[Senate Hearing 107-824]
[From the U.S. Government Publishing Office]
S. Hrg. 107-824
FACES OF AGING: PERSONAL STRUGGLES TO CONFRONT THE LONG-TERM CARE
CRISIS
=======================================================================
HEARING
before the
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED SEVENTH CONGRESS
SECOND SESSION
__________
WASHINGTON, DC
__________
SEPTEMBER 26, 2002
__________
Serial No. 107-37
Printed for the use of the Special Committee on Aging
U.S. GOVERNMENT PRINTING OFFICE
83-478 WASHINGTON : 2002
___________________________________________________________________________
For Sale by the Superintendent of Documents, U.S. Government Printing Office
Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; (202) 512-1800
Fax: (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001
SPECIAL COMMITTEE ON AGING
JOHN B. BREAUX, Louisiana, Chairman
HARRY REID, Nevada LARRY CRAIG, Idaho, Ranking Member
HERB KOHL, Wisconsin CONRAD BURNS, Montana
JAMES M. JEFFORDS, Vermont RICHARD SHELBY, Alabama
RUSSELL D. FEINGOLD, Wisconsin RICK SANTORUM, Pennsylvania
RON WYDEN, Oregon SUSAN COLLINS, Maine
BLANCHE L. LINCOLN, Arkansas MIKE ENZI, Wyoming
EVAN BAYH, Indiana TIM HUTCHINSON, Arkansas
THOMAS R. CARPER, Delaware JOHN ENSIGN, Nevada
DEBBIE STABENOW, Michigan CHUCK HAGEL, Nebraska
JEAN CARNAHAN, Missouri GORDON SMITH, Oregon
Michelle Easton, Staff Director
Lupe Wissel, Ranking Member Staff Director
(ii)
?
C O N T E N T S
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Page
Opening Statement of Senator John Breaux......................... 1
Statement of Senator Debbie Stabenow............................. 2
Prepared statement of Senator Larry E. Craig..................... 3
Statement of Senator Ron Wyden................................... 23
Panel of Witnesses
Kathryn G. Allen, Director, Health Care, Medicaid, and Private
Health Insurance Issues, United States General Accounting
Office......................................................... 4
Shannon Broussard, Executive Director, Cajun Area Agency on
Aging, Inc., Lafayette, LA..................................... 24
Lisa Yagoda, MSW, LICSW, Senior Staff Associate for Aging,
National Association of Social Workers, Washington, DC......... 59
Maj. Kevin Stevenson, Silver Spring, MD.......................... 65
APPENDIX
Testimony submitted by Grannie Mae............................... 79
Testimony by the Social Services Block Grant Coalition........... 84
(iii)
FACES OF AGING: PERSONAL STRUGGLES TO CONFRONT THE LONG-TERM CARE
CRISIS
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THURSDAY, SEPTEMBER 26, 2002
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The committee convened, pursuant to notice, at 10:05 a.m.,
in room SD-628, Dirksen Senate Office Building, Hon. John
Breaux (chairman of the committee) presiding.
Present: Senators Breaux, Wyden, Lincoln, Stabenow, and
Craig.
OPENING STATEMENT SENATOR JOHN BREAUX, CHAIRMAN
The Chairman. The committee will please come to order. Our
committee has the responsibility to look forward and see that
our country is prepared to handle the long-term care needs of
the pending age wave of some 77 million baby boomers. That is
why we have devoted some 13 previous hearings to various
aspects of long-term care. Over the course of our hearings, we
have learned a great deal of important information from our
witnesses, but two themes, I think, have been heard over and
over again.
The first is that the demand for long-term care services
far exceeds the available services that are there. The average
person that needs long-term care assistance must depend on
family for everyday support to live independently.
The second recurring theme is that there is an
institutional bias. Most Medicaid dollars are spent on
institutional care. It is an entitlement to go into a nursing
home, but you need a waiver to stay in your own home. This
policy is upside down.
Today, we want to explore the personal side of the long-
term care issue. We want to put some names and faces on these
issues. What is it like to try and navigate through such an
inefficient and outdated long-term care system? Will you
receive better services if you live in Oregon rather than in
Louisiana? Where do you begin your search? Who do you call?
What do we need to know?
While we cannot overhaul the long-term care system
overnight and offer everyone the services that they need, we
can offer families some assistance in their search for long-
term care. This card lists resources on one side that you can
either access with a telephone call or a computer website. The
other side lists steps to take and basic questions that you
need to ask in order to find care for your loved one.
Hopefully, this will be helpful to people who are facing or
will soon be facing a long-term care situation in their family.
I would like to recognize our good friend and colleague,
Senator Stabenow from Michigan, if she has any comments on this
issue she would like to make.
OPENING STATEMENT OF SENATOR DEBBIE STABENOW
Senator Stabenow. Thank you. Good morning, Mr. Chairman,
and thank you to those who are sharing information today. This
is such a critical issue.
I would first ask that my statement be submitted for the
record.
The Chairman. Without objection, it will be made part of
the record.
Senator Stabenow. Thank you. We have so many challenges in
front of us for families and I think it is important that we
focus on how this issue affects patients in their homes, and
directly affects their families, and loved ones.
While there are many, many challenges, associated with
long-term care providers in Michigan are trying to be creative.
Michigan office of services to Aging has developed something
called miseniors.net, which is a comprehensive portal to long-
term care services for seniors. Adult children can research
their options, connect with human services workers and so on;
and so they are trying to be helpful by bringing together
information.
But I know that all of us either have faced in our own
family or will face the challenges that come with a parent, a
spouse, or a loved one who needs some kind of long-term care/
and the challenges of wanting to keep them at home as long as
possible. We should receive support to do that. We need a
system that can help families, keep loved ones at home but also
have out-of-home care available.
This is a real challenge and I appreciate your ongoing
focus on this. Living longer is a good thing, but the challenge
of living longer and what that brings for us will become an
even more important issue as we move forward, so thank you, Mr.
Chairman.
The Chairman. Thank you, Senator.
[The prepared statement of Senator Stabenow follows along
with a prepared statement of Senator Larry Craig:]
Prepared Statement of Senator Debbie Stabenow
I want to thank Chairman Breaux and Senator Craig for
holding this hearing. Looking at the broad systemic challenges
of financing and delivering long-term care is essential to
crafting a better approach for America's seniors and disabled
citizens. However, too often we get caught up in technical
policy details and not pay enough attention to the daily
experiences of men and women seeking long-term care for their
loved ones. Understanding their plight is also essential for
good policy making.
As Senators, we have the luxury of information resources.
Our staff, the Congressional Research Service, our state
agencies and academia all help us understand the complicated
web of financing and delivery systems that make up long-term
care. Who helps the young mother with a busy home and career
navigate the complexities of securing care for her aging
parents? What about the elderly man, struggling with his own
limitations, who needs help caring for his wife who can no
longer feed or clothe herself?
Like other states, Michigan's long-term care system is not
easy for consumers to steer: there is no single point of entry,
no early intervention strategies, few choices for care, and an
emphasis on institutionalization over independent living.
Phyllis Moga of Grand Rapids, Michigan is all too familiar
with the challenges of the system. Her mother suffered from
Alzheimer's and when it became clear that she could no longer
be left alone, Ms. Moga and her three sisters turned to private
in-home aids for help. They knew that their mother would not be
eligible for Medicaid, and therefore had no access to public
assistance with home care. She did not qualify for the Medicare
home health benefit because her condition was not acute.
They put ads in the newspaper looking for home health aids
to stay with their mother during the day while they could not
be there. They hired one after another, and inevitably, the
aids would leave their mother alone or not show up at all.
