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93–173 PDF 2004

S. HRG. 108–436

FAMILIES HELPING FAMILIES:

TAX RELIEF STRATEGIES FOR ELDER CARE

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE

ONE HUNDRED EIGHTH CONGRESS

SECOND SESSION

WASHINGTON, DC

FEBRUARY 10, 2004

Serial No. 108–28

Printed for the use of the Special Committee on Aging

(

SPECIAL COMMITTEE ON AGING 

LARRY CRAIG, Idaho, Chairman 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

MIKE ENZI, Wyoming 

GORDON SMITH, Oregon 

JAMES M. TALENT, Missouri 

PETER G. FITZGERALD, Illinois 

ORRIN G. HATCH, Utah 

ELIZABETH DOLE, North Carolina 

TED STEVENS, Alaska 

RICK SANTORUM, Pennsylvania 

JOHN B. BREAUX, Louisiana, Ranking 

Member 

HARRY REID, Nevada 

HERB KOHL, Wisconsin 

JAMES M. JEFFORDS, Vermont 

RUSSELL D. FEINGOLD, Wisconsin 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

THOMAS R. CARPER, Delaware 

DEBBIE STABENOW, Michigan 

LUPE WISSEL, Staff Director 

MICHELLE EASTON, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Larry Craig .......................................................... 1

PANEL OF WITNESSES

Trudy Elliott, Family Caregiver and Home Health Nurse, Coer d’Alene, ID ..... 2

Sandy Markwood, Chief Executive Officer, National Association for Area 

Agencies on Aging, Washington, DC .................................................................. 8

Gail Gibson Hunt, President and Chief Executive Officer, National Alliance 

for Caregiving, Bethesda, MD ............................................................................. 21

Flora Green, The Senior’s Coalition, Washington, DC ......................................... 26

Richard Teske, Washington, DC ............................................................................. 31

APPENDIX 

Prepared Statement of Senator Gordon Smith ..................................................... 45

(III) 

(1)

FAMILIES HELPING FAMILIES: TAX RELIEF 

STRATEGIES FOR ELDER CARE 

TUESDAY, FEBRUARY 10, 2004 

U.S. SENATE, 

SPECIAL COMMITTEE ON AGING, 

Washington, DC. 

The committee met, pursuant to notice, at 10:10 a.m., in room 

SD–628, Dirksen Senate Office Building, Hon. Larry E. Craig 

(chairman of the committee) presiding. 

Present: Senator Craig. 

OPENING STATEMENT OF SENATOR LARRY E. CRAIG, 

CHAIRMAN 

The CHAIRMAN. Good morning, everyone. The U.S. Senate Special 

Committee on Aging will be convened. I apologize for my tardiness, 

but I was over-booked this morning, or I should say double-booked. 

I do pride myself starting hearings on time, but I was trying to 

help figure out if we can pass a national energy policy this year. 

So, again, let me welcome all of you. I would like to thank our 

witnesses for joining us today on a growing issue of national importance, the issue of family caregiving. Today’s hearing will highlight 

the stress and financial challenges faced by family caregivers of 

aging and vulnerable relatives, and shine a light on tax relief strategies for relieving the financial burdens freely undertaken by many 

adult children. 

Over the past few years, the Aging Committee has held several 

hearings on different facets of the growing long-term care crisis in 

our country. A major concern of mine is that the Federal long-term 

care policy mix may not have the right incentives, especially when 

it comes to the tough choices faced by families who want to care 

for their aging and vulnerable relatives. 

One extraordinary strength of our long-term care system is that 

families, not government, provide 80 percent of the long-term care 

for older persons in the United States. That is a phenomenal figure. It speaks well for our people. 

The U.S. Administration on Aging reports that about 22 million 

people serve as informal caregivers for seniors, with at least one 

limitation on their activities of daily living. These caregivers often 

face extreme stress and financial burden, especially those that we 

call the sandwich generation. Sandwich generation, many of you 

know—you have heard the term—refers to those sandwiched between caring for their aging parents and caring for their own children. It is difficult for families to balance caring for children and 

2

saving or paying for college, while at the same time struggling with 

financing care for their aging parents. 

For many families, the nursing home is the only solution for providing long-term care, and that can be a good choice. For other 

families, keeping aging or vulnerable relatives in their own home 

or in the caregiver’s home makes sense. That is why I am interested in promoting tax relief strategies for families who face high 

stress and financial expenses as they care for their aging and vulnerable parents outside institutional arrangements. 

Tax relief strategies should not preclude seniors or those near retirement from purchasing long-term care insurance. Certainly, the 

package that we are now working on that was provided in the 

Medicare prescription drug bill and a variety of alternatives could 

well, through health savings accounts, allow the financing of longterm health care. We hope it becomes something that all families 

and individuals look at as a reasonable and responsible option. 

Tax relief for families’ caregiving expenses should be provided for 

high-risk seniors who cannot qualify for long-term care insurance 

policies. This is a national issue requiring a flexible national response to ensure seniors and their families have high-quality 

choices. This hearing will help the guide the Congress in designing 

the right policy mix, I hope. 

With that preface, let me say how pleased I am once again to 

welcome all of you to our hearing today. I look forward to your testimony. We are going to treat you all as one panel, and so we will 

ask that all of you give your testimony and then I will ask questions, and some of those will be the types of questions that all of 

you might want to respond to. 

So with that, let me ask our first panelist, Trudy Elliott—I guess 

I would call her a true expert on this issue. Trudy is a family caregiver and home health care nurse from my State of Idaho, living 

in the north end of our State. 

So, Trudy, welcome to the committee. Why don’t you proceed? 

Thank you. 

STATEMENT OF TRUDY ELLIOTT, FAMILY CAREGIVER AND 

HOME HEALTH NURSE, COER D’ALENE, ID 

Ms. ELLIOTT. Thank you, Senator Craig. I would like to thank 

the committee and Senator Craig for inviting me to come and tell 

my story. 

When I was contacted, my thought was this is a story that needs 

to be told and the fact that it is not a unique story. My hope at 

the conclusion of my testimony today is that you will visualize a 

different future for our senior population, as well as for the family 

caregivers, through the congressional movement which you have 

suggested, and recognizing not only the emotional strain, but as 

well as far as the financial strain which is occurring. 

