generations of retirees. We should provide tax
incentives for people of all ages, but especially younger
people, to purchase long term care insurance. Then, we need to
support a national campaign to get the message out that people
need to consider purchasing long-term care insurance and invest
in the security of knowing you will be cared for when you need
long term care.
Finally, I believe we need to take a comprehensive look at
long-term care issues because a piecemeal approach, by
definition, will leave important issues unaddressed.
This should be our nation's long-term care agenda, and I
would like to thank you again for holding this hearing and
calling attention to these important issues and how they affect
women. These issues will not go away, but will only become more
difficult to address as time goes on. I sincerely hope this
hearing can generate a new spirit of interest and cooperation
encouraging us to work together to move these important issues
forward. Thank you.
------
Prepared Statement of Senator Maria Cantwell
Thank you, Senator Mikulski and Senator Breaux. I
appreciate the opportunity to testify at today's hearing, and I
want to express my gratitude for the leadership you both have
shown on this topic over the years.
I believe that Congress has a responsibility to ensure that
families have adequate resources to care for their loved ones.
I know that I am extremely lucky--I have the honor of
representing the people of the State of Washington here in the
Senate, and my mother is healthy. But not everyone is as
blessed as I am. Women are major stakeholders in the debate on
long-term care policy because we are over-represented as both
caregivers and recipients of care.
As the Committee knows, with only about 1.6 million
individuals residing in nursing homes, most people who need
long-term care receive it in home and community-based settings.
In fact, the American health care system relies heavily on
informal caregiving--to the tune of $200 billion in
uncompensated care annually. And there is no doubt that as the
baby-boomers retire in the coming decades, as well as continue
to tend to their own parents' needs, long-term care services
will be in much greater demand.
Issues surrounding long-term care--availability, quality,
cost, and other public policies--have a disproportionate impact
on women. And worries about long-term care do not begin when
illness or disability strikes women personally. Because women
make up nearly three-quarters of the informal, unpaid
caregivers in this country, the worries begin when middle-aged
women start to provide care for their elder parents, parents-
in-law, other family members, or friends.
Most informal caregivers are in their mid-forties to mid-
fifties, work full time, and may also be primary caregivers
for their children or grandchildren. In order to accommodate
the extra hours and commitment required of them, informal
caregivers often must curtail their own professional
advancement, reducing both their current earnings as well as
future retirement benefits. And while women are most likely to
need respite from our caregiving duties, we are least likely to
receive it.
Many factors exacerbate the problems facing women when we
decide how to address our long-term care needs. We live an
average of seven years longer than men. We are more likely to
live with multiple chronic health problems requiring long-term
care services such as arthritis, hypertension, or osteoporosis.
And we are also more likely to face poverty than men during
retirement, making purchase of private long-term care services
difficult if not impossible.
I believe both state and federal policy makers have a duty
to ensure the long-term care security of our constituents. I
wholly applaud the work done in the last few years by Senators
Mikulski and Breaux to establish the National Family Caregiver
Program. And as today's hearing demonstrates, this will not be
the end of the debate. We need to continue to focus on how to
improve access, how to ensure quality, and especially how to
lower both private and public costs of these vital services.
Thank you, Senators Mikulski and Breaux for inviting me to
testify at this hearing. I am confident that together we will
be able to ensure that women and our families have adequate
resources to care for our loved ones.
The Chairman. Without objection, so ordered.
We have another panel that we would like to welcome up at
this time: Dr. Laura Young, who is Executive Director of the
Older Women's League, known as OWL, which is a wonderful
acronym, which is the only national grassroots membership
organization to focus solely on issues that are unique to women
as they age.
It is now in its 22nd year. The group has established
itself as a reputable source for information on caregiving and
long-term care. Dr. Young is representing OWL as its Executive
Director. Before that, she was a Senior Vice President for the
National Mental Health Association. And I look forward to Dr.
Young's testimony.