Although the private care was inadequate, Ms. Moga and her
sisters spent so much money on it that her mother soon
qualified for Medicaid. Unfortunately, they heard that it was
next to impossible to secure Medicaid assistance for home care
because there were only limited slots. So, while her mother
could have thrived with some help at home, Ms. Moga and her
sisters placed her in a nursing home.
They had no help in finding the home as they did not know
about the Long-term Care Ombudsman nor the Department of
Consumer and Industry Services. They chose the home based on a
tour of the facility and the assurance of that it complied with
state regulations.
Ms. Moga's mother experienced three years of abuse and
humiliation at the home, including being found in bed with a
broken hip and bruises on her arms. Not knowing where to turn,
Ms. Moga became a member of the Family Council, an intermediary
between the nursing home administrators and families of those
housed there. She fought tirelessly to hold them accountable
for the abuse, secure additional staff and promote training
within the facility.
Three months ago, Ms. Moga's mother was rushed to the
hospital by the nursing home suffering from a bowel
complication that could have been avoided with proper care. She
passed away upon arrival at the emergency room.
Shortly before her mother's death, Ms. Moga met someone
from Citizens for Better Care, also known as CBC, who attended
a meeting of the Family Council. CBC helped her file a
complaint with the Michigan Department of Consumer and Industry
Affairs. She just recently received a letter saying the state
could not determine that the nursing home did anything wrong.
Needless to say, Ms. Moga is devastated by what happened to
her mother. She believes strongly that had she known more about
the system and the resources available to help her, things
would have been different.
It is not all doom and gloom in Michigan. Long term care
providers are being creative in their approaches to fixing the
problems. One impressive innovation is the creation of
MISeniors.net, which is a comprehensive portal to long-term
care for seniors, adult children researching their options and
human service workers in the field of aging. It provides a
wealth of information and serves as a much needed starting
point.
I look forward to continuing to tackle the many challenges
we face around the country in providing quality care to our
seniors. It is very important that we share stories today, like
Mrs. Moga's story I have shared with you, to understand how
finding long term care solutions is a real, daily struggle for
families everywhere. I hope that this hearing helps this
committee focus its efforts to help families so that tragedies
like the Moga family experience can be prevented in the future.
------
Prepared Statement of Senator Larry Craig
Good morning. I would like to thank the Chairman for
holding this important hearing today. I would also like to
thank all of the witnesses here today for agreeing to testify
before this committee about our nation's long-term care system.
This hearing is important because we need to focus the
nation's attention on long-term care reform. Our long-term care
system is lagging behind the need as Americans are living
longer. These problems will only become worse as 77 million
baby boomers reach retirement age.
One of the biggest problems facing our long-term care
system is access to information. Services and funding available
vary from state to state, making an individuals' search for
appropriate care extremely complicated. Many Americans don't
know what services are available to them, how to choose the
services, how much they cost, and where they can go for
financial help. Americans need to be armed with the best
information available in order to make important decisions
regarding complex long-term care programs.
For example, in my state of Idaho, we have one toll free
number for seniors. Seniors or their families can call one
number and the call is automatically transferred to the Area
Agency in their community. This helps to eliminate some of the
confusion and gives seniors one place to go for information.
Throughout the process of reform, we need to look at
devising methods to finance our long-term care system. We
should also make it a priority to help Americans plan for their
future. For example, the federal government has already started
to make long-term care insurance an option for their employees.
Information about long-term care insurance and other options to
help finance care should be made readily available.
All Americans should be informed and should have access to
long-term care services. They should also be provided with
appropriate information in order to make educated family
decisions as to what services are best suited for them. It is
very important that we find solutions to the problems plaguing
the long-term care system to that we may continue to depend on
quality care to help take care of our loved ones.
I'd like to thank each of witnesses for being here today
and for sharing their insights into this complex problem. I
look forward to hearing your testimony.
The Chairman. The card that I referred to, of course, in my
statement is the blue card that we have up here which the
committee has prepared which is sort of a guide for people who
are initially approaching the question of accessing long-term
care at home. Of course, as I indicated, the first part of the
card lists all the free services that are available to help you
in finding how to determine what is best in terms of long-term
care for your loved ones. Who can you call to get the
information that you need? A lot of people simply do not know
where to start. Our card kind of gives them a good starting
point.
A second part of the card, on the back, gives them helpful
suggestions about how they should go about making these
decisions and also the type of information that you are going
to need before you start seeking ways to provide long-term
care, so you can have everything in order as you proceed down
this somewhat complicated path to finding out what is best for
you and your family.
We are delighted to have our panel of witnesses this
morning. We will start with Ms. Kathy Allen, who is Director of
Health Care, Medicaid, and Private Health Insurance Issues over
at the General Accounting Office, who works so closely with our
committee. I understand she is going to discuss the recent GAO
report that has been released specifically for this hearing, in
which we have asked them to look at sort of the status of long-
term care services in four States, my own State of Louisiana,
Kansas, New York, and Oregon.
Ms. Allen, we thank you for being with us. You may proceed.
STATEMENT OF KATHRYN G. ALLEN, DIRECTOR, HEALTH CARE, MEDICAID,
AND PRIVATE HEALTH INSURANCE ISSUES, UNITED STATES GENERAL
ACCOUNTING OFFICE
Ms. Allen. Thank you, Mr. Chairman, Senator Stabenow. It is
a pleasure to be here today as you continue this series of
hearings on the public sector role that will help meet the
long-term care needs of America's seniors.
Long-term care spending, as you noted, is already a
substantial part of Federal and State budgets and the impending
tidal wave of the baby boom generation is only going to
continue to increase demand for these services. Despite the
fact that the bulk of current long-term care spending is for
institutional care, the greatest interest and demand will
undoubtedly be increasingly for in-home and community-based
care that will enable individuals in the face of declining
health and independence to remain in their homes and
communities as long as possible.
This morning, I would like to focus my remarks on
highlights of the report that we completed at your request, Mr.
Chairman, on coverage of long-term care in home and community-
based settings. We focused specifically on Medicaid because it
is currently the largest payer for long-term care services
nationwide.
We wanted to give this work a real-life flavor, and so we
approached it from the point of view of an elderly person with
a very specific set of needs who is seeking care directly from
a Medicaid case manager. Now, obviously, there are other
avenues that one could pursue for needed services, and I trust
that other witnesses today will be able to address some of
those other avenues.
For our work, however, we developed profiles of two
hypothetical elderly persons, an 86-year-old wheelchair-bound
woman with debilitating arthritis, and a 70-year-old man with
moderate Alzheimer's disease who is recovering from a hip
fracture. These individuals would be immediately eligible for
nursing home care financed through Medicaid, but they would
prefer to remain at home. For each of these two hypothetical
persons, we developed three scenarios where they had varying
levels of informal care available from their family. We then
asked four Medicaid case managers in each of the four States
you mentioned to develop care plans for the scenarios.
To illustrate our findings across the scenarios, let me
focus on just one of them, the 86-year-old woman, who we named
Abby, who has physical limitations due to debilitating
arthritis and type II diabetes. This is a very typical
situation that I am sure many of us can relate to. Abby is
wheelchair-bound, has developed a pressure sore as a result,
and she has some degree of difficulty with all activities of
daily living, including eating, dressing, bathing, using the
toilet, and getting in and out of her wheelchair. She needs
help to take her medications and to check her glucose levels
daily to monitor her diabetes.
Her husband, who had been her primary caregiver, has
recently died. Abby has now moved in with her daughter, but she
herself is overwhelmed by her new caregiving responsibilities
for her mother, in addition to the fact that she is caring
full-time for her own grandchild.
Across the 16 care plans that we identified, all but one of
the case managers offered Abby services that would help her
stay at home. But the number of hours of in-home care varied
considerably across these case managers, ranging from 4.5 hours
in one situation to 40 hours in another. To augment this care,
several case managers also offered her adult day care, ranging
from eight to 24 hours a week. This adult day care would
provide her with additional hours of care and would also
provide her daughter with some respite.
