United States. Congress. Senate. Committee on Labo.

Long-term care in health care reform. hearings before the Subcommittee on Aging of the Committee on Labor and Human Resources, United States Senate, One Hundred Third Congress, second session, on examining long-term health care reform issues, April 11 and 14, 1994 online

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S. Hrg. 103-656

LONG-TERM CARE IN HEALTH CARE REFORM-
PARTS I AND II



Y4.L 1 1/4; S. HRG, 103-656

Long-Tern Care in Health Care Refor. . .

HEARINGS

BEFORE THE

SUBCOMMITTEE ON AGING

OF THE

COMMITTEE ON

LABOR AND HUMAN RESOURCES

UNITED STATES SENATE

ONE HUNDRED THIRD CONGRESS
SECOND SESSION

ON
EXAMINING LONG-TERM HEALTH CARE REFORM ISSUES



APRIL 11 AND 14, 1994



Printed for the use of the Committee on Labor and Human Resources




srp j 4



U.S. GOVERNMENT PRINTING OFFICE
80-901 CC WASraNGTON : 1994

For sale by the U.S. Government Printing Office
Superintendent of Documents. Congressional Sales Office, Washington, DC 20402
ISBN 0-16-04A733-X



n



n

^ S. Hrg. 103-656

LONG-TIRM CARE IN HEALTH CARE REFORM-
PARTS I AND II

Y4.L 11/4:S. HRG. 103-656

Long-Tern Care In Health Care Refor. . .

HEARINGS

BEFORE THE

SUBCOMMITTEE ON AGING

OF THE

COMMITTEE ON

LABOR AND HUMAN RESOURCES

UNITED STATES SENATE

ONE HUNDRED THIRD CONGRESS

SECOND SESSION

ON
EXAMINING LONG-TERM HEALTH CARE REFORM ISSUES



APRIL 11 AND 14, 1994



Printed for the use of the Committee on Labor and Human Resources




SFP J



4



U.S. GOVERNMENT PRINTING OFFICE
80-901 CC WASraNGTON : 1994



For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
ISBN 0-16-044733-X



COMMITTEE ON LABOR AND HUMAN RESOURCES

EDWARD M. KENNEDY, Massachusetts, Chairman
CLAIBORNE PELL, Rhode Island NANCY LANDON KASSEBAUM, Kansas

HOWARD M. METZENBAUM, Ohio JAMES M. JEFFORDS, Vermont

CHRISTOPHER J. DODD, Connecticut DAN COATS, Indiana

PAUL SIMON, Illinois JUDD GREGG, New Hampshire

TOM HARKIN, Iowa STROM THURMOND, South Carolina

BARBARA A. MIKULSM, Mainland ORRIN G. HATCH, Utah

JEFF BINGAMAN, New Mexico DAVE DURENBERGER, Minnesota

PAUL D. WELLSTONE, Minnesota
HARRIS WOFFORD, Pennsylvania

Nick LrmfFIEU), Staff Director and Chief Counsel
Susan K. HattaN, Minority Staff Director



Subcommittee on Aging

BARBARA A. MIKULSKI, Maryland, Chairman
CLAIBORNE PELL, Rhode Island JUDD GREGG, New Hampshire

HOWARD M. METZENBAUM, Ohio DAN COATS, Indiana

CHRISTOPHER J. DODD, Connecticut DAVE DURENBERGER, Minnesota

HARRIS WOFFORD, Pennsylvania NANCY LANDON KASSEBAUM, Kansas

EDWARD M. KENNEDY, Massadiusetts (Ex Officio)

(Ex Officio)

ROBYN LIPNER, Staff Director
John COHMSEN, Minority Staff Director



CONTENTS



STATEMEhPTS
Monday, April 11, 1994



Page



Torres-Gil, Fernando M., Assistant Secretary for Aging, Administration on
Aging, U.S. Department of Health and Human Services, and Robyn I.
Stone, Deputy Assistant Secretary for Disability, Aging, and Long-Term
Care Policy, Office of the Assistant Secretary for Planning and Evaluation,
U.S. Department of Health and Human Services, accompanied by Mary
Harahan, Chief Deputy, and Bill Benson, Deputy Assistant Secretaiy for

Operations, Administration on Aging 3

Prepared statement of Mr. Torres-Gil 7

McCarty, Paul, Methuen, MA, chair, public policy committee, Alzheimer's
Association; Joan Kuriansky, on behalf of the Long-Term Care Campaign;
and Anthony J. Young, on behalf of American Rehabilitation Association
Consortium for Citizens With Disabilities, accompanied by David Fields,

personal assistant 34

Prepared statements of:

Mr. McCarty 36

Ms. Kuriansky 41

Mr. Yoting 45

Thursday, April 14, 1994

Mikulski, Hon. Barbara A., a VS. Senator from the State of Maryland,

prepared statement 68

Delfico, Joseph, Director, Income Security Issues, VS. General Accounting
Office; Christine Gianopoulos, Director, Maine Bureau of Elder and Adult
Services, Augusta, ME; and Donna McDowell, Director, Wisconsin Bureau

on Aging, Division of Community Services, Madison, WI 70

Prepared Statements of:

Mr. Delfico 72

Ms. Gianopoulos 80

Ms. McDowell 85

Chan, Kwad-Cheung, Issue Area Director, Program Evaluation and Methodol-
ogy, VS. Generd Accounting Office, accompanied by SushiU K. Sharma,
Study Director, Rosalie A. Kane, Director, National Long-Term Care Re-
source Center, and professor. School of Public Health, University of Min-
nesota; Ruthamne NerUch, chief executive officer, Visiting Nurses Associa-
tion, Venango County, Oil City, PA, on behalf of Visiting Nurse Associa-
tions of America; and Emily Amerman, director of care management, Phila-
delphia Corporation for Aging, Philadelphia, PA 94

Prepared statements of:

Mr. Chan 96

Ms. Kane 106

Ms. NerUch 12 1

Ms. Amerman 130

Wardwell, Robert, Acting Deputy Director of Medicaid Policy, Medicaid Bu-
reau, Health Care Financing Administration, U.S. Department of Health
and Human Services, Washington, DC; Lisa BrakebiU, coordinator for Res-
pite Care, MD-Care, Btiltimore, MD; and Jennie Chin Hansen, executive
director. On Lok Senior Health Ser/ices, San Francisco, CA 142



(in)



IV

Page

Mikulski, Hon. Barbara A., a VS. Senator from the State of Maryland,
prepared statement — Continued
Ihcpared statements of:

Mr. WardweU 144

Ms. BrakebUl 149

Ms. Hansen 155

National Association for the Support of Long Term Care, prepared statement . 167
Meiners, Marie R., associate director, Center on Aging, llmversity of Mary-
land, director, Robert Wood Johnson Foundation Partnership for Long-
Term Care, and Robert Wood Johnson Foundation State Initiatives in Long-
Term Care, prepared statement .171

LifePlans, Inc., M!arc A. Cohen, principal, prepared statement 175

McDowell, Donna, Lorraine Bamiskis, and Sandy Wright, Bureau on Aging,
Department of Health and Social Services, Madison, Wl, prepared state-
ment 186

National Association of State Long-Term Care Ombudsman Program, Esther

Houser Allgood, president, prepared statement 201

Nutrition Screening Initiative, Nancy S. Wellman, prepared statement 205

ADDITIONAL MATERIAL

Articles, publications, letters, etc.:

Inconsistent Denial Rates for Medical Necessity Across Six Carriers, US.

General Accounting Office, study of 226

Communications to:

Mikulski, Hon. Barbara A., a VS. Senator from the State of Maryland,
from Robert D. Evans, director. Governmental Aflairs Office, American
Bar Association, dated April 12, 1994 (with attachments) 223



LONG-TERM CARE IN HEALTH CARE
REFORM— PART I



MONDAY, APRIL 11, 1994

U.S. Senate,
Subcommittee on Aging, of the Committee on Labor and

Human Resources,

Washington, DC.

The subcommittee met, pursuant to notice, at 10:04 a.m., in room
SD-430, Dirksen Senate Office Building, Senator Barbara A. Mi-
kulski (chairman of the subcommittee) presiding.

Present: Senator Mikulski.

Opening Statement of Senator Mikulski

Senator Mikulski. Good morning, everybody. The subcommittee
will come to order, and we will ask Mr. Fernando Torres-Gil and
Ms. Stone to come to the table.

I wish to say that Senator Gregg wished very much to participate
in this hearing, but because of an unexpected situation affecting
himself and his family, he will not be able to be here today, but
we will look forward to his participation later on in the week. And
I will say to the Gregg staff as we move forward that if Senator
Gregg would have a statement or comments, we will put those in
the record.

Today is the first of a two-part hearing on the President's pro-
posal for a new home and community-based long-term care pro-
gram. We are going to begin this morning with testimony from the
administration on the specifics of the home and community-based
program and whom it will serve.

Following the administration, we will hear from representatives
of the elderly and disabled community about the compelling need
for long-term care services available in other noninstitutionalized
settings in addition to their own homes.

