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[Senate Hearing 107-80]
[From the U.S. Government Publishing Office]

                                                         S. Hrg. 107-80

                       FAMILY CAREGIVING AND THE
                          OLDER AMERICAN ACT:
                        CARING FOR THE CAREGIVER

=======================================================================

                                HEARING

                               before the

                       SPECIAL COMMITTEE ON AGING
                          UNITED STATES SENATE

                      ONE HUNDRED SEVENTH CONGRESS

                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                              MAY 17, 2001

                               __________

                            Serial No. 107-5

         Printed for the use of the Special Committee on Aging

                    U.S. GOVERNMENT PRINTING OFFICE
73-599 PS                   WASHINGTON : 2001
_______________________________________________________________________
            For sale by the U.S. Government Printing Office
 Superintendent of Documents, Congressional Sales Office, Washington, 
                               DC. 20402

                       SPECIAL COMMITTEE ON AGING

                      LARRY CRAIG, Idaho, Chairman
JAMES M. JEFFORDS, Vermont           JOHN B. BREAUX, Louisiana
CONRAD BURNS, Montana                HARRY REID, Nevada
RICHARD SHELBY, Alabama              HERB KOHL, Wisconsin
RICK SANTORUM, Pennsylvania          RUSSELL D. FEINGOLD, Wisconsin
SUSAN COLLINS, Maine                 RON WYDEN, Oregon
MIKE ENZI, Wyoming                   EVAN BAYH, Indiana
TIM HUTCHINSON, Arkansas             BLANCHE L. LINCOLN, Arkansas
PETER G. FITZGERALD, Illinois        THOMAS R. CARPER, Delaware
JOHN ENSIGN, Nevada                  DEBBIE STABENOW, Michigan
                                     JEAN CARNAHAN, Missouri
                      Lupe Wissel, Staff Director
                Michelle Easton, Minority Staff Director

                                  (ii)

  

                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening statement of Senator Larry Craig.........................     1
Statement of Senator John Breaux.................................     3
Statement of Senator John Ensign.................................     4
Prepared statement of Senator Jean Carnahan......................    95
Prepared statement of Senator Evan Bayh..........................    96

                                Panel I

Norman L. Thompson, Acting Principal Deputy Assistant Secretary 
  for Aging, Administration on Aging, U.S. Department of Health 
  and Human Services, Washington, DC.............................     5

                                Panel II

Helen Hunter, Wife of the late Jim ``Catfish'' Hunter, member of 
  the board of directors of the Jim ``Catfish'' Hunter ALS 
  Foundation, Hartford, NC.......................................    19
Sandy Tatom, a family caregiver, Boise, ID; accompanied by Dean 
  Tatom..........................................................    23

                               Panel III

Suzanne Mintz, president, National Family Caregivers Association, 
  Kensington, MD.................................................    31
Deborah Briceland-Betts, executive director, Older Women's 
  League, Washington, DC.........................................    38
Kristin Duke, executive director, Cenla Area Agency on Aging, 
  Inc., Alexandria, LA...........................................    81

                                APPENDIX

National Association of State Units on Aging.....................    99
Generations United...............................................   103

                                 (iii)

  

 
FAMILY CAREGIVING AND THE OLDER AMERICANS ACT: CARING FOR THE CAREGIVER

                              ----------                              

                         THURSDAY, MAY 17, 2001

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 9:50 a.m., in 
room SD-562, Dirksen Senate Office Building, Hon. Larry E. 
Craig, (chairman of the committee) presiding.
    Present: Senators Craig, Ensign, Breaux, and Carnahan.

     OPENING STATEMENT OF SENATOR LARRY E. CRAIG, CHAIRMAN

    The Chairman. Good morning, everyone. Let me apologize for 
the committee running a bit late. We had votes scheduled 
starting at nine and it took us a little longer than normal. 
Thank you for your patience. We also want to thank you for 
attending this Senate Special Committee on Aging's hearing on 
National Family Caregiver Support Program.
    Last year Congress passed legislation authorizing the Older 
Americans' Act. I was an original cosponsor of legislation 
which updated and amended the Older Americans' Act, and I was 
extremely gratified after a good number of years of effort that 
we were finally able to enact and reauthorize.
    As part of this reauthorization, Congress added an 
important and exciting new component to the act. Specifically, 
this legislation authorized $125 million to establish a new 
National Family Caregiver Support Program to assist those many 
daughters, sons, husbands, wives, who are struggling with the 
daily task of caring for older members of their family.
    During our consideration of the reauthorization, we in 
Congress heard overwhelmingly from family caregivers all over 
America. Those caregivers let us know loud and clear what their 
most urgent needs are.
    First, respite care, to give family members caring for an 
elderly loved one a little bit of time away, whether to attend 
to other family or professional matters, or maybe simply to 
take a few well-deserved hours of a break.
    Second, basic and practical education about the nuts and 
bolts of being a caregiver. How do you bathe someone who can't 
walk? Where do you go to get special beds and other needs 
equipment? Those family caregivers are not formally trained and 
many are desperate for someplace to turn for answers to basic 
questions like these.
    Third, support and counseling. Caring for an ailing family 
member can be almost among life's most demanding challenges. It 
is hard and often a lonely burden. For many in this situation, 
sometimes as simple as a local support group or a counselor to 
talk to can be a precious life line that makes the burden 
considerably more bearable.
    At the moment, the States have just recently received their 
initial funding for the new caregiver program. And most are now 
in the process of making critical decisions about how the funds 
will be used.
    Our first goal today will be to look at this new program 
before it gets fully implemented in the States and to assess 
how the States are setting up their programs. I believe it is 
imperative we ensure that the new funding be focused as 
directly as possible on those things the caregivers themselves 
tell us they need most, namely respite, education and support. 
Similarly, we must keep a watchful eye to make sure that as 
many as the new dollars as possible get to the actual caregiver 
on the front lines rather than simply being used for more 
agency staff and administration.
    Second, we also hope today to examine whether or not the 
States are receiving the clear and effective guidance they need 
from the Federal Administration on Aging regarding the 
program's implementation. Again, I want to thank the witnesses 
for attending and look forward to hearing your testimony and 
the advice you have to offer.
    [The prepared statement of Senator Craig follows:]

               Prepared Statement of Senator Larry Craig

    Good Morning. Thank you for attending our Senate Special 
Committee on Aging hearing on the National Family Caregiver 
Support Program.
    Last year, Congress passed legislation reauthorizing the 
Older Americans' Act. I was an original cosponsor of that 
legislation, which updated and amended the Older Americans' 
Act, and I was extremely gratified when it became law.
    As part of this reauthorization, Congress added an 
important and exciting new component to the Act. Specifically, 
this legislation authorized $125 million to establish a new 
National Family Caregiver Support Program to assist those many 
daughters, sons, husbands, and wives who are struggling with 
the daily task of caring for older family members.
    During our consideration of the reauthorization, we in 
Congress heard overwhelmingly from family caregivers all over 
America. These caregivers let us know, loud and clear, what 
their most urgent needs are:
    First, respite care--to give family members caring for a 
elderly loved one a little bit of time away, whether to attend 
to other family or professional matters, or maybe simply to 
take a well-deserved break.
    Second, basic and practical education about the nuts and 
bolts of being a caregiver. How do you bathe someone who can't 
walk? Where do you go to get special beds and other needed 
equipment? Most family caregivers are not formally trained, and 
many are desperate for someplace to turn for answers to basic 
questions like these.
    Third, support and counseling. Caring for an ailing family 
member can be among life's most demanding challenges. It is a 
hard and often lonely burden. For many in this situation, 
something as simple as a local support group, or a counselor to 
talk to, can be a precious lifeline that makes the burden 
bearable.
    At the moment, the States have just recently received their 
initial funding for the new Caregiver program, and most are now 
in the process of making critical decisions about how the funds 
will be used.
    Our first goal today will be to look at this new program 
before it gets fully implemented in the States, and to assess 
how the States are setting up their program. I believe it is 
imperative we ensure that the new funding be focused as 
directly as possible on those things the caregivers themselves 
tell us they need most--namely, respite, education, and 
support. Similarly, we must keep a watchful eye to make sure 
that as many of the new dollars as possible get to the actual 
caregivers on the front lines, rather than simply being used 
for more agency staff or administration. Second, we also hope 
today to examine whether or not the States are receiving the 
clear and effective guidance they need from the Federal 
Administration on Aging regarding the program's implementation.
    Again, I would like to thank the witnesses for attending 
and I look forward to hearing your testimony. Thank You.

    The Chairman. Now, let me turn to the ranking member of the 
committee, Senator John Breaux.

                STATEMENT OF SENATOR JOHN BREAUX

    Senator Breaux. Thank you, Mr. Chairman. I am delighted 
that you are holding the hearing today on something that is 
very important, and that is the whole question of family 
caregiving. This committee, under the leadership of Senator 
Grassley and many of us in the last Congress, was very 
concerned about the tremendous amount of difficulties families 
were facing and the whole question of giving that special care 
through the family support system to senior members of their 
immediate family and sometimes not so immediate families that 
need that help and assistance.
    And so we were able to have field hearings outside of 
Washington and talk to real people who understood the nature of 
these problems. We had hearings in Washington on the concept of 
a National Family Caregiver Support Act. We were very pleased 
that we were able to authorize the National Family Caregiver 
Support Act. It authorized $125 million as part of the Older 
Americans' Act to be part of this program. I think it is very 
appropriate now that we take a look to see how is it working, 
what are the problems, where are the deficiencies? Are States 
able to participate like we wanted them to, particularly in the 
area of the matching funds requirement, because, as most 
Federal programs, it is not just a 100 percent federally 
financed program, but we require a 25 percent match that has to 
be put up by the States to get the 75 percent matching funds 
from the Federal Government.
    And I am really concerned that some States and particularly 
my State may be not using new money to get the Federal match, 
but are taking money away from existing programs in order to 
make the match for this new program. That certainly wasn't the 
intent. We want to encourage States to utilize new dollars as 
the Federal Government has utilized new dollars to create a 
program, which I think is a real good partnership with the 
Federal Government.
    So I am delighted. We have a good group of witnesses, one 
from Louisiana, and look forward to their testimony and working 
with you to see if we can improve the program. Thank you.
    [The prepared statement of Senator Breaux follows:]

                Prepard Statement of Senator John Breaux

    Thank you Mr. Chairman for holding today's hearing on the 
important topic of family caregiving. Two years ago this 
Committee held a hearing for the introduction of the National 
Family Caregiver Support Act, a bill that was successfully 
authorized as part of the reauthorization of the Older 
Americans Act last year.
    Today we hope to hear more about the implementation of the 
National Family Caregiver program. The Administration on Aging 
has been tasked with interpreting the newly enacted legislation 
and seeing that Federal dollars flow to States in a timely 
fashion. We know that some States are further along in the 
development of their family caregiving plans than others.
    While state-by-state family caregiving networks are being 
developed, we want to revisit the original intent of the 
National Family Caregiver Support Act. I look forward to 
hearing from real caregivers and those who represent them. 
Their message is important. We must be sure than in our haste 
to distribute the money that we listen to those who provide 
day-to-day care for their family members and that in turn, we 
create family caregiving support systems to provide meaningful 
assistance to the wives, husbands, sons, and daughters who care 
for their aging relatives day in and day out.
    Long-term care is one of the most daunting social issues 
facing our country. By passing the National Family Caregivers 
Act, Congress has taken a step in the right direction. Much 
more needs to be done and this Committee will certainly 
continue to address long-term care needs.
    I look forward to hearing from today's witnesses and 
working with the Administration on Aging on the implementation 
of one of our country's most exciting and necessary Federal 
programs.