How do I possibly convey the feelings that I have had in the last 

4 years, feelings of frustration, concern, honor, with a lot of the 

multiple fragmented thoughts that have gone through my head as 

I am sitting in different arenas with my parents and my sister as 

well? 

3

My first challenge of my middle years, which is an interesting 

concept to sit here and talk about my middle years—I am not sure 

what that means. 

The CHAIRMAN. They are really quite comfortable. 

Ms. ELLIOTT. I am getting quite used to them. 

Where do I start? Imagine being at a family dinner with your 

mother and father, whom you have seen very frequently, and having your father pull you aside and say, ‘‘I need help. What am I 

going to do? There is something wrong with your mother.’’ I am 

looking at him going like what? He said, ‘‘well, she can’t write, she 

can’t drive her car. I don’t know what I am going to do. She is up 

all night. I can’t get any sleep.’’ The promise that they made together was that they would never, 

ever put each other in a nursing home, which isn’t a bad thing, but 

many of that generation promised that they would be together forever. In the 50 years that they had been married, I think maybe 

they had spent 2 to 3 days apart. One of those was to be with me 

when my third child was born. So you can see that the impact on 

these 70- and 80-year-old people would be more than just an illness. 

They had both been very modest all of their lives, hard-working 

people, had saved money and had never wanted to be a burden to 

anyone. So they put away their wonderful retirement nest that 

they would get to enjoy. About the time that they were able to 

enjoy that, my mother developed Parkinsonism with a Lewy body 

dementia, which was a very rapidly progressing illness that took 

her from being an active Assessor of Garfield County to a person 

who needed total care. 

In this time, my father was attempting to be a caregiver, a role 

which he had not been trained to because my mother had been the 

caregiver all of their married lives. So there was a real transition 

for our whole family. Since that day, probably 4 or 5 years ago, I 

have been with my mother and my father in multiple arenas, in 

and out of the hospital, in and out of the skilled nursing facility, 

finally with the last part of her life in an assisted living facility, 

small assisted living facility, which was able to care for her up 

until the day she died, along with my supervision. 

Part of my role with my parents seems to be their advocate, and 

I feel that that is a role that I am even playing today being here 

in this hearing. My mother lost her ability to speak, and it is interesting that when people lose their ability to speak, people also 

think that they have lost their ability to say what it is that they 

want and what they don’t want. 

So my role with my mother was to be her advocate in these arenas to make sure that her needs were met, which she had defined 

to me years ago in her advance directive. Her care initially started 

in our home and then progressed to these, and because of my parents living with very modest means we were having to pay for the 

caregiver out of their retirement nest. I don’t think anybody has 

any concept of how rapidly that will disappear. 

Because of my mom’s illness, also it took away the ability of my 

parents to care for themselves in their home and I found myself 

having to pull on the resources that I had learned throughout my 

life in working as a home care nurse. Many times, people would 

4

ask me why I wanted to play that part? I can’t imagine not. My 

parents were there for me. I can’t imagine not playing that role, 

even though it was a very difficult role to play. 

My second challenge of my middle years was the fact that my 

sister was diagnosed with metastatic cancer during this time when 

my mother was also ill. Even though it wasn’t the sandwich generation, we experienced what the impact of her care was on her 

son, who was 39. 

I am sorry. That is still a fairly emotional time period for me. 

How far can one person be spread? Much further than you can 

ever imagine. Actually, after a continued fight to be a survivor, my 

sister died in our home, which was an honor for all of us. Our family had been presented also for my mother’s final journey, which 

had occurred approximately 10 days before my sister had died in 

our home. What an honor for me to be there for two very important 

people in my life. 

The third challenge of my middle years was my father, who is 

now 82 years old, and it is an ongoing thing that we are incurring 

with him today as far as his care environment. I am sure that this 

Act that is being suggested will be very much a financial relief for 

families such as myself who have experienced the sandwich generation. 

Thank you. 

[The prepared statement of Ms. Elliott follows:]

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The CHAIRMAN. Trudy, thank you. That is tremendously powerful 

testimony, and I think you said it well at the beginning, reflective 

not just of your experience, but thousands like you across the country who feel that responsibility and love to do what you have done. 

Thank you. 

Now, let us move to Sandy Markwood. Sandy is President and 

CEO of the National Association of Area Agencies on Aging. Sandy, 

welcome to the committee. 

STATEMENT OF SANDY MARKWOOD, CHIEF EXECUTIVE OFFICER, NATIONAL ASSOCIATION OF AREA AGENCIES ON 

AGING, WASHINGTON, DC 

Ms. MARKWOOD. Thank you so much for having me. Good morning, Chairman Craig. My name is Sandy Markwood. I am the Chief 

Executive Officer of the National Association of Area Agencies on 

Aging, and I really want to thank you for inviting me here today 

to talk about family caregiving. 

I am pleased to be here today to represent the Nation’s area 

agencies on aging, and also the Title VI Native American aging 

programs, whose fundamental mission is to support people to live 

in their homes and in their communities with dignity for as long 

as possible. 

The 655 area agencies on aging and the 232 Title VI aging programs are dedicated to enhancing the quality of life of older Americans and providing support to their families. In this way, they provide supportive services and a whole range of preventive services. 

They are the single point of entry and information for older adults 

and their caregivers to find out about the range of communitybased services that exist to support older adults and their caregivers. 

These services include congregate meals, in-home meals. They 

also include personal care, chore services, the nursing home ombudsman program, transportation, and senior centers. But critically, since the reauthorization of the Older Americans Act in 2000, 

it also includes a whole range of family support for caregivers. 

Through working with caregivers, we know that family caregivers 

are the heart of the long-term care system in this country, and they 

are also the backbone of it. 

Uncompensated care by family members makes it possible for 

millions of older adults with long-term care needs to avoid costly 

and often unnecessary and unwelcome placement in formal care 

settings. Recent estimates have valued the services provided by 

family caregivers at $257 billion a year. That is an astounding figure. 

