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NATIONAL FAMILY CAREGIVER SUPPORT

PROGRAM: GETTING BEHIND

OUR NATION’S FAMILIES

HEARING

BEFORE THE

SUBCOMMITTEE ON AGING

OF THE

COMMITTEE ON HEALTH, EDUCATION,

LABOR, AND PENSIONS

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

SECOND SESSION

ON

EXAMINING THE IMPLEMENTATION OF THE ADMINISTRATION ON

AGING’S NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM

MAY 7, 2002

Printed for the use of the Committee on Health, Education, Labor, and Pensions

(

(II)

COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

EDWARD M. KENNEDY, Massachusetts, Chairman

CHRISTOPHER J. DODD, Connecticut

TOM HARKIN, Iowa

BARBARA A. MIKULSKI, Maryland

JAMES M. JEFFORDS (I), Vermont

JEFF BINGAMAN, New Mexico

PAUL D. WELLSTONE, Minnesota

PATTY MURRAY, Washington

JACK REED, Rhode Island

JOHN EDWARDS, North Carolina

HILLARY RODHAM CLINTON, New York

JUDD GREGG, New Hampshire

BILL FRIST, Tennessee

MICHAEL B. ENZI, Wyoming

TIM HUTCHINSON, Arkansas

JOHN W. WARNER, Virginia

CHRISTOPHER S. BOND, Missouri

PAT ROBERTS, Kansas

SUSAN M. COLLINS, Maine

JEFF SESSIONS, Alabama

MIKE DeWINE, Ohio

J. MICHAEL MYERS, Staff Director and Chief Counsel

TOWNSEND LANGE MCNITT, Minority Staff Director

SUBCOMMITTEE ON AGING

BARBARA A. MIKULSKI, Maryland, Chairman

CHRISTOPHER J. DODD, Connecticut

PATTY MURRAY, Washington

JOHN EDWARDS, North Carolina

HILLARY RODHAM CLINTON, New York

TIM HUTCHINSON, Arkansas

JUDD GREGG, New Hampshire

JOHN W. WARNER, Virginia

PAT ROBERTS, Kansas

RHONDA RICHARDS, Staff Director

C. KATE LAMBREW HULL, Minority Staff Director

(III)

CONTENTS

STATEMENTS

TUESDAY, MAY 7, 2002

Page

Mikulski, Hon. Barbara A., a U.S. Senator from the State of Maryland ............ 1

Prepared statement .......................................................................................... 2

Hutchinson, Hon. Tim, a U.S. Senator from the State of Arkansas ................... 3

Carbonell, Hon. Josefina G., Assistant Secretary for Aging, U.S. Department

of Health and Human Services ........................................................................... 4

Prepared statement .......................................................................................... 7

Ward, Sue F., Secretary, Maryland Department of Aging, Baltimore, MD ........ 16

Prepared statement .......................................................................................... 18

Skirven, John N., Executive Director, Senior Services of Southeastern Virginia, Norfolk, VA ................................................................................................ 20

Prepared statement .......................................................................................... 22

McSweeney, Barbara, Family Caregiver, Washington, DC .................................. 24

Prepared statement .......................................................................................... 26

(1)

NATIONAL FAMILY CAREGIVER SUPPORT

PROGRAM: GETTING BEHIND

OUR NATION’S FAMILIES

TUESDAY, MAY 7, 2002

U.S. SENATE,

SUBCOMMITTEE ON AGING, OF THE

COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS,

Washington, DC.

The subcommittee met, pursuant to notice, at 2:35 p.m., in room

SD-430, Dirksen Senate Office Building, Senator Mikulski, (Chairwoman of the Subcommittee), presiding.

Present: Senators Mikulski, Hutchinson.

OPENING STATEMENT OF SENATOR MIKULSKI

Senator MIKULSKI. The Subcommittee on Aging of the Health,

Education, Labor, and Pensions Committee will come to order.

We are going to focus today on an oversight issue of the National

Family Caregivers Support Program, essentially getting behind our

Nation’s families and giving help to those who practice self-help.

I want to thank my colleague Senator Tim Hutchinson. When he

chaired the subcommittee, we were able to get The Older Americans Act authorized after it had languished for a number of years,

and of course, his predecessor Senator DeWine was very helpful in

laying the groundwork, as well as on this Family Caregivers Act.

So we thought that in this month that celebrates The Older

Americans Act and aging, we would hold a hearing on one of the

most pressing issues, which is caregiving, to see how something

that we did is doing and what we can do to be of assistance.

I believe that honoring our father and our mother is not only a

good commandment to live by but a good policy to govern by. My

own dear father suffered from Alzheimer’s disease, and our family

watched him go through that terrible, terrible long goodbye. I know

what families live through when a loved one ages and needs more

care, and eventually, more than one family alone can provide.

My colleagues and I created the National Family Caregiver Support Program almost 2 years ago to help families who need some

support and to help them get the services they need. We are here

today to find out how that caregiver program is doing. Is it meeting

the day-to-day needs of family caregivers and the long-range needs

of our Nation? Is the program doing well? What can it do better?

And when we say is the program doing well, we mean not only administratively and fiscally, but in terms of putting families first.

2

What are the gaps, what are the glitches, and what are the successes?

Our families are the backbone of the long-term care system of

the country. One out of every four households is involved in providing care to an older adult. That is 22 million families. America is

getting older. Baby boomers are becoming seniors. The number of

families caring for an older adult will reach 39 million in the next

5 years.

Most caregivers would say it is a rewarding part of their lives,

but caregiving can take a significant toll. Workers who take care

of older relatives lose several hundred thousand dollars in wages,

Social Security, and pensions. Caregivers experience enormous

stress and enormous strain. Families are often overwhelmed with

questions about where to go and what to do to care for their relative. Families often call our offices, asking what are the programs

that can help them; how do they find out about available services;

where do they go, and can they afford it.

The list of questions is endless, and the answers may not be

easy. Caregiving is not one-size-fits-all.

The predominant number of caregivers are women, and it can be

the ‘‘sandwich’’ generation or even the ‘‘club sandwich’’ generation.

The ‘‘sandwich’’ generation is where an adult under the age of 60

is helping to provide care to someone over age 60 or 65. The ‘‘club

sandwich’’ generation is where somebody age 70 is taking care of

somebody age 90. And if it is the ‘‘club sandwich’’ generation, we

have got to make sure we put the bacon there to help them out.

Our colleagues created this program, and we want to make sure

it provides a one-stop shop to get information and referral, to provide counseling, training, and support, and also to provide respite

care.

I have been fighting for double funding for this program to get it to $250 million, and I have been pleased that it has been on a

bipartisan basis. You know, those millions of caregivers work three

shifts—raising children, working a full-time job, and caring for an

elderly parent, or one elderly parent caring for their parent.

So we are going to work very hard to make sure this bill works

well and is funded properly. May is Older Americans Month, and

I can think of no better way to honor our older Americans than to

help them stay independent and in their communities.

So we look forward to hearing our witnesses—Assistant Secretary Carbonell, Sue Ward, John Skirven, and Barb McSweeney.

[The prepared statement of Senator Barbara Mikulski follows:]

PREPARED STATEMENT OF SENATOR MIKULSKI

I believe that honoring your mother and father is not only a good Commandment

to live by, but also good public policy to govern by. I know what families live

through when a loved one ages and needs more care, eventually more than you

alone can provide. My colleagues and I created the National Family Caregiver Support Program almost two years ago to help families like mine that need some support and to help them get the services they need.

We’re here today to find out how well the Caregiver Program is meeting the dayto-day needs of family caregivers and the long range needs of the Nation: what the

program is doing well, what it can do better, what are the gaps and glitches, and

what are the great successes.

Our families are the backbone of the long-term care system in this country. One

out of every four households is involved in providing care to an older adult. That’s

22 million families! America is aging, and baby boomers are becoming seniors. The

3

number of families caring for an older adult could reach 39 million in the next 5

years.

Most caregivers would say it is a rewarding part of their lives, but caregiving can

take an enormous toll. Workers who take care of older relatives lose $659,139 in

wages, pension benefits, and Social Security over a lifetime. Caregivers experience

depression at three times the rate of others in their own age group.

Families are overwhelmed with questions about where to go and what to do to

care for their relative. If you’re a family: What are the programs that can help you?

How do you find out about available services? Where do you go for services? Who

helps you put together the right package of services to meet the needs of the person

you are caring for? There is adult day care, respite care, home-delivered meals and

more. How do you know what your mom or dad needs? How do you pay for services?

Does Medicare or Medicaid cover anything? Where do you go to hire help, like a respite care worker? Is this person properly trained?

The list of questions is endless and the answers may not be easy to find.

Caregiving is not ‘‘one-size-fits-all.’’ You have to shop around to find the best fit.

The National Family Caregiver Support Program is one of the solutions to the

long term care crunch facing America’s families. My colleagues and I created this

Program in 2000. The Caregiver Program gets behind our Nation’s families and

gives help to those who practice self help.

What does the Caregiver Program do? It gives families a one-stop shop to get information and referrals to help caregivers get answers to their questions. It provides

counseling, training, and support groups to help people cope with the stresses and

strains of caregiving. And it provides respite care so that caregivers can run errands

or just relax briefly without having to worry about a relative not being cared for

during that time.

I’m fighting to double funding for this program to $250 million, to redouble our

commitment to the women and men of this country that care for a loved one. Millions of caregivers work 3 shifts: raising children, working a full-time job, and caring

for an elderly parent or other family member at home. I’m going to work just as

hard to make sure our Federal law books and our Federal checkbook get behind

these families.

May is Older Americans Month. I can’t think of a better way to honor older Americans than to help seniors stay independent and in their communities. I look forward to hearing from our witnesses today: Asst. Secretary Carbonell, Secretary Sue

Ward, John Skirven, and Barbara McSweeney.

Senator MIKULSKI. Senator Hutchinson, do you have any remarks? You have been so active in this.

OPENING STATEMENT OF SENATOR HUTCHINSON

Senator HUTCHINSON. Thank you, Chairwoman Mikulski.

I am very pleased that you have scheduled today’s hearing to assess the current implementation and impact of the National Family

Caregiver Support Program.

Contrary to popular belief, families generally do whatever is necessary to keep their elderly family members at home rather than

in a nursing home or an institution. Nearly one out of every four

households is involved in caregiving to older persons, and over twothirds of those caregivers are, as Senator Mikulski pointed out,

women.

Because Arkansas ranks among the top 10 States in terms of the

percentage of its population over the age of 65, the family caregiver

program is very important to our State and has provided a muchneeded boost to caregiving families in Arkansas.

The journey a caregiver must go through to help improve the life

of a loved one is not always easy. Stress, frustration, and often depression are all feelings that caregivers may experience along the

way. The wide variety of services being offered and planned in Arkansas I think illustrates the flexibility of the National Family

4

Caregiver Support Program in providing support to these families

who are doing such noble work.

Many of the State’s Area Agencies on Aging, our State organization through which The Older Americans Act is implemented, are

participating in a program called Arkansas Caregivers, which seeks

to meet the needs of spouse caregivers and adult child caregivers.

Each region in the State of Arkansas has taken steps to meet the

unique needs of caregivers in their communities.

For example, some of the Area Agencies on Aging have established training for caregivers. Classes on 20 different topics have

been taught to 460 families. The most popular classes were on depression, spiritual care for homebound people, and home safety and

security for seniors.

Over 3,000 hours of adult day care and in-home respite care have

been provided thus far in my State. Support groups and caregiver

libraries stocked with disease and resource information are also

being established in Arkansas as a result of this caregiver program.

The National Family Caregiver Support Program is the first step

in supporting family caregivers in their attempts to keep their family members in the community. I think the flexibility of the National Family Caregiver Support Program gives aging programs an

opportunity to develop innovative solutions for caregiver support.

