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[HRC Background File] Monday April 11 [1994]
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[HRC Background File] Monday April 11 [1994]
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Records of the First Lady's Office (Clinton Administration)
Elizabeth "Liz" Bowyer's Files
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Clinton Presidential Records
Digital Records Marker
This is not a presidential record. This is used as an administrative
marker by the William J. Clinton Presidential Library Staff.
This marker identifies the place of a publication.
Publications have not been scanned in their entirety for the purpose
of digitization. To see the full publication please search online or
visit the Clinton Presidential Library's Research Room.
THE ALZHEIMER'S ASSOCIATION
NATIONAL PUBLIC POLICY PROGRAM
1
9
9
4
and
to Conquer
Alzheimer's Disease
and
to Provide
Family Security
ALZ
EIMERS®
R
ASSOCIATION
liz /Tulsa.doc
Alzheimer's Disease and Health Reform
The President's health care plan will help combat Alzheimer's Disease
by funding new research into the causes of and treatments for
Alzheimer's.
The Act increases funding to research into prevention and treatment for
Alzheimer's disease, new drug therapies to treat Alzheimer's, and
respite services to give those caring for a family member an occasional
and much-deserved break.
The President's approach will substantially increase funding to conduct
and support research aimed at preventing diseases that strike older
Americans. $2.9 billion dollars will be dedicated to new prevention
research, including research targeting:
- Alzheimer's disease
- osteoporosis
- cancers, including breast cancer
- heart disease and stroke.
The National Institutes of Health will give certain areas of research
special priority, including elderly health, substance abuse, and chronic
health conditions (for example diabetes, arthritis, and heart disease).
These efforts will go a long way to uncovering the root causes of many
of the diseases that afflict older Americans, and discovering new
treatments and cures.
The Health Security Act invests an additional $2.85 billion in "health
services research" -- evaluating the effectiveness and appropriateness of
different procedures, and the quality of different kinds of care.
The new home and community-based long-term care plan will cover adult
day care -- an important service for those suffering from Alzheimer's, and
respite services, which will allow caregivers time to run errands and get a
break from constant caregiving.
04/08/94 16:48
202 393 2109
aLZHEIMER $ ASSN
1
001/004
ALZ
EIMER'S
ISSOCIATION
Someone to Stand By You
DATE:
FAX COVER SHEET
TO:
Liz Boyer
ORGANIZATION:
FAX# ( ) 456-2239
# OF PAGES:
4
FROM: Judy Riggs PH: (202) 393-7737 FAX: (202) 393-2109
MESSAGE:
Hope you got away!
will talk to you Sunday, if not before.
If you call the hotel, ask for the
Alzheimer Registration desk.
Laurie Meininger is not going to be
able to come after all (if you
:
were planning to mention her)
4915
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW, Suite 710 Washington. DC 20004 Phone: (202) 393-7737 Fax: (202) 393-2109
ALZ
EIMER'S
Someone to Stand By You.
Statement of Stephen McConnell, Chair
Long Term Care Campaign and
Senior Vice President for Public Policy
Alzheimer's Association
On behalf of the 137 cooperating organizations of the Long
Term Care Campaign, I want to welcome you to today's press
conference. I am Steve McConnell of the Alzheimer's Association
and I am joined by representatives of a number of the Campaign's
key organizations. Among them, AARP, the Older Women's League and
the Consortium of Citizens with Disabilities, who you will hear
from in a few minutes.
The Long Term Care Campaign is dedicated to a national health
policy that provides peace of mind and security for all families
and individuals, especially those who now or will in the future
confront the devastating effects of a long term, chronic illness.
The organizations in the Campaign represent more than 60
million Americans, including children and older Americans, people
with physical and mental disabilities, women, veterans, organized
labor and the religious community. Most importantly, we represent
American families, those who are digging deeply into their
pockets
and their hearts
to find the human and financial
resources to meet the challenge of long term care.
The reason for this morning's press conference is to celebrate
a major milestone -- that President Clinton has put long term care
squarely into the debate over health care reform -- and to announce
the next phase of our campaign for comprehensive long term care.
