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S. HRG. 107–495

ASSISTED LIVING REEXAMINED:

DEVELOPING POLICY AND PRACTICES TO ENSURE

QUALITY CARE

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

SECOND SESSION

WASHINGTON, DC

APRIL 16, 2002

Serial No. 107–24

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

PETER G. FITZGERALD, Illinois

JOHN ENSIGN, Nevada

CHUCK HAGEL, Nebraska

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

PANEL OF WITNESSES

Larry Minnix, Chief Executive Officer, American Association of Homes and

Services for the Aging, Washington, DC; accompanied by Miriam Brewer,

Alzheimer’s Association; Sandra Flores, American Assisted Living Nurses

Association; Robert Jenkens, NCB Coming Home Project; David Kyllo, National Center for Assisted Living; Donna Lenhoff, National Citizen’s Coalition for Nursing Home Reform; Doug Pace, American Association of Homes

and Services for the Aging; Ken Preede, American Seniors Housing Association; Ed Sheehy, Assisted Living Federation of America; and Bernadette

Wright, AARP ....................................................................................................... 4

Karen Love, Chair, Board of Directors, Consumer Consortium on Assisted

Living, Falls Church, VA ..................................................................................... 9

Rick Harris, Director, Bureau of Health Provider Standards, Alabama Department of Public Health, Montgomery, AL ........................................................... 22

APPENDIX

Written Statement of David Kyllo on behalf of the National Center for Assisted Living ......................................................................................................... 43

Letter from the American Seniors Housing Association ...................................... 47

Written Statement of the Assisted Living Federation of America ...................... 48

Letter from American Medical Directors Association ........................................... 54

(III)

(1)

ASSISTED LIVING REEXAMINED: DEVELOPING

POLICY AND PRACTICES TO ENSURE QUALITY CARE

TUESDAY, APRIL 16, 2002

U.S. SENATE,

SPECIAL COMMITTEE ON AGING,

Washington, DC.

The committee convened, pursuant to notice, at 2:30 p.m., in

room SD–192, Dirksen Senate Office Building, Hon. John Breaux

(chairman of the committee) presiding.

Present: Senators Breaux, Wyden, and Craig.

OPENING STATEMENT OF SENATOR JOHN BREAUX,

CHAIRMAN

The CHAIRMAN. Thank you all for coming. We appreciate the opportunity to gather in sort of an informal atmosphere to talk about

the efforts that a number of groups and organizations and individuals have put together on the question of one of the greatest challenges, I think, that face this country, and that is how do we ensure that people in this country have the opportunity to not only

live longer lives, but also to live better lives. Part of that question

is the question of what type of care is going to be available for the

nation’s seniors in the future years.

It is very clear that we are not going to be able to have people

living longer and better lives unless there is an assurance that

there will be adequate measures and facilities that give them the

services they so desperately need which is a huge challenge. It is

going to get even much more serious in the future.

I think that it is clear that when we look to the traditional way

of helping people meet their special needs as they get older, that

one way we have done it is to try and take one of our government

programs that was never intended to provide long-term care and to

try and make it fit. I am talking about the Medicaid program,

which was never intended to be a long-term care provider. It was

supposed to be a mechanism to provide health care for indigent and

low-income people.

Now we have the situation in this country where, unfortunately,

we have people who have to spend themselves into the poorhouse

in order to get any kind of help to basically find themselves placed

in nursing homes that for some are absolutely necessary, but for

many are not. So we have a lot of incredible challenges.

We have looked very carefully at assisted living facilities as an

alternative. We have also looked through our hearings at a number

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of problems that exist in assisted living facilities in terms of even

what we call them, how we classify them, whether they are going

to be State approved, federally approved, whether States will have

rules and regulations about the quality of care in these facilities,

and found that there were a lot of unanswered questions.

Rather than have Congress just go running into this area and

legislating without a good background for what we are trying to do,

we thought it was appropriate to try and get organizations and

groups together to come up with ideas about what needs to be

done, to discuss honestly what is, in fact, being done, and also to

make some recommendations. I think as an outgrowth of those suggestions, you all have come together and have been meeting and

I applaud and congratulate you for doing that. Hopefully, something can come out of this that will be beneficial from a policy

standpoint.

When you look at some of the existing rules and regulations that

cover many of the beneficiaries of the Medicare program, you find

that they are very complicated. The Medicare program itself has

133,000 pages of regulations, what you can do, when you can do

it, how you do it.

I would hope that with this particular industry, we could maybe

come up with some guidelines, if you will, that will prevent the

type of massive rules and regulations and red tape operations that

we have in the nursing home program.

I know you have been working. I congratulate you for doing it.