The experience in Arkansas I think has been very positive and

shows great potential for this program to meet our rapidly growing

needs.

So I appreciate this opportunity for us to hear a report on how

this is going, and I thank you, Madam Chairman, for scheduling

the hearing today.

Senator MIKULSKI. Thank you.

We would like now to call to the table the Assistant Secretary

for Aging at the Department of Health and Human Services, Ms.

Josefina Carbonell. She comes to us with a great deal of hands-on

background.

Before joining HHS as the Assistant Secretary, she was president

of the Little Havana Activities and Nutrition Center in Dade County, FL, the largest aging health and nutrition project in Florida and

the largest Hispanic geriatric health and human service organization. So she understands what it is like to administer the program

and across very broad, diverse lines.

She attended Florida International University and is a graduate

of the Kennedy School of Government at Harvard, and she oversees

a budget of over $1 billion, 57 State agencies, 27,000 local providers, and lots of things that we created to help seniors be independent.

We welcome you. This is the first time you are testifying before

the committee, and we look forward to both your testimony and

also, Madam Assistant Secretary, to getting better acquainted.

So why don’t you just go ahead with your testimony, and then

we will engage in some questions.

5

STATEMENT OF HON. JOSEFINA G. CARBONELL, ASSISTANT

SECRETARY FOR AGING, U.S. DEPARTMENT OF HEALTH AND

HUMAN SERVICES

Ms. CARBONELL. Thank you, Senator Mikulski and Members of

the Subcommittee.

Thank you for this wonderful opportunity to testify today on the

Administration on Aging’s efforts to support America’s caregivers

and our implementation of the Family Caregiver Support Program—a really appropriate time, as May is Older Americans

Month, as the Senator mentioned earlier.

I appreciate this subcommittee’s commitment to America’s families, and I am grateful for the support you have shown to ensure

that the caregiver program remains strong and effective.

Today I am pleased to report that after one year, the National

Family Caregiver Support Program is a total success. I would like

to share with you some examples of the great strides we are making in the program. This year, HHS Secretary Tommy Thompson released $138 million to States and Territories, and the community services and resources made available by this funding are easing the burden of

approximately 250,000 caregivers all across this Nation.

I am proud that the States and localities are using these funds

in a number of creative ways. For instance, caregiver resource centers have been established in public libraries; donated computers

have been retrofitted and used to establish an online support group

staffed by a registered nurse; retirees have received training and

are providing respite care to caregivers across this Nation, and

States are bringing adult day care to rural communities by creating

mobile day care programs in which staff travel from 25 to 45 miles

a day to offer respite for caregivers. So it is ‘‘respite-on-wheels’’ sort

of like Meals-on-Wheels.

These are just some of the many innovative activities we are

hearing about the States, but let me focus particularly on some of

the States represented here in this committee.

For instance, in Maryland, during the first quarter of 2002, over

17,000 caregivers were served, including information and assistance services to over 10,000 individuals. Counseling, support group,

and training support activities were provided to over 1,200 caregivers, respite care services to over 300 seniors, and supplemental

services to over 18 persons.

If we look at, for instance, the uniqueness of some of the National Family Caregiver Support Programs, they have paid for inhome aid to care for man with ALS in Maryland, allowing his wife

time to shop for food and run other errands. He is on continuous

oxygen, in a wheelchair, incontinent, needs suctioning, and is dependent for most of the ADLs. Other Maryland families have received assistance with the cost of medications for their loved ones.

A daughter with a husband and six children and an infant grandchild assumed care for her elderly mother with diabetes, CHF, hypertension, incontinence, and was severely obese. There was no

room for her mother in her townhouse, and the family caregivers

program paid for a small security deposit and first month’s rent to

enable them to avail themselves of another unit in which the

daughter, the mother, and the grandchild moved.

6

So these are some examples of the flexibility of the services that

we are hearing about.

In New Jersey——

Senator MIKULSKI. Madam Assistant Secretary, we are lost in

your testimony. Is that an addendum to the testimony?

Ms. CARBONELL. Yes. I decided to bring a little bit of the exact

examples of what is happening in some of the States. If you would

like me to remain within the testimony——

Senator MIKULSKI. No; go ahead, but we are a little bit pushed

for time.

Ms. CARBONELL. Okay. So we are seeing some innovative services

across all of the States. We also are very enthused about the kind

of pooling together that many of the AAAs are doing to establish

caregiver information and caregiver websites throughout many

States.

At least 18 States have established either a voucher system or

a caregiver reimbursement system that allows the freedom and the

choice of the caregiver to purchase services that they might need.

We have also funded six projects of national significance, and we

have worked to address issues—for instance, with caregivers of relatives with mental retardation and developmental disabilities, including the investigation of the provision of services to caregivers

of MRDD relatives who are between the ages of 19 and 59 years

of age in three particular grants that we have given, including also

the AHCRQ grant.

Challenges—where do we go from here? First, I believe we need

to heighten public awareness. We need to continue to work on ensuring that caregiving is given top priority in the information and

assistance networks. Caregiving is a public health issue, and it

needs to be realized as such. Caregiving takes its toll on caregivers,

jeopardizing their health and emotional well-being.

Many of the millions of caregivers are aged themselves. All too

often, they assist loved ones at a considerable cost to themselves.

Frequently, caregivers do not seek medical care or engage in preventive health practices. It is important that we work to educate

all sectors of the health care community about the importance of

treating the caregiver as well as the care recipient.

A second challenge and a primary concern of mine is that caregivers often are not aware that they are caregivers or that services

really exist in their communities. All too often, a caregiver seeks

help only when a crisis occurs or pretty late. So I want all caregivers to be aware that helps is available through the National

Family Caregiver Support Program.

Any one of us at any time may be a caregiver. I am one, and I

know that there are many others like me here today in this room.

I am taking several steps to address these challenges.

First, we have invested in a public service campaign which will

be aired more than 100 times on PBS series. It will focus on the

caregiver program and how caregivers can access services.

Second, we are forming grassroots community caregiver coalitions to complement an upcoming PBS caregiver documentary

which is designed to make more Americans aware of help available

through this caregiver program.

7

Third, we are working with a coalition of States, area agencies,

Tribal organizations, and service providers to develop a national

public awareness campaign which is very much needed.

Our objective, obviously, is to reach out to caregivers with critical

information about local resources and to also recruit volunteers to

support programs like Meals-on-Wheels and caregiver respite.

We need to be more responsive to caregivers and their families

by providing services that meet their needs. I am committed to

working with you to support America’s families. One of the greatest

strengths of this country is that we are a compassionate Nation

with a strong spirit of generosity and with a commitment to help

people of all walks of life now and to pave the way for a better future for our children and grandchildren. The National Family Caregiver Support Program embodies this very compassionate spirit.

I would be happy to address any questions that you might have.

Thank you.

[The prepared statement of Hon. Josefina Carbonell follows:]

PREPARED STATEMENT OF HON. JOSEFINA G. CARBONELL

Thank you for the opportunity to testify today—a most appropriate time as May

is Older Americans Month—on the Administration on Aging’s (AoA) efforts to support America’s caregivers and implement the National Family Caregiver Support

Program. I appreciate this Subcommittee’s commitment to America’s families and I

am grateful for the support you have shown to ensure that the caregiver program

remains strong and effective.

Today, I am pleased to report that after one year the National Family Caregiver

Support Program is a total success. I would like to share with you some examples

of the great strides we are making in the program. Last year, HHS Secretary Tommy Thompson released $113 million to States and

territories. The community services and resources made available by this funding

is easing the burden of approximately 250,000 caregivers all across the Nation. This

year, an additional $128 million was awarded to States. I am proud that States and

localities are using these funds in a number of creative ways. For instance, we have

seen new tele-health technology using computers to link caregivers to support networks. Caregiver resource centers have been established in public libraries. Donated

computers have been retrofitted and used to establish an online support group

staffed by a registered nurse. Retirees have received training and are providing respite care. States are bringing adult day care to rural communities by creating ‘‘mobile day care programs’’ in which staff travel from 25 to 45 miles a day to offer respite for caregivers by providing day care. These are just some of the many innovative initiatives we are hearing about from the States.

Caregiver funds are also being used to form new partnerships, to improve access

to services, and to reach out to special populations. Let me give you just one example from each of these categories.

First, States are forming new partnerships. ‘‘Faith-in-Action’’ is an inter-faith initiative that recruits volunteers from faith-based communities to assist the elderly,

and those with disabilities and their caregivers. States are collaborating with these

existing projects and establishing additional programs in underserved areas.

Second, they are improving access to services. The area agency on aging in Seattle

is implementing caregiver training and skills building. The program is designed to

help caregivers maintain their own health and increase their confidence in handling

difficult situations, emotions and decisions. While attending training courses, these

caregivers can access services. This training program has also been successfully introduced to other States, as well.

Third, we are reaching out to special populations. Virginia, for example, is providing specialized services to male caregivers, particularly retired military personnel

and men who live in rural and farming communities. Although it is true that most

caregivers are women, significant contributions are made every day by husbands,

brothers and sons.

In the first year of the caregiver progam, the aging network made great strides

in designing responsive support systems. Two keys to this success are flexibility and

consumer input. AoA, State and area agencies, tribes and providers solicited the

input of caregivers in shaping programs through town meetings, focus groups, adviVerDate 11-MAY-2000 14:42 Jan 21, 2003 Jkt 000000 PO 00000 Frm 00011 Fmt 6633 Sfmt 6621 79620 SLABOR2 PsN: SLABOR2
8

sory boards with caregiver representation, new partnerships with the faith community and businesses, and outreach to special populations. AoA has been in the forefront of this movement by conducting listening sessions across the country to hear

first-hand from America’s caregivers about their own unique needs.

NFCSP ASSISTS CAREGIVERS BY PROVIDING THEM WHAT THEY NEED

I would like to share with you how we are contributing to helping America’s caregivers. Through information assistance, many caregivers have been helped to determine if their loved one is eligible for Federal programs such as Medicaid, and are

assisted with paperwork. Also, caregivers of veterans are learning that their spouses

may be eligible for benefits from the Department of Veterans Affairs such as medication assistance. AoA is working both within and outside the Department of Health

and Human Services to help those we are entrusted to serve. I am proud to say that

AoA is part of what we call ‘‘One Department.’’ We all work together to reduce barriers to participating in programs so that the customer always comes first.

I would like to share with you some real life examples of how this program is

helping caregivers. A caregiver in North Carolina was involved in an automobile accident and was hospitalized. She was caring for her mother with Alzheimer’s disease

and her stepfather who had multiple physical problems. Caregiver program funds

were used to temporarily place her mother and stepfather in a long-term care facility during the duration of her hospitalization.

South Carolina assisted an 80-year-old great-grandmother who is caring for her

23-year-old granddaughter with end-stage AIDS and her three young children.

Funds are used to purchase diapers and related supplies for the babies and respite

care for the great-grandmother to allow her to go to medical appointments.

In Missouri, a grab bar and bath bench assisted an 80-year-old gentleman to continue to care for his 78-year-old wife with Alzheimer’s disease. An occupational therapist came to the home to instruct the caregiver in the proper and safe way of using

the equipment to bathe his wife.

MEASURING SUCCESS

President Bush believes the truest kind of compassion does not only come from

more government spending, but from helping citizens build lives of their own. It is

compassionate to actively help our citizens in need, yet it is responsible to insist on

accountability and results. AoA has made greater use of performance outcome measures and indicators for ongoing program assessment and to support evaluation decisions. We are applying this approach to the caregiver program. These measures include identifying the number of individuals served, the extent to which State entities are providing various types of services supported by the Older Americans Act

(OAA), and a broad measure of outreach through the ratio of caregivers to OAA

service clients. In addition, AoA and its partners have developed an outcome measures survey instrument specifically for caregiver services. This instrument will allow

us to assess program implementation, including: The extent of services available

specifically to caregivers; Caregiver satisfaction with services to the elderly; and

Caregiver assessment of the impact of services to them and to the elderly.