Senator Mikulski, you want to do a joint introduction
because you have to leave?
Senator Mikulski. Yes. I am very happy, first of all, to
welcome Dr. Young, and also excited that Gail Gibson Hunt is
going to testify. She is the Executive Director of the National
Alliance for Caregiving. It is located in Bethesda, Maryland
along with the home of the National Institutes of Health. The
Alliance plays a very important role because it supports family
caregivers through research, outreach and public awareness. It
does it by bringing together organizations like AARP, the
National Council on the Aging, even the Department of VA, to
get everybody in the same room to really talk about the same
issues. That in and of itself is to be commended.
Ms. Hunt herself is an expert on aging and elder care. She
has worked tirelessly to improve the quality and availability
of those services, and before taking her position with the
National Alliance, she was the president of a management
consulting firm specializing in aging issues.
She oversaw the first National Caregivers Survey in 10
years and three studies on the impact of caregiving in the
workplace. This is exactly what we need to know, and again I
would like to say to both of you, we will be holding an
oversight hearing on the National Family Caregiver Support
Program later on in the spring, and we really want to have your
participation.
Mr. Chairman.
The Chairman. Dr. Young, we have you going first.
STATEMENT OF DR. LAURA YOUNG, EXECUTIVE DIRECTOR, OLDER WOMEN'S
LEAGUE, WASHINGTON, DC
Dr. Young. Thank you. Chairman Breaux, Chairwoman Mikulski,
and distinguished members of the committee, I appreciate your
invitation to testify today on the critical issue of women,
caregiving, and long-term care reform.
The Older Women's League, or OWL, as we are known, commends
you for addressing the concerns of America's caregivers and
especially for your recognition of women, who bear the burden
of caregiving. As the executive director of OWL, the only
national grassroots membership organization dedicated
exclusively to the unique concerns of women as they age, I can
assure you that our members have a very personal stake in the
issue of caregiving, as caregivers and care recipients.
Allow me to paint you a picture of the typical informal
caregiver. She is a married woman in her mid-40's to mid-50's,
employed full time, spending an average of 18 hours per week on
caregiving. In addition to juggling her career with caring for
a parent, partner or spouse, she may well be primary caregiver
for her children and increasingly her grandchildren as well.
While society owes a huge debt to these women, here is the
reward we offer. Caregivers risk their own financial security,
face emotional and physical health challenges, and have few
affordable accessible services to turn to for support.
The financial picture for caregivers is not pretty. About
half of caregivers in the paid labor force report their career
is affected by caregiving: arriving late for work, leaving work
early, or taking unscheduled leave days. Often the consequence
is a move to part-time or more flexible jobs, and about one in
five caregivers end up leaving the workforce entirely.
A cut in work hours equals a cut in wages, a tradeoff women
can ill afford since we still make only 73 cents for every
dollar a man earns. Midlife is often a woman's peak earning
period, yet it is also the time her wage earning is interrupted
by caregiving. It is estimated that caregivers lose an average
of half a million dollars in lifetime wages. You cannot save
what you do not earn.
Social Security benefits are also affected by caregiving.
Caregivers suffer an average loss of $2,100 annually, and given
that the average older woman in America today has little over
$15,000 in annual income, these lost Social Security benefits
have a significant impact.
It is not just wages that are affected. Part-time or more
flexible jobs are less likely to offer benefits such as health
insurance or pension coverage, and while the gap has been
shrinking, women still have not caught up to men in rates of
pension coverage, and caregiving with its interruption of work
patterns is one of the culprits.
Mental and physical challenges are also part and parcel of
caregiving. A substantial number of adults who provide care to
a parent, age 65 or older, report symptoms of depression. This
can impair a caregiver's ability to provide care and endanger
her own health as well. The incidence of depression is higher
among informal caregivers and women are diagnosed with
depression twice as often as men.
There is physical impact as well, and studies show that two
out of three informal caregivers are in ill health. Routine
caregiver tasks can cause acute and chronic physical strain,
particularly when caregivers lack appropriate training.