Case managers also offered Abby, to varying degrees,
additional services, such as home health care, sometimes
financed by Medicaid, sometimes by Medicare; home-delivered
meals; assistive devices for the bathtub, such as a grab bar or
transfer seat; emergency personal call device; volunteer senior
companionship; and family caregiver counseling or respite to
help her daughter. Some of these services were covered by
Medicaid, while in other cases they were available through
other Federal, State, or local programs.
The care plans that case managers developed in response to
our scenarios reflected what would be offered to individuals
assuming no constraints on the number of individuals who they
could serve. But in reality, we found that in some cases there
were waiting lists, because the services were being provided
through Medicaid waivers, that would preclude these people from
being able to immediately obtain the home or community-based
services paid for by Medicaid.
In general, across the various scenarios we explored, we
found that case managers developed care plans that relied
largely on in-home services. In the few cases where they
recommended that Abby or Brian move to a nursing home or other
residential care setting, it was almost always because he or
she was living alone, had no family or other informal support
available, and the case manager was concerned that the
individual could not be safe at home.
In the majority of cases where in-home care was offered, we
found there was considerable variation in the number of hours
offered and in the extent to which other locally available non-
Medicaid services would be factored into the care plan.
In conclusion, Mr. Chairman, we found that the same
individual, who is Medicaid-eligible, who is elderly, with a
certain set of disabling conditions, care needs, and family
support would find very different care plans in terms of the
type and volume of services that would be offered. These
differences arise, in part, from decisions that States have
made in how they design their long-term care programs and the
amount of resources they are able to devote to them. But these
differences also a rise, very significantly from a lack of
consensus as to what services are needed to compensate for
disabilities and what balance should exist between publicly
available services and that which the family can provide.
Mr. Chairman, this concludes my prepared remarks.
The Chairman. Thank you very much, Ms. Allen. We will have
some questions, of course, for you.
[The prepared statement of Ms. Allen follows:]
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The Chairman. We have been joined. I recognize Senator
Wyden is here. Do you have a comment or two before we proceed?
OPENING STATEMENT OF SENATOR RON WYDEN
Senator Wyden. I will be very brief, Mr. Chairman. Thank
you, first of all, for all of your leadership. The willingness
that you have shown to constantly use this committee to
aggressively inquire into these issues that are so important to
older people is something that I very much appreciate. It is
exactly what this committee ought to be doing. We appreciate
your leadership.
I would just offer one short word with respect to the topic
at hand, the question of home and community-based services for
older people. We are so pleased with this report and its
account for how Oregon is doing, back in the early 1970's when
I was with the Gray Panthers, home and community based care
struck us as one of the very best investments that you could
possibly make, and that is true now given the demographic
tsunami that is coming. I mean, we know in 2010, 2011, there
are going to be millions of older people, and back then we
tried to say, here is an opportunity to give older people more
of what they want, which is to stay in the community, in home
and community-based facilities, at a price that is less to the
taxpayers than the institutional care.
So Oregon began then to pioneer with a special set of
waivers, a variety of new approaches. We came to some of the
same conclusions, I think, you have, Mr. Chairman, and that is
this sort of one-size-fits-all approach does not make sense. I
think this hearing gives us an opportunity to examine some
important questions, particularly one that in our part of the
world is very troubling to people, and that is that, somehow,
when you do a good job in this country, when you are
innovative, when you hold costs down, when you give good
quality, somehow, the Federal Government then turns around and
says, well, we are going to pay you less. We are going to give
you reduced reimbursement for having done all this heavy
lifting and being innovative and exploring new approaches.
So we are really pleased about the marks that GAO gave the
Oregon program and I am especially grateful for your
leadership, Mr. Chairman, and constantly using this committee
to be on the cutting edge of gerontology.
The Chairman. Thank you very much, Senator, for your
comments.
Now, from my area in Louisiana, I am very pleased that she
was able to get up here. I do not know if you came up yesterday
or when, but the weather is kind of wet down there and we are
very glad that Shannon Broussard was able to make it up,
although 20 inches of rain in New Orleans is just high
humidity. [Laughter.]
In some States, it is about a 10-year total of rain. We got
it in one day.
Ms. Broussard is Director of the Cajun Area Agency on Aging
in Lafayette, LA, and will talk about their role in assisting
older individuals in finding the best long-term care solution.
Shannon, welcome to the committee and we are glad to have your
input.
STATEMENT OF SHANNON BROUSSARD, EXECUTIVE DIRECTOR, CAJUN AREA
AGENCY ON AGING, INC., LAFAYETTE, LA
Ms. Broussard. Good morning, Chairman Breaux and
distinguished members of the Senate Committee on Aging. I
appreciate you asking me to come, and I really do want to
apologize that Isidore followed us up here. It did shift a
little east, so we were able to by way of Houston come in, so
it was not too bad.
AAAs are the first place most older individuals will go to,
or their family members, to find some long-term care services.
We were established in 1973 through the Older Americans Act and
we provide for a community-based structure of supportive and
nutrition services. My AAA, Cajun Area Agency on Aging, serves
eight primarily rural parishes in South Louisiana. Based on the
unofficial 2000 census, there is approximately 91,000 people
over the age of 60 in our eight-parish area.
Most served by the Act are the neediest, mostly women, many
are rural, and most are poor, and thanks to the recent
reauthorization of the Older Americans Act, we now have the
National Family Caregiver Support Program, which enables us to
meet the needs of some new constituents and they are the
caregivers of older individuals, and so we are able to provide
them some little bit of care, not as much as they would like,
but it does help.
Thanks to the advances in health care and medical
technology, life expectancy has increased to age 76.9, and with
that increase in age, life expectancy, we have increased needs
of long-term care services.
Currently, two options are available in Louisiana. You have
institutional care or you have care provided by a family
member. Though many older adults prefer receiving care in their
home, Louisiana has an institutional bias. Medicaid is
responsible for 80 percent of nursing facility care in
Louisiana, and for the most part, government-subsidized care is
the only available nursing care for patients. Currently,
Louisiana Medicaid programs fund 1,804 in-home and community-
based waiver slots. We have 518,000 people over the age of 65
and we have 1,800 waiver slots. What has happened with those
waiver slots, we have to be at or below nursing home care, the
cost of nursing home care.
Cajun Area Agency on Aging provides supportive and
nutrition services to approximately 13,500 individuals. These
programs have been the salvation for those who, if they would
not have these services, would more than likely end up in
nursing facilities.
Throughout Louisiana, family, friends, and neighbors have
been the main source of help for the elderly members of our
community. At present, the majority of the requests that Cajun
Area Agency receives are for in-home care. That would be sitter
services, respite services, or nursing care services, and many
of the requests are from individuals who do not qualify for
subsidized care and who need a little more than our home-
delivered meals and homemaker services to stay at home.
As an agency, we do our best to refer services to those
individuals so they can remain at home. All are advised to call
the Medicaid request for services registry and have their name
placed on the waiting list for waiver services, even though
they are not financially eligible, because we figure that, in
time, by privately paying for home care, they will become
Medicaid eligible, and hopefully, by the time they do that,
they will be at the top of the list.
A comprehensive national policy that shifts the focus and
funding of long-term care to community-based services is
essential to meet the needs and address the desires of our
older population. Independent dignity and choice are values we
all possess, especially our older adults. By shifting national
policies to home and community-based services, the quality of
life for older adults will improve, taxpayers will be spared
the cost of premature and expensive institutional care, and our
nation's core values will be honored.
I do want to say that I do have some recommendations in my
written testimony that I hope that you will have a chance to
look through.
