```

[Senate Hearing 107-448]
[From the U.S. Government Publishing Office]

                                                        S. Hrg. 107-448

                   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

79-620              U.S. GOVERNMENT PRINTING OFFICE
                            WASHINGTON : 2002
____________________________________________________________________________
For Sale by the Superintendent of Documents, U.S. Government Printing Office
Internet: bookstore.gpr.gov  Phone: toll free (866) 512-1800; (202) 512�091800  
Fax: (202) 512�092250 Mail: Stop SSOP, Washington, DC 20402�090001

          COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

               EDWARD M. KENNEDY, Massachusetts, Chairman
CHRISTOPHER J. DODD, Connecticut     JUDD GREGG, New Hampshire
TOM HARKIN, Iowa                     BILL FRIST, Tennessee
BARBARA A. MIKULSKI, Maryland        MICHAEL B. ENZI, Wyoming
JAMES M. JEFFORDS (I), Vermont       TIM HUTCHINSON, Arkansas
JEFF BINGAMAN, New Mexico            JOHN W. WARNER, Virginia
PAUL D. WELLSTONE, Minnesota         CHRISTOPHER S. BOND, Missouri
PATTY MURRAY, Washington             PAT ROBERTS, Kansas
JACK REED, Rhode Island              SUSAN M. COLLINS, Maine
JOHN EDWARDS, North Carolina         JEFF SESSIONS, Alabama
HILLARY RODHAM CLINTON, New York     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     TIM HUTCHINSON, Arkansas
PATTY MURRAY, Washington             JUDD GREGG, New Hampshire
JOHN EDWARDS, North Carolina         JOHN W. WARNER, Virginia
HILLARY RODHAM CLINTON, New York     PAT ROBERTS, Kansas
                    Rhonda Richards, Staff Director
             C. Kate Lambrew Hull, Minority Staff Director

                            C O N T E N T S

                              ----------                              

                               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

 
                   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. 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 day-to-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 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 two-thirds 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 much-needed 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 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.

 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 
in-home 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.
    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.
    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, advisory 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.
    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.
    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 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 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.
    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 non-medical 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.
    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 
program, $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?
    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.
    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 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.
    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.
    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, 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.
    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.
    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.
    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 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 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 long-range 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 at-home 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 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 activities, 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 community 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 suggest 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--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.
    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 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 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 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.]


```