As a result of all of this, women are more likely than men
to face poverty in retirement: 12 percent vs. 7 percent. As the
number of women who provide informal caregiving increases, the
number of poor older women will inevitably increase.
The sad truth is that America assumes women will continue
as informal caregivers. As long as words like ``love'' and
``commitment,'' ``duty'' and ``family'' are used in relation to
caregiving, society will always see it as women's work and
devalue it. My written testimony lays out nine policy
recommendations to support caregivers, protect their health and
retirement security, and I hope you will consider such changes.
But we also must confront difficult and pervasive social
norms that expect women to care for others more than they care
for themselves. It should not be lost on us that today's
caregivers end up as tomorrow's care recipients. Women make up
more than two-thirds of nursing home residents, and the typical
nursing home resident is a 75-year-old woman.
Ninety percent of women ages 65 and over report one or more
chronic conditions, and 75 percent have two or more. Women's
increased longevity means that we make up 60 percent of adults
over 65, and by age 85, there are more than twice as many women
in America as men.
So what does this mean for the long-term care debate?
Simply, the current long-term care structure needs a major
overhaul as it does not work for women. Women's lower lifetime
earnings make most long-term care insurance policies
unaffordable, and since Medicaid only assists the poorest of
seniors, many low income women cannot seek assistance until
they spend down virtually all their savings and assets. With
the average nursing home costs running about $30,000 a year,
this solution does not work for most women.
OWL is also gravely concerned about the caregivers inside
the long-term care industry: home health aides, nursing home
aides, and other paraprofessionals who provide the bulk of day-
to-day care. This workforce is 93 percent female and paid very
little. Although we ask these workers to care for our frail
elders, paid caregivers face poverty level wages, inadequate
training and little opportunity for advancement with sometimes
dangerous working conditions.
There is extremely high turnover rate in these jobs that
further threatens the delivery of quality care. Thus, the cycle
continues with our formal caregivers unable to provide the best
care to our elders and ill-prepared to afford their own long-
term care needs later in life.
OWL believes we need to build a new paradigm for long-term
care policy that values caregiving and caregivers, without
requiring women to sacrifice their economic security and
retirement to achieve it. The picture painted of women
caregivers and long-term care appears very bleak. It is now
time to paint a new picture. Thank you for picking up the
brush.
The Chairman. Thank you, Dr. Young. Appreciate your
testimony.
[The prepared statement of Dr. Young follows:]
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STATEMENT OF GAIL GIBSON HUNT, EXECUTIVE DIRECTOR, NATIONAL
ALLIANCE FOR CAREGIVING, BETHESDA, MD
Ms. Hunt. Thank you for the opportunity to speak this
morning on the role of women as participants in our nation's
long-term care system. As we have heard over and over this
morning, long-term care has a female face. Because we live
longer, more of us will now and in the future will require
long-term care at home, in community settings and in nursing
homes.
We know who provides that care. Data from the
Paraprofessional Healthcare Institute estimate that 86 percent
of the paid caregivers are women. Those are the ones doing the
hands-on care for the sick and frail in home health agencies
and personal care workers in nursing homes and assisted living.
But I am here to talk as Director of the National Alliance
for Caregiving in terms of long-term care. One thing that has
not been said today, and we have heard a lot of statistics
about family caregiving, is the value of the unpaid family care
in this country is estimated by the United Hospital Fund at
nearly $200 billion a year, and that is more than the cost of
nursing home and home healthcare combined. So keep that in
mind.
Make no mistake about it. Family caregivers are the unpaid
extension of our country's healthcare system. Without them, the
long-term care system would collapse, and we have heard a lot
about who the family caregiver is, the 46-year-old baby boomer
woman. One thing to keep in mind, though, when we are talking
about caregiving: approximately a quarter of U.S. households
contain someone, male or female, caring for an elderly relative
or friend, and nearly three-quarters of them are our mothers,
sisters, daughters or nieces.
