[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








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                       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

                              ----------                              
                                                                   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

                              ----------                              


                      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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