CHALLENGES WHERE DO WE GO FROM HERE?

First, I believe we need to heighten public awareness that caregiving is a public

health issue and it needs to be realized as such. Caregiving takes its toll on caregivers, jeopardizing their health and emotional well-being.

More than 44 percent of the State health departments have begun to address

caregiving issues. Many of the millions of caregivers are aged themselves. All too

often they assist loved ones at a considerable cost to themselves. The physical demands, emotional distress, and their sheer age increase their risk for health problems. Frequently, caregivers do not seek medical care or engage in preventive health

practices. AoA has heard from caregivers that while health and social service providers often treat the caregiver’s family members, they rarely ask about the caregiver’s needs. It is important that we work to educate all sectors of the health care

community about the importance of treating the caregiver as well as the care recipient.

A second challenge and a primary concern of mine is that caregivers often are not

aware they are caregivers or that services exist. All too often, a caregiver seeks help

only when a crisis occurs. I want all caregivers to be aware that help is available

through the National Family Caregiver Support Program. Any one of us—at any

time may be a caregiver to a member of our family. I am one and I know that there

are many others like me here today in this room.

9

I am taking several steps to address these challenges. First, we have invested in

a public service campaign which will be aired more than 100 times on PBS. It will

focus on the caregiver program and how caregivers can access services. Second, we

are forming grassroots community caregiver coalitions to complement the upcoming

PBS caregiver documentary, ‘‘And Thou Shalt Honor.’’ This mini-series is designed

to make more Americans aware of help available through the caregiver program.

Third, we are working with a coalition of States, area agencies, tribal organizations

and service providers to develop a national public awareness campaign. I want people to know that they are not alone and that help is available. I am excited about

this outreach campaign and have challenged the national aging network to join us

in getting the word out to every corner of the nation no matter how remote or disadvantaged.

Our objective is to reach out to caregivers with information about local resources

and recruit volunteers to support programs like meals on wheels and caregiver respite programs. We need to be more responsive to caregivers and their families by

providing services that meet their needs. I am committed to working with you to

support America’s families.

One of the greatest strengths of this country is that we are a compassionate nation with a strong spirit of generosity, with a commitment to help people of all

walks of life now, and to pave the way for a better future for our children and

grandchildren. The National Family Caregiver Support Program embodies this compassionate spirit.

I would be happy to address any questions you have.

Senator MIKULSKI. Thank you very much, Madam Assistant Secretary.

I know that you could give us examples from each one of the

States, and we would love to hear those stories, but let us get right

to the heart of the matter.

Could you share with me and the committee the issue of information and referral as you look at your first year. First of all, I want

to just say kudos for the public information campaign through public broadcasting, and hopefully, the private sector will step forward.

But once they come into the gateway, the most important issue is

information and proper referral. Could you share with us how that

is going? Is it stronger in certain areas, for example, urban? Do we

need more language training for some of our multi-ethnic communities?

Could you share with us, because information and referral is so

crucial.

Ms. CARBONELL. Yes. There are certain areas where obviously,

information about a new program is critical, particularly in the initial phase of the development of the program. So has been the importance of creating a solid program in communities where you use

the best in services that have been providing in the aging network;

that means using the solid base of the Older American Act Title

III services and build upon that a new kind of system to provide

services to the caregiver community.

For instance, there are still many challenges in the rural communities. As we went across the country and held nine listening sessions in both rural and urban and suburban communities, we

heard very clearly the need to expand the information and assistance so we can reach out to families, particularly in rural communities and particularly ethnic communities and language disadvantaged communities.

There is a whole effort, and we have funded innovative programs

in these areas to address not only the messages to be appropriately

and culturally targeted to those communities but to reach out to

those disenfranchised communities.

10

Senator MIKULSKI. Where do they get information? Do they dial

in to a center? Are you using the internet? How does a family get

information?

Ms. CARBONELL. We are seeing some innovative things going on

in the field. For instance, some States have funded an information

line or have added information to their State elder help line or to

their local help line through the Area Agencies on Aging. We have

seen how AAAs have also pooled resources through their State association and funded public awareness campaigns, billboard campaigns, PSA spots.

Senator MIKULSKI. But that is to get them to call. In other

words, if you are a family person Arkansas, Utah, Maryland, on

the Eastern Shore, you could be five blocks from Johns Hopkins or

University of Maryland and still—is it that you are calling into an

office on aging?

Ms. CARBONELL. Right. There is an eldercare locator number

that people can call, which is a nationwide 800 toll-free number,

and they are then connected to their local office. Or it might be,

just as you said, two blocks away, and they are connected to that

AAA provider in the locality, and that local AAA provider then directs the individual to the array of services available, from assistance to caregiver support training to respite, both center-based and

home-based care, and other services that are implemented by the

State.

The beauty of the program has been the way that the law was

crafted to give the greatest flexibility to States and local communities to implement.

Senator MIKULSKI. Well, Senator Hutchinson and I worked very

hard on that, because again, even in my own State, there are five

different States—we have our mountain counties in Western Maryland, we have our Eastern Shore, the Baltimore–Washington corridor, which is very suburban and so on. So we wanted to have that

flexibility.

In terms of the funding for the agency, as we work with our appropriators, Senators Specter and Harkin, do you think this is an

area that needs to really be amplified, that is, the information and

referral, or do you prefer just to increase it and look at where you

need to deploy?

Ms. CARBONELL. The request for 2003 is for the same amount of

dollars that we requested in 2002, and we thank the Senators for

their support and the increase in 2002. It allows us to have the

program in full implementation phase. It has allowed us this year

and a half to have States and local communities respond to local

needs—that means to develop a flexible system that has the capacity to respond to a new type of clientele. It has given time for

States to implement a program that builds upon the existing aging

network and expands from there. It has allowed them, for instance,

to provide services to rural communities, to develop expanded services in not only respite but home care, the voucher systems and

other choices. It has allowed to be developed, for instance, a whole

information and assistance program.

Senator MIKULSKI. Are you saying you do not need more money?

Ms. CARBONELL. The President’s budget calls for the same

amount of dollars for next year, and we are confident that this is

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a solid budget. It builds upon the development phase. We should

have some more solid information at the end of this year, and I

would be glad to co me back and report to you those final numbers.

Senator MIKULSKI. Thank you.

I have some other questions related to innovation, but my time

is up.

Senator Hutchinson.

Senator HUTCHINSON. Thank you.

Assistant Secretary Carbonell, you mentioned that you hope that

by next year, we will have more data. In your written testimony,

you talked about the importance of measuring the success of the

program and that you have several performance outcome measures

and indicators. Have you collected any data thus far, and when do

you expect a broad range of data to be available for the committee?

Ms. CARBONELL. For the first time ever, a national survey will

be conducted, and the caregiver program is included in that survey.

That survey is slated to be completed hopefully by early fall, so we

should have some numbers early on, in late fall of this year. And

by next year, all of the States will be implementing and reporting

on outcome measures, including the caregiver support program.

This is really the first year to a certain extent of the program,

because it took approximately a year for many of the States to develop the capacity to fund these programs, to get the funds in place

and to get the matching situations in place in their local and State

communities, and to get the program up and running.

Some programs have been in place for about 6 months; some programs have been in place for about 10 months. But we are hearing

some good outcome measures, particularly in the areas of information—we are dealing the capacity to expand that. We are expanding in areas of respite. We are using as a bar of measurement—

out of the 7 million older Americans that we are serving in our

Older Americans Act, approximately 3 million folks are homebound; that means they lack the activities of daily living, and they

have trouble coming into congregate settings, so they are being

served in a home-based setting—we are using that as a measuring

tool to be able to get to the point where we will be able to reach.

So we are assuming that for each of those 3 million seniors that

we are serving homebound, they are being taken care of by caregivers.

Senator HUTCHINSON. When you describe the program as an unqualified success, that is based upon preliminary measurements,

anecdotal evidence, and success stories that you have heard, as

apart from an objective survey, and you would anticipate that in

the next 6 months, we would have more concrete data——

Ms. CARBONELL. We anticipate that in the next 6 months, we will

have the completed survey done, which includes the family caregiver programs, which give us specifically outcome measures, not

only in rates of participation, but how people have improved, how

caregivers have been bale to go back to work, and other measurement models that we are using on the family caregivers program— not only attendance, but what kinds of services and expansion of

services have allowed people to remain at home.

Senator HUTCHINSON. In describing the program as a success—

and I do not think anyone on this subcommittee is going to argue

12

with that description, and certainly the evidence and the anecdotal

success stories we have heard in Arkansas reflected that description as a success—but in the year that you have had, are there any

changes—if you were able to right now rewrite the authorization

for this program and make changes, not in the funding levels but

the program itself and the way the program operates, can you describe anything that you might want to be different?

Ms. CARBONELL. I think that what we heard across the country

in the listening sessions was please keep the flexibility, the flexibility, the flexibility.

I think caregivers are wanting to ensure that there is flexibility

in the implementation of the programs. I think that has been the

biggest beauty of the law. And we are passing that flexibility on

to the States and local communities so they can implement it the

way they want it, with the array of services that they want implemented.

We have heard about some difficulties with meeting match, yet

none of the States—in the final reports that came in for the first

year of implementation, everybody met their 25 percent match requirement. I think that due to the economic downturn, some States

and local communities were having trouble raising that match, but

they did meet it.

We heard the need for more information. We heard very creative

recommendations on rural implementation and grandparents taking care of grandchildren. We met a grandmother in rural Idaho,

a widow, the owner of a working farm, who takes care of three

grandchildren. She said, ‘‘It has been a Godsend for me to have the

family caregiver support program. It allows me to get a little bit

of respite.’’ Senator HUTCHINSON. So the message has been keep the flexibility.

Ms. CARBONELL. Keep the flexibility.

Senator HUTCHINSON. It is not that there are problems that you

would like corrected; rather, we should not tinker with this program and mess up what has the promise of working very well.

Ms. CARBONELL. And we are taking that to heart in the sense

that we are developing the new regulations, or clarifying the regulations that are unclear, including the family caregivers program.

That is utmost in our minds to make sure we keep the flexibility

and allow local communities and States to implement their own

priorities and to implement the services that best meet the caregiver needs.

Senator HUTCHINSON. Thank you.

Senator MIKULSKI. I have a few other questions. First, all that

you are undertaking and discussing really requires competent staff.

We have talked about the need for competency in not only content

but language, for example, for many of our communities. Also,

there is a significant issue that has arisen on health care staffing,

including a shortage of respite care providers, where housekeeping

is involved, help with ADL when you do not need home health.

Could you share with us your observations on how serious this

shortage is, and second, is this an appropriate function for the family caregiver program to undertake to see how we can recruit,

screen, and train—what we would call the support for caregiving.

13

Could you comment on that?

Ms. CARBONELL. We have funded several of the national significance projects. For example, the American Society on Aging grant

will collaborate with the American Nurses’ Association, the National Association of Social Workers, and the American Occupational Therapy Association to increase the skill and knowledge of

their members and to link these groups and these training modules

with many of the caregivers and some of the formal, paid caregivers in communities.

When I talk about caregivers, obviously, the majority of the caregivers are informal or family members. I know we will hear from

one of the caregivers later. I am a caregiver, and as we heard at

the caregivers conference, they do not want to be called ‘‘informal’’—they are formal, 7 days, 24 hours a day. So there is nothing

informal about them. But many of the folks need a little bit of

training to assist them in caring for their relatives in a better fashion so they do not get injured and so on.

We definitely have to do better in improving the training. The

President’s budget in the HRSA category has increased training for

nurses, and we are working closely with our partners in HRSA to

extend that training to the CNAs and to the certified nursing assistants, who are the bulk of the folks providing some of this nonmedical in-home care in our communities.