We know that a third are caring for more than one person,
and more than 40 percent have children at home under 18. We
also know that half of these women are really providing at
least one activity of daily living. That is really intensive
hands-on personal care: bathing, dressing, feeding, toileting.
Nearly a third of them are providing personal care for three or
more of these activities.
We have heard about the impact on their lives, but first of
all, I think it is important--nobody has really mentioned
this--we need to remember that most people view family
caregiving positively. As difficult and frustrating and
isolating as it is, when asked for a single word that defines
caregiving for them, most caregivers will pick a positive term,
``loving,'' ``rewarding,'' or ``helpful.''
The biggest reward is seeing that their loved one is
getting good care. Nonetheless, as we have heard, caregiving
often carries emotional, physical and financial burdens. One
financial burden that has not been mentioned is the fact that
on average caregivers spend $171 a month on out-of-pocket
expenses or the equivalent of an IRA each year for many women
who may not have a pension in the workplace.
We have heard about the impact on caregiving in work as
well. So what can be done to help these women who are holding
up the long-term care system with their unpaid labor? First of
all, they need more recognition that their efforts are
appreciated and meaningful. The National Family Caregiver
Support Program was a step in that direction, but it needs to
be increased substantially and given more visibility.
Another form of recognition would be a White House
Conference on Caregiving, a national public awareness campaign.
Second, caregivers need financial support, such as Senate
627 begins to offer in the form of a tax credit, the $3,000 tax
credit Senator Breaux mentioned.
Third, they need information about resources, their loved
one's illness, treatment, prognosis, and services for
themselves as well as the family member. And training in the
hands-on skills necessary to do the personal care they are
doing.
Last, they need services whether in the form of respite,
counseling, or support groups or in the form of assistance from
paid or volunteer caregivers to help with those many personal
care tasks.
This past July, the Alliance and the Partnership for Caring
convened a Caregiver Empowerment Summit to develop a National
Caregiving Agenda for empowering family caregivers. We had a
three-point action plan: to strengthen the national coalition
of groups engaged in addressing the problems of caregivers;
develop a national public awareness campaign; and develop a
grassroots campaign to promote activism among caregivers.
Each congressional office received a copy of the agenda,
and we encourage you to take a look at it and join the Alliance
and the other Summit participants in implementing these steps.
In closing, the Chinese have a saying that ``women hold up
half the sky.'' In the case of long-term care, women hold up
most of the sky, and we need to continue to support them doing
so. Thank you.
[The prepared statement of Ms. Hunt follows:]
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The Chairman. Thank you, Ms. Hunt and Dr. Young. Thank you
very much. I think that you have made some good points, and as
Senator Mikulski and I were talking, you really have sort of a
smorgasbord of ideas about what we may be able to do, Dr.
Young, that you listed, and you know, the thing that bothers me
is we do not really have anything comprehensive. We got a lot
of little ideas here, a little bit there, a little bit here, a
little bit there. Hopefully, if you do a lot of little bits,
you may add up to something good.
But I am really concerned that we do not really seem to
have a comprehensive policy as a nation, again a nation that is
as strong as the United States, which has such a huge growing
senior population. I mean our obligation, again, is not to just
get people to live longer, but also to live better lives,
particularly in the last part of their lives, and we do not
really have long-term health insurance available. It is
extremely expensive. It is not covered by Medicare.
We have really bastardized Medicaid and humiliated people
to having to become poor in order to qualify for some type of
nursing home assistance, and that really is not enough. And I
am just wondering, you know, the Federal Employees Health
Benefit Plan, our Federal insurance, this year for the first
time will offer long-term healthcare insurance.
I am a big believer in trying to help provide affordable
insurance to the general population so that we at a young age
can start buying health insurance that covers long-term care
for when we need it. The bill that we have, as you are aware,
has a up to $5,000 deduction, and it obviously has to be made
refundable for lower income people to help them buy long-term
care insurance.