    The Chairman. John, thank you very much. Thank you for that 
valuable insight. You are right. We were making every effort to 
create something new and to expand the role that can be played 
here. Your point is very well made.
    Now let me turn to my colleague from Nevada, John Ensign, 
for any opening comments he might have. John.

                STATEMENT OF SENATOR JOHN ENSIGN

    Senator Ensign. Thank you, Mr. Chairman. I think that 
anybody who has had a family member that they have had to care 
for, and if you haven't, you will, is really the bottom line. 
It is obvious this committee focuses on the elderly; but, 
during my last campaign, I had several kind of home meetings 
with families that had disabled children, and one of the bills 
that I am looking forward to working with you, Mr. Chairman, 
that our staffs have been talking together about, is the whole 
idea of how can we keep people out of institutions for as long 
as possible and keep them in their homes.
    Respite care, things like that the financial burdens on so 
many of these families, whether they are caring for an elderly 
person or they are caring for somebody who is disabled. The 
financial burdens are huge and the question is how can we, in 
the most efficient manner, give them the financial help that 
they need, whether that is through possible tax credits, or 
some of the programs here I think it is very important to be 
able to keep families together because too often we look at 
just, those times where institutions are necessary.
    But in our society today, we go to institutions too 
quickly, and so I am looking forward to working with you to 
keep families together as long as possible for the best quality 
of life. I think it helps everybody in the family and overall I 
think we will have a healthier nation for it.
    The Chairman. Well, thank you very much, and we have got a 
great deal to learn, and with this new program now moving into 
place, it is appropriate that we monitor it very closely to see 
how it works and where its deficiencies might be, and how it 
ultimately becomes implemented.
    With that, let us turn to our first panel, and let me ask 
Norman Thompson to come forward to the table. Norman is the 
Acting Principal Deputy Assistant Secretary for Aging for the 
Administration on Aging here at the U.S. Department of Health 
and Human Services. We are pleased to have you before the 
committee this morning. Mr. Thompson, please proceed.

   STATEMENT OF NORMAN L. THOMPSON, ACTING PRINCIPAL DEPUTY 
 ASSISTANT SECRETARY FOR AGING, ADMINISTRATION ON AGING, U.S. 
    DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, DC

