[Senate Hearing 107-291]
[From the U.S. Government Printing 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
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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

                              ----------                              
                                                                   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.]
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