It seems to me if we can get a large number of people in
that pool buying insurance, helping those who do not have
enough money to buy it themselves, that that would go a long
ways to saying that we as a nation have some type of a
comprehensive program to provide long-term care.
Can either of you just comment on that concept?
Dr. Young. I think it is a good concept. I think it is a
great beginning, and I think that you are right, there needs to
be a comprehensive overhaul that will effect all different
kinds of opportunities and programs and education and benefits
for people who are primary caregivers.
That certainly is a great first step, but it is just a
first step. It really is not going to address millions and
millions of poor women who are involved in caregiving today,
who even with that benefit are not going to be able to afford
the insurance. The impact of having----
The Chairman. Well, they could if it is a refundable tax
credit.
Dr. Young. It is if it is refundable, but again we have to
look at the wage basis that they are starting with and what the
eventual cost of the insurance will be. Also, the devil will be
in the details of what the insurance will really cover and what
it will provide and for how long and what the benefits are. As
we well know, there is a kind of social insurance covenant with
our country around what Medicare and Medicaid would provide,
and we have seen cutbacks and changes and shifts in those
programs over the lifetime of what they will cover and what
they will reimburse.
So I think that it is a great first step; it addresses the
need. It brings it to the forefront in a very important way,
but it is just a first step.
The Chairman. Well, I really look forward--and I recognize
Senator Mikulski--but as a member of the Finance Committee, and
I think that the tax code offers a great deal of potential to
try and use the Federal Government in a direct manner of trying
to provide a program that is comprehensive and that does
provide long-term care coverage in a way that would allow
everyone to have access to it. And we are going to be working
on that hopefully this year.
Senator Mikulski.
Senator Mikulski. Senator Breaux, I think you are really
right, and that is why I am so supportive of it and why I
worked for the Federal employee benefit. First of all, people
need to be able to afford the insurance. Second, we have to
make sure the insurance is not a new racket or scheme, because
we know where there is need, there is greed, and where there is
greed, there are scams and scum.
This is why part of the Federal employee package has a lot
of education in terms of even the checklist on what a good
solid policy is. When I bought my own long-term care policy, I
turned to the web site of the National Association of Insurance
Commissioners that had a basic checklist to go down to see the
questions you needed to ask yourself as you went forward.
This is all important. I think would be a very important
tool to the middle class, knowing that the poor have other
demands on them, but it would be a very important tool in the
middle class.
I worry about the financing of long-term care, but I also
worry about the human capital, and this takes me to my next
point. There are really two groups of caregivers. One is the
informal caregiving at home, and I was really stunned by
hearing that if we factored out, I guess, at the minimum wage,
there is $200 billion of family caregiving going on that no
government, no insurance company, nobody could take care of. So
we need to strengthen them, and I think you have given
excellent testimony.
Then I want to go back to quote ``paid caregivers,'' and I
wonder what your thoughts are on this, because this is a human
capital crisis, as well as a financing crisis. The human
capital is the family and how we can strengthen the family, and
I think you have given excellent recommendations, but could we
talk about the workforce? Because when we look at the people
who work at nursing homes, they are often underpaid,
undertrained, in many instances particularly either nursing
homes or in the invisible aspects at home, home health, there
are people with language challenges I wonder what your thoughts
on that are, which is how we can strengthen the human capital
over in terms of the paid caregiving, because I think it is
really a stretch here.
Am I right about this, and could you share your thoughts
and insights on this? Because I think those of us involved in
job training and workforce oversight would appreciate your
input. I mean, you know, I spoke with such affection of my dad,
but when we had to turn to a nursing home, it was the nurses
and the nurse aides that were turning someone who was kind of a
beefy grocer who looked like a lacrosse player. I mean really
that was a big challenge.