    Mr. Thompson. Thank you, Senator. Mr. Chairman and members 
of the committee, thank you for this opportunity to discuss the 
Administration on Aging's efforts to implement the National 
Family Caregiver Support Program. We appreciate your leadership 
and look forward to working with you on this and other issues 
concerning older Americans and their caregivers.
    Mr. Chairman, the past several months have been exciting 
ones for the Administration on Aging and the aging network. 
With your support and that of other members of this committee, 
the Older Americans Act was reauthorized. That reauthorization 
included the new National Family Caregiver Support Program.
    The National Family Caregiver Support Program is the first 
major new component of the Older Americans Act since the 
establishment of the nutrition programs back in 1972. For the 
first time in the history of the Act, there is now a national 
focus on caregivers as well as care receivers.
    AoA was honored that one of Secretary Thompson's first 
official acts at the Department of Health and Human Services 
was to authorize the release of $113 million to States to begin 
implementation of this program.
    Attention to the needs of caregivers could not come at a 
better time. Families provide 95 percent of the long-term care 
for frail older Americans. Almost three-quarters of informal 
caregivers are women. Many are older and vulnerable themselves 
or are running households, employed or parenting children. 
Estimates for the 1994 National Long-Term Care Survey indicate 
that over seven million Americans are informal caregivers 
providing assistance to spouses, parents, other relatives and 
friends.
    Approximately five million older adults with disabilities 
receive significant levels of services from these caregivers. 
According to the survey, if the work of these caregivers had to 
be replaced by paid home care staff, the cost to our Nation 
would be between $45 and $94 billion per year.
    The assistance provided to elderly or disabled friends or 
relatives may range from bill payment, transportation for 
medical appointments, food shopping and/or preparation, to more 
complex personal care.
    As our older population continues to grow, especially with 
the increased numbers expected as a result of the aging of the 
baby boomers, we can anticipate that the challenge of 
caregiving will increase as well.
    AoA and the national aging network have made good progress 
in implementing the National Family Caregiver Support Program. 
This committee knows the caregiver program is based upon the 
review of the research on caregivers, guidance from 
professional caregivers and discussions with family caregivers 
themselves. We looked closely at programs in various States 
across the country, among them Wisconsin, Pennsylvania, 
Michigan, and Oregon, and engaged Federal, State and local 
leaders in our discussion.
    AoA convened a series of roundtables with caregivers in 
more than 30 cities across the United States involving hundreds 
of caregivers, service providers, policymakers and community 
leaders. These individuals shared with us their joys in caring 
for a loved one, their difficulty in accessing services, their 
unpreparedness for this new and often scary responsibility, 
their loneliness and isolation, and the compromises they have 
had to make in juggling careers, families and finances.
     As a result of this valuable input, the National Family 
Caregiver Support Program is designed to be as flexible as 
possible to meet the diverse needs of family caregivers. We 
have encouraged States to develop multifaceted programs as 
required by the statute based on their service delivery network 
and responsiveness to caregiver needs. We have offered guidance 
and technical assistance to States and the national aging 
network to help them understand and utilize the National Family 
Caregiver Support Program's flexibility to design their system 
of best meet the needs of their communities.
    The National Family Caregiver Support Program is comprised 
of five service categories. The first is information about 
health conditions, resources and community-based long-term care 
services that might best meet a family's needs. Second is 
assistance in securing appropriate help. Third is counseling, 
support groups and caregiver training to help families make 
decisions and solve problems. The fourth is respite care so 
that families and other informal caregivers can be temporarily 
relieved from their caregiving responsibility. And finally 
supplemental services on a limited basis. This could include a 
wide range of services, designed to support the efforts of 
caregivers. Examples from state-funded programs include such 
supports as home modifications, incontinence supplies, 
nutritional supplements and assistive devices.
    The legislation targets family caregivers of older adults 
and grandparents and relative caregivers of children not more 
than 18 years of age. It also directs that States give priority 
to services for older individuals with the greatest social and 
economic need, with particular attention to low-income older 
individuals and older individuals providing care and support to 
persons with mental retardation or who have related 
developmental disabilities.
    The $125 million we received in fiscal year 2001 will 
enable State, local and tribal programs to provide services to 
approximately 250,000 of America's caregivers. We have 
distributed $113 million to States. An additional $5 million is 
designated to assist caregivers of Native American elders and 
will be released shortly in accordance with the guidance AoA 
received from tribal listening sessions held recently.
    Very soon AoA will also announce the availability of almost 
$6 million for competitive innovative grants and projects of 
national significance. These projects, once awarded, will 
demonstrate and test new and diverse approaches to caregiving 
providing us and the aging network with knowledge that will be 
critical to the future success of the program.
    The remaining $1 million is being used for technical 
assistance to the aging network to provide state and local 
programs with the tools to be responsive to family caregivers. 
These include a national technical assistance conference to be 
convened in Washington, D.C., on September 6 and 7; a moderated 
Listserv, on which expert researchers prepare monographs on 
specific issues related to caregiving and enter into a dialog 
with the aging network on how best to respond to that issue in 
our country; an expanded webpage with the most recent caregiver 
information; and other educational and public awareness 
initiatives.
    We have also recently completed a series of bio-regional 
video conferences with all the States to discuss and clarify 
issues related to the implementation of the program. In 
addition, we presented promising approaches from various 
caregiver programs throughout the country that would be helpful 
to States and area agencies on aging as they design their 
programs.
    For fiscal year 2002, the budget request for the caregiver 
program is $127 million, an increase of $2 million over fiscal 
year 2001, to help to maintain the current level of services 
for caregivers as our program takes hold.
    Looking forward over the next year, AoA is committed to 
developing partnerships with our sister Federal agencies and 
other national organizations to further the caregiving agenda; 
to implementing a public awareness campaign to inform America 
of the importance of caregiving and to encourage caregivers to 
seek assistance and training as they begin their caregiving 
careers; and finally continuing to provide the aging network 
with assistance and support to better serve our caregivers.
    Mr. Chairman, we appreciate this opportunity to share our 
progress on the implementation of the National Family Caregiver 
Support Program, and we look forward to working with you to 
meet the challenges and take advantages of the opportunities to 
support America's families.
    I would be happy to address any questions you may have.
    [The prepared statement of Mr. Thompson follows:]
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    The Chairman. Well, Norm, thank you. We appreciate that 
testimony. Obviously, AoA has played a critical role on 
formulating the new program and I am glad that you are here to 
give us the perspective of the current status. According to a 
question and answer sheet from your agency, regulations and 
guidance for new amendments to the Older Americans' Act to the 
States are to be issued in three components: initial and 
ongoing guidance; regulations; and technical assistance.
     What are you doing currently in those three areas?
    Mr. Thompson. We have done a number of things. At the 
beginning of this year, we issued initial guidance to States on 
the requirements of the statute, as well as information on how 
to apply for funds. We made the grants available in February. 
On an ongoing basis, we have been answering questions that 
States and local providers have been asking us. We have 
compiled the most frequently asked of those questions into a 
frequently asked question document that we have made available 
on our website.
    We have held video teleconferences throughout the country 
to explain the requirements of the statute and to share 
information on the program. We do anticipate the need for 
regulations on the Older Americans' Act that was reauthorized 
last year. That reauthorization made some changes in the 
statute that need to be reflected in regulation. So we are 
making progress on that, sir.
    The Chairman. Are you at a point of looking at how you will 
monitor the inputs that you are now putting out and the States' 
activity, how you will monitor outcomes? Have you talked about 
that?
    Mr. Thompson. Yes, sir. We are looking at that from a 
variety of perspectives. We are in the process of making major 
improvements in our Government Performance and Results Act 
(GPRA) activities. We anticipated the need a couple of years 
ago to include caregiving as part of our GPRA measures and last 
year we pilot tested some caregiving related GPRA measures in 
five States and got very promising results from that.
    We intend to expand that as this program rolls out. So we 
will be getting feedback that way. We are also in the process 
of putting out a reporting requirement to States to gather 
information on how the funds are spent.
    In addition to that, we are in constant communication with 
States and local service providers and area agencies on aging, 
entering into dialog with them on how they are doing with the 
program, what problems they are finding, how can we be of 
assistance to them. And we think those are all very important 
ways to get feedback on how this program is operating.
    The Chairman. In your testimony, you mentioned that 
conferences with the States were held to discuss issues related 
to the program. What were some of the specific issues brought 
to your attention? That would be my first question, Norm, and 
then whatever measures are being taken, if any, to explore the 
effectiveness of the National Caregiver Program or Support 
Program and to receive input from the States as we move?
    Mr. Thompson. We received the types of questions that you 
are normally going to get when a new program comes out: 
questions about what does the statute actually say; what does 
it require; how does this program relate to other programs; 
questions across the board. Again, we held a number of video 
conferences, too, to try to answer those questions. We have 
packaged the most frequently asked questions on our website to 
make that information available to the world.
    So we have tried to be very responsive and also very 
respectful of the fact that the statute provides States with a 
wide range of flexibility, which we think is very appropriate 
given the diverse needs of the caregiver population.
    In terms of follow on to that, we have a number of 
activities under way. I have mentioned the conference which I 
think is a very important way of getting this information out 
to folks. We also are putting together a program handbook, 
parts of which will be distributed at our conference. The rest 
of the document will be completed by the end of this calendar 
year, which will put together best practices and some of the 
research that is available to help States and local agencies 
design their programs, make sure they are incorporating the 
latest from the research community and the scientific community 
in the design of their programs.
    The Chairman. Norm, thank you. Let me turn to my colleague, 
John Breaux. John.
    Senator Breaux. Thank you, Mr. Chairman. Thank you, Mr. 
Thompson. You know your testimony points out something that is 
a very interesting statistic that I think with all of the 
hearings that we have and the Finance Committee on Medicare and 
nursing homes and home health care services, we don't realize 
that families still provide about 95 percent of the long-term 
care for seniors in this country. That is a huge number. And we 
spend so much time talking about nursing homes and quality of 
care in nursing homes, whether they are meeting new standards. 
That is all very important.
    But yet still 95 percent of the care is provided by 
families to people within their family. We are part of that 95 
percent. My mother-in-law lives with us and she sort of thinks 
she cares for me, which is just great, and it is kind of a 
shared responsibility there so it works out fairly well.
    But that is the situation that most Americans find 
themselves in. Is there any Federal guidance coming from your 
agency with regard to how the States go about reaching their 25 
percent match? Is there any guidance as to whether they can 
simply subtract money from other existing aging programs and 
use that to match the 75 percent Federal grant?
    Mr. Thompson. There is guidance certainly in the statute, 
and in the departmental grant regulations that pertain to that, 
Senator Breaux.
    Senator Breaux. And what does that guidance say?
    Mr. Thompson. The guidance states there is a requirement 
for a 25 percent match that must be either cash or in kind. In 
the National Family Caregiver Support Program legislation, 
there is a provision regarding non-supplantation of existing 
spending, which would have a bearing potentially on the issues 
you have raised.
    Senator Breaux. And what does that mean?
    Mr. Thompson. That means basically that a State cannot take 
money and substitute it for preexisting State expenditures.
    Senator Breaux. Is that in the act?
    Mr. Thompson. It is in the act, sir.
    Senator Breaux. Is it in the guidance, the Federal regs?
    Mr. Thompson. Yes, sir. We have no regulations out at this 
time. The question has come up in a variety of forms in the 
earlier discussions I mentioned, and we have put out questions 
and answers relating to that issue.
    Senator Breaux. Have you addressed that issue particularly?
    Mr. Thompson. Yes, sir.
    Senator Breaux. And what was your question and answer 
guidance on that?
    Mr. Thompson. The guidance is clear that you cannot reduce 
expenditures in preexisting programs with respect to the 
Federal funds.
    Senator Breaux. Suppose a State does that, what happens?
    Mr. Thompson. If the State does that, it would not be in 
compliance with the statute, and we would certainly have 
discussions with the State to try to remedy that situation. If 
the situation were to continue, it would put funding at 
jeopardy for the State, sir.
    In addition, I might mention in other portions of the Act, 
for example, in the Title III, Nutrition and Supportive 
Services section of the statute, there are maintenance of 
effort requirements as well so that the reduction of funds from 
one section of the statute to the other would also raise some 
questions we would have to look at.
    Senator Breaux. I think Senator Craig and myself probably 
are concerned and would be generally opposed to unfunded 
mandates to States requiring them to do things by Federal 
regulation and not giving them any financial assistance to do 
so. How does that differ in this case?
    Mr. Thompson. In general, most Federal programs require 
some form of non-Federal share. That is a fairly standard 
approach. It is one that we think is good government, good 
management. It is a way of assuring that the State or the local 
agencies have a vested interest in the efficiency and the 
effectiveness of the program. So we certainly agree with the 
matching requirement.
    Senator Breaux. I mean this is not a mandate on the States 
to do any of this.
    Mr. Thompson. Right.
    Senator Breaux. I mean it is an option that they can take 
if they want to participate, but there are Federal guidelines 
that say, as I understand it, that you are not allowed to take 
money from other existing programs in order to create your 
match to participate in something that is not mandated.
    Mr. Thompson. That is correct, sir.
    Senator Breaux. OK. What about the question of respite 
care, something that we talked about in this committee when we 
were writing the act that we thought was important, just the 
use of some type of help just to give caregivers a break? I 
mean this is in some cases--not mine--but in some cases people 
really need just to get away, whether it is for one day or one 
night or one evening or what have you, and the idea was to be 
able to provide some type of assistance so that someone may 
acquire somebody to come into the home and help give them a 
break.
    First what do you think about that? Second, is it being 
implemented? Or third, is it being discouraged?
    Mr. Thompson. We think that is the critical part of the 
statute. It is one of the five services that States must 
provide. There is a substantial body of research evidence that 
indicates that respite care combined with other services can 
have very favorable outcomes both for the caregiver and the 
care recipient. So we think that is a critical component of the 
program.
    States are required to have multifaceted programs and 
provide the five services that are listed in the statute, and 
we believe States are doing that. We would certainly encourage 
that. Again, the research is very clear that there is no single 
approach here that works in all cases that may even work for a 
single individual. But you need a broad array of services to 
provide help to a range of caregivers.
    Senator Breaux. You mentioned, I take it, that the 
guidelines are not out yet. When do we expect them to be?
    Mr. Thompson. Again, sir, we have put out what we call 
frequently asked questions as well as guidance to States on the 
basic implementation of the program, the Federal requirements 
that derive from the statute, and we will be putting out a 
program handbook that summarizes the best research and practice 
available to us in the country later this year.
    We believe that there is sufficient guidance out now for 
States to plan and implement their programs.
    Senator Breaux. But more will be coming in terms of the 
handbook that is coming out?
    Mr. Thompson. Yes, sir. And the guidance, again, we are 
looking at guidance in perhaps two different ways. We are 
looking at guidance on the basic requirements of the statute; 
what does the law require a State to do? And we believe there 
is sufficient guidance there, as I mentioned, for States to 
plan and implement their programs.
    We are also very concerned, because we want this program to 
be just as effective as possible, so we are trying to provide 
guidance in a way of information on the best science, the best 
research results, the best practices out there, and to make 
that available to States on a continuous basis, because frankly 
we are learning about the needs of caregivers and how best to 
respond to those needs everyday. So we try to make that 
information available to States and local agencies to help them 
plan their programs and run their programs better.
    Senator Breaux. OK. They need the guidance, but they need 
the flexibility. I mean obviously what works in one State may 
be adaptable to another State so we need to give them the 
maximum flexibility within some type of a broad framework of 
guidance. I mean that is what I think we could all agree we 
need, but they need guidance because they want to make sure 
they are doing what is appropriate and proper, but it does not 
have to be a one-size-fits-all set of regulations or guidance. 
I mean that is what we should strive for and I am certain that 
you will be doing that. Thank you very much.
    Mr. Thompson. Thank you sir.
    The Chairman. Norm, thank you for your time. This committee 
will stay close to you and the AoA as this program develops. We 
will want to monitor it closely and see what kinds of trends 
develop in the States as to where they may choose to go with 
this program because I think, as John has said, we have offered 
reasonable flexibility in it, and I think all of us are anxious 
now to see if we have read the public right and where they will 
go or if we need to make some adjustments down the road. But 
once again thank you very much for being with us this morning.
    Mr. Thompson. Thank you, sir.
    The Chairman. We appreciate it.
    Let me call our next panelist, Helen Hunter. Helen is the 
wife of the late Jim ``Catfish'' Hunter, member of the board of 
directors of the Jim ``Catfish'' Hunter ALS Foundation of 
Hartford, NC. All right. That is our first panelist of this 
panel.
    Our second panelist will be Sandy Tatom. Sandy is a family 
caregiver from Boise--my home State. She is joined by her 
husband Dean Tatom. I understand, Dean, you are just there for 
moral support; is that right?
    Mr. Tatom. Yes.
    The Chairman. Wonderful. We are pleased to have you with us 
today--all three of you. Helen, if you would pull that 
microphone as close as is comfortable so that we and the 
audience can hear you and our recorder can. Please proceed.

