U.S. GOVERNMENT PRINTING OFFICE

73–599 PS WASHINGTON : 2001

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

(

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

CONRAD BURNS, Montana

RICHARD SHELBY, Alabama

RICK SANTORUM, Pennsylvania

SUSAN COLLINS, Maine

MIKE ENZI, Wyoming

TIM HUTCHINSON, Arkansas

PETER G. FITZGERALD, Illinois

JOHN ENSIGN, Nevada

JOHN B. BREAUX, Louisiana

HARRY REID, Nevada

HERB KOHL, Wisconsin

RUSSELL D. FEINGOLD, Wisconsin

RON WYDEN, Oregon

EVAN BAYH, Indiana

BLANCHE L. LINCOLN, Arkansas

THOMAS R. CARPER, Delaware

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)

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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.

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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

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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.

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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.

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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.

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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,

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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 pro- gram 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

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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 motherin-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.

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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.

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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-fitsall 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.

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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

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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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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 shortterm care costs between $75 and $150 a day. Available beds in

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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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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 proVerDate 11-MAY-2000 09:51 Aug 30, 2001 Jkt 000000 PO 00000 Frm 00032 Fmt 6633 Sfmt 6633 C:\DOCS\73599.TXT saging1 PsN: saging1
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gram. 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,

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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

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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.

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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.

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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 threequarters 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

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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

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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

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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 urVerDate 11-MAY-2000 09:51 Aug 30, 2001 Jkt 000000 PO 00000 Frm 00096 Fmt 6633 Sfmt 6633 C:\DOCS\73599.TXT saging1 PsN: saging1
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gent 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?

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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

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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

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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

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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

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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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