Caregiving, however, also has a cost to the caregiver, though 

many would not want to admit it. Numerous studies have shown 

that caregiving exacts a great financial, emotional and physical toll 

on caregivers. Many caregivers forgo job advancements, reduce 

their hours on the job, cut back to part-time, take temporary or extensive leaves of absence to be able to stay home to care for family 

members. These actions result in lost compensation, diminished 

contributions to employee-sponsored pension programs, as well as 

limitations on employee benefits. Additionally, caregivers often deVerDate 0ct 09 2002 14:10 May 05, 2004 Jkt 000000 PO 00000 Frm 00012 Fmt 6633 Sfmt 6633 C:\DOCS\93173.TXT SAGING1 PsN: JOYCE
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plete their own family personal savings to be able to try to compensate for that loss of income. 

Caregiving also has associated costs. As Trudy mentioned, direct 

expenses incurred by family caregivers include the purchase of prescription drugs, durable medical equipment, home modifications, 

and physical therapy for the care recipient. These all have a cost. 

It is a cost that caregivers welcome to pay, but sometimes it adds 

up. 

There is no doubt that caregivers, many of whom are raising children, working full- or part-time and are facing challenges of aging 

themselves, are stressed with multiple responsibilities and they 

need help. It is only right that those that give help should receive 

help. 

Congress took the first steps in recognizing both the tremendous 

contributions of family caregivers and the need to provide them 

with some critical relief by including the National Family Caregiver Support Program in the reauthorization of the Older Americans Act in 2000. 

This program provides critically needed assistance to families as 

they struggle to provide help to loved ones. It builds upon services 

that already exist in the community through the Older Americans 

Act, but it expands on it and provides value-added services for 

caregivers. 

In the 4 years since its establishment, appropriations for this program have gone from $125 to $129 million. While we appreciate 

the yearly increases, given the vast numbers of family caregivers 

and the extent of the need, I would be remiss in my role as an advocate if I didn’t draw attention to the fact that the program still 

is underfunded. 

These dollars, though they are augmented by the State and local 

level, are stretched thin. AAAs report that they work very hard to 

be able to provide the needed services. The most used service is 

respite care, and that is also the most expensive service. Respite 

has been able to provide proven care to alleviate, at least temporarily, some of the physical and emotional stresses related to 

caregiving. It also helps to delay expensive institutionalization. 

However, because of the cost, caregivers often need more respite 

than they can afford privately, and they also need more respite 

than AAAs are able to provide with competing service needs and 

limited funding. 

Additional services provided by AAAs in Title VI aging programs 

under the National Family Caregiver Support Program include 

supportive and supplemental services, such home modification, 

transportation and chore services. Given the flexibility of this program, what area agencies have been able to do is to provide small 

sums of money to caregivers to be able to help them get chore services, personal care, even to get assistance in mowing the lawn. 

These small services can make the difference between the exhaustion level of a caregiver and their ability to be able to keep somebody in their home or reaching a crisis level where they feel like 

they need institutionalization. 

In saying this, what we found out through this program, and 

thousands of examples of wonderful services provided at the community level, is that the needs of caregivers are unique, but they 

10

all have needs and they all need assistance. They need emotional 

assistance, they need physical assistance, and they need financial 

assistance. 

Caregivers truly are the heart of the long-term care system and 

we as a Nation must do more to address the emotional, physical 

and financial challenges associated with caregiving. The National 

Family Caregivers Support Program was a significant first step in 

providing some relief and support to caregivers, and we look forward to working with you and your committed staff to ensure that 

the passage of the SECURE Act takes a further step forward toward providing needed financial relief to this selfless population. 

[The prepared statement of Ms. Markwood follows:]

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The CHAIRMAN. Well, Sandy, thank you very much. I think you 

have broadened the scope of the picture of this issue very effectively and I appreciate that for the hearing record. 

Now, let us turn to Gail Hunt. Gail is President and CEO of the 

National Alliance for Caregiving. Gail, welcome to the committee. 

STATEMENT OF GAIL GIBSON HUNT, PRESIDENT AND CHIEF 

EXECUTIVE OFFICER, NATIONAL ALLIANCE FOR 

CAREGIVING, BETHESDA, MD 

Ms. HUNT. Thank you, Senator Craig, for the opportunity to provide information on family caregiving. In light of your interest in 

helping older people to stay in the community and help caregivers 

in their effort to continue caring for relatives and friends as long 

as possible, I thought I would focus on some of the latest data on 

caregiving. Who are the family caregivers and what do we know 

about them, and what impact does caregiving have on their lives? 

First, some basic data on family caregivers. Nearly a quarter of 

U.S. households are involved in family caregiving. This number is 

important because it shows how involved family members are in 

caring for one another and how large an issue family caregiving is 

in our country. It is a myth that Americans abandon their older 

relatives to nursing homes. Approximately 80 percent of the care, 

as you mentioned, for older people is done by family and friends. 

The profile of the family caregiver is a 46-year-old baby-boomer 

woman who is married and works and cares for her 77-year-old 

mother who lives nearby. The caregiver spends an average of more 

than 20 hours a week providing care, and caregiving typically lasts 

more than 4 years. 

There are three trends I wanted to mention. Despite the fact that 

we think of most caregivers as women—and in the past nearly 80 

percent of them were—there is evidence that this trend is changing. The latest research shows that nearly 4 in 10 family caregivers 

is a man, and in the workplace there is nearly an even gender 

split. 

This issue is gaining more visibility because employers see greater impact on their bottom line when both male and female come 

in late, leave early, take leaves of absence or early retirement. 

Over half of working caregivers of both sexes have to modify their 

work schedules. 

Our recent Sons at Work study indicated that men were as likely 

as women to report that they were the primary caregiver and that 

caregiving had negative consequences on their work. Men are much 

more likely to modify work travel and less likely to speak with either their coworkers or their supervisors. Less than half the men 

in the study had spoken to their supervisors about their elder care 

responsibilities. One quote from the study: ‘‘Caring for a sick child 

is an acceptable reason to be taking off. Caring for a sick older relative is not.’’ In terms of services they would use, more men than 

women said they would like geriatric care management services, 

along with help with legal, financial and insurance issues. 

Another issue is caregiver health. Caregivers sometimes sacrifice 

their own health in their focus on the health of their aging relative. 

Their desire to be a good daughter or a good husband and the 

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giver can make them overlook good health care prevention, like immunizations and regular physician check-ups. 

The latest data show that one-third of those providing the most 

intense caregiving—that is personal care for 40 hours a week or 

more—report their own health as only fair or poor. This is in contrast to 12 percent of caregivers with the least level of burden. 