We get in between 10 and 15 calls a month from an older
person or a family member looking for some type of care because
we do not want to put Mom and Dad in a nursing home. We do our
best. We will provide them a home-delivered meal. We will give
them some caregiver services. We were able to serve some
individuals a good amount of care for the first 6 months of our
caregiver program, but now we have had to cut back because
everything comes up to how much it costs. Those who did receive
caregiver services were very pleased with it, so I think we
need to continue and do our best to take care of people at
home.
The Chairman. Thank you very much, Shannon. We will have
some questions with you, and thank you for being up here under
difficult circumstances.
[The prepared statement of Ms. Broussard follows:]
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The Chairman. Lisa Yagoda is the Senior Staff Associate for
Aging at the National Association of Social Workers here in
Washington. I think you are going to talk about barriers to
long-term care and the role of caseworkers in helping them find
those services, so we are glad to have you here.
STATEMENT OF LISA YAGODA, MSW, LICSW, SENIOR STAFF ASSOCIATE
FOR AGING, NATIONAL ASSOCIATION OF SOCIAL WORKERS, WASHINGTON,
DC
Ms. Yagoda. Thank you. Good morning. On behalf of NASW's
nearly 150,000 members, I thank Chairman Breaux, Senator
Stabenow, Senator Wyden, and their fellow Senators on the
committee for holding this hearing. NASW appreciates the
opportunity to highlight some of the issues professional social
workers are faced with when educating clients about long-term
care services that are available in the community.
The combination of physiological, psychological, and social
changes that accompany aging can have a significant impact on
the quality of life for seniors, often necessitating a need for
supportive services and the skills of a professional social
worker.
Social workers are prepared for professional practice
through a combination of education and field experience.
Professional social workers are licensed or certified and
adhere to a strict code of ethics. In our work with older
Americans, professional social workers practice in a wide
variety of settings and at a variety of levels. Social workers
provide services to active and healthy older people living in
the community, as well as those who reside in institutions.
In the long-term care arena, social work services are
provided not only to the older adults, but also to family
members and caregivers. The ultimate goal of social work
services for older individuals is to reinforce their existing
strengths and capacities while maximizing independence and well
being.
When informing and educating the public about long-term
care services, we as policymakers and service providers are
faced with the formidable task of how to best meet the needs of
all care recipients while at the same time providing a
streamlined system of access, outreach, and service delivery.
This is a particularly difficult task for social workers who
are on the front lines mainly because current entitlement
programs are not designed to customize services and meet the
wide range of presenting problems that we typically encounter
when working with older adults.
When we consider how best to inform consumers about the
array of long-term care options available in the community, we
must first acknowledge some inherent challenges, which include
determining who the client is, what the most appropriate
services are, who is eligible for services, who can access
services, and what are the barriers to care.
You may be surprised to learn that a major challenge is
defining the client or consumer. Sometimes an older person
seeks services directly, but oftentimes it is not the older
adult but a family member, trusted friend, clergy member,
neighbor, or other service provider who is seeking services on
the senior's behalf. When this happens, competing or
conflicting needs may exist, such as the concern for safety
versus the desire for independence.
There are many reasons as to why these barriers to service
may exist. For example, a care recipient may not consent to
receiving the services or does not recognize there is a problem
in the first place. This may be due to a mental illness,
dementia, or perhaps just a fear of loss of control. In
situations where the care recipient does agree to receiving
services, the services that are most appropriate to meet their
needs might be cost prohibitive or simply just might not exist.
The way care recipients perceive services is also a
contributing factor in that means-tested services often are
viewed negatively by older adults and their families and
accepting these services may be seen as a personal failure.
Another challenge is a lack of a central, uniform point of
entry into home and community-based services. Older adults or
family members may not know there is a problem, but they just
do not know where to begin their quest for seeking services.
When designing policies and programs to educate, support,
and serve seniors, it is important to consider the goals of the
program. Aging is a process. As such, education about aging
needs to be interspersed throughout the entire lifespan. As an
aging society, we need to be more aware of what lies ahead of
all of us and what resources are available.
Outreach and education should take place at all the various
points of entry. Information also should be available in places
in the community where older Americans and their caregiver
would most likely gain access. Support and information must be
available in different venues, accessible to both seniors and
their caregivers.
Though a wide array of services do exist in the community
to maintain and improve the quality of life for older
Americans, it is important for this committee and for all of us
to continue to seek strategies for improvement. NASW
appreciates the opportunity to come before you this morning and
we look forward to continuing to work with this committee as it
pursues its mission.
The Chairman. Ms. Yagoda, thank you so very much for being
with us.
[The prepared statement of Ms. Yagoda follows:]
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The Chairman. Our final witness will be Major Kevin
Stevenson, who is from up here in Maryland. We have got some
traffic problems out there, but he is here and he is on time
and he is here. His parents happen to live in Napoleonville,
LA. His mother is 73, and his father is 76 years of age. We
have heard their story before, but we just asked Major
Stevenson to share his thoughts with us on the problems
associated with trying to find the right type of care for his
parents. He is a typical example of children who live hundreds
and maybe thousands of miles away from their parents and the
challenges associated with providing long distance help. Major
Stevenson.
STATEMENT OF MAJ. KEVIN STEVENSON, SILVER SPRING, MD
Maj. Stevenson. Chairman Breaux, Senator Wyden, I
appreciate the opportunity to actually come here today and
provide testimony to the committee.
First of all, I would like to say I am also an Army social
worker officer and I have been in the Army now as a social
worker for 11 years. The services that have been spoken of in
regards to what social workers do provide in the statement made
by the NASW, we provide services to the elderly, also, be it
retirees as well as their family members. We provide discharge
planning services as well as medical and counseling services to
them. So I do support what NASW is saying in regards to what we
do and the challenges we have as social workers.
Again, I thank you for the opportunity to be able to
provide testimony on behalf of my mother and father because
they are not alone. Other citizens throughout the country
request in-home long-term care assistance.
My father has been ill since 1995. My mother began
requesting in-home services as of that year for my father. She
began her request in seeking services first with home health
care, the Council on Aging, and the Veterans' Administration.
The Council on Aging were able to provide daily lunch meals for
my father. Home health care provided short-term services for
periods of time.
My father has been bedridden now since May 1998. He has
been hospitalized at least three times in the last years, and
in May 2001 was his last admittance to the hospital. He was
admitted for gall bladder surgery. After his surgery, full
recovery was questionable, but I thank God that he survived.
After each hospitalization stay, he was eligible for home
health care services at a minimum of 2 to 6 weeks. We are told
on each occasion, because care for him is so well provided by
the family, and he has no bedsores or any other sores, no extra
care is needed, and home health care services are discontinued
and stopped.
Caring for my father has not been easy. My mother has hired
an in-home nurse aide to come every morning to actually bathe
my father. Recently, the Family Caregiver's Program granted
services to my mother and father, as of February 2002, and it
ended in June 2002. Then the services were renewed in July 2002
and are now extended to June 2003. This service only provides 9
hours a month.
My mother also gets help from her youngest brother and his
wife, who live on the other side of Highway 1 in Napoleonville,
LA. If it was not for my mother's brother, family friends,
church members, and other relatives, I do not think my mother
would be able to do it by herself.
When I go home on leave, my main reason for being there is
actually to support my mother and father. I would really like
to have the opportunity to visit other friends and family, but
I am there for her and providing respite care so that she may
rest and do other things that are needed.
I would like to be able to at this opportunity to provide
you a picture of what a day in my mother's life is like. At 5
a.m. in the morning, she wakes up, and about 5:30 each morning,
6:30 here, as I travel to work, I give her a call to find out
how she is doing. At 7 a.m. in the morning, she gives my father
his medicine and she changes his feeding tube.