We are looking, for instance, at the Family Caregiver Alliance in

San Francisco, and we are developing caregiver programs nationwide, including 10 case studies, and providing training throughout.

Senator MIKULSKI. While we are looking at all of those wonderful

case examples nationally, are you going to establish national standards for CNAs, or is this going to be left to the States? Are you

going to encourage the States on retention?

Let us put the family training aside for a moment. We know that

the first line of caregiving is the family and whatever help them

can give; but then, we are also looking at other people to support

the family.

Ms. CARBONELL. That is most important. Secretary Thompson

and all of my colleagues in HHS are working very hard—for instance, as we did with the quality indicators—we are working with

our Ombudsman Program which is under the Administration

Aging, and the quality indicators or information offices out of Center for Medicaid Services to improve the capacity of the information

that is given to relatives or persons in the nursing home.

Senator MIKULSKI. Coming back to the CNAs, ma’am, is this a

function of your program to recruit, train, and have national standards for certification of CNAs? I am not saying that you should; I

am just asking.

Ms. CARBONELL. This is not a function of the National Family

Caregiver Support Program. The National Family Caregiver Support Program is to assist family and relative caregivers in ensuring

that they have support services so they can continue to work with

and take care of their relatives.

Senator MIKULSKI. Regardless of that, I would like to offer a

challenge if I could, because I believe your incredible grassroots experience would be so helpful, and that is to establish an interagency group to really look at this shortage issue.

14

I have great respect for our Secretary of Labor, Ms. Chao, and

I know this is an area of great interest to her. We also have many

people who are now unemployment, have lost their jobs in the hospitality industry, people who already have people skills, but they

do not have these kinds of skills. I know that Ms. Chao is very concerned about unemployment, work force shortages, skills shortages.

At the same time, we have CMS under Mr. Scully. I worked with

Mr. Scully when he worked for President Bush’s father over at

OMB.

These are issues that we really have to address. It might require

new legislation, but we have got to get the work force ready for the

aging population. Presuming the program continues to be a success

and that we have the right program and the right resources in

place, we have got to have the right people, and—exactly as I

said—they have to be recruited, and they have to be screened. We

cannot have everyone going into homes or adult day care. And they

also have to be trained.

The question is what is the best way to do that. And I am not

talking about big, new bureaucracies, but I do believe there has to

be national attention not only on the fact that we have a nursing

shortage. Senator Hutchinson and I have been real leaders on the

nursing shortage issue, and we have talked about long-term care

and nursing homes and so on. But this is to keep people independent and what is the best way to do that.

So I would like you to really ponder that, and we look forward

to working with you, but we would really like an interagency group

to look at it and give us recommendations, and then let us see

where we can go—not for bureaucracy but for people.

Senator do you have further questions?

Senator HUTCHINSON. Yes, just one question.

You mentioned a couple of times the six projects of national significance under the program. I am curious first of all how much of

the total budget is allotted to these six projects of national significance, and how did you determine what those projects would be

and what kind of resources would go toward them.

Ms. CARBONELL. Out of the original $125 million for the pro- gram, $6 million was separated for programs of national significance, and it was again based on the limited numbers; the bulk of

the dollars go formula-based to States for implementation at the

State level.

Senator HUTCHINSON. But what kinds of criteria were used to establish those projects of national significance?

Ms. CARBONELL. There were five areas that we determined. One

of the areas was projects of national significance; projects of innovation that looked at, for instance, caregivers of relatives with

mental retardation and developmental disabilities. We also looked

at ethnic minorities and rural communities, and we looked at models of replication. We also looked at research in the sense of looking

at the innovation and testing these models in particular communities.

So there are four or five different criteria for the development of the $6 million innovation grants.

Senator HUTCHINSON. And will those six projects also be evaluated?

15

Ms. CARBONELL. Yes.

Senator HUTCHINSON. Will we have data on their success just as

you are going to survey the States?

Ms. CARBONELL. As a matter of fact, all the innovation grants

have outcome measures and research outcomes in them.

Senator HUTCHINSON. And the subcommittee can expect that information as well?

Ms. CARBONELL. Hopefully by the end of this year, yes.

Senator HUTCHINSON. Thank you.

Senator MIKULSKI. Thank you.

Thank you very much for your testimony. As you can see, both

of us could spend all afternoon with you listening to the innovation.

Obviously, when we hear about the flexibility, things like respite

care on wheels, also think about focusing on an area that does not

get a lot of attention, which is the male caregiver, and the fact that

it has been done in Virginia with military retirees. It really takes

enormous cultural sensitivity and really very refreshing new thinking. This is exactly what we wanted, as well as the core program

and how it would be value-added by innovation.

So we look forward to the data at the end of the year and our

ongoing collaboration with you. You bring a great deal of experience, and again, I am an admirer of our Secretary of Labor. She

was head of the United Way, so she knows the grassroots groups.

She is our Secretary of Labor, and I think we could really focus on

some of these—I am not going to call them ‘‘work force shortages’’;

we are going to call them skill shortages—and I believe that there

are a lot of people out here, particularly many newcomers to our

country, who are really looking for a ladder of opportunity, and in

health care, I think this could be a marvelous ladder.

So we look forward to working with you, and we thank you. If

you could stay, I think you might find it interesting; but if you cannot, we also understand.

Ms. CARBONELL. Senator Mikulski, may I add to my formal testimony? Maybe I did not respond directly to your question. Secretary

Thompson is particularly active, particularly with HRSA and CMS

and the entire Department, in ensuring that the nursing shortage

and the training of the work force be improved. So we are working

very actively with our partners in HHS to first of all get our house

in order in making sure that those programs are available. And in

CMS for respite programs and respite model programs in the year

2003, and in the HRSA budget for 2003, both budgets have increased dollars to ensure that the work force issue and specialized

training are tested on a pilot basis so that we can go national.

Thank you very much.

Senator MIKULSKI. Thank you very much for that clarification.

We now call up witnesses with a great deal of professional expertise and experience.

Sue Ward is Secretary of the Maryland Department of Education.

John Skirven is Executive Director of the Senior Services of

Southeastern Virginia in Norfolk.

And Barbara McSweeney is a family caregiver from Washington,

D.C.

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I know that Senator Warner wanted to introduce Mr. Skirven,

Senator Hutchinson. Did you want to do that?

Senator HUTCHINSON. You go ahead.

Senator MIKULSKI. Okay. If Senator Warner pops in, we will accommodate him.

We want to welcome our panel. First, Sue Ward, who is Secretary of the Maryland Department of Aging. She oversees 19 area

Agencies on Aging throughout our State. She earned a Master’s Degree in social work from the University of Utah, so we are sister

social workers. She is a member of the board of directors of the National Association of State Units on Aging. She has been a tremendous advocate for seniors in Maryland. She has held public office

as well as now, this appointed office, and she comes with a great

deal of hands-on experience and compassion.

We also want to welcome Mr. John Skirven. Senator Warner

wanted to be here to introduce you. He is in an Armed Services

Committee meeting right now, so just know that he wanted to be

here to welcome you himself. It was through him and working with

Senator Tim Hutchinson that we were able to bring someone like

you, with your experience.

Senior Services is the largest area agency in Virginia. John Warner told me it helps over 20,000 seniors and family caregivers each

year. Mr. Skirven is on the board of directors of the National Association of Area Agencies on Aging. He has 29 years of experience

in community-based long-term care. He, too, has a Master’s in social service from Bryn Mawr, as well as personal experience as a

caregiver, caring for his mother at home for several years before

her passing, and our respects to you.

And we welcome Ms. Barbara McSweeney, who has been a resident of the District of Columbia since 1958. She is married, with

three children, and is currently caring for her mom who has Alzheimer’s disease. She also had cared for her mother-in-law, who

passed away from cancer. So Ms. McSweeney has tremendous experience in what it is like to be a hands-on caregiver—and this is

after recently retiring after 31 years of teaching in the D.C. public

schools. She holds a Bachelor of Science degree from Shaw University, a Master’s Degree in teaching, and is an active member of the

Takoma Park Baptist Church, a volunteer for AARP in the District

Superior Court, a very active member of the United Negro College

Fund and its Washington alumni.

So Ms. McSweeney has been an advocate, a community activist,

and has really provided compassionate care.

We welcome all of you. Let us start with Sue Ward and go right

down the table, and then we will go to questions.

Ms. Ward.

STATEMENT OF SUE F. WARD, SECRETARY, MARYLAND

DEPARTMENT OF AGING, BALTIMORE, MD

Ms. WARD. Thank you very much, Senator Mikulski and Senator

Hutchinson.

I am very pleased to be with you here today to talk about a very

innovative program, the Family Caregiver Support Program. We

are excited about this program. It allows the aging network so

17

much creativity and flexibility in providing information and services to family caregivers.

Just to digress for a moment, it is a response to increasing need.

Senator Mikulski, as you talked about the ‘‘club sandwich,’’ I have

been talking about the ‘‘submarine sandwich’’ generation, where

the person is caring for the younger children and sometimes grandchildren, and aging parents and grandparents; so that stretch is

sometimes very difficult.

The National Family Caregiver Program in Maryland is overseen

by a program coordinator who works with the 19 local Area Agencies on Aging and is well aware that caregivers are often very isolated and feeling the burden of caring all by themselves. We feel

that most of all, they need information and that they can do a lot

if they can find out where the resources are and how to get help.

Our program coordinator conveys information via email, telephone calls, meetings and visits, the internet, national conferences,

any other source that she can find to work with each of the local

coordinators and their staff. Quarterly meetings are held to provide

information, and ample time in those is used for the most helpful

aspect of these meetings, which is sharing of information among

the local staff.

At each meeting, there are opportunities to ‘‘show and tell’’ some

of the services and items in the workshops that have been put into

place at the local level. In addition, there are personal visits by the

coordinator and others to the local area agency to help in any way

possible.

Each area agency in Maryland has incorporated the new functions into the existing, but enhanced specifically for caregivers.

Many local agencies are providing workshops and training sessions

for caregivers; may have support groups. Each county provides respite services and supplemental services and integrates these with

other existing State and Federal programs. The Department of

Aging has an enhanced website to include information for caregivers, and we are updating our Grandparent Resource Directory

to help grandparents who are caring for young children.

We use a consumer-directed model which allows each family to

have the maximum possibility for choice and control, and as we

move into the next phase of the program, the next years, we will

have more local staff trained in that particular approach.

As an aside, we have a wonderful and exciting demonstration

grant from the Administration on Aging which we talked about at

your field hearing, Senator Mikulski, to provide respite services to

families using that consumer-directed service model, and we plan

to use that to expand the education throughout the State.

Let me give you a couple of examples. The Baltimore County Department of Aging is providing stipends to families after individual

counseling so that respite care can be purchased by the family for

their own needs from their own area. Most of this is for in-home

care.

The Prince George’s County department has developed a

caregiving gift pack which they give out to people when they first

have information that the families need help.

18

There are other grandparent support organizations, and the

MAC on the lower Eastern Shore has asked pharmacies to place information in every, single prescription envelope that is given out.

So many people have already received assistance and relief

through this program, and Assistant Secretary Carbonell gave you

a great deal of that information, so what I would like to do is move

to the challenges, which are numerous.

There are so many caregivers who need assistance. We are doing

our best to provide the services they need, but the amount of funds

available still falls short. As you know, those of us in the State and

local Area Agencies on Aging strongly support your efforts, Senator

Mikulski, to double the program funds. We also plan to start gathering information about those people who are on waiting lists or

who cannot be served.

Another challenge that many older caregivers face is caring for

adult children with developmental disabilities, physical or mental

disabilities. Many parents use the ‘‘prayer plan’’ to solve the concern—that is, to pray that the good Lord takes the child before he

takes them, so there will always be a caregiver for that adult child.

I thank you for your interest and will be pleased to answer any

questions.