In addition, one-third of these Level 5 caregivers doing the most 

intense caregiving report that their health has become worse as a 

result of caregiving. Fifteen percent of caregivers as a whole report 

caregiving is somewhat or very much a physical strain, and over 

a third report it is very stressful. We can definitely see the issue 

of caregiver health becoming a public health issue as the numbers 

of caregivers grow and the duration of caregiving lasts 4 years and 

longer. 

Finances: Since 1997 we have seen a 30-percent increase in out- of-pocket spending by caregivers, from $171 a month on home 

modifications, groceries and other financial support, to $221 a 

month in 2003, or $2,700 a year. We know family caregivers often 

speak about the financial hardship caregiving can place on a family—decisions they have to make when choosing to help their parents or their kids, sometimes sacrificing vacations, college and 

other things so they can pay for long-term care. While only 1 in 10 

caregivers as a whole says that caring for a family member represents a significant financial hardship, nearly one-quarter of black 

caregivers do. 

Paying for long-term care can be viewed as especially hard because so few people anticipate they will have to pay for it. Most 

people, baby-boomers and older Americans alike, think that Medicare will cover long-term care expenses, and they also have little 

idea how expensive it is. 

Surveys of America’s public perceptions of long-term care costs 

consistently show people believe they will not need caregiving when 

they get old, and if they do, it will not cost that much. It is only 

when families actually face caregiving that they realize the cost in 

terms of emotional stress, money, and even the toll on their own 

health. 

Thank you. 

[The prepared statement of Ms. Hunt follows:]

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The CHAIRMAN. Gail, thank you very much for those important 

observations. I think the spread of knowledge as to the extent of 

the costs and the commitment of America’s families is an important 

part of the record. 

Now, let me turn to Flora Green, better known as Grandma 

Green. 

Ms. GREEN. I deserve it. 

The CHAIRMAN. Yes, you do, Flora, and we appreciate that. 

She is representing The Seniors Coalition. Welcome to the committee again. 

STATEMENT OF FLORA GREEN, THE SENIORS COALITION, 

WASHINGTON, DC 

Ms. GREEN. Thank you. Mr. Chairman, members of the committee, I am Flora Green, the national spokesperson for The Seniors Coalition. On behalf of our organization’s 4 million members 

and supporters, I would like to thank you for convening this hearing and for your continued work on behalf of American senior citizens, particularly those in need of long-term care services and their 

families, who donate their home, their time, financial resources to 

care for them. 

I am honored to have been invited to testify this morning and 

emphasize our support for the passage of the Senior Elder Care Relief and Empowerment, or SECURE, Act, and I wish to thank you 

for the opportunity to do so. 

According to the National Center on Caregiving, 12.1 million 

Americans require assistance to carry out the very simple, everyday activities that you and I may take for granted. 6.4 million of 

these Americans are age 65 and over, and nearly two-thirds of 

these seniors depend upon family members as their only source of 

help. 

Family caregiving is an essential and often overlooked component of long-term care in this country. Approximately 7 million people spend an average of 17.9 hours per week caring for their elderly 

family members. In addition, the National Alliance for Caregiving 

reported that over 64 percent of these caregivers have full- or parttime jobs, and many are forced to take decreased hours and unscheduled leave in order to fulfill their responsibility as caregiver. 

These individuals sacrifice much in order to provide the noble 

and compassionate service of caring for their elderly family members, so they deserve our full support. Supporting these caregivers 

does not mean utilizing more subsidies for institutional care. 

Today, 79 percent of those seniors who require long-term care services prefer the dignity and security that comes with living in their 

own homes, with family, or in a community setting rather than 

being institutionalized. 

I recently spoke with Patricia McCarthy Michel, in Florida, who 

told me her personal story involving her mother who became very 

ill with Hodgkin’s lymphoma in December 2002. She told me that 

her mother had always been very independent, taking care of all 

her personal and physical needs, up until this point. By March 

2003, it became necessary for her mother to move in with her. Her 

mother only lived until May 1 of that year. In that short timeframe 

of less than 2 months, over $2,000 in expenses were incurred. 

27

These expenses included unreimbursable costs by Medicare/HMO 

and home health visits that were necessary to assist her. 

In addition to Patricia, I also spoke with a Mr. Brown, who is 

in desperate need of help in caring for his 85-year-old father who 

has a leg amputated above the knee, a major stroke in 2001 and 

several heart attacks that left him virtually bed-ridden. Mr. Brown 

informed me that he is caring for his father 24 hours a day, 7 days 

a week, bathing him, preparing and administering his medications, 

feeding him and providing wound care and physical therapy. He 

made a touching statement. He said this has been a labor of love, 

but it is becoming a labor. This man needs help. 

These are just stories of everyday, humble Americans who are 

faced with the unavoidable burden of caring for loved ones, a burden which they must add to their regular everyday responsibilities. 

That the social group to which these individuals belong may include some with limited means simply adds to the problem which 

this legislation is designed to address. 

On behalf of The Seniors Coalition and its 4 million members, I 

strongly urge you, Mr. Chairman and members of this distinguished committee, to stand in support of the SECURE Act and 

urge the Senate to move forward with the proposed law. 

Thank you so much. 

[The prepared statement of Ms. Green follows:]

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The CHAIRMAN. Well, Flora, thank you for that testimony. We 

are pleased that The Seniors Coalition can endorse the SECURE 

Act. I think that piece of legislation has some real opportunity. I 

think it addresses a variety of needs. But as I said in my opening 

statement, it is one of a lot of pieces that need to come together 

to fit the different circumstances of situations that people find 

themselves in out there. Thank you. 

Now, let me turn to Richard Teske. Richard is a long-term care 

expert and former Health and Human Services official. 

Richard, thank you for being with us. Please proceed. 

STATEMENT OF RICHARD TESKE, WASHINGTON, DC 

Mr. TESKE. Mr. Chairman, it is an honor to be invited to address 

this committee on family caregiving. I commend the committee for 

exploring the largest problem facing this country that attracts virtually no public policy attention. For too long, our health programs 

were run primarily for the providers, payers and the government. 

Patients came last. It is time for a patients-first approach. 