At 7:30 a.m., the nurse's aide comes in and bathes him.
Now, I would like you to be able to understand that my father
weighs 195 pounds, and as a person lays in the bed and they are
bedridden, that is basically dead weight and it is not easy for
the nurse's aide or my mother to actually bathe him, but they
have been doing that.
At 3 p.m. in the afternoon, my mother tests his blood sugar
again and gives him his medicine. At 6 p.m., he gets another
bath, and the bath that is given to him at that time is
provided by the other caregiver. She provides a bath to him on
3 days a week and my mother actually bathes him in the evening
4 days a week. At 10 p.m. in the evening, she tests his blood
sugar again, and then he gets medicine for the last time in the
evening.
This is just one story of many other Americans that are
wanting to be able to provide care in-home to their family
members. I support this committee's efforts and I will continue
to support my family in providing in-home services.
I would just like to also say in conclusion, we have to be
aware, and I am clearly aware, not only as a social work
officer in the United States Army but also as a citizen of the
United States, that when I get older, I would like to be able
to have in-home care as an adult myself, being able to be
provided by my family and friends. Thank you.
The Chairman. Thank you very much, Major. I thank all of
the witnesses for being with us.
Ms. Allen, let me start with you. Your survey has indicated
that, unlike Medicare, for instance, where there is pretty much
a standard national policy for all 50 States, Medicaid is
different, with Medicare, all seniors, 40 million of them,
approximately, have the same standard of care but when we talk
about Medicaid providing help and assistance and cooperation
with the States, we are finding that in the four States you
looked at, which I think is probably true for all States, you
have 50 different sets of rules and standards about what can be
done and what cannot be done in dealing with long-term care,
which Medicaid becomes one of the principal providers for.
I think that in the States that you looked at the variation
was pretty dramatic. Do you agree that it was dramatic or do
the data compare with a little bit of tinkering around the
edges?
Ms. Allen. There were some commonalities, but there also
was extreme variation across the States. But what was also
interesting, sometimes it was not just a matter of that State's
policies. Sometimes we saw even in the same community that two
case managers seeing similar people would prescribe very
different approaches to care. So the variation also is very
dependent on who the individual case manager is and what he or
she thinks is necessary to meet that set of needs.
It gets right back to the point that Major Stevenson was
making, that people have a lot of different needs, and often,
there has been an ethic in our country that families help take
care of their own families. About two-thirds of all people who
need long-term care in the community are supported by their
families.
But as Major Stevenson pointed out, family caregivers need
respite. They need help, and we saw that play out through our
case managers. Again, two case managers in the very same
community could offer very different services depending on what
he or she thought would be necessary to best serve that
family's needs.
The Chairman. Do you think that is because of a lack of
information and knowledge among the case workers as to what is
available? Is that part of it? I take it that it is due more in
part because of what is available within a State. I think the
testimony from Ms. Broussard was that 80 percent of the care
expenditures in my State of Louisiana are covered under
Medicaid. Medicaid is responsible for 80 percent of the nursing
facility care in our State. It seems like there is a huge bias
for institutional care in nursing homes in Louisiana.
So why do you think the variation exists? Is there not
enough flexibility? Talk about Louisiana for a bit as to what
you found with regard to how the money is being spent and what
type of waivers we have down there.
Ms. Allen. All right. In Louisiana, as you pointed out, the
vast majority of the long-term care spending is going to
nursing home care. Over 90 percent of the long-term care
dollars for the elderly, the Medicaid dollars, are being spent
on institutional care.
The Chairman. Over 90 percent?
Ms. Allen. Ninety-three percent, by our calculations.
Louisiana does have two waivers that help meet the needs of
some individuals, as Ms. Broussard pointed out. But the numbers
that are served are rather limited. I think she mentioned that
there are about 1,800 slots with one waiver. There are about
5,000 people on the waiting list, and as she pointed out, one
of the explanations is they encourage people to go on that
waiting list even if they do not qualify financially at this
point in time, because over time, they will.
Another waiver that Louisiana has deals with adult day
health care, which is a little different from some other
States. In some other States there are different models of
adult day care. Some focus on social services. The one in
Louisiana, it is our understanding, has more of an emphasis on
health care services. So they are trying to meet a higher level
need. For that waiver, our understanding is about 500 people
are being served and about 200 people are on the waiting list.
The one other thing that I would mention as far as
Louisiana is concerned is we found that there is a cap on the
amount of money that a case manager can spend per individual
per day. That cap was about $35. That $35 will not go very far
in terms of paying a caregiver to come into the community. That
cap is a factor of the limited number of slots that have been
funded as well as how much money has been allocated for that,
and that is in stark contrast with some other States we have
looked at where there are not similar caps.
The Chairman. Do you have any thoughts about what would
happen if Congress decided to move toward not requiring
the waivers? I mean, this whole process where the State has to
come to Washington and ask to do something that is in their
best interest and they probably know better than we do, to just
have something that would not require the waiver process?
Rather, just make services available in to the States as long
as they are meeting certain standards with what they do?
Ms. Allen. Mr. Chairman, there is a provision in the
Medicaid program now that would lean in that direction, and
would not require a waiver. There are certain things in the
Medicaid program that are mandatory services. Nursing facility
care is one of those. Home health care is one of those. Those
mandatory services, though, are often contingent on the income
eligibility level that a State sets. So if the income
eligibility level is set very low, it is possible that not very
many people would qualify.
But there is another option within the Medicaid program,
what is called optional services, and personal care is one of
those optional services already set up in statute that a State
can elect to fund and cover. If they elect that option, it
means that those services will be available to everyone across
the State with no limits on the number of people served except,
again, that they can set the income eligibility levels which
will somewhat control the thresholds.
The Chairman. Would that cover home health care as we know
the services now?
Ms. Allen. Well, home health care is a mandatory service,
which will be more of a skilled service. Personal care is one
thing that others have talked about this morning. That would be
the hands-on bathing, feeding, some of the other things that
some would say are more custodial care.
Now, the issue, though, is that more than half of the
States have picked up the personal care option, but it is still
not a large part of the funding. I think it comes down, again,
to where do States choose to put their dollars and how are they
trying to constrain costs overall.
The Chairman. Ms. Broussard, you mention in your testimony
that Medicaid is responsible for 80 percent of the nursing
facility care, and then you heard Ms. Allen say that, what, 93
percent of the, what, State money that is being spent----
Ms. Allen. Medicaid long-term care spending is on nursing
homes.
The Chairman. Why do you think it is so high? It is
probably the highest in the nation, I would imagine. What is
happening down there? I mean, why have we not looked at other
options more aggressively? I have always told the nursing homes
they ought to be in the business of assisted living and in
other businesses that provide this care. We started off sort of
like we did with Medicare in 1965 with a bias toward
hospitalization, but things have changed. This is not 1965 and
there are other alternatives.
I have always told the nursing home industry that they are
missing, just from a pure economic standpoint, a good avenue of
increasing business by moving into other types of care;
assisted living care, long-term care in community-based
settings, home health care. Ninety-three percent is just an
incredible amount. Can you comment on why?
Ms. Broussard. If I had that answer, we could probably
provide more services to individuals. I know that we started
the Medicaid waiver in 1993 in Louisiana and we started out
with 500 slots, and we have had a battle in the State
legislature to get it up to--we are now funding 1,200 slots and
there are 525 of the ADHC, the adult day health care waiver. It
has been an uphill battle. We currently provide case
management, our agency, for the waiver program.
The Chairman. What is the argument used against it? I mean,
why is it a battle? When someone disagrees with that, what do
they say?