[The prepared statement of Ms. Ward follows:]

PREPARED STATEMENT OF SUE F. WARD

Mr. Chaimman and Members of the Committee: I am pleased to be here with you

today to talk about the National Family Caregiver Support Program. We are so excited about this innovative program that allows the aging network so much creativity and flexibility in providing information and services to family caregivers.

National Family Caregiver Program services are overseen in Maryland through

our program coordinator who works with our 19 local Area Agencies on Aging

(AAA). Each local AAA provides a plan for how they will implement the National

Family Caregiver Support Program. The Maryland Department of Aging provides

funding through the Older Americans Act Title IIIE, which allows AAAs to implement their plan. The State program coordinator is also a member of Maryland’s

Caregiver Coordinator Council, a working group of individuals charged with developing a model caregiver plan for all types of caregivers.

Our program coordinator works closely with the AAA coordinators via telephone

calls, e-mails, meetings and visits. Any information that would be of assistance to

them, whether from the intemet, national caregiver groups, information from conferences, or other sources is shared with each of the local coordinators and their

staff. Quarterly meetings are held to provide general information and updates about

the program and about caregiver issues. Ample time is provided for the most helpful

aspect of these meetings, which is information sharing among the local staff. At

each meeting, there are opportunities to ‘‘show and tell’’ some of the services, items,

and workshops that have been put in place. In addition, the coordinator visits each

AAA to provide individual assistance, on issues from how to report their own program activity to how to implement certain aspects of the program.

Each AAA has integrated the Information and Assistance (I&A) pieces into the

existing I&A functions, but enhanced information specifically for caregivers has

been provided. Many local agencies are providing workshops and training sessions

for caregivers, and many have support groups for caregivers. Each county provides

respite services and supplemental services, and integrates these services with other

existing State and Federal programs.

Our overall plan for the provision of respite and supplemental services is to use

a consumer directed service model, for example: maximizing the amount of choice

and control that a family has in choosing and receiving services. As we move into

the third and fourth years of the program, more local staff will be trained in how

to use this model. As an aside, we have a wonderful and exciting demonstration

grant from the Administration on Aging (AoA) to provide respite services to famiiies

using the consumer directed service model. Our plan is to use the success of this

grant program as a model and learning tool for all jurisdictions.

19

The Maryland Department of Aging has enhanced its website

( www.mdoa.state.md.us ) to include information and resources for caregivers. This

site is updated on a continual basis.

Here are some of the things that are happening at the local level:

• Baltimore County Department of Aging is providing stipends to families, after

individual counseling sessions, so respite care can be purchased from the providers

of their choice. Most families use the funds for in-home care. The maximum stipend

is $500. In the four months that this service has been offered, 133 families have

used the stipends. This is an exampie of the consumer directed care model. • Prince George’s County Department of Family Services, Division of Aging and

Disability Services is providing ‘‘caregiver gift packs,’’ which include a caregiver

planning calendar, a resource guide, and writing pads with relevant phone numbers.

Gift packs are given to people who are caring for and have applied for the Medicaid

waiver for loved ones. • Several area agencies are publishing caregiver resource guides. One of the

guides in Prince George’s County will be geared specifically for grandparent caregivers. • Several AAAs are entering into partnerships with existing grandparent support

organizations to assist in providing information and services, including respite care. • Evening, weekend, and/or daytime seminars and workshops are being held,

with topics that include dementia care, home modification, depression, and legal

issues. AAAs are offering respite care funds so that families can attend these sessions. • Caregiver training sessions are being held in many jurisdictions. Several counties have purchased training curricula for their caregiver training sessions. • Several jurisdictions have updated, or plan to update, their websites to include

caregiver information. • Dorchester County, part of the Maintenance of Aged in the Community (MAC)

area agency, has asked pharmacies to place information flyers in prescription bags

with medication. • Every jurisdiction has developed, or is in the process of developing, written materials about the caregiver program and services. These include brochures, fact

sheets, resource guides, newspaper, and other print ads.

Caregivers learn about the National Family Caregiver Support Program in a variety of ways. Many leam from the written information noted earlier in this testimony. Information is also available from our website or by calling our office or any

of the local area agencies on aging. Access to services always begins with the local

AAA, specifically through the Information and Assistance program.

So many people have already received assistance and relief through this program.

In the first quarter of this fiscal year, more than 10,000 caregivers have inquired

about and received information, and 1,700 have received one-to-one assistance.

Close to 1,300 caregivers took part in counseling or training sessions that were

geared specifically to caregivers. More than 300 caregivers have been able to get respite from their caregiving responsibilities as a result of this program.

As for how people are helped by these services, let me read you three letters that

caregivers have sent.

The first letter is from Baltimore County, from a caregiver who attended a caregivers’ conference that was held in November.

‘‘Again this moming I had the delightful opportunity to pull your glass ‘‘Caregiver

Connection;; mug from my cozy cabinet that I might indulge in some much-needed

tea. Of course, simultaneously, I thought once more about your very successful and

happily daylong conference (plus ‘‘fun,’’ ‘‘tears,’’ and ‘‘stories;;) for those of us otherwise forgotten by others and distraught within ourselves or just merely ‘‘lost.’’

Thank You! Your success is proven repeatedly day-by-day as we attendees recall salient advice, anecdotes, faces,facts and—well—precious, indefinable moments. I was

excitedly able to convince both my brother and my husband to attend as well. Thank

you again.’’

The next two letters are from Washington County, one about the respite she received, and the other about a wheelchair that was purchased using supplemental

services funds.

‘‘Respite for me has been a wonderful thing, as I am the caregiver of my husband

who has ALS. It helps relieve some of the stress of the everyday things that must

be done. All I can say is thank goodness for respite. Thank you so very much.’’

‘‘Wayne and I can not thank you enough for allowing us to get the wheelchair.

It has made such a difference for both of us. I don’t feel as much pressure to ‘‘run

around’’ and hopefully Wayne senses my patience. Again, thank you so much.’’

The challenges this program faces are numerous. There are so many caregivers

who need assistance. While we are doing our best to provide the services they need,

20

the amount of funds available, through this program and other State, Federal and

locally-funded programs, simply falls short. As you know, those of us at the State

and local levels very much want funding for this program doubled. We have not yet

begun to collect information about people who have been turned away or who are

waiting their turn to receive services, but we are planning to collect this information

next year.

Another challenge that many older caregivers face is caring for their adult children who have physical, mental, or developmental disabilities. My staff have told

me about more than one older parent who uses the ‘‘prayer plan,’’ that is, they pray

that the good Lord takes their son or daughter before he takes them. We would like

to see some support in the National Family Caregiver Support Program for older

parents who are in this situation.

Thank you for your interest. Again, we are very excited about this innovative program that allows so much creativity and flexibility in providing information and

services to family caregivers. I will be happy to entertain any questions.

Senator MIKULSKI. Thank you very much, Ms. Ward.

Mr. Skirven.

STATEMENT OF JOHN N. SKIRVEN, EXECUTIVE DIRECTOR,

SENIOR SERVICES OF SOUTHEASTERN VIRGINIA, NORFOLK,

VA

Mr. SKIRVEN. Thank you, Senator.

My name is John Skirven. I am the executive director of Senior

Services of Southeastern Virginia, the Area Agency on Aging that

serves Hampton Roads, which includes Virginia Beach, and Portsmouth. We actually serve from the ocean out to a rural county of

Isle of Wight, from the North Carolina border up to the Chesapeake Bay.

I am really pleased to be here today with my son Timothy. He

did not have the pleasure of spending much time with his grandfather as I helped my dad take care of my mom, and I am really

pleased that Tim is here with me today.

Senator MIKULSKI. Where is Tim? Welcome.

Mr. SKIRVEN. He finished his SOLs yesterday.

I am here to report on how we have implemented the National

Family Caregiver Support Program in our Area Agency on Aging,

but before I begin, I really want to thank Assistant Secretary

Carbonell for her swift actions in response to September 11. She

was able to get funds to the Arlington Area Agency on Aging in

Virginia, and they used those funds to coordinate with FEMA-funded programs and to continue to provide meds to older members following the aftermath of the attacks.

I do serve on the Board of the National Association of Area Agencies on Aging, and I have to tell you that my colleagues in New

York and New Jersey are now caring for people whose caregivers

did not come home, and the flexibility of their family caregiver support funds has allowed them to do things that otherwise could not

have been done in the past. So it is really heartfelt from all of us

around the United States for your work in behalf of older Americans. I mean that sincerely.

I can tell you that the local reaction to the Family Caregiver

Support Act was jubilant in our region. When it was passed, we

spent a day or two cheering and yelling, because we had sent thousands of letters up here to Congress, and we figured that finally,

Washington gets it—and then we realized that we had gotten what

we wanted. So we had to quickly focus our efforts on planning for

how we would use this gift to serve the families and the older folks.

21

Our leadership structure has about 75 community leaders in it.

We brought those folks together. We have about 142,000 elderly in

our region, and we are actually the largest area in the State of Virginia for older adults. We are an in-migration or a retirement destination for military, so we have a lot of families with military history. In fact, one out of every five of our retirees is a veteran.

We looked at not only what our region needed but also at what

the Act would allow us to do with these new resources, and we

found a lot of overlap. So we focused on those areas where we knew

there to be needs among family caregivers, and we also took the

challenge of having a 25 percent match. Nothing comes free from

the Government, and that means that you have got to leverage

your resources and build relationships so that you can grow what

you are given through the Government. And I am pleased to report

that we are meeting our match requirements in a very wide variety

of ways.

The gaps in service or the areas of importance that we really felt

it important to address were access to service for caregivers, which

includes care coordination, information and referral, transportation, public education and our ombudsman, respite care—our advisory councils and board of directors said we can find the printed

materials elsewhere; we need to focus on some hard services—and

finally, prescription medicines, because many of our older adults do

not have the money to buy meds.

Let me go to exactly what we have done. We are establishing a

new adult day care center that opens next month. We were able to

get a $100,000 grant from the State and match that with two

grants from United Way. I can tell you that when the Centera

Foundation heard about the family caregiver act, they kicked in,

too. It was a leveraging effect.

We have increased our homemaker services and our personal

care services. We have started a new overnight respite program.

We have taken our award-winning senior companion program, for

which we won a Governor’s award, and we have been able to use

the caregiver funds to add 15 senior companions, and each of those

folks cares for two or three other older folks in their home to provide respite care for the families. We bundled that also with a

grant from the Alzheimer’s Association.

We have added a care coordinator, an information specialist. And

in the area of pharmacies and medications, our Virginia Health

Care Foundation has a software program that has all of the applications from all of the drug houses in one place, so we are using

caregiver funds bundled with other Older Americans Act funds to

do the outreach, and in the first 12 months, about 300 people have

received over $90,000 worth of free medicine as a result. That is

a direct return on investment—

Senator MIKULSKI. I’m sorry. Could you repeat that number?

Mr. SKIRVEN. Yes, ma’am. It enabled 292 persons to save

$96,906.95 on over 1,500 prescriptions. It is remarkable. This is the

kind of creativity and flexibility that Secretary Ward was talking

about, to be able to leverage that sort of thing, and with the outcomes that come from prescription meds, you can see that we are

preventing people from having to use emergency care or needing to

use more expensive care in long-term care stay institutions.

22

We have also developed a new website and new print materials.

I believe you may have received this today. I mentioned that we

have a lot of military retirees. One of the photos in here is on the

U.S.S. Wisconsin, which is now a naval museum, and the four guys

in that picture are former enlisted people on the Wisconsin and are

now docents and volunteers for our organization.