Maybe if we could go around the table and get everybody to introduce themselves, and tell us who you represent and maybe start,

Ms. Brewer, on your side.

[The prepared statement of Senator John Breaux follows:]

PREPARED STATEMENT OF SENATOR JOHN BREAUX

Good afternoon. I want to thank you all for being here today to discuss an issue

of utmost importance for our nation’s seniors. Assisted living, though still a relatively new phenomenon, is a popular choice for seniors who need varying levels of

assistance as their long-term care needs increase. As indicated by my multi-part series of Aging Committee hearings on long-term care, I am devoted to examining the

continuum of care options for our elderly. No longer are older Americans limited to

nursing homes and at-home caregiving when they need assistance—they now have

a multitude of options and people are demanding that good care be inherent in those

options. It is my duty as Chairman of the Aging Committee to assist in ensuring

that not only are such choices made by informed consumers but also that these

choices instill confidence and comfort in the residents. I need your help to do this

and the time is now.

Assisted living is not a new focus for this Committee. In 1999, the GAO informed

us of the lack of uniformity in state law—including the fact that there is not even

a singularly adopted definition for what assisted living is. At that hearing, it was

resolved that federal regulation of assisted living was premature and that instead,

accreditation of facilities could be a beneficial tool in improving quality of care in

facilities. In 2001, we held another hearing and learned that the self-policing of accreditation was not the tool we had hoped. Further, the industry and the consumer

advocates were not working together even though witness testimony at the hearing

seemed to indicate that all the groups shared a mutual goal—providing quality care

for seniors.

This Committee gave the assisted living community its charge—work together

and come up with a set of recommendations for how this goal can be achieved. You

all answered by forming the ‘‘Assisted Living Workgroup.’’ Undeniably, those of you

involved deserve accolades for devoting such an immense amount of time and resources to this process. I think there is inherent value in the simple fact that industry groups and consumer groups are sitting down at the table together on a regular

3

basis to develop consensus, and then report back to Congress. This is truly a new

way of developing policy and a new way of implementing Congressional oversight.

Last month I held a hearing on abuse in nursing homes. I don’t want to hold a

similar hearing in five years that sheds light on similar patterns of abuse in assisted living. Through your consensus building you have a chance to make sure that

I don’t have to. I think that many in the health care industry see the nursing home

industry as one that is very closely regulated yet is still fraught with quality of care

problems. We decided to tackle the problems in assisted living in a new way. I am

not saying that there is no role for the federal government in this arena—rather

I am saying that we need to consider all options before determining where our energies are most appropriately placed. I am pleased to learn that the Workgroup is addressing the tough questions surrounding implementation of change—and the roles

of the federal government, state governments, facilities and consumers.

The time is exceedingly ripe for change. With 77 million baby boomers starting

to weigh their care options as they age, the public is demanding more choices when

it comes to determining where to spend the final years of their lives. And it is not

only the wealthy who are looking. Most Americans cannot afford the monthly payments of $3000–$6000 a month that assisted living facilities charge. So, in addition

to quality of care issues I am pleased to learn that this group is addressing questions surrounding affordability as well. In my home state of Louisiana we do not

have a progressive attitude when it comes to long-term care. There is still no Medicaid waiver for assisted living. Through this and other programs I hope to help make

it possible for our nation’s poor seniors to have the same access to quality care as

those who are more financially secure.

The timeline this Committee established last August remains unchanged—I look

forward to hearing this group’s recommendations come next April. I understand that

with any diverse group the development of consensus recommendations will undoubtedly produce some issues for which minority opinions cannot be avoided. However, I expect that these minority opinions will be the exception and not the rule.

And I will be expecting substantiation on issues for which agreement cannot be

reached.

As we told you last year, you are the experts. You are the primary drivers behind

the development and direction of your recommendations. I would like to commend

you all for your hard work over the last few months. You are doing a service for

our nation’s seniors. And by working with each other and with the Special Committee on Aging you are truly doing a remarkable thing. With this innovative and inclusive way of crafting policy together we can make history.

Thank you and I now turn to my colleague(s) for any additional opening comments.

Ms. BREWER. Miriam Brewer, Alzheimer’s Association.

Mr. KYLLO. David Kyllo, National Center for Assisted Living.

Ms. FLORES. Sandra Flores, the American Assisted Living Nurses

Association.

Mr. JENKENS. Robert Jenkens, the Coming Home Program for Affordable Assisted Living.

Mr. PACE. Doug Pace for the American Association of Homes and

Services for the Aging.

Mr. MINNIX. Larry Minnix with the American Association of

Homes and Services for the Aging.

Ms. LOVE. Karen Love with the Consumer Consortium on Assisted Living.