The President's Plan
We applaud the President for his commitment to health reform,
for his inclusion of a significant step toward comprehensive long
term care protection for all Americans, and for his emphasis on
helping families stay together when a chronic illness strikes. The
President's proposal would lighten the burden for caring families,
to help them continue providing necessary support, to prevent or
delay what most people dread
going into a nursing home. And,
it would help persons with disabilities to live independently, in
the community, and to join the workforce.
Let me talk about what I know best, working with families who
make up the Alzheimer's Association. Caring for a loved one who
has Alzheimer's disease is like running a marathon without ever
getting to the finish line. It is an unrelenting, round the clock
job that can go on for many years. Families get little if any
help. And the stress on caregivers puts them at risk of serious
illness themselves. When family caregivers are asked what they
need most, the overwhelming answer is respite -- someone to provide
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW. Suite 710
Washington. DC 20004
Phone
393-7733
Fax
Shelly Fabares (Fab-RAY), who stars in the sitcom "Coach", will present you with the
Humanitarian Award. Her mother (?) has Alzheimer's, and she is very active in the
Association.
III. PARTICIPANTS
HRC
IV.
SEQUENCE OF EVENTS
V.
PRESS
Open press.
VI. REMARKS
Provided by Jason Solomon.
the 19:45
lomin.
/
M&G w/ board members proceeds tosty
Satudule:
Street Roth intro
ste meeting
I Shely pros
[I] Dinnar
4:45
renails
tomoran
0
Q$A for 20 min
(Stuant mod Q&A)
work mpdine
list
.
work ropeline
2
care for a few hours a week "to give us a break. " What the system
offers them now is institutional care -- after they have exhausted
their physical, emotional and family resources:
Respite, day care, personal assistance, home care
all are
necessary components of health reform and, under the President's
proposal, all would be available to 3 million persons with severe
physical disabilities, cognitive or mental impairments. Finally,
families will not be forced to choose between a nursing home and no
help at all.
The Next Phase of the Campaign
The Long Term Care Campaign is launching a major new
initiative to ensure long term care is included in health reform.
Six years ago, few policymakers had heard of long term care.
Today, it is recognized by many to be a key component of
comprehensive health reform. We think we can claim some credit for
this. Since 1987, our grassroots network has enabled more than 100
members of Congress to experience long term care up close and
personal by being a "caregiver for a day.' We've held town
meetings and public events with candidates during two Presidential
campaigns. Our families have testified at hundreds of hearings
across the country. We've held rallies and house parties, forums
and marches.
But, fiscal pressures and the immense complexity of fixing our
medical system threaten to sweep aside long term care in the
upcoming Congressional debates about health reform.
To counteract this, the Campaign is mobilizing the affiliates
of our 137 national organizations, whose combined membership
represents 60 million Americans, to educate the public and energize
them to write to and call their elected leaders in support of long
term care. We are:
sponsoring hundreds of "house parties" across the country to
bring citizens together to talk about long term care and to
write letters to their members of Congress;
distributing thousands of organizing kits to local grassroots
organizations who are mobilizing support on long term care;
producing a new video on long term care and health reform and
shipping copies free of charge to groups and local campaigns
across the nation. (We'll show you a portion of the video at
the end of the press conference and give you a nearly
completed version if you want it);
holding Congressional briefings and participating in hundreds
of town meetings and field hearings held by members of
Congress in their states and home districts, and
3
sponsoring 150 caregiver for a day events with members of
Congress to bring them face to face with the realities of long
term care.
As a final note, I want to say on behalf of my organization,
the Alzheimer's Association, that along with finding a cure for
Alzheimer's there is no more important issue than long term care.
It is hard for the families of 4 million victims of Alzheimer's
disease to understand a health care system that discriminates on
the basis of diagnosis: if you have a heart attack and need open
heart surgery your insurance covers you; if you develop Alzheimer's
disease you are on your own. We can do better, and health reform
will only be complete if we make a down payment toward a
comprehensive long term care system.
ALZ
EIMERS
ASSOCIATION
Someone to Stand By You.