We have been really blessed that our State unit on aging included us in this grant to reach out to retired male military caregivers. As we speak, the first of the outreach staff hired by the Peninsula Agency on Aging yesterday started yesterday. We hope to

have somebody on board in a couple of weeks. The issue there is

to reach out to men who do not want to talk about what they are

doing and who do not ask for help. I know that personally from my

own dad; it was only when we got to that point when my sister and

brother and I were asked that we pitched in. I can talk more about

my family, but I think what is important here is that what we really intend to do is reach out to those folks, bring them in, and embrace them with the other services that are available through the

Title III–E funds. All of that comes with an honor of their desire

to contribute and to participate. Folks do not want anything free;

they want to give what they can give.

We have our new print materials. Our website will be launched

on the 16th; it is an upgrade of our existing website. I have included in my testimony the story of one person, but in the interest

of time, I would really like to hear Ms. McSweeney’s testimony, because I think that is what is really important.

Thank you.

[The prepared statement of Mr. Skirven follows:]

PREPARED STATEMENT OF JOHN M. SKIRVEN

Good Aftemoon. My name is John N. Skirven. I am the Executive Director of Senior Services of Southeastern Virginia, the area agency on aging serving Hampton

Roads. We are one of the original 10 area agencies on aging established as part of

the national pilot in 1972.

I am here to report on how we have implemented the National Family Caregivers

Support Program since it was enacted in 2000.

Before I begin, I would like to thank Assistant Secretariy Carbonell for her swift

actions in response to September 11. She was exceptionally effective in expediting

the Title IV Older American Act funds to the Arlington AAA to coordinate transportation, counseling and mental health training with FEMA funded programs; and to

provide medications for older people affected by the attack on the Pentagon.

I serve on the Board of the National of Area Agencies on Aging. My colleagues

in New York and New Jersey tell the stories of parents whose caregivers did not

come home from work that night. Those AAA’s and others here in Virginia have

joined with the families ard other organizations to care for the elders left behind.

We would also like to publicly thank Virginia’s Department for Aging for expediting the release of the Family Caregiver funds last spring. Every AAA in Virginia

was able to begin delivering Family Caregiver Support Services by June 1, 2001 because the Department sought our input on funding formula issues, cleared the usual

debris from the area plan amendment pathways and allowed the greatest flexibillty

possible to enable us to get services to people.

The local reaction to the reauthorization of the Older Americans Act and the Family Caregiver Support Program was jubilant. For the first time in over five years

we had evidence that Washington got it. The seniors in our region had sent 1,000’s

of letters to Congress.

Together we had asked over and over that our Senators and Representatives reauthorize the Older Americans Act. First Senator Robb committed and then Senator

Warner completed Virginia’s commitment to a super majority. We cheered for a day

or two and got to work.

23

We knew we had a challenge because Hampton Roads has more older people than

any other part of Virginia; over 142,000 and growing fast. We are a major retirement destination, especially for military families. And our State’s older population

is expected to double by 2020.

The first thing we did at Senior Services was to engage our staff, Governing

Board and Advisory Councils in an expedited planning process foliowing the news

that the new program was a reality. Senior Services is a non-profit 501(c)(3) organization. We have over 75 volunteers in our leadership structure.

They come from every walk of life and every locality in our service area. We are

the largest AAA in the Commonwealth and are devoted to supporting and enriching

the lives of older adults and their families through advocacy, education, information

and comprehensive services.

Because we are in oonstant touch with the over 20,000 people we serve each year

and have a very cohesive aging network in our region, we knew and could document

that families neded the kinds of services that can be provided through the FCGSP.

Congress is to genuinely to be thanked for building flexibility into the Older

Amencans Act. As a local AAA, being able to respond to our community’s individual

needs is the key to the success. An analysis of allowable activities, compared to our

existing services showed us that we could adapt our existing models of care to expand services to caregiving families.

We also know, from long experience, that Federal funds come with a price. The

FCGSP has a 25 percent match requirement, so we knew that what we had to do

was leverage the new funds by strengthening the relationships we had and developing new partners who would expand services, either on an in-kind basis or wlth actual cash.

Prior to the FGSP, Senior Services had established the Hampton Roads Caregivers Coalition. Its signature event is a ‘‘Fall Festival for Caregivers.’’ The event

has grown to the extent that now attracts 250 people and is held at Little Creek

Amphibious Base. This past September, unfortunately, Little Creek was off limits

for obvious reasons. The caregivers were given a choice to cancel or move. The caregivers voted to hold the event off-base.

Senior Services is constantly monitoring for existing gaps in services and emerging trends in needs. The three service areas that our region identified as most important for family caregivers were:

Access to Services which includes Care Coordination, Information and Referral,

Transportation, Public Education and Long Term Care Ombudsman; and

Respite Care, which indudes adult daycare, homemaker services, personal care,

and senior companions.

Prescrintion Medications, especially the cost.

So, armed with a solid foundation of needs information, regulatory guidance, the

wisdom of our leaders and a lot of excitement in our network, we expanded the following services to families that were giving care to older members:

• Adult Day Care: Support for New Center in Portsmouth, VA June 2002

• Homemaker Services: Increased hours of service

• In-Home Respite: Expanded a Volunteer Based Program

• Overnight Respite: Established a new program: First in Virginia

• Personal Care: Increased hours of service

• Senior Companion Program: Increased number of Companions by 15

• Information/lntake Specialist: Added full time staff person: Senior Navigator.Com expert

• Care Coordination: Added full time staff person

• Emergency Services: Established Last Resort Purchase of Service Fund

• The Pharmacy Connection: Expanded outreach to low income seniors and families for obtaining free medicine

• Developed New Website and Print Materials

The Family Caregiver Support Act has also spawned new initiatives. Senior Services is proud to be a participant in one of them.

One in five retirees in Hampton Roads are veterans. Most are men, and the truth

is that men are pretty stoic when it comes to asking for help. I know. My father

was in Normandy. He didn’t say much about D-Day or later, about what it took to

care for my mother who was bedridden. My brother and sister and I lived far away.

When it got too much, fortunately we did taik and we did help care for my mother.

In Apnl of this year Senior Services was notified by the Virginia Department for

the Aging that we had been included, along with the Peninsuia Agency on Aging

and the Crater District Agency on Aging, in a grant funded by the Administration

on Aging to reach out to retired military male caregivers.

We have just begun to search out and engage the men who often are the most

isolated of all caregivers. We will link thern to the available services within the

24

Family Caregiver Support Program and make sure they too are receivirg all of the

benefits they should by virtue of their service to America. In fact, the first of the

staff persons began yesterday.

You have before you the new Guide for Seniors and Their Caregivers. The new

website, http://www.ssseva.org, will be launched on May 16, 2002. The attached

chart shows the types and levels of service that we have provided with Family Caregiver Support funds; and we are considering new ideas for services in the near future.

We have helped hundreds of families in just under a year and we anticipate helping thousands more before the Act is next reauthorized.

Senior Services is not alone. N4A surveyed its members in December 2001 and

collected several hundred stories of how caregivers have been helped by this program.

What I want to leave you with today is a one story of how the FGSP enabled one

woman to care for her family.

Ms. J. is the primary caregiver for her 78-year-old father. He has Alzheimer’s disease and requires 24 hour care. They live in Virginia Beach. The J’s have a son,

an alcoholic with end stage renal disease, who is in a V.A. hospital near Philadelphia. He is dying. In February of this year, Mrs. J. needed to travel to the Philadelphia area to attend to her son’s business and arrange for his funeral. There are no

other family members. Senior Services had been providing personal care for the husband, which allowed Ms. J. to get out of the house at least two hours, two days per

week. None of their insurances pay for chronic care.

The new FGSP caregiver funding allowed Mr. J. to be placed in a nursing home

for five days while Ms. J. made the trip north. She completed her son’s business

and returned home, getting up early and driving the six hours it takes to get back

to Virginia Beach.

Ms. J. arrived Friday, around 1:30 p.m. as planned. She called the Care Coordinator. She soundod tired. She was supposed to go to the nursing home and pick up

her husband. She asked if it was possible to have just one more night of service

for Mr. J. We approved the extra night at a cost of $75.00 to be paid with Family

Caregivers Support Funds.

Mrs. J. got a good night’s sleep. Mr. J. went home on Saturday afternoon. Her

son is still in the V.A. hospitaJ. Mr. J. is still at home.

Thank you for inviting me to this hearing.

Senator MIKULSKI. Thank you, and perhaps you could share that

story with us during the questions.

Ms. McSweeney, thank you so much for coming. We really do

want to hear from you.

Please go ahead.

STATEMENT OF BARBARA McSWEENEY, FAMILY CAREGIVER,

WASHINGTON, DC

Ms. MCSWEENEY. Thank you, Senator Mikulski and Senator

Hutchinson, for the opportunity to share how the National Family

Caregiver Support Program has contributed to my overall caring of

my 91-year-old mother and to my personal health and welfare. I

have been caring for my mother in our home for 3 years and prior

to that, for my mother-in-law, who also lived with us for 2 years.

There was a period of a year and a half in which I had both of

them.

I was a long-distance caregiver for my father, who lived in North

Carolina, for several years and to my aunts, who lived in Washington, DC. All in all, I have been a family caregiver for approximately

10 years.

My early years of caregiving were done with very limited information and resources. I truly value the National Family Caregiver

Support Program; I wish it had been available to me 10 years ago.

I would also like to note at the beginning that I have taken what

I have learned through the services supported by this program and

have shared the information with friends and family, including the

25

preparation of a monthly caregiver information sheet that I insert

into our church bulletin.

I receive respite services through the National Family Caregiver

Support Program, and I really feel that Home Care Partners, which

is a community-based organization under contract with the local

AAA to provide services under the National Family Caregiver Support Program, rescued me from a collision with poor mental and

physical health.

The situation had reached the point where I really felt depressed

and terminally helpless. I was unable to continue participation in

most of the social groups to which I belonged or to make any longrange plans, including doctor’s appointments.

This was traumatic for me, being a very involved person in community educational and religious activities and recently a retiree

after 31 years in the DC public school system, with great expectations of doing the things I had put on hold for a long, long time.

I was fortunate enough to attend a meeting at which I was given

information about the services provided by Home Care Partners

under the National Family Caregiver Support Program. I cannot

say enough about the importance of that information—it was really

power for me—and subsequently, the 3 hours, 2 days a week, respite that my home aide provides for me at the present time.

Because of the declining health of my mother and my being the

sole caregiver because I have no siblings, I still felt stressed many

times, but I would be more stressed without this service.

My desperate search for help and information began when I recognized that my mother showed repeated signs of dementia and

later, Alzheimer’s disease was confirmed by her doctor. I began

looking for information on the interne, libraries, everything I could

think of, and made hundreds of telephone calls to find information.

I felt so relieved to finally find out that there are places that offer

the many resources, and that there are real people, with names, at

the end of the telephone line that I can call when I just do not

know what to do.

Many of the resources available via the National Family Caregiver Support Program are just what I need to continue quality athome care for my mom, whose Alzheimer’s disease has begun to invade more rapidly.

I can sum up my feelings and say that I feel more empowered

to take charge of the challenges that caring for Alzheimer’s patients brings. I hope that not one more caregiver has to feel terminally helpless or hopeless for lack of information about resources

or how to access those services.

The respite care I have been given allows me to go to the gym,

which is something that my doctor has asked me to do to lower my

cholesterol which I have developed; I could not do this without my

home care aide. I could not run errands to do things that I need

to do or talk on the telephone and share the information I have

with other people, especially my church and university families.

This respite service is really helping to prevent my own burnout

and my own physical and mental exhaustion. This caregiver program is long overdue and without a doubt needs to be expanded

so that every caregiver will have readily available access to these

services. We need the National Family Caregiver Support Program

26

to continue the mission they have begun and to expand upon that

mission by ensuring that persons caring for our older Americans

have the resources to first take care of themselves so that they can

pass along that energy to the persons for whom they are caring.