  STATEMENT OF HELEN HUNTER, WIFE OF THE LATE JIM ``CATFISH'' 
HUNTER, MEMBER OF THE BOARD OF DIRECTORS OF THE JIM ``CATFISH'' 
              HUNTER ALS FOUNDATION, HARTFORD, NC

    Ms. Hunter. Thank you, Mr. Chairman and members of the 
committee for letting me speak today. I am here on behalf of 
the ALS patients and caregivers. I have a lot of people who 
have come to stand behind the ALS patients and caregivers 
today. I would like to just mention some of them. Steve 
Burline, Steve Garvey, Michael Gross, Steve Stone and Michael 
Nurry and Jay Johnston have all come to support our effort for 
caregivers.
    My husband was diagnosed with ALS in 1998 and died from 
this terrible disease in 1999 in September. It is hard to see 
your loved one go through this stage of disease because he had 
always been a very independent do-everything person, and to see 
them lose control of not being able to feed yourself, bathe 
yourself, help get up in and out of bed, you do not realize how 
much they can't help you when you have to pull and tug on them, 
and you are wanting to do all you can for them, but sometimes 
you don't know if you are meeting all of their needs.
    And I want to help all these caregivers out here and all of 
the ALS patients because we need your help and we need your 
money to do this. An ALS patient needs a trained person to help 
take care of them because the stages of the disease as they 
progress, you have to have different like nurses and different 
things to come in and help take care of that.
    I was very fortunate, Jim and I were, to have insurance 
that helped take care of our things, but a lot of people do not 
have that. And like Rulitek, he was on that, and that cost $800 
to $900 a month, and some people don't take it because they 
cannot afford it. And I think we should think about this 
disease because any one of us, myself included, could get this 
terrible disease. It is not just linked to any race or any one 
kind of person, and you need to think about this, and it could 
be in my family still. I am not sure because of Jimmy having 
it, and that worries you thinking that your own children could 
have it themselves.
    I wanted to thank you for letting me come speak. I am a 
little bit nervous because I have not talked in front of a 
committee like this before.
    The Chairman. You are doing well. Thank you, Helen.
    Ms. Hunter. But we had like a group from Blue Cross/Blue 
Shield who called our chapter who needed help for someone, but 
they didn't know about how to go about telling them, so that is 
a big company, and when they need help, I think it is time for 
the caregivers to get some more help and the ALS patients. And 
see my husband was 53 when he died so it is not just older 
people because people with ALS are getting it younger and 
younger it seems like, and you do not usually live but 2 to 5 
years.
    There are some cases where they do live longer, but it is 
hard to deal with when you see somebody you love, especially if 
it is a friend, your loved one, or a relative. If any one of 
them gets it, it affects you in that certain way and you become 
a big advocate for this disease. So I appreciate you listening 
to me and thank you for your time this day.
    [The prepared statement of Ms. Hunter follows:]
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    [GRAPHIC] [TIFF OMITTED] T3599.009
    
    The Chairman. Helen, thank you. Before we ask questions of 
you, I want to turn to Sandy Tatom, a family caregiver from 
Boise, ID. Sandy, again, if you would pull the microphone as 
close as is comfortable, please proceed, and welcome to the 
committee.

   STATEMENT OF SANDY TATOM, A FAMILY CAREGIVER, BOISE, ID; 
                   ACCOMPANIED BY DEAN TATOM

    Ms. Tatom. Mr. Chairman and Senator Breaux, my name is 
Sandra Tatom and this is my husband Dean. We are from Boise, ID 
and we are caregivers for Dean's mom. I am nervous, too.
    My 87-year old mother-in-law has not been able to live 
alone for approximately 10 years. She has lived with us for 6 
months or more each year and other family members in her 
hometown the remainder of the time. This situation has changed 
recently.
    Mom had been in the hospital in her hometown for 2 weeks 
when my husband went down to see her in February of this year. 
She had not been out of bed in those 2 weeks, and Dean got her 
out of bed, out of the hospital, and soon had her back in 
Boise. We believe this visit will be a permanent one. The 
family members in her hometown are not able to keep her 
anymore.
    When mom got to our home in February, she was not able to 
walk without help. She was incontinent and totally confused, 
and Dean and I did not have a clue how to take care of her. We 
could have used a class in Caregiving 101. It was very 
difficult to do the bathing and feeding and bathroom assistance 
while still leaving her some dignity.
    Dean is a retired school teacher and I work full time so 
the caregiving during the day is his. He needs a break in his 
caregiving and affordable quality respite care is hard to find. 
Often I have wished there was someone we could call to consult 
regarding the certain different stages mom is going through. 
Our community has a dial-a-nurse for medical questions. We 
could use a dial-a-caregiver for caregiver questions.
    We realize there are activities we have to forego in order 
to care for mom, but we know we have years ahead to do those 
activities. But one of the big decisions we had to make was did 
we want to give up our business? It took us time to build this 
business, and it is not something that we can put on the shelf 
and pick up later. We have a motor home and a trailer and we 
travel to shows and pow wows on weekends and set up a booth and 
sell the southwestern and Native American products.
    Our goal is to supplement our retirement and pay for our 
travels. Mom went with us last year and we always made sure our 
motor home was next to our booth where we could watch and help 
her if she needed us. Our dilemma now is will she be strong 
enough to travel with us this year?
    If unable to do so, we need affordable weekend care for 
her. This care could be having someone come into our home on 
weekends and stay with mom or finding an affordable adult care 
facility where we could leave her for the weekends. Affordable 
is of foremost concern. We have checked around and in-home care 
costs approximately $150 a day. The adult care centers which 
will take people for short-term care costs between $75 and $150 
a day. Available beds in these facilities are real limited. Our 
business is just getting started and we cannot afford to pay 
that much.
    We have heard from other caregivers that occasional 
affordable weekend care or respite would be very beneficial for 
the caregiver's sanity. Employees work 40 hours a week and they 
have their weekends off. Caregivers work 168 hours a week and 
with no weekends off.
    We have learned the benefit of attending support groups, 
but there is a problem in finding affordable care for the loved 
ones while attending the meetings. I have talked to people who 
were or still are caring for their loved ones at home. A friend 
of ours from Council, ID, a rural logging and ranching 
community, 125 miles from Boise, had taken care of her husband 
at home. He had Alzheimer's. My friend had her own business and 
had difficulty finding someone to stay with her husband during 
the day.
    She could find no one to stay at night so she could sleep 
and she finally had to place her husband in a facility because 
she was just worn out. There are other people I know of who 
live in rural areas which receive little or no respite care for 
the caregivers.
    Mom has taken care of us through the years with total 
unselfish love and we are glad that we are able to care for her 
now. She has adamantly hoped that she would never have to go 
into a facility, and this is the last thing we want to do for 
mom. We hope and we will try with all our power to keep her 
with us. I know there are many people who have been at this 
intense caregiving stage longer than we have, and they need 
respite and help.
    We are not looking for nor do we wish to have a give-me 
program, but the availability of affordable respite would help 
us and many like us keep our loved ones at home. We believe 
funding of the National Family Caregiver Support Program would 
be less expensive than paying for facility care.
    [The prepared statement of Ms. Tatom follows:]
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    [GRAPHIC] [TIFF OMITTED] T3599.011
    