Mr. HARRIS. Rick Harris, National Association of Health Facility

Survey Agencies.

Mr. PREEDE. Ken Preede with the American Seniors Housing Association.

Ms. LENHOFF. Donna Lenhoff with the National Citizen’s Coalition for Nursing Home Reform.

Mr. SHEEHY. Ed Sheehy, Assisted Living Federation of America.

Ms. WRIGHT. Bernadette Wright, AARP.

The CHAIRMAN. I thank all of you and I think the way we have

this thing structured is that three of you will make some presentations. Would the three presenters go ahead and proceed. Larry.

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STATEMENT OF LARRY MINNIX, CHIEF EXECUTIVE OFFICER,

AMERICAN ASSOCIATION OF HOMES AND SERVICES FOR

THE AGING, WASHINGTON, DC.; ACCOMPANIED BY MIRIAM

BREWER, ALZHEIMER’S ASSOCIATION; SANDRA FLORES,

AMERICAN ASSISTED LIVING NURSES ASSOCIATION; ROBERT JENKENS, NCB COMING HOME PROJECT; DAVID KYLLO,

NATIONAL CENTER FOR ASSISTED LIVING; DONNA

LENHOFF, NATIONAL CITIZEN’S COALITION FOR NURSING

HOME REFORM; DOUG PACE, AMERICAN ASSOCIATION OF

HOMES AND SERVICES FOR THE AGING; KEN PREEDE,

AMERICAN SENIORS HOUSING ASSOCIATION; KEN SHEEHY,

ASSISTED LIVING FEDERATION OF AMERICA; AND BERNADETTE WRIGHT, AARP

Mr. MINNIX. Thank you, Senator, and I thank the committee. We

appreciate the opportunity to do this. Our organization, AAHSA,

represents 5,600 mission-driven not-for-profit members that represent the various components of the continuum of care, including

assisted living. We serve more than a million people every day.

AAHSA and its members have long been committed to a vision of

healthy, affordable, and ethical long-term care for Americans.

I am here today, Senator, representing the Assisted Living

Workgroup, which has been a remarkably productive process representing 50 organizations, consumers, providers, government, and

others, to try to responsibly deal with the growing issues of assisted living. We appreciate the opportunity to develop this road

map. There is a lot of ownership to this process by the group and

we will continue to work diligently to finish our job and give you

a report this time next year to outline specifically how we would

recommend assisted living should operate.

We realize we have one last chance to take responsibility for

shaping the future of assisted living. You built the fire under us

last year because of problems in the field and now it is time for

us to be consumer-oriented so that we can assure that the residents and families of assisted living have the highest quality of

care and quality of life that they deserve. We have little time to

be competing among ourselves about issues and there has been a

minimum of that kind of activity.

We believe that assisted living can be tailored to the complex

changing needs of the residents served. We believe it can be affordable. We believe it can be responsibly managed. We believe it does

not have to be turned into the new nursing home. We believe that

the public can trust us to do it well and we hope that by this time

next year, we can lay out a plan that you can feel confident about,

as well.

Issues of disclosure, quality, and unclear expectations have

raised questions about confidence in us, which prompted you to ask

our organizations to convene and to address this problem. Through

a consensus-building process, we are hopeful we will be able to

produce a document that will be a blueprint for assisted living,

which is, no question, an important component of care for older and

some chronically impaired populations, which, as you know, are

growing dramatically in our country.

Not only do we want to maintain and improve quality, but help

consumers understand what they are getting for their money so

5

that there is proper disclosure. When families turn to assisted living care, sometimes it is out of desperation and they do not know

what to ask for. They move into the closest place to relieve themselves of some of the pressure they feel, and so oftentimes they do

not know what they are getting themselves into. From our standpoint, we have not made it clear what we offer and what the limits

of assisted living could and should be. So we are committed to full

disclosure to consumers to let them know what we offer and why

we offer and how it works.

Assisted living has experienced phenomenal growth over the past

15 years due largely to the recognition that it provides that desirable cost-effective, dignified living environment that is not a nursing home, and that is important for consumers’ choice. They favor

it because they get the help they need with everyday living tasks

without being forced into a nursing home or hospital-like model.

We like to call it a wellness model, which is a blend of social

kinds of support with physical kinds of support and the appropriate

health backup when needed. Supportive services are provided in a

way to maximize the residents’ dignity, autonomy, privacy, independence, and safety. We will help you take care of yourself versus

we will take care of you, and that is really a good way to distinguish between assisted living is and what nursing home care is.

The beauty of assisted living is that it covers a diverse array of

services and settings to meet the varied and often complex needs

of residents, and we hope that flexibility could and should be maintained.

