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83–478 PDF 2002

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

(

SPECIAL COMMITTEE ON AGING

JOHN B. BREAUX, Louisiana, Chairman

HARRY REID, Nevada

HERB KOHL, Wisconsin

JAMES M. JEFFORDS, Vermont

RUSSELL D. FEINGOLD, Wisconsin

RON WYDEN, Oregon

BLANCHE L. LINCOLN, Arkansas

EVAN BAYH, Indiana

THOMAS R. CARPER, Delaware

DEBBIE STABENOW, Michigan

JEAN CARNAHAN, Missouri

LARRY CRAIG, Idaho, Ranking Member

CONRAD BURNS, Montana

RICHARD SHELBY, Alabama

RICK SANTORUM, Pennsylvania

SUSAN COLLINS, Maine

MIKE ENZI, Wyoming

TIM HUTCHINSON, Arkansas

JOHN ENSIGN, Nevada

CHUCK HAGEL, Nebraska

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)

(1)

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 longterm 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.

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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 longterm 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 MedicVerDate 11-MAY-2000 10:46 Jan 29, 2003 Jkt 000000 PO 00000 Frm 00006 Fmt 6633 Sfmt 6633 C:\DOCS\83478.TXT SAGING1 PsN: SAGING1
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aid, 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 longterm 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 longterm 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

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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

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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.

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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 inhome 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 onesize-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.

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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 inhome 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

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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.

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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 longterm 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 memVerDate 11-MAY-2000 10:46 Jan 29, 2003 Jkt 000000 PO 00000 Frm 00069 Fmt 6633 Sfmt 6633 C:\DOCS\83478.TXT SAGING1 PsN: SAGING1
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bers, 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. SomeVerDate 11-MAY-2000 10:46 Jan 29, 2003 Jkt 000000 PO 00000 Frm 00070 Fmt 6633 Sfmt 6633 C:\DOCS\83478.TXT SAGING1 PsN: SAGING1
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times 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

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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 handson 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

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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-houra-day, 7-day-a-week care facility if it is not necessary. Now, for

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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 availVerDate 11-MAY-2000 10:46 Jan 29, 2003 Jkt 000000 PO 00000 Frm 00074 Fmt 6633 Sfmt 6633 C:\DOCS\83478.TXT SAGING1 PsN: SAGING1
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able. 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

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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——

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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 homebound 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

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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 longterm 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?

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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 homedelivered meals, meals-on-wheels, is still one of our big services.

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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.

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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.

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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.]

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