    [GRAPHIC] [TIFF OMITTED] T3599.012
    
    The Chairman. Well, Sandy, thank you very much for that 
testimony. I think it demonstrates what so many people are 
going through and the clear need for help.
    Helen, thank you for being here. I know that you are in 
town attending an ALS meeting, commonly known I think to most 
of us as Lou Gehrig's disease, and I do appreciate your taking 
time to come and provide us with your insight today.
    I think all of us, well, at least many of us, knew of your 
husband by his reputation as a fine ballplayer, the Oakland A's 
and the New York Yankees, the winning of so many games, 224 I 
am told, pitched in six of the ten World Series in the 1970's, 
and earned five World Series rings, and won the Cy Young award. 
Those kinds of situations that you went through with your 
husband are very tragic, and to have the kind of relief and 
help that you talk about is so very important.
    As you know, I think the National Family Caregiver Support 
Program will hopefully provide relief and information to 
caregivers this year for the first time. How would this type of 
program have been beneficial to you most and what services or 
information did you most need when you were a caregiver?
    Ms. Hunter. Well, I think it would have benefited me some, 
but I did have insurance. Jimmy did have good insurance. And so 
that helped us out a lot. But there are so many who do not, and 
I really didn't know a whole lot about the disease when he 
first was diagnosed because you have to eliminate everything 
else. We went to so many doctors. You have to eliminate 
everything before they can really finally diagnose you with 
ALS.
    And home health care did come in and help us and we had a 
hospital bed because it was hard for him to sleep laying just 
flat, and the hospital bed helped that way. He had not gotten 
to the later stages as a lot of people have. And they have to 
have a lot more things to help them out.
    So I am just thankful we did have insurance, but the other 
people who do not really need this to help. I mean they have 
Hoya lifts that they have to get to lift them. They need the 
wheelchairs. Sometimes they have to redo their houses, get 
vans, you know, to take them in. We did have a van, and I was 
able to help, you know, get him in it, but it is just very hard 
for any caregiver to do all these things because I said most of 
the focus is on the patient and people a lot of times don't 
think about the caregiver, and you do not think about it either 
when you are doing it, because you do it because you love them 
and you are wanting to do it for them. But people just don't 
think about that person at the time, but they do need all these 
things.
    The Chairman. Well, thank you very much. This is very 
valuable insight. That is right. We almost always think of the 
failing or ailing person and the disease that he or she may 
have and the infirmities of that, but it has certainly been our 
experience, and I witnessed it first hand, the phenomenal 
fatigue and oftentimes distress that occurs with that loved one 
who is providing the care, and that is, of course, why we have 
moved the way we have here.
    Sandy, your being willing to be here and offer testimony is 
really very valuable to us as we monitor the implementation of 
this program. What I think I heard you saying was that both you 
and Dean really did need a class in Caregiver 101.
     Ms. Tatom. 101, yeah. Education.
    The Chairman. And I suspect that tens of thousands of 
Americans end up needing that on a yearly basis, and of course 
that is part of what we hope this program can offer. Could you 
tell us how you and your husband have had to adapt your daily 
lifestyle? I know you have talked about the frustration of the 
flexibility of the working and running your business, but your 
daily lifestyle obviously has had to change because you have 
chosen to become caregivers.
    Ms. Tatom. Well, I think to begin with, we had to give up 
skiing because, you know, there was no one that she could stay 
with while we were up on the slope. We try to include her in as 
many activities as we can. Dean was going to take his little 
boat out on the reservoir, and I said you can't do that, you 
have to take care of mom. He said I am going to take her with 
me. She enjoyed it. She enjoyed it.
    So we try and include her as much as we can, but before she 
was there permanently, when I would get home from work, we 
would go to the gym together. Well, someone has to stay home 
and we have to go singularly. And there are just different 
activities. We talk about traveling and stuff. Oh, we can't do 
that right now. So, you know, most of these things we can do 
later. I mean, you know, that is important. So it has changed a 
lot of the activities.
    There are days that someone has to be in the room or very 
close by so that she does not get up and fall. So we cannot 
both of us go out and work in the garage or in the yard and, 
you know, just different activities that someone has to be on 
standby, but like I say, we try and take her every place we can 
take her and go as much as we can and we get her to push the 
wheelchair as far as she can and then we push her and try and 
keep her as active as we can.
    The Chairman. Obviously, it has changed your lifestyle a 
considerable amount and that is a choice you have made. If you 
were designing a program to provide support for people like 
yourself, what would be the single-most important ingredient or 
item that you would want to see in that?
     Ms. Tatom. Well, if I was designing Caregiving 101, I 
think a few basics to start with: what type of products to use? 
I mean I went to the store and was hit by a vast array of 
products. I am standing there saying, OK, now what? Education 
in different stages, different things where my husband and I 
can realize, you know, others have been there. We are not 
reinventing the wheel. We are listening to others that have 
been there before we have, and they can help us. Education in 
the different steps and stages that we are going to be facing 
because each one is new to us and we just do not know what we 
are looking at down the line.
    The Chairman. Well, thank you both. Let me turn to my 
colleague, John Breaux.
    Senator Breaux. Thank you very much, Mr. Chairman, and Mrs. 
Hunter and Mrs. Tatom, and Mr. Tatom, thank you for being with 
us as well. Mr. Chairman, I am informed that along with Ms. 
Hunter, she had a group of celebrities that are with us 
attending, and maybe we could just ask them if I call out their 
names if they would stand up.
    The Chairman. Well, thank you for reminding me of that. 
That is right.
    Senator Breaux. They are here, as I understand, also for 
the ALS conference in Washington. We are delighted to have them 
in Washington. We are particularly delighted to have them with 
us at the committee and if we maybe just ask them to stand so 
everybody can know that they are here for a very important 
conference.
    Steve Garvey played a little baseball in his time. Good to 
have you here.
    The Chairman. Yes, welcome.
    Senator Breaux. Steve Burline, played a little quarterback 
in football days. And Jay Johnston is another former great 
baseball player. Delighted to have him.
    The Chairman. Thank you.
    Senator Breaux. And Steve Stone, another player and former 
Cy Young award winner as well, delighted to have him. We also 
got a couple of folks from the acting world we are delighted to 
have as well. Michael Norry from Flashdance, which I have seen. 
I thank him for being here. And also Michael Gross----
    The Chairman. He used to be a football player, yeah.
    Senator Breaux [continuing.] From Family Ties. Michael, 
thank you for being here, too.
    The Chairman. Oh, yes.
    Senator Breaux. Delighted to have all these people. Oh, 
yes, now you recognize him. Oh, yeah. [Laughter.]
    Mr. Gross. We are all a little older.
    Senator Breaux. Yeah. Delighted to have you all here. 
[Applause.]
    I think we have all had that statement made to us: I 
recognize you but I don't know who you are. [Laughter.]
    Delighted to have all you folks here.
    The Chairman. Thank you for doing that, John. Welcome.
    Senator Breaux. To the panel, Ms. Hunter and Ms. Tatom, 
thank you for what you have done and thank you for sharing that 
experience with us. We spend so much time, I guess, in Congress 
and in government talking about how to extend the lives of 
individuals, and that is very important, and medical science is 
doing wonderful things with advancement of drugs and treatments 
and cures for diseases that in the past were thought to be 
always incurable, but I think that we cannot lose fact that we 
also have an obligation not just to get people to live longer, 
but also to help them live better lives.
    And really when it comes to the question of caregiving, 
that is really what we are talking about. Medical science can 
extend a human's life for a very long time. The question is 
what is the quality of that life? And I think that whole thing 
we were talking about with the home caregivers program was to 
help families help their family members live better lives by 
helping to improve the care that they receive.
    I was interested, Ms. Tatom, maybe out in your more rural 
part of America, you don't have a Council on Aging that can 
help provide that information, but one of the things I would 
expect and hope the Councils on Aging are able to do is to help 
families who are involved in caregiving by giving them the 
hints and the help and the assistance. Maybe you don't have 
that out in your more rural area?
     Ms. Tatom. I am finding that there is information out 
there. It is just initially it was very difficult for me to 
locate and I am finding more and more. Like I said in my little 
talk, it would be nice to have a dial-a-caregiver that you 
could call like dial-a-nurse, and I have a headache and can you 
help me? Or my mother-in-law has this and what is going on?
    Senator Breaux. Well, there should be. That is one of the 
things that the council should do, I mean the aging 
administration, to make sure. People need information. This is 
not rocket science. Other people have done this before us, and 
we need to learn by their experiences and know what has worked 
for them, where they have had problems, and here are other 
people's experiences. So that when it happens to you, you will 
know how to respond to it. And I would really encourage the 
Administration on Aging to really make sure that some of the 
funds we use are for information purposes to let people know 
what is out there from a help standpoint.
    Where can you go when you need extra help? And then provide 
that very important information that I think is so, so 
critical, but I thank both of you for sharing your experiences 
with us and with the rest of the country really, and so we can 
come up with some better ideas. So we appreciate your being 
here.
    Ms. Tatom. Thank you.
    The Chairman. Helen, Sandy, Dean, thank you all for being 
here and taking time to offer testimony. We appreciate it.
    Ms. Hunter. Thank you.
    The Chairman. Now let us call our third panel. Suzanne 
Mintz, President, National Family Caregivers Association in 
Kensington, MD; Deborah Briceland-Betts, Executive Director, 
Older Women's League of Washington, DC.
    My colleague, do you want to introduce----
    Senator Breaux. Oh, sure. Yeah, absolutely. And delighted 
to have Kristin Duke as our Executive Director of Central 
Louisiana Area Council on Aging from Louisiana and hear about 
some of our concerns from our State. And we are delighted to 
have her as well. Thank you.
    The Chairman. Thank you all again for being here. Suzanne, 
we will start with you.

    STATEMENT OF SUZANNE MINTZ, PRESIDENT, NATIONAL FAMILY 
             CAREGIVERS ASSOCIATION, KENSINGTON, MD

    Ms. Mintz. Mr. Chairman, members of the committee, thank 
you for this opportunity to speak to you today. Written 
testimony has been submitted for the record. My name is Suzanne 
Mintz, and I am the President and Co-Founder of the National 
Family Caregivers Association, NFCA, and I am also a family 
caregiver myself.
    NFCA exists to educate, support and empower family 
caregivers and speak out publicly for meeting caregivers' 
needs. NFCA reaches across the boundaries of differing 
diagnoses, different relationships and different life stages to 
address the common concerns of all family caregivers.
    Our members care for spouses, children, aging parents, 
siblings, friends and others. Half are caring for seniors 66 or 
older, and most are heavy-duty caregivers meaning they are 
providing hands-on care on a daily basis, helping loved ones 
dress, bathe, toilet, et cetera. For three-fifths of these 
caregivers, caregiving is the equivalent of more than a full-
time job.
    I have been asked to talk to you about the needs of family 
caregivers, especially the unmet ones, and how the National 
Family Caregivers Support Program might meet them. If you have 
never been a family caregiver yourself, it is very difficult to 
completely appreciate the impact. Statistics from numerous 
studies document the impact, but it is the voice of caregivers 
themselves that truly tells what they are about.
    Here is one such voice:
    ``I am on call 24 hours a day. Last night I was up for 2 
hours because he, my husband, wet the bed and I had to get up 
to change him. I am stressed out. I have come to a point where 
I am just really worried all the time. Charles has dementia, 
too. It makes it very hard for me because I am lonesome. 
Caregiving is an emotional, financial and physical drain that 
takes up a lot of energy. If I could be selfish, I would ask to 
have a wee bit of time just to dress up. I look grungy all the 
time and seldom get to shower because there is nobody here. I 
can't leave him alone too long.'' Frances McArty, 80 years old, 
Champaign, IL.
    This caregiver's statement speaks to the very real and 
unmet needs of family caregivers. It speaks to the need for an 
assessment of a caregiver's individual needs and circumstances, 
including emotional resources, physical capabilities and 
practical knowledge. It speaks to the need for training to help 
caregivers learn the skills that apply to their particular 
caregiving circumstances; and training to help them learn how 
to manage, plan and cope with their caregiving 
responsibilities; it speaks to the need for respect for the 
work that they do and peer support to validate their feelings 
and experiences and provide them with knowledge and tips from 
the trenches; it speaks to the need for one-on-one assistance 
and advice from those who know the system, understand the 
issues, and can help caregivers access needed resources; the 
need for assistance to help caregivers think through and manage 
the decisions they need to make so that in the long-run, they 
can be more effective caregivers and healthier human beings; 
the need for financial support to offset the expenses of 
caregiving; and last, but certainly not least, it speaks to the 
need for high quality respite services that meet the individual 
needs and circumstances of a caregiver's life.
    The National Family Caregiver Support Program can begin to 
address many of these needs but certainly not all of them. The 
program is a start and provides the first national mandate for 
serving a portion of our Nation's family caregivers, and the 
committee should be proud of its role in making it a reality.
    Meeting the needs of family caregivers is a complex process 
and I think much can be learned by looking at programs that 
have already been established and been successful.
    In 1999, the Family Caregiver Alliance in San Francisco 
published a report entitled ``Survey of Fifteen States 
Caregiver Support Programs.'' I recommend the report to the 
committee for reference. It documents 33 state-funded programs 
serving family caregivers. Five stood out as best practice 
models:
    California's Caregiver Resource Centers; New Jersey's 
Statewide Respite Program; New York's Consumer and Family 
Support Services Program; Oregon's Lifespan Respite Program; 
and Pennsylvania's Family Care Support Program.
    They are all different in their way, but they all have 
common themes among them. They all provide respite. They all 
focus on consumer directed care. They have a flexible approach 
to service delivery and broad income eligibility.
    We need more programs with these profiles, programs that 
are designed with input from the people who need them, so that 
they can really meet the needs of the community; programs that 
are flexible and are designed to meet a caregiver's need in 
creative ways rather than being so tightly prescribed that they 
only allow for one-size-fits-all predetermined solutions; and 
programs that provide services with more access to respite, and 
allow family and friends to provide care when appropriate. At 
times that might be the only way caregivers are willing to take 
a break and the only way care recipients are willing to accept 
care from someone other than the primary caregiver.
    The National Family Caregiver Support Program is the first 
Federal program to specifically reach out to family caregivers. 
Even in its first year of implementation, it needs to stand as 
a beacon so that other programs will follow. The National 
Family Caregiver Support Program should focus on providing real 
services that make a difference in people's lives as soon as 
possible so that the impact can be felt.
    Keeping sight of that goal, working creatively with 
existing service providers to maximize available dollars, and 
doing so all within a targeted timeframe can help ensure its 
early success.
    Before I close, I would like to draw the committee's 
attention to a piece of legislation that has not yet been 
passed that would provide a valuable corollary to the National 
Family Caregiver Support Program, and that is S. 627, the Long 
Term Care and Retirement Security Act of 2001.
    This bill would help all of us prepare for the cost of 
long-term care by providing a tax deduction for the purchase of 
long-term care insurance. And right now, it would help existing 
caregiving families by providing them with a $3,000 tax credit 
to help assuage the out-of-pocket costs of caregiving, costs 
that are considerable, and medical costs for these families has 
been estimated at 11.2 percent of income for families that have 
one member with a disability.
    I encourage committee members to cosponsor it and want to 
thank Senator Breaux, Senator Collins, and Senator Lincoln for 
already doing so. Thank you.
    [The prepared testimony of Ms. Mintz follows:]
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    The Chairman. Suzanne, thank you. Valuable testimony. We 
appreciate that. Now let me turn to Deborah Briceland-Betts, 
Executive Director, Older Women's League, Washington. Deborah.