I am one of the lucky ones. I happened to attend a meeting and

met some very good caregiving providers, because at times, I can

be very persistent. But what about the other caregivers who are

still making many, many phone calls and are told to call back, or

it is the wrong number, and they have to keep calling?

I am sure that I speak for many caregivers who are receiving

services and many who need to receive this service if they know

about it. It is empowering to know that there is a program that

cares about, appreciates, provides for, and focus on the caregiver.

There are many rewards of caregiving, but in most cases, these

rewards do not include financial income. In my own case, I could

not have continued even for a short time my substitute teaching,

my AARP volunteering with the Medicare Patrol, or mediation with

the Superior Court of DC without the help of my home aide.

Since my mother’s condition has deteriorated to the point that

she needs full-time supervision, I can once again no longer do these

things—but since talking with my advisors at Home Care Partners,

Peggy Nelson and Suzanne Athanos, and finding out about other

community resources, I do feel that my request will be forthcoming

in the near future, and I will be able to resume some of those

things that I enjoy doing very much.

Before closing, I want to thank the National Family Caregiver

Association of which I am a member for giving me this opportunity

to speak for all of my fellow family caregivers. NFCA does not provide me with the actual respite the way the Family Caregiver Support Program does, but it does provide me with the information,

the resources, and the validation of my feelings and concerns and

experiences that give me the confidence to speak to you today.

Thank you for listening to at least a part of my story.

[The prepared statement of Barbara McSweeney follows:]

PREPARED STATEMENT OF BARBARA MCSWEENEY

Chairman Mikulski, and other Subcommittee Members, thank you for the opportunity to share how the National Family Caregiver Support Program (NFCSP) has

contributed to my overall caregiving of my 91-year-old mother, and to my personal

health and welfare. I have been caring for my mother in our home for three years,

and prior to that, for my mother-in-law who also lived with me for two years. There

was period of a year-and-a-half in which I cared for both simultaneously. I was a

long distance caregiver for my father who iived in North Carolina and to several

of my aunts who lived in the D.C. area. All in all, I have been a family caregiver

for approximately ten years. My early years of caregiving were done with very limited information and resources. I truly value the National Family Caregiver Support

Program, and wish it had been available 10 years ago. I would like to note at the

beginning that I have taken what I have learned through the services supported by

NFCSP and have shared this information with friends and family, including the

preparation of a monthly caregiver information insert for my church bulletin.

I have received respite services through the National Family Caregiver Support

Program, and I really feel that Home Care Partners, which is a community-based

organization under contract with the local AAA to provide services under the

NFCSP, rescued me from a collision with poor mental and physical health. The situation had reached the point where I felt depressed, and terminally helpless. I was

unable to continue my participation in most of the social groups to which I belonged,

or to make any long range plans, including doctor appointments. This was traumatic

for me, being a very involved person in community, educational and religious activiVerDate 11-MAY-2000 14:42 Jan 21, 2003 Jkt 000000 PO 00000 Frm 00030 Fmt 6633 Sfmt 6621 79620 SLABOR2 PsN: SLABOR2
27

ties, and recently retired with great expectations for doing things that I had put on

hold in earlier years.

I was fortunate enough to attend a meeting at which I was given some information about the services provided by Home Care Partners under the NFCSP. I can’t

say enough about the importance of that information, and subsequently the three

hours two days a week respite that their home aide provides me. Because of the

declining health of my mother, and my being the sole caregiver (I have no siblings),

I still feel stressed many times; but, I would be more stressed without this service.

My search for help and information began when I recognized that my mother

showed signs of dementia and later Alzheimer’s Disease was confirmed by her doctor. I began looking for information on the internet, libraries, friends, and everywhere I could think of, including making hundreds of telephone calls only to end

up getting yet another number to call. I felt so relieved to finally find out that there

are places that offer many resources and real people with names at the other end

of a phone line to call when I just don’t know what to do. I don’t have to call all

those other numbers and get referred to another number, or call back on a certain

day to have my concerns addressed.

Many of the resources available via the NFCSP are just what I need to continue

quality at-home care for my 91-year-old mother (whose Alzheimer’s disease has

begun to invade more rapidly). I guess I could sum up my feelings now, and say

that I feel more empowered to take charge of the challenges that caring for Alzheimer’s patients brings. I hope that not one more caregiver has to feel terminally

hopeless for lack of information about resources, and/or how to access them.

The respite care I have been given allows me to go to the gym—Drs. orders to

get more aerobic exercise to lower my cholesterol—which I could not do without

these few hours a week. I could not run errands or spend some time providing telephone help to other caregivers in my church. The respite services are helping to prevent my own burnout and physical exhaustion.

This caregiver program is long overdue, and without a doubt needs to be expanded so that every caregiver will have readily available access to these services.

We need the NFCSP to continue the mission they have begun and to expand upon

that mission by ensuring that persons caring for our older Americans, have the resources to first take care of themselves, so that they can pass that energy along to

the persons for whom they are caring.

I am one of the lucky ones—I happened to attend a meeting and met some good

and caring providers. But, what about the other caregivers that are still making

many many phone calls, only to be told they have to call yet another anonymous

number? I am sure that I speak for many caregivers who are receiving services from

NFCSP, and many who need to receive these services. It is empowering to know

that there is a program that cares about, provides for, and focuses on caregivers.

There are many rewards that caregiving brings, but in most cases, these rewards

do not include financial income. In my own case, I could not have even continued

for a short time my substitute teaching, or mediation with the Superior Court of

DC without the help of my home aide. Since my mother’s condition has deteriorated

to the point that she needs full-time supervision, I once again can no longer do these

things. But, since talking with my advisors at Home Care Partners, Peggy Nelson,

and Suzanne Athanos and finding out about other community resources I do feel

that my request for more help will be forthcoming in the near future. This is so important, we can’t allow it to chance that people will automatically do these things,

therefore, I urge you to do all you can to see that this program continues and that

legislation is enacted that will mandate that family caregivers be given the training

and support they need to do a successful job of taking care of their loved one, and

at the same time feel good about themselves to the point that they can maintain

high self-esteem and confidence in the job they are doing.

Before closing I want to thank the National Family Caregivers Association, of

which I am a member, for giving me this opportunity to speak for all my fellow family caregivers. NFCA doesn’t provide me with actual respite the way the Family

Caregiver Support Program does, but it does provide me with information, resources, and validation of my feelings and experiences that help give me the confidence to speak to you today.

Thank you for listening to my story.

Senator MIKULSKI. Thank you very much, Ms. McSweeney, and

to all of the panelists.

Ms. McSweeney, I have a question for you, as one who is out

there as both a beneficiary of the service but also in touch with so

many other people through church and your other extensive comVerDate 11-MAY-2000 14:42 Jan 21, 2003 Jkt 000000 PO 00000 Frm 00031 Fmt 6633 Sfmt 6602 79620 SLABOR2 PsN: SLABOR2
28

munity network. If we wanted to strengthen, improve, or expand

the program in any way, what areas would you suggest to us?

Ms. MCSWEENEY. Awareness; to make the information more accessible, to have the PSAs and those kinds of things that the Secretary talked about—to make it so available that people would not

have to just wonder where to call, and to spread this one-stop shop

number everywhere. So I would say awareness, make people aware

of it, maybe by putting it in doctors’ offices, particularly doctors’ who see lots of senior patients. I have shared it with my mother’s

doctor. So I would say make the information readily available and

accessible.

Senator MIKULSKI. Thank you. I think that is an excellent point.

Mr. Skirven, first of all, you have, as you said, many States within the State of Virginia, and caregiving is not one-size-fits-all. What

can we do to enable there to be ongoing local flexibility but yet

standards of quality, without regulatory shackling. You heard me

raise issues around the need to ensure competency and safety for

anyone who comes into your home. They have to be competent, but

you also have to be sure that that person is the right person, for

instance, when Ms. McSweeney steps out of the home, and you are

left alone.

Could you share with us—because you sound like a man who is

committed to mission and purpose but not bureaucracy—how we

can have the standards, yet not overlegislate, regulate, or mandate?

Mr. SKIRVEN. That is a high compliment. Thank you.

In terms of having standards, the standards that are promulgated by Government, whether they be our service standards for

our Area Agency on Aging services that come from our State unit

on aging, or whether they be standards for certified nursing assistants who go into people’s homes, or whether they be the standards

for the volunteers, the screenings, the criminal record checks, the

background checks, and that sort of thing, I think there is a certain

required measure of standard-setting and investigation that you

have to have in order to be confident that the people that you are

sending to somebody’s home are right.

Senator MIKULSKI. And does the national program require that?

Mr. SKIRVEN. I do not know the answer to that. I know that our

State programs do or will. In Virginia, we are right in the middle

of redoing our service standards. I think that in terms of how we

can retain flexibility, because yes, there are many different States

within every State—within our region, we have 7 percent of the

State’s rural aging in South Hampton Roads—so you have rural

areas, urban areas, suburban areas, and I think the flexibility that

has been built into this Act allows the local communities to look

at how to best organize the resources that they have and then take

the available dollars and build on those to increase them.

As we sit here, we have waiting lists of people like Ms.

McSweeney, because we have the dollars, and Ms. McSweeney’s cohorts in South Hampton Roads have the need, but there are not

CNAs to fill the cases.

Senator MIKULSKI. You mean there is a work force shortage.

Mr. SKIRVEN. Yes, ma’am. Now, what we are doing about that at

the Area Agency on Aging level, and one of the things I would sugVerDate 11-MAY-2000 14:42 Jan 21, 2003 Jkt 000000 PO 00000 Frm 00032 Fmt 6633 Sfmt 6602 79620 SLABOR2 PsN: SLABOR2
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gest for future reauthorization of the family caregiver support, is

to allow it to be integrated with Title V of The Older Americans

Act. Right now, you cannot use III–E money for senior employment

programs. I know there is a great pool of talent and ability in

terms of people age 55 and older to provide home care and shadowing younger folks. There are many ways that this can be done.

We sit on the Work Force Investment Board, which is under the

Work Force Investment Act the local governing board. I actually

represent the aging workers on that board, and our health care

cluster—which includes the major health care providers in the region, and then, I am sort of the lone nonprofit—we are working on

different models to recruit and retain CNAs, even reaching out into

high schools. Where my son Tim attends high school— Senator MIKULSKI. But tell me what the challenges are to be able

to do that and what, if anything, we can do to help you.

Mr. SKIRVEN. You can create more flexibility within the Act with

respect to Title V and Title III–E. That is one thing specifically.

That is really my only specific for you.

Senator MIKULSKI. Thank you.

Sue, do you want to comment on that as well?

Ms. WARD. Yes. I think every State in the Nation is facing this

particular area of crisis. One thing that we are trying to do with

the Alzheimer’s demonstration project through the Administration

on Aging is to develop an entrepreneurial cadre of home health— the people that you were mentioning who have all of the interest

and the warmth and skills, and they have gone a lot of

caregiving—to help them develop a business kind of approach and

also, of course, to do the careful checking of background and so

forth. That is just one example.

There is so much to do. I think there are people out there, and

we are hoping that we can train the new Americans to provide this

kind of service as a way of integrating into the community. We are

all facing that and struggling with it.

The other thing I wanted to comment on was your question about

what can you do in the way of regulation. I agree totally that the

philosophy should be regulate not so much, and monitor a lot. If

the Administration on Aging is watching and working with us on

developing these systems, which they are, that is better than having a whole new set of regulations to have to accommodate.

I agree also that anything you can do to loosen the structure

more—but the flexibility of this Act is what has made it so valuable to us, the flexibility and the opportunity to be as creative as

we want to be, within guidelines which the AoA will monitor.

Senator MIKULSKI. Thank you.

Senator SENATOR HUTCHINSON. Thank you.

Ms. McSweeney, thank you very much for sharing your story

with us.

Mr. Skirven, I am especially interested in your efforts of outreach

to military retirees and to males. Could you expand a bit on what

you are doing particularly in regard to the military retirees?