A typical assisted living resident is a woman, aged 82 or older,

who is ambulatory but often needs assistance with two to three or

more personal activities, such as bathing and dressing and medication, and the resident needs our best effort in this process. Frequently, these people have multiple medical diagnoses that are stable and you need to make sure, the family needs to make sure that

these conditions remain stable and that there is a process in place

when someone has an acute problem, that they can be responded

to in the appropriate way.

We thank you again for the opportunity to take responsibility for

this important dimension in long-term care and services and we

will continue to work hard this next year to give you the blueprint

that, again, the bottom line is that that 82-year-old and her family

can have confidence that we are doing the right thing the right way

and we think that is possible to do, Senator.

The CHAIRMAN. Thank you very much, Mr. Minnix.

[The prepared statement of Mr. Minnix follows:]

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The CHAIRMAN. Ms. Love, do you want to go ahead and go next.

STATEMENT OF KAREN LOVE, CHAIR, BOARD OF DIRECTORS,

CONSUMER CONSORTIUM ON ASSISTED LIVING, FALLS

CHURCH, VA

Ms. LOVE. Thank you. Chairman Breaux and Senators Craig and

Wyden, thank you for the opportunity to speak today. I am here

on behalf of the Consumer Consortium on Assisted Living and my

Assisted Living Workgroup colleagues. We commend you for providing the unique opportunity to jointly work on ensuring quality care

for those residing in assisted living communities.

I would like to start off by presenting an image that highlights

the humanity of the work before us. Imagine if you went to see a

play and the orchestra was seated in the first five rows of the audience. The lighting and sound technicians were running cables,

microphones, and lighting on stage. Set and costume changes were

made before the audience. Orchestra members were talking out

loud in between the musical interludes. The director was providing

audible instructions to the actors and the technicians. Can you

imagine enjoying such a play? Even worse, what if this play was

your everyday life?

Unfortunately, the typical long-term care residential experience

too often is functioned like this play. Staff and their operation take

center stage instead of the residents. The provisions of meals,

housekeeping, maintenance, health care service, and facility administration should actually be done behind the curtain and not detract from the actual living experience that makes up the everyday

life of the individuals who reside in these communities.

So besides the simple process of collaborating over 15 national

organizations, we are also reframing how care is provided.

The participants of the Assisted Living Workgroup represent the

broad array of stakeholders in assisted living, providers, consumers, consumer advocates, long-term care, health professionals, regulators, direct care staff, aging and long-term care organizations,

disability organizations, State and local government, and others, in

all, over 50 national organizations, and a full list of the participants is attached to my testimony.

While there is great diversity among the Assisted Living

Workgroup participants, our common ground centers on ensuring

quality care for these residents. The ALW is working to develop a

report of consensus recommendations to present to this committee

in a year. We have entitled this report, ‘‘Ensuring Quality Care in

Assisted Living: Best Practices and Guidelines for State Regulation, Federal Policy, and Operations,’’ in order to capture the wide

range of information being considered. Our work is focused on setting the bar for regulations, policies, and operations.

The ALW decision process relies on consensus building. A twothirds majority of ALW participants move a recommendation forward to a vote. Again, a two-thirds majority is necessary to adopt

a recommendation. Participants not able to adopt a majority recommendation must form consensus on a minority position. The report will clearly indicate the specific organizations agreeing to a

recommendation, those organizations that have a minority position,

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and finally, if there are any organizations that cannot agree with

either.

The Assisted Living Workgroup developed a working definition of

assisted living that is attached to the testimony. Additionally, we

have six topic groups that meet at least once a month to discuss

and work on the substantive issues surrounding each topic. These

groups are Resident Rights and Facility Ethics, Staffing, Medication Management, Operations, Direct Resident Care, and Affordability.

While the substantive issues are generally unique to each topic

group, the ALW recognizes that there are a number of overarching

interests that each topic group should take into consideration as

recommendations are crafted. These specifically are quality indicators, best practices, outcome measures, research, considerations for

individuals with cognitive impairment, accountability, facility size,

affordability, and education and training.

Again, as we work to develop consensus recommendations on

State regulations, Federal Policy, and facility practices, we need to

be ever mindful of the need to focus on the living experience for

residents and not to accidentally place staff and services on center

stage. Thank you again for the opportunity.

The CHAIRMAN. Thank you, Ms. Love.

[The prepared statement of Ms. Love follows:]

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The CHAIRMAN. Mr. Harris.