October 12, 1993
Dear
Thank you for hosting a Health Care Reform House Party. Enclosed please find your House Party
Kit. It includes:
The video tape, video guide and instructions
A sign-in sheet
A sample introduction to the tape
Frequently asked questions about long term care
A summary of the President's long term care proposals (20 copies
for distribution)
A model letter to Congress and writing tips (20 copies for
distribution)
A list of the Members of Congress for your state
If participants in your house party want to do more about the long term care issue, you can suggest:
Get five friends to write to Congress.
Write a letter to the editor of the local paper about long term care.
Show the film at another meeting/with another group.
Contact the local Alzheimer's Association and offer to help the public
policy chair with meetings with Members of Congress, forums, etc
that will be happening between now and the end of the year.
Send names of people who want to receive updates and ALERTS!
about health reform to the D.C.
Thank you for helping to make long term care a reality.
Canl Paul McCarty McCanty
Chair, Public Policy Committee
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW, Suite 710
Washington, DC 20004
Phone: (202) 393-7737
Fax: (202) 393-2109
ALZ
EIMER'S
Someone to Stand By You
COOPER/BREAUX HEALTH REFORM PLAN FAILS LONG TERM CARE TEST
The Cooper/Breaux health reform plan (sometimes called "the managed competition bill" or
the "bipartisan bill") may be the worst of all of the options on the table in terms of long term
care. It takes a gigantic step backward, abolishing Medicaid and withdrawing all federal
funding for long term care.
The Cooper/Breaux plan has generated considerable bipartisan support, particularly in the
House of Representatives. But it is not clear that Members who are signing on really
understand its implications for persons with Alzheimer's disease and other chronic illnesses
or disabilities for whom health care means long term care.
Alzheimer advocates must send a clear message to Congress, and particularly to the sponsors
of Cooper/Breaux, that this bill is unacceptable, and that its supporters are undermining the
interests of Alzheimer families. (See attached cosponsor list.)
Supporters of the Cooper/Breaux bill may try to argue that they will free up money states are
now spending for their share of Medicaid acute care costs, which they can use to replace the
federal funds for long term care thye will lose.
This is not an adequate response for Alzheimer families.
1.
Cooper/Breaux will not give states more money for long term care. Some states may
actually lose money. Even if they allocated all of their Medicaid "savings" to long
term care, there would not have enough to expand services beyond the current
Medicaid population or respond to growing need.
2.
States will not be required to maintain even their current level of spending for long
term care. At a time when states are having trouble balancing their budgets and face
urgent competing demands for available dollars, they will be under strong pressures
to use any Medicaid savings for purposes other than long term care.
3.
Cooper/Breaux takes long term care out of health care reform and says to Alzheimer
families that their needs have lower priority. In fact, the goals of health security,
universal coverage (or even universal access to health care), comprehensive benefits,
or cost containment cannot be achieved unless long term care is part of the package.
4.
Cooper/Breaux does not even fully address acute care needs. As many as 24 million
Americans would still be uninsured, the benefit package is undefined, and there is no
effective cost control. This will leave huge gaps in the system that someone will have
to meet. That burden is likely to remain with the states and could eat up any
supposed Medicaid "savings".
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW, Suite -10
Washington. DC 20004
Phone: (202) 393-7737
Fax: (202) 393-2109
On December 7, organizations representing the elderly and younger persons with
disabilities issued a Report Card, testing each of these plans on four critical long term care
questions:
Does it provide significant long term care?
Is the emphasis on home and community based care?
Is it available to persons of all ages, incomes, and levels of disability?
Does it provide consumer choice?
The Clinton plan passed the tests. Only one of the substitutes -- the
Wellstone/McDermot bill -- got a passing grade. Kassebaum received an incomplete. And
all of the rest of the plans failed.
A side-by-side analysis of the long term care provisions of the Clinton plan and the
major proposed alternatives is attached. For more information, contact Judy Riggs in the
Washington office of the Alzheimer's Assocation (202)393-7737.