As the chair of the Aging Subcommittee, I believe that health
care reform must address the pressing need to clearly establish and
support a continuum for long-term care. When the President began
to look at health care reform, I know that he was told to stay away
from several issues. One was long-term care. The naysayers said it
was too expensive, too unwieldy, too complicated, that it would be
a fiscal black hole and that if he entered into it, he would never
emerge except perhaps in another universe and in another time.

But the President imderstood from the beginning that health
care reform would not be complete without including home and
community-based long-term care services.

(1)



I believe it makes absolutely no sense to provide financial protec-
tion against acute illness but leave people vulnerable if they suffer
from a chronic or disabling condition. We hope to provide through
health insurance reform access to universal coverage. Presuming
we keep people well, or get them well, then have them return home
with no services, is only two parts of what needs to be a three-part
strategy.

I believe that President Clinton's legislation lets Americans do
just that. It is an important first step in meeting the country's
lone-term care needs. But I do have concerns about the proposal as
well. I believe much of the progfrmm has yet to be fleshed out, and
I hope our witnesses can do that.

It is not clear what services a client will receive or how the qual-
ity of services will be assured. Who will screen and assess clients
before they receive services? Will assessment be uniform across
States? Who decides who gets what service? What proportion of the
eligible population will get served?

I am concerned that an elderlv person in Maryland who meets
eligibility requirements will not have access to the same array of
necessary services in Massachusetts or in Oregon or in Florida or
in California or in Utah or in New Hampshire.

I am also concerned about how we will evaluate the effectiveness
of the program, how States will measure and track the quality of
services provided, whether the States will have the capacity to im-
plement the program and how will they control costs. I am also
concerned about adequate evaluation for appropriate care. I am
very much concerned that case management is optional rather than
mandatory, because who oversees whether the necessary services
are being delivered and so on.

I am also concerned about the lack of uniformity of the definition
of "quality," and whether there will be licensing standards for pro-
viders particularly in the area of personal care.

We cannot afford the old solutions anymore, and we need a more
creative agenda. We need to allow people who do not need to be in-
stitutionalized and do not want to be institutionalized to stay out
of institutions. Hopefully, it will cost less, but even if it does not,
it should mean a better life and provide the people with what they
want and with what works.

I look forward to an informative and provocative hearing, and I
would like to welcome our witnesses.

Senator Mikulski. Today we welcome a most able team from the
administration. Dr. Fernando Torres-Gil, a fellow social worker, a
professor of social welfare at the University of California, a nation-
ally-recognized expert on aging policy, long-term care, disability,
and rehabilitation. He comes from a distinguished academic career
as well as real hands-on care in the community.

We also welcome Dr. Robyn Stone, the deputy assistant secretary
for disability, aging, and long-term care policy in the Office of the
Assistant Secretary for Planning and Evaluation. I wonder, do you
put all that on a card? [Laughter.]

Prior to joining DHHS, Dr. Stone was a senior research director
at Project Hope's Center for Health Affairs. She is a longstanding
expert on the topics that we are going to discuss today.



We welcome you in a spirit of collegiality, we look forward to
hearing your testimony and to work with you to move a legislative
package that is desirable, fiscally affordable, and can be
operationalized in a way that we will all be proud of.

STATEMENTS OF FERNANDO M. TORRES-GIL, ASSISTANT SEC-
RETARY FOR AGING, ADMINISTRATION ON AGING, U.S. DE-
PARTMENT OF HEALTH AND HUMAN SERVICES, AND ROBYN
I. STONE, DEPUTY ASSISTANT SECRETARY FOR DISABILITY,
AGING, AND LONG-TERM CARE POLICY, OFFICE OF THE AS-
SISTANT SECRETARY FOR PLANNING AND EVALUATION, U.S.
DEPARTMENT OF HEALTH AND HUMAN SERVICES, ACCOM-
PANIED BY MARY HARAHAN, CHIEF DEPUTY, AND BILL BEN-
SON, DEPUTY ASSISTANT SECRETARY FOR OPERATIONS, AD-
MINISTRATION ON AGING

Mr. Torres-Gil. Thank you, Senator Mikulski. It is a pleasure
and an honor to be with you. We certainly commend you and your
committee for your leadership in this very critical area of long-term
care.

Certainly long-term care is at a critical juncture in congressional
deliberations, and your efforts and leadership are important in
highlighting this issue, and hopefully, we will see good develop-
ment and expansion in this very important area.