The goal of providing incentives to keep families together is admirable. The use of tax credits to provide incentives for non-institutional long-term care is headed in the right direction. Medicaid is 

the Federal and State governments’ primary long-term care program. But according to Wilbur Cohen, President Johnson’s last 

HEW Secretary, Medicaid’s 1965 passage was an after-thought. Inclusion of a nursing home benefit was thought to be a rounding 

error. Instead, it created an industry. Today, Medicaid covers twothirds of all nursing home patients and pays half of the Nation’s 

nursing home costs. In the 1980’s, home- and community-based 

waivers were supposed to save nursing home money. Nursing home 

costs continued to increase, home health costs exploded, and we 

created another industry. 

I would recommend that we learn from these experiences. We 

need to proceed carefully, lest we again suffer huge unintended 

consequences. That is why my first recommendation is for you to 

consider a demonstration project rather than to launch a tax credit 

program nationwide. 

That is also why I applaud President Bush’s inclusion in his fiscal year 2005 budget of $256 million over 5 years for three demonstration projects promoting home care. The budget also proposes 

$500 million for a demonstration for current institutionalized patients to return to their communities. 

This is the third year that total Medicaid expenditures will exceed Medicare expenditures. This explosion in costs is the primary 

reason States are facing a fiscal crisis. The recession essentially 

caused the expansion of Medicaid enrollees from 40 to 50 million 

in the past 5 years. Most were children and adults who, with economic recovery, hopefully will return to the workforce. However, 

while less than one percent of the growth is due to the elderly, 

blind and disabled, they were responsible for 60 percent of the cost 

increase. 

It is imperative that we understand the demographic and services matrix. Adults and children are 72 percent of Medicaid enrollees, but represent only 27 percent of the costs and only 6 percent 

of home health costs. By contrast, elderly and disabled constitute 

32

27 percent of the enrollees, but two-thirds of all expenditures and 

a whopping 93 percent of home health care costs. 

With the retirement of the baby-boom generation, we can expect 

a possible quadrupling of long-term care costs in the next 15 years. 

This would bankrupt every State in the Union. This is why we 

need to model a non-institutional tax credit so that many people 

will have the incentive to use their own resources rather than rely 

on Medicaid for their private long-term care insurance. 

I would recommend a higher deductible with a more catastrophic 

coverage focus. The deductible would be covered possibly by private 

long-term care insurance or HSAs or maybe Medicaid. But with 

nursing home costing approximately $60,000 per year, home health 

$50,000 and assisted living $40,000, we must get this detail right 

or we will only add to the States’ plight. 

Should the tax credit be refundable? I don’t know, but there is 

a unique problem to consider. If the goal is to keep families together, most seniors wouldn’t qualify for a pure tax credit. This is 

because a majority of seniors have so little or no income; they pay 

no income taxes. Perhaps for this group, a refundable tax credit 

could be considered. In addition, the majority of disabled are under 

65. I don’t know if your plan intends to eventually include them, 

but they would be difficult to exclude, given the tax credit’s goals. 

By using a tax credit rather than the existing entitlement structure, you may introduce consumer choice options. Presently called 

cash and counseling, Florida, New Jersey and Arkansas has successfully used this to reform the services for disabled enrollees. 

With the disabled potentially the largest and costliest population, 

this approach needs to be considered. 

Another advantage of the tax credit approach is that it avoids 

the inequities of the Federal match. In 1995, the Government Accounting Office called the Federal match a complete failure. 

Another problem that must be addressed is induced demand. 

With 80 percent of all care given to people with two or more ADLs 

receiving the care from unpaid caregivers, this demand will be unleashed. Also, since this care is usually provided by a family member, care shifts from the family to professionals. That may be good, 

but it should be noted. There is one last but crucial advantage to 

tax credits. The CMS won’t necessarily have to administer it. 

I will stop at this point and look forward to your questions. 

Thank you again for permitting me to address the committee. 

[The prepared statement of Mr. Teske follows:]

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The CHAIRMAN. You have broadened the perspective of this hearing substantially, Richard. Thank you very much. I think that is 

provocative testimony. 

Trudy, you have obviously expressed the experience you felt or 

had both with a mother and a sister, and now a father. To what 

degree would a tax credit have enhanced the support you have already provided? What would that have offered to you and your 

family? 

Ms. ELLIOTT. I think it would have been a true benefit because 

we had the emotional as well as the financial concern with nowhere to go to get relief. One of the things that I thought was interesting with the comments about Medicaid is that that was a real 

encouragement from the very beginning when my parents became 

ill, was to spend down everything they had so that then Medicaid 

could take care of them, which was a very negative concept for our 

family. Our family had made a commitment to take care of them, 

so for us to immediately try to spend down so Medicaid could take 

care of them was not the mission of our family. So this would be 

a very positive thing for a family. 

The CHAIRMAN. Well, that is so well-spoken. I don’t know how 

many times I have had families tell me just that. They are caught 

in this phenomenal personal conflict as a result of a need for assistance, and yet at the same time needing, if you will, to spend down 

resources to cause a qualifying situation to exist. 

You obviously with your professional experience assist others in 

caregiving. Would you say that from what you have seen based on 

that experience this legislation that we are talking about, a tax 

credit, would be helpful to a broad cross-section of citizens? 

Ms. ELLIOTT. Yes, it definitely would. My story, as I emphasize, 

is not unique. In my job that I do as far as a director for home care, 

I hear this so many times throughout the day: What are we going 

to do? It is definitely a good starting point, and when you said it 

is multi-faceted, it is a beginning to help families. 

One of the family members that contacted me just last week 

after I was contacted to do the testimony is a primary caregiver for 

his wife with MS, and he is older and he said, isn’t there anywhere 

I can go to get a tax credit, which I thought was interesting. I had 

not had anybody ask me that question, so it must be a vital thing. 

The CHAIRMAN. Thank you very much. 

Sandy, you indicated in your testimony that there is a long waiting list for respite support at the local area agencies on aging. How 

would extending a tax credit for caregiving reduce the waiting list, 

or would it? 

Ms. MARKWOOD. Well, I think that at this point the area agencies on aging use their National Family Caregiver Support Program monies to be able to provide that respite care. That is where 

the waiting lists are. If caregivers had some resources on their 

own, they could supplement by being able to provide some private 

respite care. 