STATEMENT OF RICK HARRIS, DIRECTOR, BUREAU OF

HEALTH PROVIDER STANDARDS, ALABAMA DEPARTMENT

OF PUBLIC HEALTH, MONTGOMERY, AL

Mr. HARRIS. Thank you, Senator. I am the State regulator on the

Assisted Living Workgroup and my fellow State regulators around

the country and I live and work in a landscape of conflicting demands.

We are, for example, told that we must establish high standards

for quality of care and quality of life in assisted living, but we must

not drive the cost of services beyond an affordable range. We are

told we must encourage providers to offer alternatives to nursing

home care, but not at the cost of running local nursing homes out

of business. We are told we must promote autonomy and independence for residents, but we must also keep them safe from abuse

and neglect. Of course, we have to inspire public confidence by inspecting facilities frequently and thoroughly, but keep regulatory

program costs down.

The fact is, the assisted living industry has received a lot of regulatory attention recently. According to the National Association of

State Health Policy, at least 32 States have adopted legislation covering assisted living facilities in the past 2 years.

A couple weeks ago, I took an informal poll of all the State directors around the country, and out of 26 who responded to the poll,

20 said that their State is currently considering changes to assisted

living rules or regulations. Assisted living is a very hot issue in

many, many States.

We actually, State regulators, face two big challenges in regulating the assisted living industry. The first challenge is that we do

not have enough resources. It is a significant source of anxiety to

us. What would make me and my colleagues better able to sleep

through the night would be having a sense that assisted living facilities are being inspected often enough that it would be unlikely

for serious abuse or neglect to go undetected for a very long period

of time.

Unfortunately, not many of us believe that is the case. Most

States do not have enough assisted living surveyors and do not

have the money to hire more. I venture to say my State is not an

atypical example. We spend about $5.5 million a year inspecting

244 nursing homes. At that rate, we are constantly struggling to

meet our workload requirements and we do not always make the

mark. In our assisted living program, which has over 330 facilities,

we are spending only about half-a-million dollars a year.

There is also another challenge that is confronting State agencies. In the nursing home regulatory program, my State, every

State, relies on well-established national standards. I can acknowledge to you there is some controversy over the survey and enforcement methodology that is used in nursing homes today, but I have

never heard anybody really come forward and argue that the nursing home standards, the care standards, need to be changed in a

significant way.

When it comes to the assisted living industry, though, it is an incredibly different experience for us. Basically, the States have been

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left completely to their own devices. There is no national standards, no independently devised model rules, no national consensus

on any of the significant regulatory issues involving the assisted

living industry. This necessarily means that there are as many

ways of regulating assisted living facilities today as there are

States that regulate assisted living facilities.

If a State agency director were to decide to write new assisted

living standards, he or she might look to other States for guidance,

but out of the other 49 States, what choice should that person

make? Right now, States do not agree about who can live in assisted living facilities, who gets to say who gets to live in assisted

living facilities, who can do what to the residents who are in the

assisted living facilities, nor do we even agree about what an assisted living facility is. So how is a State agency director supposed

to have any confidence that another State’s approach or an entirely

new approach would be an adequate way to govern the assisted living industry?

I think the Assisted Living Workgroup will be a very valuable

tool for State agencies because it brings together a wide variety of

people and organizations from around the country who come to the

table with expertise and with perspectives. In our individual State

regulatory deliberations, we are not very often exposed to such an

extensive range of viewpoints as we get at the Assisted Living

Workgroup.

When the Assisted Living Workgroup can achieve consensus

around the issues that are faced by the States, it will establish

some very useful benchmarks by which we can measure ourselves.

It can also help us bring some resolution to some incredibly thorny

issues. But I think even more importantly, the Assisted Living

Workgroup can help State agencies think through some of these

very complex regulatory issues. So even if there are issues where

the workgroup can achieve consensus, there would still be value if

the final report of the workgroup would include some discussion of

different considerations that surround an issue.

For example, there would be a benefit if we could achieve at long

last a national consensus on the definition of assisted living, but

there will be even more benefits if we can describe how that definition was derived, if we lay out the questions that the definition is

designed to answer, and if we set out alternative definitions that

were not adopted and explain why they were not.

My own participation in the workgroup has been very rewarding

to me and it is going to help my own agency in Alabama as we

grapple with assisted living issues. I look forward to the opportunity to share my experiences on the workgroup with my colleagues from around the country, but I am particularly looking forward to this final report from the workgroup. I think it is going to

be a very valuable tool for all the States who are currently updating their regulatory systems and for all those who will do so in the

future.

So for that reason, Mr. Chairman and members of the committee,

I thank you. These thanks are from me and they are also offered

on behalf of State survey agency directors from around the country.

We appreciate your work and the work of your very dedicated staff

in bringing the Assisted Living Workgroup into being.

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The CHAIRMAN. Thank you, Mr. Harris.