Ms. Broussard. We have a very strong nursing home lobby in
Louisiana and you are taking money out of the nursing homes to
put it in in-home care. The argument is that it costs more for
care for individuals at home because we do have to--and it has
increased to $55 a day, that we have gotten an increase in
care. But then they throw in, well, but they have to go to the
doctor more often. When you are in a nursing home, the doctor
comes to them. So we have all these issues that we continually
battle.
I think taking care of someone at home is definitely where
we need to be. I have been doing these programs for 20 years
and I can say that when I started 20 years ago, there has not
been much change in what we as agencies do with the Older
Americans Act. We have gotten a few new programs, the Caregiver
Program. We were just totally excited for that because we can
start to get into that arena of providing care for caregivers.
But we still cannot get the medical end to people who want to
remain at home. We can provide the supportive services, we can
provide the nutrition services, but there are some services
that agencies such as ourselves cannot, and I wish I had the
answer as to why.
The Chairman. I think you gave the answer.
Ms. Broussard. Well, maybe----
The Chairman. You gave it very well.
Ms. Broussard. Oops. [Laughter.]
The Chairman. I think that people are missing the boat. I
do not want to be repetitious, but in order to make the point,
I will be. I think that institutional caregivers are missing
the boat economically and not moving out into other areas of
home health care or helping in assisted living facilities. I
mean, that is where the future is. Providing solely one type of
institutional care is where the past is.
Just like Medicare in 1965 which was created and is
outdated today needs to be reformed and brought into the 21st
century, so does the whole concept of how we treat our aging
population. The population today does not want to be in an
institutional 24-hour-a-day, 7-day-a-week care facility if it
is not necessary. Now, for some, it is necessary, and thank
goodness they are there. But for many, they are there only
because of a bias on behalf of States. Many are there because
it is the only thing that is available. That is the real
challenge and what we have been trying to emphasize with this
committee.
Senator Wyden.
Senator Wyden. Thank you, Mr. Chairman. All of you have
been very helpful.
Let me begin, if I might, with you, Ms. Allen. Do the
residents of the State of New York, a State that spends nearly
three times the national average per capita, do they get better
care than those in Oregon, which is now spending two-thirds of
the national average?
Ms. Allen. Senator, I am not sure I can respond to that
question. We did not look at quality as a part of this study. I
will say, however, where we have another study in process, we
are looking at exactly that question, the quality of care that
is provided in home and community-based settings.
We do know in the course of the work that we are doing
there, which builds on work that we did a few years ago for
this committee also on assisted living that included the State
of Oregon as well, that there are concerns about the quality of
care in home and community-based settings. What we find
increasingly is that many of the individuals had the same care
needs that you will find in a nursing facility. I think Major
Stevenson described some of those today, a lot of needs. The
services in these settings are often less regulated than they
are in nursing homes.
So we hope to be reporting on that very shortly. But in the
course of this study, Senator, we did not look comparatively at
the quality of care.
We can say, though, that we saw some differences in terms
of the number of hours of care. For example, in the State of
New York, as well as Oregon, there was a strong bias, I should
say, to try to provide around-the-clock care to an individual
in their home if that was what was needed. In those situations,
though, we found that one of the constraints was finding the
home care workers or the aides who would be willing to provide
that care, particularly in the night shift. So the supply of
workers is sometimes a constraint in being able to meet those
needs.
Senator Wyden. I was trying to keep from pinning you down
on the quality question because I know that your study was not
to be determinative on the quality issue, but at least at this
point, you think that one of the drivers behind these
variations involves the number of hours somebody gets care,
access to trained workers. That would be at least your judgment
up to this point, prior to your report on quality?
Ms. Allen. Yes.
Senator Wyden. All right. Given, Ms. Allen, this huge
variance in care plans, what are your recommendations for the
committee to make sure that consumers and families can find the
best treatment for them?
Ms. Allen. I think the best thing to do is work through, to
begin with, with the local AAAs because I think that they are a
wonderful catalyst for trying to pull together the services
that are available. Also, to the extent that people are aware
of what they may qualify for is helpful.
One example is Medicare home health. To be candid, we were
a little surprised that in some situations in some States, even
in the same community, that a case worker may build the
Medicare home health into the care plan, saying we will help
you get this or make sure you talk to the physician and have
this prescribed. In some cases, this was a way to conserve
Medicaid dollars. Medicaid is supposed to be the payer of last
resort, so they would say, ``we are going to help you get
Medicare home health so that we can provide you with other
things that would not qualify for Medicare.''
But in some cases, the case worker did not do that. So in
that respect, to the extent that an individual is aware of what
they qualify for, and again, I think that going through social
workers and AAA they can get assistance in knowing what they do
qualify for.
Senator Wyden. That sounds pretty troubling. Are case
workers trying to save money? Are case workers unaware of this
extra opportunity to serve older people? What was your sense
behind that?
Ms. Allen. Well, in some situations, I will say that we
were in somewhat of an artificial situation in terms of our
hypothetical individuals. We conducted our work over the
telephone and clearly identified that we were the General
Accounting Office and what we were doing. It is our
understanding, though, that most of the time there would be a
face-to-face interview between the case workers and the
individual, and perhaps with that face-to-face, that there
would be more exploration of what is available and what is not.
Sometimes we would prompt the case worker, once she had
finished talking through the services available, well, is there
anything else available, for example, Medicare, and she would
say, oh, yes. Oh, yes. I simply forgot to mention that, but
obviously, of course, that is available.
Senator Wyden. How often did that happen?
Ms. Allen. For Abby, the 86-year old woman with
debilitating arthritis, case managers referred her to Medicare
and/or Medicaid home health services in 14 of the 16 care plans
developed for each of the three scenarios we presented. In the
other 2 care plans, home health care was not recommended or, in
two scenarios, a care plan recommended a residential care
setting rather than in-home care.
For Brian, the 70-year-old man with Alzheimer's disease,
about half (7 or 8) of the care plans recommended Medicare or
Medicaid home health in the two scenarios where Brian lived
with his wife. The other half did not include home health care
services. In the scenario where Brian lived alone, only 3 case
managers would recommend that Brian remain in his home. Of
these 3 case managers, 1 recommended Medicaid home health
services and the other 2 recommended round-the-clock in-home
care but did not mention home health care.
Senator Wyden. The coverage, as you know, in some places is
so limited that if on top of that we have case workers who are
not being aggressive and proactive in terms of telling patients
and families what their options are, that is sort of a double-
whammy on the country's older people. So I would really be
interested in knowing how often that happens.
One last question for you, Ms. Allen. Did you find that
State mandated cost restrictions were influencing health care
plan recommendations?
Ms. Allen. There was a sensitivity to resource constraints
in two of the States that we went to. In the States of
Louisiana and Kansas, there was an understanding that there
were limits overall on resources and so there were attempts to
maximize the number of hours possible, but recognizing there
were constraints.
That was less true in Oregon and New York. There seemed to
be many more resources available, partly because there was more
being done under the Medicaid State plan itself with no limits
on the number of people served. Now, there were some
considerations in terms of budget neutrality, that the waiver
services could not exceed the cost of what a nursing home would
be, so that was somewhat of a constraint. But we did see some
differences across the States in terms of what they could
answer.
Senator Wyden. Ms. Broussard, I have always felt that the
key to making the aging network work and maximize its potential
is all of you the Area Agencies on Aging. I mean, you all are
the front lines and it is an extraordinary service you provide.
What is the service that older people now want the most when
they come to the AAAs?
Ms. Broussard. Most of them--our meals program is a pretty
infamous program. They always say, well, I need a meal-on-
wheel, so we send them meals-on-wheels. But that is generally
one of the things. They can get a hot meal at lunch.
We also, we are starting to get now more and more, I want
to stay home but I need someone to help me stay there. So now,
we are getting into that. Where we used to be able to provide
homemaker services, where someone would go in and do some light
housekeeping and they would also get a home-delivered meal. So
now we are finding that those are still key services, but we
are going into the caregiver realm, now that family members are
calling and wanting care for their family.