STATEMENT OF DEBORAH BRICELAND-BETTS, EXECUTIVE DIRECTOR, OLDER 
                 WOMEN'S LEAGUE, WASHINGTON, DC

    Ms. Briceland-Betts. Thank you, Mr. Chairman and Senator 
Breaux. OWL commends you for engaging in this important 
discussion. OWL's 2001 Mother's Day Report, Faces of 
Caregiving, was released last week on Capitol Hill, and it 
reminds us that women provide the majority of informal 
caregiving work and often pay a steep price for their efforts.
    Caregivers suffer reduced wages and job security, which 
inevitably lead to diminished retirement security. Informal 
caregivers also experience emotional and physical stress that 
can take a toll on their own health. Caregiving is a gender 
issue. Nearly three-quarters of informal caregivers to seniors 
are women. Among the men and women who are caregivers, women 
average 50 percent more hours of care per week than men.
    Women also provide care for longer periods of time than 
men--in many cases, for over five consecutive years. The 
typical caregiver is a married woman in her mid-40's to mid-
50's. She is employed full time and also spends an average of 
18 hours per week on caregiving. She juggles her career with 
caring for a parent, a partner, a spouse, and she is still most 
often the primary caregiver for her children.
    Increasingly, these women are primary caregivers for their 
grandchildren as well. Between 20 and 40 percent of caregivers 
are members of the sandwich generation, caring for children 
under 18 in addition to other family members. OWL's report 
indicates that women's earnings and retirement security are put 
at risk by informal caregiving and increasingly so the longer 
they provide care.
    Time out of the workforce for caregiving diminishes women's 
earning power, which is already reduced by the wage gap and 
sharpened by her longer life span. In fact, estimates reveal 
that caregivers lose an average of $550,000 in total wage 
wealth, and their Social Security benefits decrease an average 
of $2,100 annually as a result of caregiving.
    These figures would be even larger if those losses 
associated with childcare responsibilities were also included. 
The National Family Caregiver Program provides some relief from 
the stresses of caregiving. The direct services for caregivers 
are critical. Information is power, as we have heard today, to 
anyone struggling with a long-term care situation. And the 
program will provide an important one-stop shop for caregivers.
    Families thrust into such situations--as we heard from Ms. 
Tatom--often don't know where to turn. They aren't worried 
about policy implications. They simply want and need accurate, 
timely information about services and options. The caregiver 
program provides an important point of entry for caregivers and 
their families to find out what services are available in their 
community.
    The training piece of the program is also important, not 
just in its positive effect on the care provided, but for the 
protections it would provide the caregiver. Caregiving is 
physically demanding work. OWL's report indicates that 44 
percent of caregivers find their routine caregiving tasks cause 
chronic physical pain, particularly when the caregivers lack 
appropriate training.
    The support group and respite components of the program are 
also a significant step in the right direction. Older women 
with caregiving responsibilities often face mental, physical, 
and financial stresses. The OWL report points out that a 
substantial number of caregivers feel worried, frustrated, 
depressed, or overwhelmed as a result of caregiving.
    This emotional stress sometimes leads to depression, which 
can impair a caregiver's ability to provide care and also 
endanger her own health. One study cited in the report found 
that two out of three informal caregivers are in poor health. 
The additional health related costs due to increased informal 
caregiving will further erode an already dwindled retirement 
income. The opportunity for caregivers to talk about these 
challenges with counselors and peers in similar situations can 
be an invaluable source of emotional support.
    The program provides an opportunity to bring together 
community agencies to begin to address the critical needs of 
caregivers. This is the good news. But the bad news is that we 
already know the program is woefully underfunded. The lack of 
resources is already a problem and as the baby boomers age, it 
will easily become a crisis.
    Last, the program was developed as an initial effort to 
meet the needs of only one segment of the caregiver population. 
It targets the caregivers of older adults as well as older 
individuals who are raising their grandchildren or caring for 
children with disabilities, but many of America's caregivers 
including Mrs. Hunter--``Catfish'' Hunter was 52 when he died--
would not be eligible for this program. A spouse caring for a 
spouse under the age of 60 is not eligible for these services.
    OWL urges a broader definition of caregiver beyond family. 
Our report indicates that 29 percent of those who provide 
informal care are not family members. Aside from its limited 
funding, these eligibility restrictions represent a significant 
shortcoming of the program.
    OWL believes that we need a new paradigm for long-term care 
policy that values caregiving and moreover is aimed at getting 
the best and more appropriate care to those who need it, 
without requiring women to sacrifice their economic security 
and retirement to achieve it. This repositioning would put 
caregiving on a whole new plane. Caregiving relationships are 
as varied as the faces of those who provide the care and 
motivations for providing such care are more complicated than 
obligation or familial love.
    OWL does not believe women--or anyone else--should be 
expected to willingly sacrifice their own retirement security 
or health as a result of caring. Thank you.
    [The prepared remarks of Ms. Briceland-Betts and Faces of 
Caregiving Report follow:]
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    The Chairman. Deborah, thank you very much. Now, let me 
turn to our last panelist, Kristin Duke, Executive Director, 
Cenla Area Agency on Aging, Alexandria, LA.