[The prepared statement of Mr. Harris follows:]

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The CHAIRMAN. I thank the three presenters.

Senator Craig, do you have any comments you would like to

make?

Senator CRAIG. Thank you, Mr. Chairman. I apologize for running a bit late.

The topical areas that you are now investigating and that you

have arrived at, I think are tremendously important, from the residents’ rights and facility ethics all the way through to medication

management and affordability. Are you ready to start questions, or

do you—— The CHAIRMAN. Let me just go to Ron to see if he has any—— Senator CRAIG. Then I will hold off. I do have one question as

to how all of that comes together in this final report and whether

you have got State regulators looking at this in a favorable light

or in a rather critical light. We hope it is the first instead of the

latter.

Mr. Chairman, thank you for keeping this moving. We think it

is necessary and important to set a national standard here from

which we can judge, and if in the end, as you have said, Rick, if

we can just come to a definition of what we are about, that is clearly steps gained and maybe some direction gained. But thank you,

Mr. Chairman.

The CHAIRMAN. Let me just go ahead and take out the first question. I thank all of you, and those who are not presenters, if you

have some different recommendations, we will try and give you the

opportunity to make those statements, but we will try and direct,

I guess, the questions to the three presenters, and then for those

who are not one of the three, we will certainly have the record open

and have people be able to make submit testimony if they feel that

they want to.

Let me just start with a general thing. What we are trying to do

is to solve problems before they become crises. We spend so much

of our time looking at nursing homes and other deliverers of health

care systems about what is wrong, what is right, what is not being

handled properly. This system, this industry, this way of providing

help to seniors is kind of in its infancy, but it is growing very rapidly. We want to try and come up with some ideas about where we

want to go and how we want to get there before we have a lot of

problems. This is the sort of preventative type of preparation I

think that we are trying to encourage the industry and consumer

groups to engage in.

Let me just ask a general question, and that is that some may

argue that, look, government does not have any business being involved in this, that most assisted living residents are private pay

customers. We are not funding this under Medicaid to any large extent. We are not paying for it under Medicare. The government has

no business being involved in it, particularly the Federal Government. Let the States do what they think as long as it is private

pay customers. You do not need to have Congress involved in this

at all. Do any of you have any comments about that argument and

that recommendation?

Mr. MINNIX. I have a comment about that, Senator. I think the

government always has a responsibility for people who are vulnerable, and you look at some of the senior populations that use asVerDate 11-MAY-2000 09:42 Jul 24, 2002 Jkt 000000 PO 00000 Frm 00031 Fmt 6633 Sfmt 6633 C:\DOCS\80170.TXT SAGING1 PsN: SAGING1
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sisted living, the stress that the family is under. Government has

to be concerned about that.

Do you need to regulate assisted living to the extent that, say,

hospitals and nursing homes are regulated? I do not think so, if we

can take responsibility for ourselves.

I think Mr. Harris is correct that if over the next year we can

give some guidance to States on just such basic things as definitions and what types of assisted living guidelines, and then you

would have to decide, of course, from the Federal level how you

would express your interest in that, but I think, generally, this is

one of these things that comes under the heading of we need to

think global and act local. But there do need to be some guidelines

and the public does have an interest in these kinds of populations

and you would be remiss in not expressing that in some way.

The CHAIRMAN. I take it that no one would disagree, then, with

that position?

Ms. LENHOFF. Mr. Chairman, I would actually have something to

add about that, which is that, although I think you are right that

the Medicaid proportion is small, in some places, it is greater. I

was surprised to learn that in Wisconsin, for example, 50 percent

of people in assisted living facilities are drawing down Medicaid.

That was what I just heard from the State ombudsman yesterday

and I want to check that out because it struck me as high, but if

it is even half that, that is more than I thought it was.

The CHAIRMAN. It is likely the exception rather than the rule.

Ms. LENHOFF. Yes, that is probably true, but it is growing. I

think, also, that assisted living facilities have a strong impact on

interstate commerce and they have a strong impact on Federal

spending in that if there is bad private pay care, it is going to lead

quickly to increased Medicare and Medicaid bills down the line. So

from the point of view of protecting the taxpayers’ interest, we do

have to pay attention to the quality of care.

There are also consumer protection questions that are implicated

by assisted living and immigration law issues that are implicated

as it applies to staffing in assisted living, for example. So I think

that there are reasons why Congress quite rightly is concerned.

I agree with Larry that that does not necessarily mean that you

get a comprehensive soup-to-nuts regulation, but rather each problem needs to be looked at individually and see what the Federal

role is or ought to be.

