[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
____________________________________________________________________________
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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
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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.]