It has just become very clear through this program how important that respite component is. Sometimes, people just need a little 

relief, a couple of hours a day every once in a while to be able to 

recharge. As Gail said, the emotional and the health burdens that 

caregiving impose on caregivers is something that they need relief 

37

from, and respite provides an opportunity. A tax credit would be 

able to afford caregivers to be able to search out other than public 

options to be able to get that respite need met. 

The CHAIRMAN. Sandy, you heard Richard’s statement that action causes reaction, and it does and there is no question about it. 

If what I am proposing were to become law, it would create new 

and different dynamics. 

Do you agree with Richard in some of what he commented on as 

it relates to how those dynamics might begin to shape themselves? 

Ms. MARKWOOD. I don’t see that the National Family Caregiver 

Support Program has created a new industry of services that is 

looking to make money on caregivers. What I see is that the programs and the services that have been provided under the National 

Family Caregiver Support Program have enabled people to do what 

they want to do, which is to provide care for their loved ones at 

home. 

A tax credit would just be an added benefit to be able to help 

them do what they want to do already. I don’t see it as encouraging 

people to look for public resources versus using their own private 

resources. I think the issue becomes oftentimes, as we discussed, 

the private resources get exhausted. The private resources are 

stretched too thin. Any financial assistance to be able to help them 

augment services that they already get or to be able to augment 

the care they are already providing is just the right thing to do. 

The CHAIRMAN. Richard, I used some of your comments in relation to this question. Would you wish to respond at this time on 

this issue? 

Mr. TESKE. Well, we have already heard on this panel testimony 

about how families spend down and get rid of their assets, and that 

is a huge problem in the Medicaid program. Only 5 percent of the 

people have long-term care insurance, but half the people get their 

long-term care in nursing homes from Medicaid. It is way out of 

proportion. Basically, the middle class is using Medicaid. 

An incentive using a tax credit to keep the middle class in the 

middle class, not spending down, would be helpful. The present tax 

laws, however, don’t permit that. The incentive is to spend down. 

There is a whole huge industry of financial advisers in this country 

that will help you within maybe 3 months to get rid of your assets 

and go into the nursing home under Medicaid. 

Congress passed laws in the early 1990’s to go after the financial 

advisers, make penalties, go after the assets of the senior citizen, 

the so-called ‘‘get granny’’ laws. One problem is they are never enforced because politically they are poison. So we have to find incentives and this tax credit is a step in that direction for people to remain middle-class, use their assets and encourage them not to drop 

into the Medicaid program. 

The CHAIRMAN. Thank you. 

Maybe it was you—yes, it was you, Trudy, who said you had 

been contacted by a gentleman in relation to assisting his wife and 

was there a possible tax credit. 

I think it goes, Gail, to expanding on your testimony a bit as it 

relates to the number of men who are now providing care. I see it 

in working with seniors and the elderly in my State that oftentimes 

the husband is very quietly taking care of his wife in a relationship 

38

that, as you have said with your parents, was so binding for so 

long, and is phenomenally burdened by that situation. 

Would you elaborate on that new statistic that you are bringing 

into this discussion? If I were to have been asked the question 

which group is the larger of the caregivers, I would say, well, it is 

obviously the woman, and that is what our statistics show and that 

is where most of our stories, or at least experiences, demonstrate. 

Could you comment on that? 

Ms. HUNT. Well, it is still true that the majority of caregivers are 

women. 

The CHAIRMAN. It is. 

Ms. HUNT. That is definitely right; as I said, the profile of the 

46-year-old baby-boomer woman. But we are seeing a shift just 

since 1996 when we did the national caregiver survey. It was 72.5 

percent were women, and now 60 percent are women. So we can 

see there is a significant drop just in that time, a shift. 

Part of it is more women in the workplace, so their husbands are 

sharing in the responsibility of being caregivers. Also, because of 

divorce, it is really tough to get the wife to take care of the exmother-in-law. She is not going to do that. 

The CHAIRMAN. More than likely not. 

Ms. HUNT. Exactly, exactly. Well, maybe you have to pay her to 

do it or something. But in any case, we are seeing more men who 

are taking this on as a responsibility, and I think we need to recognize that because, as I said, in terms of the workplace that begins 

to have, again, just as with women, a big implication in terms of 

their taking time off and taking leaves of absence and dropping 

back to part-time. So it begins to affect both their bottom line as 

caregivers, but also employers. So perhaps we could begin to address this as we see it being more and more of a genderless issue. 

We can begin to recognize this and provide more financial support 

for the caregiver. 

The CHAIRMAN. What are the most important challenges for addressing stress-related health problems of family caregivers? 

Ms. HUNT. Well, we would suggest that things such as going to 

see your physician. That is an important issue. There is actually 

a caregiver self-assessment instrument that the AMA has on its 

website where if you take this and it looks as if you are suffering 

from some stress, you should be talking to your physician about 

this. You should be going to your physician anyway for those regular check-ups and that sort of thing. 

There are other programs. Respite is something that helps with 

stress, as Sandy mentioned; actually, focusing more on being able 

to take care of yourself, getting exercise, eating right. I think it 

would be of importance, for example, for the CDC to begin to address this issue as a public health issue and say to caregivers, you 

need to take care of your own health or you are not going to be 

around to take care of that wife that you are concerned about or 

that mother that you are concerned about. 

The CHAIRMAN. Thank you very much. I think we all recognize 

and we all now know so much more about the impact of stress. Obviously, the experience caregivers have can be very stressful because they don’t tend, as I have looked at it, to put things aside 

that they were once doing. They add more to what they are doing 

39

and simply stretch their time out, and stress is usually the product 

of that kind of enterprise. So thank you so much for your testimony. 

Flora, in your testimony you said something that is really at the 

heart of the SECURE Act, and that is trying to keep people in their 

own homes or to assist families so that that dignity of the individual staying in their home, if at all possible, is extended. 

Would you elaborate on that? In talking with seniors, their greater fear is to lose their home that has been their sanctuary for in 

many instances most of their lives and to end up in a nursing 

home. While I have said, and I think we all agree, that there are 

circumstances and situations where nursing homes fit and are necessary—I don’t dispute that, but if you would expand on that feeling that seniors have about those kinds of choices. 