   STATEMENT OF KRISTIN DUKE, EXECUTIVE DIRECTOR, CENLA AREA 
             AGENCY ON AGING, INC., ALEXANDRIA, LA

    Ms. Duke. That is why we call ourselves AAAs.
    The Chairman. Yes, I see. Thank you.
    Ms. Duke. Good morning, Chairman Craig----
    The Chairman. That is easier.
    Ms. Duke [continuing.] And Senator Breaux. My name is 
Kristin Duke. I am the Executive Director of the Cenla Area 
Agency on Aging in Alexandria, LA, and a member of the board of 
directors of N4A, the National Association of Area Agencies on 
Aging. Thank you, Senator Breaux, for the opportunity to appear 
today at this important hearing on the National Family 
Caregiver Support Program.
    N4A and area agencies share a common goal with the new 
Family Caregiver Support Program: to help older Americans stay 
in their own homes and communities with maximum dignity and 
independence as long as possible. Since the mid-1970's, area 
agencies have demonstrated an extraordinary record of 
achievement in stretching a limited amount of Federal money to 
help hundreds of thousands of older people avoid costly nursing 
home placement and remain independent in their communities.
    The Older Americans' Act is a prime example of Federal, 
State and local partnerships that work. There is widely varying 
capacity across the country to serve caregivers, and area 
agencies face unique challenges as we begin to implement the 
Family Caregiver Support Program. I would like to share with 
you some of the particular challenges that area agencies in 
Louisiana face.
    Because the Older Americans' Act requires that we serve the 
neediest elderly first and because there are so many older 
persons without anyone nearby to provide help of any kind, the 
seniors we reach now with in-home Older Americans' Act programs 
tend to live alone. The Family Caregiver Support Program gives 
us our first opportunity to concentrate on caregivers' needs.
    My advisory council are very excited about the new program 
and early this year determined the caregiver support services 
they would like for us to provide. In Louisiana, however, we 
have met with both time and money problems implementing the new 
program. The guidelines proposed by the State office in late 
March are more restrictive than we had hoped, and allow for 
little direction from caregivers about preferred services.
    But they do stress that respite for caregivers is the 
program's goal. Because of the lengthy process for State 
regulations, area agencies will not be able to issue contracts 
soon; funds will not be available before October 1. With regard 
to money, rather than identify a new source of funds, Louisiana 
has transferred existing State funds that were used for other 
critical aging services to meet the 25 percent match 
requirement for the Family Caregiver Support Program.
    So, although Louisiana will receive new Federal funds for 
the caregiver program, existing aging services such as home 
delivered meals, transportation and senior center activities in 
my area will be decreased. Surely, it was not Congress' intent 
to begin a new program at the expense of existing aging 
services.
    So, as much as I wish I could, I cannot offer you a success 
story from Louisiana, at least not yet. I support the Federal 
goal to allow States flexibility to design new programs for 
family caregivers, but in Louisiana, time for development of 
strict State regulations and difficulty raising the match mean 
that those services will not be available before the last 
quarter of this year.
    As a member of the N4A board of directors, I have spoken 
with other board members and area agency directors across the 
country. All share my excitement about this program's 
potential. Some also share my frustration with slow 
implementation processes. But it is not possible to institute 
new programs overnight, particularly serving an entirely new 
constituency.
    State agencies are proceeding cautiously in designing 
programs and area agencies face the difficulty of maximizing 
funding and balancing multiple local needs. I cannot offer much 
tangible information because few States have a full-fledged 
operational program yet.
    States that already had a caregiver support program funded 
locally seem to be moving most successfully. Thanks to the 
Administration on Aging's list-serve program which links State 
units and area agencies to discuss caregiver issues, I have 
learned from the experience of those States, and I am sure that 
with resources and guidance available in Louisiana, we can do a 
great deal for our caregivers.
    I know that the Family Caregiver Support Program will be a 
resounding success. I have personally done my time in the 
sandwich generation. And I assure you that a program that helps 
family caregivers will make a tremendous difference in the 
lives of both caregivers and those they love. It is vital that 
we maintain an increased funding for family caregiver services, 
and N4A has already established a broad-based advocacy effort 
to keep caregiver support high on the agenda of the new 
administration and Congress.
    We look forward to an opportunity to sit before you again 
soon and present documented evidence of the success of the 
Family Caregiver Support Program and to let you know how we 
have improved the lives of caregivers and the seniors they 
maintain in the community. With this evidence of success in 
hand, we will ask you for additional funds to expand this 
program. Thank you again for your interest in the Family 
Caregiver Support Program and the national aging network.
    [The prepared statement of Ms. Duke follows:]
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    Senator Breaux [presiding.] Thank you very much. Senator 
Craig, Chairman Craig, will be back in just a moment and we can 
start with questions, and we are delighted that we are joined 
by Senator Carnahan as well.
    Let me ask Ms. Duke, obviously the question I am really 
concerned about is that we created a program, we really 
intended it to be a new program, and that was going to be 
funded 75 percent by the Federal Government, and the States 
were going to have to come up with the 25 percent match.
    This is not a mandatory program. It is an optional program 
to the States. If they want to do it, they can participate, but 
they have to show support for it on a local level and that 
support is intended to be shown by coming up with a 25 percent 
match. I take it from what you are telling me is that in 
Louisiana, my State, that I represent, that we did not do that, 
that the 25 percent that the State came up with in matching 
money was achieved not by adding additional dollars, but merely 
taking other monies away from existing aging programs----
    Ms. Duke. That is correct.
    Senator Breaux [continuing.] to come up with a match.
    Ms. Duke. That is right. In Louisiana, the legislature is 
very good to aging programs, and for over 20 years parish 
councils on aging, which are service providers, have received 
discretionary State funds that must be used for aging services, 
but can be used wherever the local council determines the most 
need exists, and these funds have gone up and down over the 
years and most recently have been at least $20,000, even for 
the smallest parishes.
    Senator Breaux. So the result of the new program on a 
Federal level is that you created a new program, but you really 
did not get additional money in the Council of Aging to fund 
the program from the State?
    Ms. Duke. That is correct. The State unit chose to take the 
matching amount from those parish discretionary funds which are 
entirely State funds and transfer that as the match for the 
Family Caregiver Support Program.
    Senator Breaux. So the net result was no increase in 
funding for the new program?
    Ms. Duke. Well, the Family Caregivers Support dollars are 
new, but existing programs that had been shored up by those 
parish discretionary funds have been decreased.
    Senator Breaux. Now, the area where the money has been 
decreased would be programs such as what?
    Ms. Duke. In my area, I ran a survey. It includes home 
delivered meals, senior center activities and transportation.
    Senator Breaux. So as a result of the program on a Federal 
level, you actually lost money on those programs that the State 
used to put into the new program that we created up here?
    Ms. Duke. That is correct.
    Senator Breaux. Now you probably heard when I asked the 
first witness----
    Ms. Duke. Mr. Thompson.
    Senator Breaux. Yeah, Mr. Thompson. Excuse me--the question 
about whether the guidelines were clear enough that that was 
not something that should be done? I mean have you gotten any 
or has our State gotten the information that they are not 
supposed to be doing that?
    Ms. Duke. My local level interpretation of the Federal 
regulations is that what Louisiana has done probably did not 
violate the Federal guidelines because that was the money they 
transferred, although it has been used as overmatch for the 
Federal programs, was State dollars that they used to 
supplement. And I believe that the attitude of the State unit 
is that that is money they can put wherever they need to put 
it.
    Senator Breaux. I am always concerned about technical 
niceties and how you get these things done and still, you know, 
be within the legal parameters, but certainly the policy is 
very clear that this was not intended. I mean we do not make 
the program mandatory. The States don't have to do it, but what 
Congress has said that if you want to do it, we want to 
encourage you to do it, we are going to fund three-fourths of 
it, and you are going to have to fund 25 percent of it.
    And it was certainly not the intent of the Congress to say 
you can get your 25 percent by cutting Meals on Wheels or 
transportation programs or other programs in order to do this, 
because those programs are important. Obviously, the intent was 
to create new dollars, both on a Federal level and on a State 
level. So I am delighted that you have taken the time to come--
I know it has been difficult--to be up with us. But we 
appreciate very much what you have had to say and it is 
obviously something that needs to be looked into further.
    Ms. Betts, thank you very much. Ms. Mintz, your testimony 
was right on target. We appreciate it very much. Thank you, Mr. 
Chairman.
    The Chairman. John, thank you. Suzanne, in your testimony, 
you stressed that caregiver programs should be flexible enough 
to accommodate the varied needs of caregivers and differing 
needs in different regions. As you may know, it was Congress' 
intent to provide just such flexibility in the legislation that 
is now law, that is now being implemented, the Family Caregiver 
Program. At least as much as you understand about it now, did 
we succeed in that flexibility?
    Ms. Mintz. It is my understanding that there is flexibility 
built into the program, but I don't know that the 
implementation is far enough along in order to know exactly 
what is going to happen. I think it is very important that we 
get the input of consumers and caregivers in designing the 
programs and that is one way of ensuring flexibility to meet 
the real needs of real people.
    The Chairman. Well, we may ask you back a year from today 
or something like that because you are right, that question is 
probably a bit premature. As these programs get into the field 
and on to the ground on a State by State basis, but with your 
national organization, I trust you will be watching and 
monitoring, as will we, and we will have you back to ask that 
question again, because we want to create that kind of 
flexibility and at the same time respond to these very real 
needs.
    Caregiver speakers--I should say caregivers speak urgently 
of the needs of respite help, education and support. 
Recognizing that States and situations vary, what do you 
believe are the most urgent two of three needs that family 
caregivers in this program should have at this moment?
    Ms. Mintz. Each family is so different and what each family 
needs at any given time is different, and so I think it is a 
really important to begin with an assessment of each family's 
need, and within the guidelines of the program, there is the 
possibility for care coordination services, helping people 
actually access services, and in the process of assessing 
someone's needs, we would be able to find out exactly which 
ones are most appropriate at that given moment in time.
    It may be respite. It may be training. It may be 
transportation, but for each family it is going to be so 
different that working with a counselor to help each family I 
think is really critical.
    The Chairman. And establishing, at least doing that initial 
assessment----
    Ms. Mintz. Yes.
    The Chairman [continuing.] through that council to 
determine the primary needs?
    Ms. Mintz. Absolutely.
    The Chairman. OK. Deborah, we are not only pleased to have 
you here today, but I am glad you made reference to the report 
that the Older Women's League released last week. I think, you 
know, those are tremendously valuable findings to help better 
understand the profile of a caregiver. In your testimony you 
mentioned quite a large number of ways the Federal Government 
could help family caregivers.
    However, within the limited context of the particular 
family caregiver program being examined here today, what do you 
believe are the two or three most pressing needs of women 
caregivers that this program can be effective in addressing?
    Ms. Briceland-Betts. Certainly, if we listened to the 
testimony that was presented today by the caregivers who are 
here with us, Ms. Tatom and Mrs. Hunter, when families are 
thrust into caregiving situations, frequently they tend to 
think of it as a kitchen table issue. Families are sitting 
there trying to figure out how our family can deal with this 
issue. And information, as I said in my statement, is a source 
of power for families. To think about this as a community 
issue, a social issue, and that there may be services in their 
community to supplement what they as individuals are able to 
bring to this situation.
    And certainly the second thing we heard is training, and 
how is it that we can perform this task within the scope of 
this particular program. Those two things would probably be 
most effective for women.
    The Chairman. OK. Well, I concur with what we understand 
that knowledge of where to go to get it, of course, is going to 
be key, and is it available, and hopefully this program will 
begin to advance that.
    You observed correctly that the burden of family caregiving 
falls disproportionately on women. Do you believe this 
imbalance can or will change over time? Or is it a matter that 
women seem to more readily accept that responsibility and 
therefore our job is to focus the resources not just to women 
but certainly to the dominant caregivers?
    Ms. Briceland-Betts. Well, you know, I think it is a 
culturalization. I think we see some change. We have. There was 
a point in time 20 years ago when 90 some percent or 89 
percent--I think OWL's last caregiving report said 89 percent 
of caregivers are women. So we see some change.
    I think we will continue to see it as predominantly an 
issue for women. I don't know that we should focus public 
policy particularly on the caregiver. I think a point we were 
trying to make is that if we could look at the needs of the 
individual and figure out how to meet those needs in a way that 
some day, Senator, I would be sitting in front of you and he 
decides to stay home and take care of his mother-in-law, 
because there is no economic or other threat, we will have 
achieved what we need in terms of the fact that we have created 
an environment where care, as Susan said, can be given, you 
know, in terms of what the family needs, what the individual 
needs, and not necessarily a societal expectation.
    The Chairman. Well, I think you are absolutely right, 
Deborah. I have a son right now who is a Mr. Mom stay-at-home. 
That is going on in our society today, and it was fascinating 
to me when he approached me to suggest that that was what he 
and his wife might do and could I live with that? [Laughter.]
    He was obviously responding to the cultural difference.
    Ms. Briceland-Betts. Yes.
    The Chairman. And, of course, I have. In fact, I have 
enjoyed that young grandson with him. But that young man may 
someday be sitting in front of this committee talking about the 
needs of caregivers because that seems to be his inclination 
and it has certainly worked well, and we do see those kinds of 
changes going on out there.
    Ms. Duke, of the various eligible services identified in 
the caregiver program, which do you believe to be the most 
important from your perspective?
    Ms. Duke. I think that what will prove to be the most 
important services are the information and assistance piece, 
which at least in Louisiana we are viewing as the access piece 
to get caregivers into the system, and we are in the process of 
increasing the amount that the State will allow us to spend on 
the counseling and education piece so that people like the 
Tatoms can come to us and we can give them that help, and then 
we plan to put the rest of it into various respite services so 
that caregivers can get the break that the program wants them 
to have.
    The Chairman. How do you make that service available or 
allow the public to be aware of it? A website? A 1-800 number? 
What type of outreach so that Mrs. Tatom, Mr. Tatom would know 
where to go and find it relatively easy to find that 
information?
    Ms. Duke. Remembering that the program is not operational 
in Louisiana yet----
    The Chairman. Right.
    Ms. Duke [continuing.] but we have begun our efforts, we 
have a 1-800 number at the area agency regional level and we 
have a publicity program in the planning stages that includes 
brochures, speaking engagements, fliers, whatever it takes.
    The Chairman. In your role as a board member of the 
National Association of Area Agencies on Aging, could you 
identify unmet caregiver needs on a national basis and discuss 
how these new caregiving programs will or will not address 
those needs? In other words, what have we missed? Where are we 
missing?
    Ms. Duke. I think that the flexibility that Administration 
on Aging has given us has really enabled nationwide the State 
units and the area agencies to go out and truly attempt to find 
out what caregiver needs, and I think what we are finding out 
is, as so many people come to you and say, there is not enough 
money. Once programs begin to receive coverage in the media, 
there is an overwhelming response, and what we are also 
learning is that there are so many levels of caregiving; like 
everything else there is a continuum.
    There may be the next door neighbor that takes someone to 
the doctor when necessary and to the grocery store every week, 
and that is a form of caregiving, but we are also finding the 
people with family members at home who do 24 hour care. And we 
are going to have to concentrate on that most concentrated of 
caregiving, but we want to be able to provide help all along 
the continuum because the more we can help at the lower end, 
the less help we may need one day at the more concentrated end. 
But there is a broad spectrum of caregivers out there.
    The Chairman. A point that Suzanne was making. Very true. 
Well, thank you all for your time. As you know, this is a work 
in progress and now that the legislation has been passed, the 
money has been appropriated, we will monitor it very closely in 
the coming year or years as it gets to the ground and begins to 
shape itself based on the flexibilities that the States offer.
    So we thank you, and we have been joined by Senator 
Carnahan, who I would ask to make any opening statement, 
comments, and/or questions of this panel if you wish, Senator.
    Senator Carnahan. All right. Thank you, Mr. Chairman. I 
will just submit my comments for the record and move on to 
asking some questions.
    [The prepared statement of Senator Carnahan and Senator 
Bayh follows:]