ALZ
EIMER'S®
Someone to Stand By YOU
THE CLINTON HEALTH CARE PLAN
The President's plan dramatically changes the way we think
about health care in this country. Instead of drawing harsh
lines between medical care and long term care, the President is
saying that Americans who have Alzheimer's disease and other
chronic illnesses or disabilities also have a right to the care
they need.
The Alzheimer's Association commends the President not only
for his commitment to long term care but to the franework of his
specific proposals, which embody the Association's
recommendations for appropriate and cost-effective care.
The President's long term care proposals will give families
the help they need to care for their loved ones at home where
they want to be, without bankrupting the family or destroying the
caregiver's health. His plan also takes useful steps to help
with the overwhelming cost of a nursing home when that is the
only option for care.
The President is offering help now to the 4 million American
families who are dealing with Alzheimer's disease today, through
his long term care proposals. By recommending increased funding
for Alzheimer research, he is also offering hope to the 14
million Americans who will get Alzheimer's before they die if
scientists do not find a way to stop the disease. Alzheimer's
disease is the leading cause of dementia and the fourth-leading
cause of death among adults. At least half of current residents
of nursing homes have Alzheimer's disease or a related dementia.
The Alzheimer's Association is the only national voluntary
health agency dedicated solely to support for persons with
Alzheimer's disease and their families and to research to find
the causes and effective treatments for the disease. The
Association works through 220 chapters and thousands of support
groups in the 50 states.
9/21/93
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC
Washington Office: 1319 F St.. NW. Suite 710 Washington. DC 20009 Phone: (202 393-7733 Fax: (202) 393-2109
ALZ Someone EIMERS TO Stand By You
File
DATE: 11/30
FAX COVER SHEET
TO:
Mahe Sux
ORGANIZATION:
FAX # ( ) 456-6218
# OF PAGES: 2
FROM: Stephen McConnell
PH: (202) 393-7737 FAX: (202) 393-2109
MESSAGE:
Heris just the example of the kind
of play the Clinton plan is getting
on 220 chapters nationalite. newsletter This
article among was front page an the chapter
from Phoens, AZ
Serve
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW. Suite 710 Washington, DC 20004 Phone: (202) 393-7733 a Fax: (202) 393-2109
100
ALZHEIMER S ASSN
601 8 2020
10:47 06/00/II
8m
Prident
Greater Phoenix Chapter
Serving Maricopa, Pinal & Gila Counties
Fall 1993
EIMER'S
R
ASSOCIATION
Someone to Stand By You.
Clinton's Health Plan Applauded
Recognizes right to care of chronically ill
President Clinton's health care plan dramatt-
chmnic illnesses require long term rare, which
cally changes the way we think about health care
allows families to care for loved ones at home or in
in this country by saying. for the first time. that
cost-effective community-based facilities, or nurs-
Americans with chronic illness have a right to the
ing homes. The plan clarifies that all long term
care they need.
care expenses are tax deductible as medical ex-
"Most of this country's four million Alzheimer
penses. In some cases it improves Medicaid cov-
patients cared for at home by their families."
erage for nursing home care.
Mary C. Mc Donald. Board Presi-
"Guaranteeing medical COV-
dent of the Greater Phoenix
the plan s'new $20
erage for all families. regardless
Chapter Alzheimer's Association
of employment status or health
said. Medican and most private
billion.program.for home
condition is a critically important
insurance do not cover
and community care for
element in this plan." McDonald
Alzheimer's disease. So the plan's
said. People afflicted with
new $20 billion program for home
people with serious dis-
Alzheimer's disease lose their
and community care for people
abilities, including AL
jobs, and often family members
with serious disabilities, includ-
heimer's Disease, helps
are forced to drop out of the
ing Alzhemer's disease. helps
workforce to care for them. It's
meet an enormous need. The
meet an enormousneed!
common that Alzheimer's disease
President is to be applauded."
robs families of job-related in-
Nineteen million Americans say they have a
come as well as health insurance."
relative with Alzheimer's disease, according to a
The plan expands funding at the National
recent Gallup poll commissioned by the Associa-
Institutes of Health for "prevention research" in
tion. "We've always said that for every Alzheimer
priority areas, specifically including Alzheimer
patient there are three or four family caregivers
research. "The pace nf Alzhetmer research has ar-
who suffer emotionally and financially in caring
celerated so much in the last 18 months, scien-
for a loved one." McDonald said. "This plan will
Hsts are optimistic about major breakthroughs in
help ease their burden"
the next decade with continued funding."