The CHAIRMAN. Let me ask, from a structural and organizational

standpoint, you have about 50 groups, organizations, that are participating in this advisory committee. Later, we going to be facing

organizations and groups saying, look, we wanted to be involved in

this process but the workgroup did not let us in or anything of that

nature? How do you get in?

Ms. LENHOFF. We are begging them to come on in.

The CHAIRMAN. Just volunteer and you are in?

Mr. PACE. In November, we did send a letter out to just about

everyone we could think of that is involved or has an interest in

long-term care and aging services. We contacted those people by

letter and told them of this workgroup and told them they could

be involved. In that ongoing process, it is still very much of an open

29

door process and anyone that wants to join the Assisted Living

Workgroup is welcome to do so.

The CHAIRMAN. I think it is important to have it as open as possible. I mean, you do not want to have every person in the country

on the workgroup, otherwise it would not be a workgroup. Obviously, you have a unique opportunity, I think, that we have tried

to give you and sort of urge you to take, because I do not know of

any other area, particularly in health care, where we have actually

told the people who are involved in receiving the care and providing the care, to work together and recommend to Congress what

systems would be most appropriate.

I mean, this is a very unique thing that you are doing and it

could be, I think, the flagship of how we can do things in the future

as far as an example, if it is successful. If it falls flat on its face,

there will be some that say, it does not do any good to listen to all

these people. Congress might as well go ahead and write the rules.

What we are doing is asking you in advance, what do you think

the system should be? How should it work? Give us your thoughts

and ideas before we get involved in writing rules and regulations

that may not fit. So we are doing it a little bit differently. I think

it is probably unique, but it is also a real opportunity to set the

stage for perhaps other things we may be able to do by listening

to the people first that are going to be most directly affected.

Senator Wyden.

Senator WYDEN. Thank you, Mr. Chairman. I want to commend

you in particular for your leadership in going at this task in this

fashion. I also want to thank Senator Craig. As you both know, you

gave me the opportunity to be involved in this from the beginning.

I want to talk for a moment with the group about my sense of really where we are at this point.

The origins of this effort really stem from debate about nursing

home regulation in this country. As many of you know, I was Director of the Gray Panthers in Oregon for about 7 years before I went

to the House and have strong views about these issues. The whole

goal of this exercise with respect to assisted living is to not have

people 20 years from now debating the very same problems that we

are starting to see develop today. That is what happened with

nursing homes we did not have a debate like this 20 years ago, and

now Senator Breaux, demonstrated when the Committee held a

hearing on elder abuse just a few weeks ago, we are debating questions now that you like to think would have been handled 20 years

ago.

So this is an important exercise, and as the chairman has noted,

the question is, can we make this work? Can we show that there

is a patient, consumer, and provider coalition out there that can

make this happen? I want to ask some questions designed to elicit

where we are. What I think is important today is to get a sense

from all of you, the presenters what are the major areas you seem

to agree on and what are the major areas that are most contentious

where agreement is hard to reach.

In the second GAO report that was done for the chairman and

myself and Senator Grassley, at page 13 of the report, there is a

section by the General Accounting Office saying much information

considered key by consumer and industry groups is not routinely

30

provided in writing. Now, what that means is that the patients and

the families are basically in the dark with respect to making these

choices about assisted living and they like to be able to compare

apples to apples and make choices that are helpful to both of them.

I would like to start my questioning by way of seeing where we

are among the industry and the consumer people. With respect to

consumer protection is this an area now, where it is fair to say

there is agreement now between the patient advocacy groups and

the industry?

Mr. MINNIX. I believe that we are in agreement on a working definition of what assisted living is because there are all kinds of definitions. It is called personal care in some States, assisted living in

other States. I believe we are in agreement there.

I think we are in agreement on issues related to full disclosure,

and that was a hard one to work on because that is one of the problems that you brought to our attention a year ago, was the absence

of full disclosure.

I think there is an awful lot of agreement on what the program

of assisted living is, how it ought to be defined, but there is still

debate on whether that needs to be in levels of assisted living and

just how should that be expressed.

There is some general perception among, I think, most of us that

there needs to be some kind of medical involvement in some types

of assisted living without making it a medical director in a nursing

home. We are still working on issues of staffing, how do you define

that. We generally agree that it needs to be according to the needs

of the residents of the particular facility it is serving, so in some

cases, that may need to be an RN present for part or all of the day.

In other cases, it may not be, depending on what the defined limits

of that assisted living facility are.

So I think we are working on some of the mechanics of all of

that, but some of the general things like definition, disclosure, we

have come together on.

I think that one issue that will be discussed, and Donna Lenhoff

mentioned it, how is it going to be financed? If we are really going

to have something that is affordable, what are our recommendations going to be, because assisted living is still not accessible to

modest and low-income people very easily.