Ms. GREEN. This is a very critical issue. In the 3 years that I 

have spent traveling throughout the United States talking with 

seniors in the day centers, in the retirement communities, so many 

say, I wish I were home; I wish there would have been some way 

that somebody could have gone to the doctor with me. You know, 

when we lose our ability to drive, we are at the mercy of our family, which doesn’t always work out. But there are so many issues 

like this that folks find to be such a drastic change in life. 

I am going to tell you a very personal story about my very own 

sister, a retired anesthesiologist. She was fortunate enough to have 

a son living in her home and taking care of her. She suffers from 

osteoporosis, rheumatoid arthritis and some things she doesn’t talk 

about. 

Unfortunately, her son, a Vietnam veteran, shot himself about 8 

months ago. Within a week, her family had her into an assisted living community, without giving her the opportunity to make a 

choice, to decide if there was some way. I hear this over and over: 

There has to be some way that I can get help to stay in my own 

apartment, my own home, to take care of myself. My generation 

are pretty independent. 

The CHAIRMAN. Oh, yes, they are. Well, well-spoken, and thank 

you for your testimony and your advocacy. It is extremely valuable. 

Richard, your testimony opened with a reference to a patientfirst approach. Would you elaborate on that? 

Mr. TESKE. Certainly. Most of our health care programs are designed to control costs, not necessarily provide quality care. Just an 

anecdote: When I was at HCFA many years ago, we had three policy bureaus. One was called Coverage, one was called Eligibility, 

and one was called Reimbursement. There wasn’t a quality bureau. 

The people there get bonuses based on the money they save, not 

the quality of care they give. So the entire structure is not modeled 

to provide incentives for quality care. 

In the Medicaid program, you are assigned a provider; you don’t 

choose your provider, like in the middle class. In fact, you don’t 

even have a single physician watching out for your continuity of 

care. Companies go in and out of the program. You get a new physician each time another company takes over the plan. 

This is especially harmful in the rural areas and in the urban 

areas. Only a few years ago, half the physicians were taking Medicaid patients; now, only 37 percent. They are dropping out of the 

40

program. So there are a number of things within the actual structure of our programs that don’t really help the patient. It is there 

to help the provider save money for the government or save some 

money for the payors. 

The CHAIRMAN. Well, we hope that this reform package we have 

put in place begins to go at some of that. 

Mr. TESKE. Absolutely. 

The CHAIRMAN. I think it will, especially that urban/rural differential problem that we have clearly experienced in the rural 

States. Hopefully, that has been substantially corrected in the provider area, and it will offer some flexibility, I think, to the consumer. 

The Medicaid program is a State-Federal partnership, as you 

have spoken to. Demand for long-term care is certain to increase 

in the next decade, and State leaders are increasingly aware of 

that trend. It was true in my State of Idaho this past year. But it 

was not untypical of other States that had budget shortfalls. One 

of the greatest struggles was trying to deal with the matching 

money and the services offered through Medicaid and how that got 

done or where do we cut, because that is obviously part of a decisionmaking process with funding. 

Are States using tax credit relief to help address this trend? 

Mr. TESKE. Yes, they are. I think it is something like 22 States 

are using a tax credit or a tax deduction to help in this area, and 

this might be the route you wish to take. In my testimony I recommended a demonstration project rather than going nationwide, 

but maybe looking at these individual States and how they administer these credits could be very useful. 

For example, the services covered as non-institutional long-term 

care could be different. Is it a credit or a tax deduction? Is it a refundable credit or a regular credit? At what level of the Federal 

poverty level or income level, or is there no income application involved? Is the total benefit capped or uncapped, and the number 

of ADLs you have to have before the credit clicks in? 

All these things are probably different in all of these States and 

they will provide different incentives for different types of behavior. 

I would suggest that the committee take a look at these different 

State credits and deductions and see how they operate and see how 

broad or narrow they are, et cetera. It might be very helpful. 

The CHAIRMAN. I think that is excellent advice. We will see what 

we can do in that area. 

You talked about the Federal medical assistance percentage or 

Federal match to Medicaid. Can you describe what this is and how 

it works? 

Mr. TESKE. It is a complicated formula that is calculated based 

on the State’s per-capita income. The Federal Government will 

match a certain percentage of expenditures that the State makes 

for Medicaid. In the rich States, it is a 50–50 match, like in New 

York. New York will spend, let’s say, I think it is close to $10,000 

now per capita. The Federal Government will match it at a 50–50 

rate. They will get $5,000 from the Federal Government to match 

their $5,000. 

It goes up as high at times as an 83/17-percent match. In Mississippi, a few years ago it was 83–17. It was calculated that way 

41

so the poorer States wouldn’t be hurt and that the Federal Government would provide additional revenue. 

But the problem is, given the different qualification and eligibility and benefit packages between the States, what has happened 

is that New York, even though it is at a 50–50 match, spends almost three times the amount per capita as Mississippi does. That 

inequity is built into the structure again, and any attempt to 

change that obviously New York’s congressional delegation 

wouldn’t be too happy with. Let’s put it this way. The inequities 

in the Federal match has frozen structural reform in the Medicaid 

program for almost 40 years. 

The CHAIRMAN. I appreciate that observation. I have experienced 

that debate and/or discussion on the floor of the Senate more than 

once. 

How might a tax credit approach similar to my proposal help address Medicaid spending pressures? 

Mr. TESKE. Well, as I say, the big pressure right now in the long 

term is the problem of long-term care. Right now, as my testimony 

said, we have the problems of the recession putting a burden on 

the Medicaid program, and that is the No. 1 issue for the National 

Governors Association saying that it is driving the States into fiscal 

crisis. The Congress recognized this with their $20 billion special 

appropriation last year. 

I would just point to the people on this panel and their testimony. It is almost universal that people want to stay in their 

homes, and they would prefer not to be on Medicaid. Anything that 

we can do to provide those kinds of incentives obviously would take 

the burden off the Medicaid program. 

I think the tax credit idea, which, as modeled, is probably targeted more to the middle class right now, would indeed address 

that problem. It would probably not change the percentages too 

much between the States, but it would obviously have a large impact on their long-term care costs. 

The CHAIRMAN. Thank you. 

Before we conclude, let me turn to the whole panel. Is there anything left to be said? 

Yes, Flora. 

Ms. GREEN. As I am listening, I am thinking about the—let me 

give you a case in point, a single woman maybe with a couple of 

children who lives in an apartment. Her only source of income is, 

let’s say, $1,200 a month Social Security. She is over the cap on 

Medicaid. She doesn’t have enough money to continue her medical 

care. It is a real problem. 