              Prepared Statement of Senator Jean Carnahan

    Caring for a loved one who is sick is a 24-hour, seven day 
a week job. It is exhausting, it can be frustrating, it can be 
thankless, it can be lonely.
    So, why do you do it? How do you do it? You do it because 
that person is your mother or father. You do it because that 
person is your husband or wife. You do it because that person 
is your sister or brother. You do it because that person is 
your best friend.
    You do it because you love them. It is not even a question.
    It is one of the most important jobs you will ever do.
    I would like to thank each of today's witnesses for being 
here to share your personal stories. I could be sitting on your 
side of the table, too. For nearly eight years, I cared for my 
own father in my home. My father was diabetic and asthmatic and 
needed help with the most basic tasks of daily living. I know 
what it is like to have to balance your family's daily 
activities with caring for someone else. I had to make sure 
that each of his meals was prepared for him before I left the 
house. While those years were difficult, I would not have 
traded them for anything.
    Just because we choose to care for a loved one doesn't mean 
we don't need help, too. Caring for the caregiver is critical 
for all those involved. I thank Chairman Craig for calling this 
hearing today. I also applaud my colleagues for recognizing the 
needs of family caregivers and passing the National Family 
Caregiver Support Program last year. Allocating $125 million 
for the program is a good first step. But we must do more. I 
support an increase for this important program in next year's 
budget.
    The purpose of today's hearing is to examine how states are 
implementing the new National Family Caregiver Program. While 
the Federal funds were just made available to states on 
February 15, I am pleased to report in Missouri, the new law is 
moving forward smoothly and thoughtfully. The State Division on 
Aging, in coordination with the local Areas on Aging (AAAs), is 
working to ensure that the use of the funds reflects the true 
needs of caregivers. In addition, they are aiming to coordinate 
new services with existing services that the State already 
funds.
    To begin receiving the new funds, AAAs have to develop a 
plan on how the money will be spent. In Missouri, funds will be 
used to services like respite care, counseling, and information 
about the availability of services. Each of Missouri's ten AAAs 
is creating its plan based on the needs of its local community. 
At least three AAAs are set to begin providing the new services 
in May or June 2001.
    I look forward to learning from the panelists and would 
like to recognize them for the important work they are doing. 
It truly makes a difference.
    Thank you.
                                ------                                

                Prepared Statement of Senator Evan Bayh

    Thank you Chairman Craig and Senator Breaux for holding 
this important hearing on the implementation of the National 
Family Caregiver Support Program. As we all know, our nation is 
aging, and if we do not seriously evaluate how to make long-
term care more affordable in the next few years we will find 
ourselves in the midst of a long-term crisis.
    Caring at home for a family member is a responsibility that 
many Americans want desperately to meet. In my state of 
Indiana, there are more than a half million Hoosiers who 
provide informal caregiving in their homes. Additionally, three 
out of every five individuals in Indiana in need of long-term 
care receive their assistance from their family.
    Because of the heroic efforts of caregivers, American 
taxpayers save billions of dollars each year. According to a 
study released by the Alzheimers Association caregivers provide 
$196 billion a year in services free of charge to the 
government.
    The National Family Caregiver Support program was designed 
to provide information to caregivers about available services, 
assist caregivers in gaining access to services, individual 
counseling, support group services, respite services to 
families for temporary relief, and supplemental services such 
as home care and adult day care. Hoosiers who provide at-home 
care will receive much-needed support through this program. The 
state of Indiana has received $2.3 million through the National 
Family Caregiver Support program and is in the process of 
implementing the program.
    During a field hearing I held in Indianapolis, called 
``Making Long-Term Care Affordable,'' I learned about the 
challenges associated with caring for loved ones with 
Alzheimers. Caregivers are heroes, often caring for their loved 
ones before they care for themselves. During that hearing, it 
became evident that caregivers needed both financial assistance 
and emotional support.
    There are emotional strains that come with caring for a 
loved one. I hear about the challenges associated with 
caregiving each day when constituents visit my office. To share 
one example with you, a women from Indiana visited my office to 
discuss Huntington's disease. She cares for her husband who was 
diagnosed with the disease several years ago. In conversation, 
she mentioned that the few days she was away from her husband 
for her trip to Washington would mark the first weekend she was 
not at home caring for him in the last six years. I am hopeful 
that successful implementation of the National Family Caregiver 
Support Program will provide caregivers like her with necessary 
relief.
    In addition to services provided by this program, we need 
to remember there is still a need for financial relief for 
caregivers to make it an economically viable option for 
American families. I have authored a bipartisan bill, S. 464, 
along with Senator Gordon Smith to provide caregivers a $3,000 
tax credit. I know that there is support for this and similar 
proposals and urge the Senate to make legislative strides in 
this area this year.
    I thank Senator Craig and Senator Breaux for holding this 
hearing and allowing the committee to focus on the needs of 
caregivers. I look forward to learning about the next steps 
needed in the proper implementation of the program.

    Senator Carnahan. I want to thank you for the very 
important job that each of you do. I feel like I could be 
sitting on that side of the table with you as an advocate for 
caregiving. I took care of my own father for 8 years in our 
home. He was diabetic and also had asthma and so I had to learn 
how to balance caregiving with the other duties as a mother and 
a wife.
    I had to make sure that he had his meals ready before I 
left the house each day, and although it was a difficult time 
for us at times, I would not trade those years for anything. 
They were very precious years as I look back. But just because 
we choose to care for a loved one does not mean that we don't 
need help too. And certainly you are aware of that very well.
    Mrs. Duke has answered this question, but I wanted to 
address it to our other panelists as well. What are your 
suggestions on how States can get the word out to family 
caregivers on the new assistance that is available?
    Ms. Mintz. Family caregivers do not easily reach out for 
help. Many programs have shown that it takes several years in 
the caregiving process before people reach out, and so I think 
information can't be given out at one point. It needs to be 
continuous. It is like the concept of advertising, you hear it 
over and over again, and so I think information that goes out 
in as many public ways as possible, whether it is PSAs, 
potentially free ads in local newspapers, but I think we have 
to be creative and continuous about how the information does 
get out, because unless that happens the caregivers, except for 
those who find it, are not going to know that it is out there 
and know that it is OK to ask for the help because that is a 
big issue, getting over the fact that you think you are only 
supposed to do this by yourself.
    Ms. Briceland-Betts. I think this is one of the areas, the 
point that Suzanne made about understanding the variety of 
people who are caregivers. Our report talks about how 
caregiving is pretty dramatically different by culture. So 
knowing the culture of the area you are serving and knowing 
what Hispanic and Latino families are feeling about duty and 
caring or reaching out through churches, the difference in the 
Asian population, and even the variety of dialects within Asian 
languages.
    Certainly we can talk about the need for information and 
getting information out, but assuming that we can do some PSAs 
or broadcasts or a website, that doesn't address the cultural 
variety in a given community; it really isn't getting 
information to probably some of the segments of that population 
who need that information most critically. So it also has to go 
to addressing culture.
    Senator Carnahan. OK. Thank you. One other question and 
either one of you could answer this if you would. If there is 
any one thing that you think it would be important for 
government to do in behalf of caregivers, what would that be?
    Ms. Duke. We need more money. [Laughter.]
    Now you know if you give me a chance to say that, it is 
true. We need more money.
    Ms. Mintz. We need to recognize the value of the work of 
caregiving. American society does not tend to value work that 
goes on in the home and in caregiving much of the work goes on 
in bedrooms and bathrooms. And unless we value the work that is 
done by families and by the paid workforce that does provide 
care, I don't see that we are really going to be able to begin 
to address this problem in a significant way.
    Senator Carnahan. In a sense, you are both saying the same 
thing.
    Ms. Briceland-Betts. That is right, I would like to see it 
called unvalued work, both in the paid arena in terms of how 
nursing home and home care aides, their work is incredibly 
undervalued, and there are very few benefits for those women 
who are paid caregivers, but also the informal caregiving that 
we are talking about here today, and in valuing what it is that 
goes on in that home, we are going to be able to create a 
different environment for her down the road when we start as 
policymakers and advocates talking about our retirement system; 
we won't with such affirmation look at her and say you didn't 
plan for your retirement and that is why you don't have as much 
as you should. She was doing unvalued work and we need to 
figure out how to value that.
    Senator Carnahan. Thank you all very much. Thank you, Mr. 
Chairman.
    The Chairman. Thank you, and I mean that most sincerely. 
You bring valuable testimony. As I said, we will follow this 
program and see where we can broaden it, improve it. It is a 
fascinating dimension of our culture and an important one. And, 
of course, as this committee knows, we have an aging country. A 
good many more citizens will live better lives longer, but that 
also means there will be more responsibilities out there in the 
levels of care that they will need, and most of those 
responsibilities as we already know will fall on families.
    So where we can assist, we not only lower the overall cost 
to society, but we probably, for those who can stay in their 
homes longer, provide the kind of life that they would want to 
live, or assist them in the kind of life that they would want 
to continue to live. So we thank you very much and appreciate 
your time here.
    Ms. Mintz. Thank you.
    Ms. Briceland-Betts. Thank you.
    Ms. Duke. Thank you.
    The Chairman. The committee will stand adjourned.
    [Whereupon, at 11:25 a.m., the committee was adjourned.]
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