Mr. SKIRVEN. Yes. We just signed paper on this with the State

on April 1, so this is still very new. The game plan is for—there

are three area agencies involved in that Southeastern corner of the

State. Each of us will be hiring one person in our area agency—

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we are calling it the MAC man, MMAC, or the MAC man. That

person will specifically go out to the military retiree groups, the

ship retiree groups, the retired officers association, and that sort of

thing.

It is really a matter of reaching out to where people are in nontraditional ways that we have not done before. Because one in five

of our retirees is a veteran, pretty much whenever you do a public

speaking engagement, you are going to be speaking to a retired veteran. But in terms of having specialized support groups and trying

to engage particularly men in those, men of that generation do not

share real well, so what we are doing is taking the support group

models that have been developed by the Alzheimer’s Association

and some nurses in our region and adapting those as we can bring

men into them. We are starting small. Our goal over time is to at

least get our foot in the door with groups and have retired men become our own advocates.

We are fortunate through our instance counseling assistance program to have a lot of really great retired military insurance counselors who are guys, and they are volunteering to help us do the

outreach into their circles of friends.

We are really struggling now. We originally thought that men

want to talk to a man, so we had better hire a man for this job.

In our focus groups, the retired military men say, ‘‘We do not want

to talk to a man; we want to talk to a woman about these things.’’

So—okay, go figure—we are in the process now. The Peninsula has

hired a man, and if we can hire a woman, we will be able to really

compare those kinds of activities.

Senator HUTCHINSON. Thank you.

Secretary Ward, I think you answered the question that I was

going to ask, which was what kinds of impediments and obstacles

or problems have you run into in the implementation of the Caregiver Program. I think you said and Mr. Skirven said as well that,

if anything, you like the flexibility and the ability to innovate, and

that if there is anything we should do, it is give you more. Am I

on track, and do you want to expand on that?

Ms. WARD. Yes, Senator—and double the funds would be very

nice. [Laughter.]

Senator HUTCHINSON. Thank you.

Mr. SKIRVEN. May I add to that? There is something else that

we are experiencing, and that is in regard to grandparents. You

can use 10 percent of these funds to support grandparents and parents. The fastest-growing age group of grandparents is 35 to 45 in

this country. That is the truth. But this is a 60-plus threshold. I

think that somehow we have to address the issue that we have a

new generation of young grandparents who are serving as parents.

I can tell you that my employment director—she will admit it;

we had a party for her—is 50 years old, and she is a grandparent.

She is caring for her grand-daughter, and she is a working mom.

So one of the things we have to really look at is how we make

that work and still preserve the integrity of The Older Americans

Act. That is an issue.

Senator HUTCHINSON. Okay. Thank you.

Thank you all. This has been a good hearing.

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I am going to have to leave, but I want to thank the panel for

the excellent testimony.

Senator MIKULSKI. Thank you very much, Senator, and thank

you for your bipartisan support on this.

Mr. Skirven, I want to come back to the male caregiver for a moment and also address it to a larger audience. When my father was

so ill with Alzheimer’s—and we, of course, had wonderful support

in a day care program that literally helped provide respite care for

my mother—but there were also the support services, and we were

struck by men who were caring for their spouses and, from their

perspective, the very awkwardness of this in terms of the kinds of

things that needed to be done with the activities of daily living.

They were troopers.

First of all, I think we really want to follow your retired military

thing. And when I say that we want to follow, I think this is lessons learned; I think this is a whole silent and invisible population

of men who are trying to do it on their own and not wanting to

show any sense of weakness or failure if they cannot do it—in

other words, ‘‘I can take care of my wife’’—well, maybe they cannot,

or maybe they can in some ways but not in other ways, which then

goes to the variety of support services. It could be housekeeping or

particularly the personal things related to helping with spouses— and I am now focusing only on spouses.

The other thing—and I would really like to say to the men but

also to the women who are caregivers—is not only respite care, but

I would encourage the thinking—and maybe you are doing it already; please give me feedback—is social activities. People need a

break. And my observation with some support groups is that they

do not only want to talk about their problems; they would like to

go out and go fishing or bowling or go to a motive, catch a baseball

game at Camden Yards—but essentially, some socializing, even

with people who are in the same group. So if you have to say, ‘‘I

have to leave early because my home health aide has to leave at

2 o’clock,’’ everybody will say, ‘‘Right. Goodbye Charlie,’’ or ‘‘Goodbye, Charlotte’’—and they understand. And there is nothing like

fun and being with pals and peers.

So I would encourage that, and I have a feeling that particularly

with them men in social groups, sporting activities or others, they

would get a chance to talk it over with other guys, and that is

where you can also have other people in terms of teaching. We see

this in breast cancer, the whole thing of women doing fly-fishing.

I do not know if you have heard about it, but one group of breast

cancer survivors started it—Orvis, the great fly-fishing teaching

group encouraged them to try this—not only to meet with each

other on survivor issues, but to go out and do the same exercises

that women need to do who are survivors—just as I am doing

here—of course, they would die if they saw what I just did; I am

swinging my arm like a badminton racquet rather than a fly fishing rod—but the point of the story was that they became outdoor

women. They took up fly fishing. We have a group of survivors

called ‘‘The Happy Hookers’’ in Maryland.

So my point is that in support groups and socializing, they really

had a chance for true refreshment and at the same time, camaraderie with peers who have gone through the same thing. So that

32

if somebody says, ‘‘I just need to sit on this rock for 15 minutes,’’

everybody else says ‘‘Fine.’’ They know why she has got to catch

her breath.

So I would encourage that as a way of drawing this in. Anyway,

I did not mean to go on.

Ms. McSweeney, you have several degrees in education, and we

three have degrees in social work, so we are just going to grandmother you into this social work groups. I am going to give you an

honorary M.S.W. right this minute, but do not tell the University

of Maryland or Howard.

Ms. MCSWEENEY. That is fine. I have done a little bit of that, too.

Senator MIKULSKI. So those are some of the things, but essentially, it has got to be the core program of information and referral,

of real, genuine services, and then a certain hospitality around inviting caregivers in to do this.

It seems to me that one of the characteristics has to be one of

hospitality because the family caregiver or someone else in the

family acting in behest of the family caregiver is usually so enormously stressed that they need welcoming with every call; with

every call, that has to be one of the signatures.

Is this hard to do? Is it hard for you to get staff to do this? If

staff are overburdened and receiving all kinds of calls, how does

this all work, Ms. McSweeney?

Ms. MCSWEENEY. How is it working?

Senator MIKULSKI. Well, how do you experience it? I mean, do

you get a different person each time? Do you feel like a number?

Do you feel like a statistic?

Ms. MCSWEENEY. Sometimes, yes, but the home aide that we

have has been with us for a while, and she is wonderful. We know

her, and my mother has developed as much of a relationship as she

can develop with her.

But sometimes when I call for additional services, until I talked

with Ms. Nelson, from Home Care Partners, to find out all the information that I can have access to, and she can sort of help me

run interference to get the information and the services that are

available, it is much better—much, much, much better.

Senator MIKULSKI. That sounds good.

Would others like to comment?

Mr. SKIRVEN. We hired an information and referral person, and

with III–E, we had to hire a third. I have to keep saying that the

fact that these dollars are here and this program is in place made

everybody so happy and so excited that there is a real enthusiasm

about helping, because we feel supported.

One of our intake specialists is over 65, and he has a voice like

honey. The other lady is legally blind, so she really has an empathy

for the people to whom she speaks on the phone. That lady has a

master’s in social work, too, so these are talented people.

The third person we hired is a young woman who was a customer service rep for a health insurance company, and she is tickled pink not to have to be talking to disgruntled customers, so she

always has a smile on her face when she comes to work.

I think we really do believe in the individual integrity of everybody who calls us, and it is our job to—if Ms. McSweeney calls, we

33

are there to serve her. That is kind of the culture that we have

done with our staff.

So is it hard for our staff to do that? No. Do we sometimes have

cranky days? Yes. But I think we are really in it for the people

whom we serve, and that is what drives it, and the notion that we

are all in this together, so we know that our State unit is behind

us. Your having this hearing today tells us that this is behind us.

Senator MIKULSKI. Well, we are going to hold it every year.

Ms. WARD. Senator, could I just brag for one minute?

Senator MIKULSKI. Yes, go ahead, Sue.

Ms. WARD. I think we have the prime receptionist in the whole

country. She is 90 years old, comes to work every day and works

a full day. Her job as she sees it is to work with each individual

senior who calls and make sure they get to where the need to be,

with gentleness, graciousness, and Irish wit—she is Irish.

I was getting some complaints once in a while—and this is probably a story I should not tell—from some people in the Governor’s

office because they were flipped over to the voice-mail and waited

7 minutes sometimes before getting a call back. But that is because

she will never put a senior on hold. She says that one of these

days, she may be that way herself and may need that kind of help,

so she is going to be there for them.

Senator MIKULSKI. That is a great story.

Ms. WARD. Yes. She is wonderful.

Mr. SKIRVEN. There is a practical matter, if I might add.

Senator MIKULSKI. Yes.

Mr. SKIRVEN. You have the information haves and the information have-nots, and that means computers and interne.

Senator MIKULSKI. Yes; the digital divide.

Mr. SKIRVEN. Yes. It is a very real issue when you talk about different States within a State. We have a new board member from

Branchville, VA who happens to be on the volunteer fire department, and he talked about the circle that had been broken because

so many of the older ladies in his community had died. Every day,

one would call one, and the next one would call the next one, and

the next one would call the next one. He told me that he was so

glad to have been appointed to the Board by the county board of

supervisors because now what he would do is take this brochure

and give it to his women’s auxiliary for the fire department and

ask them to take on rebuilding that circle.

The internet absolutely, positively has to be there, but I think

part of what we need to be thinking about is how we can use existing community structures.

Senator MIKULSKI. Thank you, and I think you are right. There

are different ways for different people. It could very well be that

it is the grandchild who goes on the internet to find the resources

for the grandmother and so on.

But I think that what we are impressed with at today’s hearing

and at the Federal level from our assistant secretary and those of

you at the grassroots level is the dedication—whether it is the

dedication of being at the bedside of your own family member— and, Ms. McSweeney, I know the experience of the long goodbye— and in fact, later on this month, the United States Congress will

give the Reagans the Congressional Medal of Honor—really, I

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think the first caregiver is a former First Lady, and I have referred

to her as ‘‘America’s First Caregiver,’’ as Mrs. Reagan continues,

every day, to say goodby to President Reagan—and we all do in one

way or another, and there are all of these wonderful guys out there

named ‘‘Ron’’ or ‘‘Linda’’ that we are saying goodbye to.

So caregiving is with the family, and we say thank you to each

and every person who every day is caring for somebody whom they

love, and they do it because it is the right thing to do. And for all

of you who are giving help to those who are practicing self-help, we

say thank you.

We want to ensure that there are adequate resources and the

right legislative and regulatory framework. It is my intention for

as long as I chair this subcommittee to hold an annual hearing on

caregiving. I want to make sure that we do not lose sight of this

program. To me, this is not just one more program; I believe this

is one of the anchor programs in services to the elderly. Medicare,

in terms of its health care—that we need a prescription drug benefit has been very clearly indicated; we need to help our families be

able to help other members of their families and really ensure that

there is income security—if we are in the country that invented the

drugs, you ought to be able to afford the drugs—and last but not

at all least, if we really do say that we want to put families first,

we need to say it and put it in the Federal checkbook.

So we want to thank you for the very important roles that you

play. Ms. McSweeney, thank you. And to my brother and sister social workers, I am really proud of the great job that you are doing,

and I know that you really represent all those who are working in

the field of aging.

So God bless you, and may the force be with us.

This hearing is adjourned.

[Whereupon, at 4:08 p.m., the hearing was adjourned.]

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