People with Alzheimer's disease and other
McDonald said.
7002
NSSV S.
2109 393 2020
Lt:OI
11/03/11
10/19/93
18:20
202 393 2109
ALZHEIMER $ ASSN
10/19
# of pages -
/
ALZ
EIMER'S®
To Mile Tux
From
Steve McConnell
Co.
&
ASSOCTATION
Alzheimer's Association
Someone w Stand By You
Dept
Phone P
202-393-7737
Fax #
456-6218
Fax #
202-333-2120
October 19, 1993
TO:
Mike Lux and Charlotte Hayes
nile
FROM:
Steve McConnell
RE:
WALTER ZELMAN'S SPEECH TO ALZHEIMER'S ASSOCIATION
This note is to say "thanks" to both of you for making it possible
LO have Walter Zelman speak to the Alzheimer's Association's annual
meeting this past week-end in Chicago.
In a word, Walter was spectacular! He was clear, inspiring and
very informative. Dozens of our chapter leaders from across the
country came up to me after Walter's speech to say how much they
appreciated it and how enthusiastic they are now about the
President's plan.
Most importantly, on Monday, our Association's national board
passed unanamously a resolution in support of the President's plan
(in its current outline as we know it), with special enthusiasm for
the long term care components of the plan.
To show our support, the Alzheimer's Association chapters will be
m
holding 290 health reform house parties on October 21. And, that's
just the beginning!
Again, thanks for coming through.
ALZHEIMER'S DISEASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW, Suite 710
Washington, DC 20004
Phone: (202) 393-7733
Fax: (202) 393-2109
HEALTH REFORM UPDATE
President Puts Alzheimer's High on National
-File
Health Reform Agenda
HEALTH SECURITY
I
n a televised speech to Congress
and the nation on September 22,
President Clinton brought Alzheimer's
Health
disease into the middle of the health care
insurance
debate. Alzheimer families who have
card for
UNITED
Clinton's
mobilized nationwide to draw attention
STATES
health
OF
to their needs found affirmation in the
AMERICA
care plan.
President's call for comprehensive long
term care for the elderly and disabled,
to provide community-based services for
and expedited funding for Alzheimer
low income persons with less severe
research.
disabilities. And Medicaid would continue
The President reiterated his commit-
to cover nursing home care, with a new
ment to long term care in response to a
requirement allowing more people to
question from Alzheimer caregiver and
qualify because of higher income and
Association representative Jean Parker in
asset allowances for those who require
a nationally broadcast town meeting in
such care.
Tampa. And in the opening round of
Congressional hearings on health reform,
More funds promised for
Hillary Rodham Clinton repeatedly noted
research
that long term care is an essential part of
President Clinton has made an
the full plan, "because it is right, it
equally strong case for Alzheimer research.
preserves families, it preserves dignity,
pledging to "speed research on effective
and it saves money."
prevention and treatment for Alzheimer's as
"The President has changed the
well as cancer, AIDS and heart disease."
nature of the health care debate,"
In addition, health care benefits
Association chairman Stuart Roth noted.
essential to persons with Alzheimer's
"He has clearly heard the message of
disease, including diagnostic services,
families dealing with chronic diseases
mental health services, and prescription
like Alzheimer's, and he is saying that
drugs, would be part of the comprehensive
we too have a right to peace of mind
benefit package for which all Americans
and security."
will be insured.
On September 22, 1993, President Clinton outlined his
"The President has pushed the door
Benefits of the health plan
national health care proposal to the members of
Congress.
wide open and invited us into the debate."
The President proposes that severely
noted Paul McCarty, Public Policy chair for
disabled persons, including specifically
care. Persons of all ages and income
the Association. "And the debate has just
those with cognitive impairment such as
would receive benefits; those with
begun."