Dr. Young. I would speak to it actually by telling you
about my own story. I lost my mother last year to progressive
dementia and Alzheimer's disease, and she also experienced
psychotic depression as a consequence of that, and had lived a
number of years in assisted living, and even though finances in
her case was not the overriding issue, when she required a
level of care that could only be provided in a nursing home,
the problem was because of the level of training, the poor
wages, the lack of support, the number of staff that were
available, the quality of care that she received was really
abysmal.
And it was not because the people there did not want to
give good quality care. I met wonderful, caring, trained people
who really cared about our frail elderly and wanted to be
supportive, but the lack of resources, the way we finance and
support the wages that go, and the kind of reimbursement
schedule that goes, to nursing homes so that they can actually
provide the level of care necessary, so that people are well
taken care of in a kind of a preventative way in terms of
caring for them physically as well as mentally and emotionally,
I think really needs to be challenged.
I think that you would like recommendations. We will get
back to you with a set of them.
Ms. Hunt. I wanted to follow up on the long-term care
insurance question that you raised, Senator Breaux. I am a
supporter of long-term care insurance, and I think this program
that they are offering to Federal employees and retirees in the
military is really a good step in the direction, but you have
to remember that that is not going to take care of today's
caregiver.
We are the ones who are going to have to be concerned about
Baby Boomers' long-term care in the future. For today's
caregiver, the person they are caring for is not going to be
eligible for long-term care insurance. So we need to be sure
that we also keep in mind supports like the National Family
Caregiver Support Program, lifespan respite programs, for
example, and other kinds of programs, the tax credit, the
$3,000 tax credit for today's caregiver.
Senator Mikulski. What about the human capital issue?
Ms. Hunt. Well, I think that there is no question that this
is a concern. There have been briefings by the Paraprofessional
Healthcare Institute, which is the group particularly focused
on the aides, the people doing home health, and the fact that
it is not just an issue of not having enough training and
having language problems, as you mentioned, and not having a
living wage, and not having a career ladder, but there are not
enough of them. That is just an issue by itself, too.
Senator Mikulski. Why would there be?
Ms. Hunt. Why would there be when you can work at
McDonald's and in some cases you can get benefits, and you
cannot get them in these other circumstances, but I guess what
I am saying is there are groups which are beginning to address
the concerns of the paid caregiving, particularly the
paraprofessional, workforce.
There is a bill that is looking at nursing, at the nursing
shortage, but that does not really deal with the
paraprofessional.
Senator Mikulski. No, that is my bill.
Ms. Hunt. The person that you are talking about?
Senator Mikulski. That is my bill with Tim Hutchinson and
Ted Kennedy, John Kerry, Jim Jeffords and some others. I do not
want to go into this in great detail at this hearing, but
again, turning to experiences in Maryland, what we see, again,
at the nursing home, there are the nurses, then there are the
paraprofessionals that support the nurses, and some medical
supervision on a daily and a weekly basis.
I am looking at a continuum of opportunity. My bill also
focuses on the community college--for many women who would like
to enter the career or men who want to enter the career of
nursing, the whole idea of going to Johns Hopkins or University
of Maryland is more of a reach than they could do with their
family lives, but going to the community college, particularly
where life experience is always factored in, can move along.
You see in my mind the community college and the 2-year nursing
degree offers an opportunity for long-term care.
The second thing is I would hope that if we look at the
experiences of trained paraprofessionals, really trained,
certificate programs, then those certificate programs could be
parlayed into the community college, so if they took the 6-week
program on ``x'' or ``y'' that constitutes an allied health
program, that certificate could count toward courses in
nursing--and we all know the innovation of this.
So you see where there would be the career ladder, they
could move up, move up in income, where they begin to have new
opportunities we have already attracted people. We just do not
pay them, and there are these other issues. So I know that my
time is up.