This is the kind of situation that needs to be addressed because 

there is a big gap there. Again, the pride issue comes into effect. 

They have more money; well, at least someone thinks they have 

more money, so they are not eligible for any kind of help within 

the State welfare program. So they float around, hoping from day 

to day. This is really true that they are going to survive until the 

3rd of next month. 

The CHAIRMAN. I am sure it is, because they are right on the 

margin in many instances. 

Is there anything else that any one of you would like to say 

about this issue? 

42

Yes, Gail. 

Ms. HUNT. I would just like to say I think this bill that you are 

proposing is really positive in that it is looking for the first time 

to give support to middle-class people who are doing caregiving. 

There have been programs that have dealt to some extent with the 

lower-income people, but I hear all the time from people who are 

middle class or sort of somewhat above the poverty level saying 

isn’t there something out there, isn’t there some way that I could 

get some financial support to help me take care of my parents who 

are living at home? I would like to be able to keep them nearby. 

There is really nothing out there, so this is a good step. 

The CHAIRMAN. It is also directed right at that spouse who ends 

up being the caregiver of the spouse, and baby-boomers. But more 

importantly at this moment, in that other age group that my parents fall into and others. They thought they had planned well. 

They thought they had a lot of money for retirement. They find out 

they didn’t and so they keep tightening down, tightening down. 

They are very conservative folks to begin with. They spend less and 

less so they can take care of themselves. Then something like this 

hits that really is beyond—and I think most of you have expressed 

that—their ability, or it is an unanticipated expense beyond their 

resources. 

All of a sudden, that well-planned retirement disappears, and 

that is part of what we are looking at here. There is no question, 

it is looking at the middle class who has a resource. But it is a resource that can be rapidly depleted with the cost of health care 

today, simply because they had not acquired that long-term health 

care insurance or it wasn’t available at a time when it might have 

been more affordable for them. This hopes to fill that hole a bit. 

Ms. HUNT. I just wanted to also mention the thing to keep in 

mind is you can get baby-boomers of today and encourage them to 

purchase long-term care insurance. Older people typically can’t buy 

long-term care insurance. 

The CHAIRMAN. That is right. 

Ms. HUNT. They maybe can’t be underwritten. They have diabetes or whatever the illness is, or it is just not affordable if they are 

in their 70’s or so. So this is really something to help people for 

today. 

The CHAIRMAN. Well, that is very true. I think that clearly longterm health care insurance is becoming and will continue to become a very attractive package for well-planned-out baby-boomers, 

if you will, and younger who are looking at their retirement years 

and looking at being self-sufficient and being able to sustain their 

lifestyles without family and/or Federal assistance. 

Any other comments? Yes, Richard. 

Mr. TESKE. I just thought of another salutary effect of this approach vis-a-vis the States. One of the thorniest problems existing 

is the problem of so-called dual Medicare and Medicaid eligibles—

6 percent of the enrollees, 35 percent of the total costs. 

As any Governor can tell you, this issue is so complex, that whole 

area, that this tax credit again provides an incentive for those people not to go into the Medicaid program and become a dual-eligible, 

but get the services outside. 

43

The CHAIRMAN. That is a fascinating observation. I mean, I have 

struggled with the definition of and those funding problems with 

dual eligibility. I had not thought of it in that context. 

Yes, Sandy. 

Ms. MARKWOOD. Senator Craig, playing on what Gail had mentioned, I think this is a wonderful—the tax credit is a wonderful 

benefit for individuals. I think it goes into the context of making 

sure that people have the discussions with their families on planning for old age, planning for long-term care needs, and this would 

be a wonderful tool to help people in that regard. 

For the generation who is 65-plus now, as you said, they thought 

they had planned for their retirement, they thought they had 

saved, and then because of the cost of health care found out that 

they haven’t. There is a whole generation of baby-boomers who, we 

are fearful, are not planning for their retirement years and their 

long-term care years. 

This tax credit is something that can help them as educational 

materials go out to help them think of how this fits into the overall 

context of their plans for their latter years. I think that there 

needs to be a broader discussion in this country about planning for 

old age. 

The CHAIRMAN. Well, that is very well-said. In fact, it is so wellsaid that we will let that be the last word. Thank you all very 

much for your time this morning. We will stay in touch with all 

of you as we work this issue and develop a support base for it, but 

I do believe it is an issue whose time is here and we are going to 

enlist the Senate and the House to become very active in support 

of it. 

Thank you all. The committee will stand adjourned. 

[Whereupon, at 11:11 a.m., the committee was adjourned.] 

(45)

A P P E N D I X 

PREPARED STATEMENT OF SENATOR GORDON SMITH

Thank you, Mr. Chairman, for holding a hearing on this important issue. Caring 

for a loved one in the home can be expensive and trying for everyone involved. Family members often have to quit their jobs to care for a family member. Tremendous 

resources are drained by families in order to pay for in-home service providers. 

Often, due to the high expense of care and dwindling resources, seniors are 

pushed into the Medicaid system. According to the National Family Caregiver Association, more than 335,000 Oregonians serve as caregivers. In dollar terms, this 

translates to 360 million caregiver hours per year, with a market value of $3.2 billion. 

Nationally, more than 22 million families in this country have caregiver responsibilities of some kind or another. According to a recent American Medical Association article, 80 percent of home care services are provided by caregivers, and the 

aggregate value of their services exceeds $200 billion per year. In addition, the estimated annual impact of caregiving on American business—in terms of lost days, reduced productivity—is $29 billion. 

Clearly, this is an issue that is only going to grow in importance as the greying 

of America progresses. One thing we in Congress can do is support legislation that 

uses the tax code to help family caregivers. I am a cosponsor of Senator Grassley’s 

Long Term Care and Retirement Security Act, and I am eager to learn more about 

Senator Craig’s Senior Eldercare Relief and Empowerment Act. 

On a related topic, I am also a supporter of Senator Breaux’s Elder Justice Act, 

which recognizes that seniors encounter many abuse, neglect, exploitation. Passing 

this bill would provide resources for programs to train caregivers on how to avoid 

elder abuse, and I hope the Senate will address both these bills before the end of 

the year. Our seniors deserve nothing less.

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