Alzheimer's disease, receive a flexible
incomes over 150% of poverty would pay
At hundreds of health care action
array of services at home and in the
a portion of the cost according to a
parties across the country on October 21.
community. The program would pay not
sliding fee scale.
the Alzheimer's Association launched a
only for traditional home health services,
The new program would be phased
nationwide campaign to mobilize a strong
but also for companions, respite, home
in beginning in 1996. When fully imple-
and sustained outpouring of public senti-
modifications, day care, services in
mented in the year 2000, more than $20
ment to convince Congress that long term
board-and-care homes, or any other
billion in home and community services
care and Alzheimer research must be
service defined in an individual plan of
would be available to persons who need
part of any health care plan it enacts.
them. In addition, states would continue
ALZ
EIMERS
Someone to Stand By You.
STATEMENT OF STEPHEN McCONNELL
SENIOR VICE PRESIDENT FOR PUBLIC POLICY, ALZHEIMER'S ASSOCIATION
CHAIR, LONG TERM CARE CAMPAIGN
December 7, 1993
The organizations holding this press conference represent millions of Americans who are left out
of our current health care system. The system discriminates against them because the health care they
need is not provided in doctors' offices or hospitals. These are people with chronic diseases and
disabilities -- people who need long term care.
We called this press conference to issue a Report Card on the health care plans now before
Congress. We are grading each plan on one subject, long term care -- the key to health security for the
people we represent.
The President gets a passing grade; he has put long term care squarely on the table. None of
the plans offered in its place, except for McDermott-Wellstone, passes; one -- Cooper/Breaux -- takes
a huge step backward.
To get a passing grade, a plan had to pass four tests:
Does it include a significant new long term care benefit?
Does that benefit emphasize home and community based care?
Will it be available for all ages, incomes, and types of disabilities?
Will it provide real consumer choice?
We want to emphasize that this is a Mid Term Report Card. These are all good students, and
there is still time for them to bring their grades up before the final report card.
The final grade, of course, will belong to the entire Congress. And no one in this room wants
that to be a failing grade. Every organization here is committed to working with every
sponsor, every Committee, every Member, to make sure that the health care bill Congress enacts meets
the long term care test.
Health care reform will not pass any test:
It will not provide basic security
It will not provide universal coverage
It will not be comprehensive
And it will not control costs
Unless it includes real long term care.
ALZHEIMER'S DISE ASE AND RELATED DISORDERS ASSOC. INC.
Washington Office: 1319 F St., NW. Suite -10
Washington. DC 20004
Phone: (202) 393-7737
Fax. (202) 392 2109
Fill
ALZ
EIMERS
ASSOCIATION
Someone to Stand By You.
Testimony of
Stephen McConnell, Alzheimer's Association
Representing the Long Term Care Campaign
Before the
U.S. House of Representatives
Committee on Ways and Means Committee, Subcommittee on Health
The Honorable Fortney "Pete" Stark, Chairman
November 2, 1993
Mr. Chairman. I am here today as Chair of the Long Term Care Campaign and as senior
vice-president for public policy of the Alzheimer's Association.
The Long Term Care Campaign is a coalition of 137 national consumer organizations
organized in 1987 to get long term care into our health care system. The Campaign is made up of
organizations representing older Americans, persons with disabilities, women, churches, labor, nurses
and veterans. (I would like to submit a list of the member organizations for the hearing record.)
The makeup of the Campaign underscores a central truth about long term care that too
frequently gets missed in the discussion. This is not an aging issue. It is a family issue. It affects
people of every age. One third of all persons who need long term care are children and younger
adults. But regardless of the age of the person with the illness or disability, every person in the family
-- parent, spouse, sibling, child, grandchild is affected.
We have a health care system now that discriminates by disease and disability. If you have
a heart attack and need surgery, or if you have cancer and need chemotherapy the system recognizes
your health care needs and insures them. But if your child has cerebral palsy, if you suffer a spinal
cord injury, if you get Alzheimer's disease, the system ignores you because the type of health care
you need -- long term care -- is not provided in hospitals or doctors' offices.
8 97% of American families are uninsured against the devastating cost of long term care.