Senator Wyden. What kind of waiting list do you have for
your key services?
Ms. Broussard. It depends on the parish, county.
The Chairman. Parish. [Laughter.]
Ms. Broussard. Parish, yes. We have in our urban parish,
which is Lafayette Parish, approximately 300 to 400 people on
the waiting list for home-delivered meals. In some of our
smaller parishes, you are looking at 150 or better. Over the
past 10 years, we have had a decline in the number of services
that we could provide simply because the population is growing
but the dollars are remaining the same.
So we have had to do some things at our agency so that we
could at least continue to maintain a level where we are
comfortable that we are still serving a good bit of our
population and that is by going into sliding scales for paying
for our meals program, where every 5 days we could pay a
different price for a meal based on the number of meals we
serve. So we have had to do some creative things at our end to
keep the services up, and----
Senator Wyden. Have you seen in the last 6, 8 months with
some of the economic concerns that people are volunteering less
when they come to the programs? My sense is that a lot of the
older people, the combination of the prescription drug
increases and maybe they would have a small CD or something as
a little bit of a cushion and now they are not getting much on
that, that we are really seeing a drop-off in the capability of
people to put that voluntary contribution in.
Literally, since I was Director of the Gray Panthers, that
was something we always watched because it was a measure of how
older people were doing and out-of-pocket medical costs and the
like. Have you all seen that drop-off in terms of what people
are giving on the voluntary side?
Ms. Broussard. We have seen a drop-off, mainly with our
home-bound individuals. The thing with an individual going to a
site to eat, their peers are there so they will tell them, oh,
you passed up the box, so they will go back in and they will
drop a dollar or a couple of coins into the box. So peer
pressure in a group setting, it can kind of--it has leveled
off, but our home-delivered individuals, our home-bound people,
we have seen a slight drop-off.
But, you know, we have always pushed and told them that if
you can give, then we can serve your neighbor. So we have tried
to keep the education level up on what we do with the
contributions and we have also gone to families, too. We will
send them the same letter that we may send to one of our
clients so that the family knows that if you can help your
mother volunteer or what have you, then maybe we can serve
someone else.
But there has been a slight increase, plus in Louisiana
with the gambling industry, we find that a lot of our seniors
do like to go, so---- [Laughter.]
It is an outing for them. They play the nickel machine, but
it does have an effect on what they can give. But we are not an
entitlement program. The Older Americans Act is not an
entitlement program, so it does not matter if--you could be
sitting next to someone who is a millionaire and it does not
matter in our programs, which is good with Older Americans Act
programs. We treat everybody the same. You just have to be 60.
Senator Wyden. My time is up. Major Stevenson, as you know,
the aging network of services and home and community-based
services is kind of a crazy quilt and it is hard to follow. The
fact that you are tracking and navigating with your folks'
system is exactly what we are hoping our generation will do, so
three cheers to you. I know the navigation of the system is
difficult but it is important that you be here to tell us your
story.
Ms. Yagoda, we have worked with your organization many
times over the years and I just thank all of you for being such
good advocates for seniors.
Thank you, Mr. Chairman.
The Chairman. Senator Lincoln.
Senator Lincoln. Mr. Chairman, first, thank you for your
leadership on all of these aging issues. Chairman Breaux has
just been an incredible force in helping us in the Congress
focus on the issues of our aging parents and our aging
populations and constituencies we serve and we really
appreciate the work. It is now, I think, 14 hearings in the
Aging Committee that we have had on this subject.
I am very happy to learn once again from the chairman and
the ranking member, that October 1 through 7 is Long-Term Care
Awareness Week, which gives us all an extra opportunity to
bring about a better awareness of the need to take care of our
aging parents and our aging population. We thank you, Mr.
Chairman, for all that you do.
I apologize for being late and not getting to hear your
testimonies, but I am delighted to have an opportunity to ask
you just a few questions. One of my concerns regarding long-
term care is some of the Medicaid bias toward institutional
care, and I know you have talked a little bit about that. Most
people needing long-term care do prefer to stay in their homes
or their community settings.
With aging parents myself, I know that my parents were
childhood sweethearts. My mother is going to do everything she
possibly can to keep my father in our home, and if it is to the
detriment of herself, she is going to do that. It does not
matter how much my sisters, brother and I try to tell her that
she has to look after herself, she has to take care of herself,
what if she falls, it does not matter. She is going to do
everything she possibly can to keep him out of an institutional
setting as long as she possibly can.
That is why it is also so important, not only for those
that we are caring for but those who are caregivers, who put an
undue hardship on themselves in order to make sure that they
are doing everything they possibly can for their loved ones,
and so we do want to check on doing what we can.
Arkansas has been successful in getting some Medicaid
waivers to allow the State to pay for long-term services in-
home and some of the community-based settings for people who
would otherwise need institutional care, and Arkansas has used
this waiver to set up their Elder Choice program, which has
been successful.
But the waiver option applies only to people who would
otherwise be institutionalized, and you have mentioned that.
What about the people who are not at the point of needing
institutional care but still require long-term services and
would like to remain in their home and their community? We want
to be able to work hard to try and solve that question for our
constituency.
We are also concerned about the options that are available
to the middle class. Obviously, Medicaid through its waivers
and institutional opportunities provides long-term care
opportunity for the neediest, but there are those that are just
over the line in terms of Medicare and we want to make sure
that we keep focused on that.
Ms. Allen, in your GAO study, you only include those four
States, and I know you have talked about that. Based on your
experience and research, and you may have already touched on
this, would you say that poor or rural States like Arkansas
have fewer services available? Is there a rural nature to this
problem? I look at Kentucky, Louisiana, New York, and Oregon.
Out of that study, do you have any sense for what rural States
go through, more so than others?
Ms. Allen. We did not look specifically at rural versus
non-rural States, but what we did do in the course of our study
was to make sure that we selected two different communities in
each state, a large and a small, in order to look, and I would
say that our findings are consistent across those both large
cities and smaller cities. In each State, we chose a city with
fewer than 15,000 people, and we did not discern really notable
differences in terms of the types of care plans that were being
prescribed. So I would not say that the approach that we took,
we necessarily saw that.
Senator Lincoln. Maybe sometimes it is just that services
are more difficult to provide in rural areas because you have
got, obviously, an enormous transportation barrier and
challenge that you have got to face.
I am curious to know, other countries and what long-term
services other countries offer. Is there anything that you can
expand on that they are doing, suggestions or ideas or things
that you see in other countries that could be adapted to better
use here?
Ms. Allen. I wish I could comment on that today, but I am
afraid that I am not in a position to do that.
Senator Lincoln. OK. Ms. Broussard, just in watching in my
own family and understanding that women tend to live longer
than men and usually end up being a caregiver, in most
instances they often end up living alone at the end of their
lives because they have been a caregiver, are there any efforts
underway to see that older women get priority in some of these
services? Do you see that at all?
Ms. Broussard. Gender has no factor in any----
Senator Lincoln. Pardon me?
Ms. Broussard. Gender does not have a factor that I am
aware of.
Senator Lincoln. But clearly, do you see----
Ms. Broussard. Oh, certainly. The majority of the people
that we serve end up being people who live alone, they are
mostly women, they are very rural, and they are mostly poor.
Senator Lincoln. Mostly poor?
Ms. Broussard. Mostly poor, yes, which the older men tend
to like, too, so--three-to-one, so----
Senator Lincoln. They like those odds. [Laughter.]
Of the services that the Cajun AAA provides, which one has
the largest impact on rural residents, do you think?