I would like to introduce my colleagues. You have already intro-
duced Robyn. To my fight is Bill Benson, our deputy assistant sec-
retary for operations in the Administration on Aging, and to
Robyn's left is Mary Harahan, her chief deputy and long-term care
expert.

I might just add that these individuals are here not because I do
not know all the answers — and I do not know all the answers, but
I can certainly attempt to do so — ^but to demonstrate that the De-
partment has tremendous talent as well as colle^ality, and to
make sure, of course, that we can address the many issues that you
have raised with us as well.

I would like to say that Robyn and I will divide our presen-
tations. I will talk about the Administration on Aging and our role
in long-term care, and Robyn will specifically address the long-term
care portion of the President's Health Security Act, and then all of
us, of course, will attempt to respond to the specific questions that
you raised earlier.

On April 14th, you will have another one of our colleagues here,
Mr. Bob Wardwefl, who is in the audience, with our Department's
Medicaid Program, and he will also be testifying for the adminis-
tration.

Thank you very much. I might just add. Senator Mikulski, that
I first came before you a year ago — I do not know if you recall —
iust before I was confirmed. At that time, I was unable to speak
because I was not yet official; now, I can, and I hope I have some-
thing useful to say to you.

We will talk about the President's health care plan and the tre-
mendous opportunity it provides to move forward on long-term
care, but let me first address the issues of the aging netwonc and
the Administration on Aging and the role of our providers in any
development of a long-term care system.



As you well know, Senator Mikulski, our aging network — ^which
includes 57 State units on aging, 670 Area Agencies on Aging, over
27,000 services providers, as well as over 200 tribal organizations —
is perhaps, next to the Social Security district offices, the commu-
nity-based infrastructure for older persons and their families. And
it has had, I tiiink, a long and illustrious history of being involved
in issues and activities that are going to be fundamental to the de-
velopment of a long-term care system.

I have travelled across the country and gotten to know it better.
As you may also recall, I have been in Maryland quite a bit. I have
spoken before the Maryland Governors' Conference on Aging as
well as the Maryland Association of Area Agencies on Aging, and
I continue to be impressed with the tremendous innovation and po-
sitioning of this important network in the development of long-term
care.

First a few words about the problem and what is broken with
this system or nonsystem of long-term care. I will not go into spe-
cific details; you will have many fine witnesses to get into those is-
sues. But I tnink it is important to note that long-term care is not
just about serving older Americans who are chronically ill or dis-
abled. It is also about persons with disabilities of all ages. It is
about caregivers, primarily women, who shoulder the burden will-
ingly, but at an emotional and financial cost, to take care of these
individuals because we do not have a coordinated, comprehensive
system.

It is about people with AIDS and Alzheimer's disease who unfor-
timately do not nave the availability of long-term care. And it is
really about all of us who are at risk, however healthy, of needing
long-term care should an accident or an illness occur.

We also know that because of this dilemma, these individuals
who may need it have difficult choices — difficult choices of either
paying for expensive care on their own or impoverishing them-
selves to qualify for Medicaid, or reljdng on loved ones who often-
times must give up their jobs or face a burden of caregiving as well
as raising a family and taking care of a job.

All of these are difficult choices precisely because we do not yet
have a coordinated, comprehensive system. That system which does
exist is fragmented and complicated at best — although I would like
to point out that "The Older Americans Act and the many services
we have provided over the years have been an important bridge for
this fragmented system. Certainly, we look forward, should the
Congress decide to adopt the President's proposal, to really moving
forward once and for all and building on the work of this proposed
long-term care system.

^d it will come none too soon. The demographics speak to the
urgency. The doubling of the retiree population by the next cen-
tury, tripling of the over-85 population, and growing numbers of
persons with disabilities compel us to move forcefully in this direc-
tion, which is why your leadership and this hearing are so impor-
tant to raise the public consciousness.

Again, as I mentioned, I will leave to Dr. Robjoi Stone an elabo-
ration of the specific details of the President's health care plan and
long-term care, but I would like to make a few points relative to
that and AoA and its aging network.



Many of the features in the development of the President's home
and community-based long-term care are built on the innovations
and the lessons and the best practices of the aging network and the
programs we have funded through the Administration on Aging
over the last 30 years. On Lok, for example, a highly successful
community-based social model, is now being replicated across the
country, and those lessons have been applied in the development
of the President's proposal.

The issue of consumer participation and involvement, which is a
crucial part of the President's plan, is drawn from our experiences
with The Older Americans Act and our services, where for years it
had been a tradition to require Council on Aging and consumer
participation. The plan, for example, requires that States will
specify the role of The Older Americans Act long-term care om-
budsman program, because we have that experience in this critical

area.