We organized the Long Term Care Campaign to change that system. You have been with
us from the start, Mr. Chairman, insisting that long term care be part of health care reform, as has
Mr. McDermott and the supporters of his legislation. Now President Clinton joins us with a far-
reaching proposal for home and community care. None of the other proposals on the table offers
families any real long term care protection.
The President's proposal contains a number of features which the Long Term Care Campaign
considers absolutely essential:
First, it begins in exactly the right place, with home and community care. The President's
plan will turn the system upside down. Instead of forcing people into nursing homes -- where
no one wants to be -- his plan provides services in settings that are more humane, more
appropriate, and for the vast majority of people less expensive.
Second, it is a program for persons with disabilities of all ages and income, with protections
for low-income families and cost-sharing for those who can afford to contribute.
Third, it includes specific eligibility language to assure coverage for persons with cognitive and
mental impairments as well as physical disabilities.
Fourth, it provides consumer choice of services and providers.
Fifth, it is flexible, so that services can meet individual needs, through personal assistance, day
care, respite, home modifications, habilitation and rehabilitation, and services in community
residential settings.
Speaking on behalf of the Alzheimer's Association, we enthusiastically endorse the President's
long term care recommendations. To understand why, you need to understand what a disease like
Alzheimer's does to a family. Taking care of a person with dementia is an unrelenting, round-the-
clock job that involves the most intimate aspects of daily life. Mr. Jones dresses and feeds his wife
every day because she has forgotten how. Mrs. Adams bathes and diapers her father after her own
children leave for school. Fifteen-year old Sam comes home after school to watch grandpa so that
he does not wander away from the house and get lost.
Families exhaust themselves -- physically, emotionally, financially -- to care for the people they
love. And they get little help doing it, unless they put their loved one in a nursing home. Even then,
help comes only after they have spent everything -- current income, retirement savings, college tuition
funds -- to pay for care.
The system makes no sense. The President would change it.
or course the Alzheimer's Association is concerned about the cost and quality of care in
nursing homes -- at least half of the residents have dementia. But we believe the President is doing
exactly the right thing by focusing attention now on home and community care. That is where most
people with dementia live. It is where their families want them to be -- in an environment that is as
familiar and homelike as possible. By providing some help, through a program like the President is
proposing, we make it possible for families to stay together. And we allow families to continue their
central roie as caregivers, instead of turning everything over to a paid provider.
We do not ignore the central concern Congress must have about cost. The President is
proposing significant new expenditures for long term care. But there is mounting evidence that such
expenditures will yield important savings, in nursing home costs and in avoidable hospital expenses.
Let mc cite just one recent study -- from northern California. Researchers carefully measured
the total cost of care for persons with Alzheimer's. One group lived in nursing homes. The other -
- with comparable levels of impairment lived at home. When unpaid care is considered, the total cost
of care is about the same for persons in both groups -- about $47,000. But there is a big difference.
For those who live at home, three-fourths of the care is provided by family and friends. The total
cost of paid care, including medical expenses, is about $12,500. For those who live in a nursing home,
the cost of paid care is three and a half times higher -- $42,000.
We hear a lot of talk about public-private partnerships. The President is proposing the
ultimate partnership -- a partnership with families.
One final comment. However successful wc are in helping families at home, there will still
be people for whom nursing home care is necessary and appropriate. The President is proposing a
change in current law that will make an enormous difference for families who face that decision. He
would require that every state establish a medically needy program for nursing home care -- to allow
"spend down". This puts an end to the so-called "Medicaid gap" which leaves thousands of families
in a dozen states desperate -- with too much monthly income to qualify for Medicaid but not enough
to pay the private rate out of their own pockets.
Mr. Chairman, it is casy for families who are dealing with Alzheimer's disease to support
wholeheartedly the President's long term care recommendations. If the President's plan is enacted,
they -- like hundreds of other families dealing with chronic illnesses and disabilities -- will have help
they cannot get today. Finally, they will be part of the system -- and then wc can go about perfecting
that system.
All of the organizations in the Long Term Care Campaign, and all of the families and 221
Chapters that make up the Alzheimer's Association are prepared to work with you to make that
happen.