Ms. Broussard. The largest impact would be our in-home
services, and that is our home-delivered meals and our
homemaking services, as well as some transportation services,
because a lot of an older person's problems stem from not being
able to get from point A to point B.
Senator Lincoln. Right.
Ms. Broussard. So we do have a number of our parishes that
are big transportation providers. They also get 5310 money,
which is through the Department of Transportation, and 5311
funds. So we try to get them out instead of keeping them at
home, because that way they can visit with people, and when the
mind continues to be used, you continue to go a little bit
further. But our home-delivered meals, meals-on-wheels, is
still one of our big services.
Senator Lincoln. Well, you are exactly right. The
stimulation is important. My husband's grandmother is going to
be 105 on Monday, and if the car is started, she is in it. She
is ready to go. She wants to be out there with people and doing
all kinds of things.
You mentioned when Senator Wyden asked about a waiting
list, you mentioned 300 or so. Do you find that you have faith-
based organizations locally that try to pick up the slack of
those kind of situations when you do have waiting lists, or do
your faith-based or your nonprofit groups participate in really
making that happen?
Ms. Broussard. Well, we have in our Lafayette Parish, which
is an urban parish, we do have churches that volunteer to help
us deliver some of our meals, so it helps us in the
administrative end by having volunteer organizations helping us
with the delivery.
As for providing food sources and what have you, we have
had some of--we have St. Joseph's Diner. We have a few diners
that will kick in around holiday times. But we are mainly the
program, you know, our meals-on-wheels program and our
congregate meals program.
Senator Lincoln. Well, I remember I participated in one of
our meal delivery program one time and I realized, like you
said, the home care needs, because every home I went into, they
wanted to visit. They wanted to sit down and talk. But they
would say, well, can you change that light bulb for me before
you leave, and so I got my youth group at church and we spent
one Sunday a month going into some of the shut-ins from the
church and doing just some of those little tasks. So it is
important to know that everybody can work together.
Major Stevenson, I want to give you accolades and
compliments. As a child of aging parents, I am back in Arkansas
a good bit, but I am here an awful lot and it is very difficult
from those distances to really be able to feel comfortable in
what you have been able to do. So I, like the chairman and
Senator Wyden, want to compliment you on the fact that you are
navigating these systems and really looking for the ways that
you can find different agencies and other groups that can be
helpful to your parents in their aging years. It is definitely
challenging, and as a child living in a different part of the
country most of the time, I certainly can identify with you.
Just a couple last questions. Ms. Yagoda, just to touch a
little bit about those that are just above the poverty level,
what services really are available for them, those that are
just above the poverty level that do not qualify for Medicaid?
Ms. Yagoda. It depends on the jurisdiction where they live.
It depends on what their needs are. A lot of the services that
are available are the services that Ms. Broussard talked about
through the AAAs, the home-delivered meals, the chore aides----
Senator Lincoln. They are not dependent on income?
Ms. Yagoda. That is right.
Senator Lincoln. But is it mostly all available through the
AAA?
Ms. Yagoda. The non-health-related services?
Senator Lincoln. Yes.
Ms. Yagoda. The more social services? Yes. Then the more
medically related services would probably be available through
Medicare.
Senator Lincoln. I am just wondering, I hear you all talk
about Medicare home health. There must be more available
through Medicare home health than I am aware of. Not a lot?
Ms. Yagoda. Again, it depends.
Senator Lincoln. Is that right?
Ms. Yagoda. It depends on the need and the diagnosis and
the skill level.
Senator Lincoln. What do you see as the most fundamental
need for that near-poverty group?
Ms. Yagoda. There are so many. I think part of it is what
we are discussing today. Where do they start to get access,
education on what is available.
Senator Lincoln. Right.
Ms. Yagoda. I think that knowing how--to have an advocate
to know how to navigate the system. A lot of people do not know
where to start. They do not know where to begin. They do not
know, should they call Medicare first? Should they call the AAA
first? Should they go through their doctor? That is a biggie
for the----
Senator Lincoln. Where to start?
Ms. Yagoda [continuing]. For the care recipients and the
caregivers, where to start.
Senator Lincoln. Education is clearly important the Robert
Wood Johnson Foundation did several studies in Arkansas and
they found that there were actually more services than people
realized. The biggest key was for people to be educated on what
was actually available to them and how do we get that
information out, how do we educate them to let them know what
is available, how they access it, and where they continue to go
to--as they age even more, where do they go to get more of
those services.
We thank you all very much for being here. I apologize for
being late, but we have a wonderful chairman and he keeps on
top of this issue and makes sure that we are all focused, so
thank you very much.
The Chairman. Thank you, Senator. I think that with regard
to what you are talking about, Blanche, this little card we
developed really helps. We are going to have it on our Aging
Committee website. It really tries to give people first
information a first stop for services, and provides information
about who to call, and list some of the places they can call to
find out what is available. On the back of the card we try to
give guidance as to the steps to take in order to prepare for
the search and what information a consumer should know about
themselves or their loved ones. Hopefully, this card will be
somewhat helpful to the people out there.
Senator Lincoln. Does Social Security put anything like
this in their mailings that go out regularly?
The Chairman. I do not know the answer to that question. I
have not seen anything that specifically deals with something
like this. I think that, mostly, those mailings provide mostly
just information on Social Security, how much the taxes are and
how much the individuals owes. Maybe I am wrong, but it would
not be a bad idea to work with the Social Security
Administration because they contact every single person in the
country, I would like them to mail this out with every Social
Security mailing.
Senator Lincoln. Ms. Broussard.
Ms. Broussard. I would say that we get a lot of referrals
from Social Security, that Social Security told me to call you.
So they obviously, in our area, they will instruct them to come
to us.
Senator Lincoln. It looks like it would be worth it to put
one of these in their Social Security mailing.
The Chairman. Put them in with every check that everybody
gets in the mail. If Social Security would have something like
this, it would be, I think, very helpful. We will have to take
that up.
Senator Lincoln. Even if they just did it once or twice a
year.
The Chairman. Yes. They do not have to do it every time. It
will be the Lincoln proposal. I think it is very good.
[Laughter.]
Major, thank you very much. Any suggestions for what you
think the committee can do? I mean, you have always been very
helpful talking to us.
Maj. Stevenson. I would just like to be able to say this.
In regards to what services are available or who knows where to
begin, a lot of times, it is starting where the client is,
meaning allowing them to tell you what services they would like
to have, and then at that time, making sure they can make those
services available.
We talk about, you know, the fact that it is not gender
specific or anything like that. Most times, it is looking at
the income. I can tell you from my parents and from my mother
in regards to respite care, wanting to have that service
available, a big issue is the medication. When you look at the
income that they are receiving, the things that they are having
to pay for and just being able to make ends meet each month, it
is being crunched up by the medication. Her just wanting--it is
not a whole lot, the support with the medication, the support
with having someone come in and at least bathe him for a little
while.
What is very interesting to me, and I am sure other
elderly, is the fact that they would say to my mother, and I am
sure others, we could pay, just as others have been saying here
today, we can pay for you to go into the nursing home. However,
to continue the in-home care, we cannot do that, and the
question is, well, why? Well, this is just the way it is.
I can tell you, I think it would be more cost effective
with the services that have been provided to my mother in
regards to coming in and at least providing the care of bathing
him, someone being there at least for a couple of hours for her
to go and pay bills and things of that nature, would be a big
start. But yet, it is very ironic that they would say, let us
put him in institutional care and we cannot provide the small
time that is being asked for. So if we could do that, that
would be an issue.
The Chairman. That is a very helpful suggestion and very
well said.
I would like to thank all of you for being here,
particularly Shannon for coming up from Louisiana, and all of
you for making a real contribution here. That will conclude our
hearing today.
[Whereupon, at 11:16 a.m., the committee was adjourned.]
A P P E N D I X
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