So there are many parts of the President's long-term care pro-
posal which build on the innovation and leadership of The Older
Americans Act and together with that proposal, should it be adopt-
ed, and the work we will do, we will certainly complement each
other's strengths.

I would like to address, however, some critical issues, one of
which is the need to have a good database of information by which
we know whom we are serving and how we are going to serve
them. And certainly I think this is a basic feature and a foundation
of any move toward assessment and evaluation.

I am pleased to report. Senator Mikulski, that we have just com-
pleted the first ever national survey of home and community-based
services for the functionally-impaired elderly. This is a national
survey which was conducted in the summer of 1993 by AoA's re-
gional offices across the country which for the first time looked at
Federal and State expenditures for the elderly in home and com-
munity-based services and allows us for the first time to assess the
State of preparedness by that aging network in responding to any
decisions development you and the Congress may move relative to
long-term care.

We will be providing you with the specific details of this survey.
We are in the process of developing specific State profiles and cer-
tainly will be happy to provide one for you for the State of Mary-
land, and we will be bringing in other data as we further assess
it in greater detail.

Allow me, if I may, to give you a few highlights of that survey
because I think it lays out the tremendous diversity but also
strengths of the aging network and community-based services to
move on long-term care.

For example, 41 percent of State imits on aging administer Med-
icaid waiver programs. Ninety-eight percent administer at least
one State general revenue program for home and community-based
services. TVenty-two percent administer social services block grant
moneys. Six percent administer Medicaid State plans, and even
nine State units on aging reported that they have State respon-
sibility for waiver programs for younger disabled persons.

In addition our findings indicate that 47 States have some type
of policymaking mechanism in place to focus on home and commu-



nity-based care. Twenty-two States have a formal long-term care
coimcil task force, and 16 States have adopted a single-entry con-
cept, which means that they have identified an agency witn pri-
mary responsibility for helping community members access and
link to community services.

What this tells us, Senator Mikulski, is that this network is in
place. Certainly, we need to build up different features so that
there is uniform capacity, but the infrastructure is there.

If I may, for Maryland, I can give you a few previews of our find-
ings. Maryland, for example, is one of just two States that reported
the highest number of State-funded programs — eight in all. They
included programs such as senior care, social services to adults,
senior information and assistance. Maryland is one of 18 States
that targets home and commimity-basea services to specific hous-
ing options, and one of 16 States tnat has adopted that single entry
point.

A few more words as I conclude about other areas in the Admin-
istration on Aging relative to long-term care. We realize

Senator Mikulski. Dr. Torres-Gil, where are you in your testi-
mony?

Mr. Torres-Gil. I am on page 15. As you can see, I am summa-
rizing. I should have mentioned that I will be submitting my testi-
mony for the record.

Senator Mikulski. Fine.

Mr. Torres-Gil. The specific survey results for Maryland are on
page 14 of my single-spaced copy.

Senator Mikulski. And you are now going to tell me about the
health care universities.

Mr. Torres-Gil. Yes, to summarize some of the other areas that
we are involved with.

As I was about to mention. Senator Mikulski, one of the prior-
ities and focus that I see for the Administration on Aging, working
closely with the rest of the Department, is to ensure that we are
providing the technical assistance and the capacity building so that
we can move on whatever the Congress may decide, but also to
demonstrate that we in the Department, both ourselves, the Health
Care Financing Administration, and the Public Health Service, are
committed to long-term care.

One of the first thingfs we did in January was to have a major
health care university, where over 400 members of our aging net-
work came to Washington, at their own expense, I might add, to
better imderstand the President's Health Security Act and its im-
plications for how they deliver services. Under Title IV, I have re-
allocated dollars to mve us a better ability to assist that network.
For example, last fml, we made grant awards amounting to $4.3
million for 13 demonstration projects in long-term care, and we are
also funding four long-term care resource centers, which will en-
hance the capacity of States and local governments to develop and
implement home and community-based care.

Long-term care. Senator Mikulski, is one of our priorities. When
I first came before you with Secretary Shalala, we laid out four
critical areas that we wanted to focus on, one of them being long-
term care. It is one of our major agendas. But there are also three
others that tie in.



We will focus on older women and the issues cf caregiving, which
is certainly tied to long-term care; on nutrition and the problems
of malnutrition — and we well know that to the extent that nutri-
tion and good meals can be provided, it enhances the independence
of older persons to stay in their homes — ^as well as our blueprint
for planning for the future growth of older persons, and certainly