If I could, Senator Breaux, one of the other questions I
worry about is fragmented services. Even if you have got the
money, where in the dickens do you begin, where do you go, who
do you know that is reliable? I mean really the whole idea of
knowing about day care, geriatric evaluation. Now we hope that
this has been addressed in the National Family Caregiver
Support Program, and I must also acknowledge the role that
Senator Jeffords and Senator Mike DeWine played. We could not
have done the authorization without Senator DeWine and Senator
Jeffords.
Senator Gregg had particular issues, and that is why we had
a lot of wrinkles, but we worked again in a bipartisan way.
What do you think about it? Has the Caregivers Program
addressed the information issue or is it uneven, and the
fragmented nature of the system?
Ms. Hunt. Well, I think that is a lot to lay at the feet of
$125 million, but, yes, I think that is a beginning. I think
the National Family Caregiver Support Program, which as you
know sends the money down through the state units and then to
the area agencies, has been helpful, particularly because the
area agency is given the responsibility of being the sort of
one-stop shopping place that caregivers and family members, the
older person, is supposed to go to get information about what
is available in the community.
That needs to be strengthened even more, no question about
it, because you still hear about people who say I had no idea
there was adult day care for my parent with Alzheimer's or I
had no idea what range of services were available. So
information and finding integrated information or places where
you can go and you can get information is really still a need,
but it is getting better.
One thing that I think has been helpful, in a small way, is
the Benefits Checkup, which is an Internet resource of the
National Council on Aging. You can enter information about the
older person's income, and where they live, and it tells you
the public benefits that the person is eligible for, and I
think that that is something that people would have had to seek
out before in several places, and now they are able to go to
this.
It is an Internet resource so you have to be a little bit
Internet savvy to use it. But I think that it is helpful, and I
think that there are other kinds of programs like that that are
working to provide more integrated information for family
caregivers.
Dr. Young. I am hoping that in conjunction with that
program that there, in fact, is the kind of outreach and
education to people in communities that really let them know
what is available to them. I think for a lot of people who are
involved, the kind of caregivers, the informal caregivers we
have been talking about, their lives are so challenged on a
daily basis about all of the activities and things that they
have to pull together and collaborate on and get done and
accomplish in their lives, that their ability to do that kind
of research takes them into yet another task, another
challenge, and I would hope to see that ultimately we could
even do a kind of public education outreach that is similar
with what has been done with the CHIP program that would allow
States to really speak to communities about what is available
to them, how to get information in the same kind of aggressive
way that we educate people about what is available in terms of
insuring their children.
Senator Mikulski. I have no other questions.
The Chairman. Thank you very much, Senator Mikulski. I want
to thank Senator Mikulski for joining with our committee and
putting our two committees together on this issue. I think that
as many people in Congress who get interested in this, the
better chance we have of coming up with a comprehensive long-
term health plan for the seniors and the caregivers in this
country.
We will pay very dearly for not having a comprehensive
long-term plan in place as the baby boomer generation begins to
retire. It is already a huge problem. When we add 77 million
more seniors to the program with life expectancy of women being
around 80 years of age and growing, the fastest generation
growing in terms of growth in population are people 85 years of
age and older, and we all know that, and so this presents a
huge problem and huge challenges to this country, but I am
certainly of the opinion that we have the wherewithal, the
determination to move toward solving it.
We are going to work very hard in this Congress to come up
with something that begins that process. I believe very
strongly in the concept of health insurance, long-term care,
with the Federal Government helping to pay for a portion of it,
or maybe all of it for people who do not have the wherewithal
to do it themselves.
We heard some great stories from our colleagues, our Senate
colleagues, about their personal experiences, which, you know,
duplicate millions and millions of other Americans who do this
everyday, and we thank them and thank you, Dr. Young and Ms.
Hunt, for your testimony as well.
And we also have a written statement from Kathleen Kelly,
who is Executive Director of the Family Caregiver Alliance,
which will be made a part of the record.
With that, we will have this committee adjourned.
Senator Mikulski. Edifying and challenging. Thank you.
[Whereupon, at 11:10 a.m., the committee was adjourned.]
A P P E N D I X
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