Well, one way to do that is to work with HUD on converting

some existing low-interest financing housing to make that affordable, but in some States, you are inevitably going to turn to Medicaid. Is it possible to include long-term care insurance in some of

the financing models, as some policies do now. So we are going to

have some things like that that will be brought to you, especially

around the financing.

I am confident that by this time next year, we will agree on the

blueprint of what a program of assisted living ought to be, because

I think we are very close about that, and yet there is some debate

that still needs to occur.

Senator WYDEN. Ms. Love, Mr. Minnix essentially said that on

that key GAO recommendation, so that families can compare and

make choices in advance that make sense for them, he thinks that

there is industry and consumer agreement. Do you share his view

on that?

31

Ms. LOVE. Yes, I do. I think that we have made a lot of strides

in this last year. The next step Senator Wyden, is to operationalize

it. At a public policy level, we are in discussions additionally we

need to integrate this out into the field so when you actually walk

into an assisted living facility, you have this happening. That is

going to be part of our challenge.

The other part of the challenge, as you put out there, and we

have not worked this out yet so we do not want to come before you

with all of our answers today because they have not all been clarified, but we can come up with this good blueprint that Mr. Minnix

talks about. That does not necessarily mean that 50 States and the

District of Columbia are going to adopt and operationalize them. So

that is a challenge still before us.

Also, it is a dynamic process. It is something that we continually

need to work on. We cannot just simply develop it and put it on

a shelf and rub our hands and say, gee, we are done. We have got

to develop a system that continues to review and evaluate the recommendations. We do not have this aspect developed yet. Maybe,

as you said, Senator Breaux, that is another thing we flagship on,

is a method to be able to do that.

Rick Harris talked very succinctly about the need for survey and

oversight systems. So we have got a lot of work still before us.

Senator WYDEN. Tell me, if you would—I want to just see if I can

get a couple out quickly, and then hopefully maybe we can have a

second round, Mr. Chairman—on the staffing issue. Mr. Minnix

mentioned that staffing was an area where there were significant

differences at this point between providers and consumers. That is

an important area because that goes right to the heart of the quality debate and that was what Chairman Breaux and I and Senator

Grassley zeroed in on from the beginning. We said there are really

two issues that are critical, the consumer protection questions and

the quality questions.

Why do you not tell us, if you would, your sense of where things

stand on the staffing question and, if you could, what are the areas

of agreement, what are the areas of disagreement on staffing, because I believe this issue is at the heart of quality.

Ms. LOVE. You are absolutely right. Again, we do not have answers yet. Fortunately, we have still got a year. We have a topic

group on staffing. Some of the points that you bring up are the

issues that we are trying to work through.

One of the ways that we are looking outside the box is about ratios. We are trying to look at this in an entirely different way and

utilize on some of the research that is both underway currently and

some just finishing up to analize an acuity-based staffing model.

The four provider organizations that have been actively involved in

the ALW have been working to improve quality.

Senator WYDEN. Let me ask just one other question on this

round. I am unclear as to the collective sentiment with respect to

the role of the national government and the State government in

this issue.

As you know, at the hearing that we held after the second report

came out, I had gotten the sense from consumer organizations that

the idea of a model State statute, an area of baseline protections

at the State level that addressed quality and consumer protection

32

issues, was an area where there was at least some growing interest

and growing support. During the last few months as this has been

discussed, I have heard more talk about national standards in

some areas and State in other areas. Could you give me the consumer perspective on the comparative merits of a model State statute versus a more national approach.

Ms. LOVE. That was part of what the ALW wrestled with on the

title something that would adequately describe what the final product will be a year from now. We settled on ‘‘Best Practices and

Guidelines for State Regulation, Federal Policy, and Operations.

We have looked at some of the other industries that are regulated on a State level. There is a challenge in getting all the States

to set a similar bar and we do not quite have the answer to how

we are going to work that part out yet. There are, ways that working effectively with states Congress and Federal agencies we can

collaboratively develop a successful plan.

I will give you an example. In our staffing topic group discussion

just this last week, one of the things that we were looking at was

background checks. If checks are conducted on individuals in just

one State, then that is all you get. You get somebody that is

cleared in one State. But what if we tapped into a national resource, the FBI data bank? Here is an example of where we could

utilize Federal national resources that would work significantly

well across the country.

Senator WYDEN. I hope that you will look at a variety of approaches to address the State and the Federal area, and one I

would offer up, actually, we have not talked about it as we have

been at this issue, is in the Medigap area, the area where there

is an actual program that has been a huge difference for older people in this country.

When I was Director of the Gray Panthers, you saw senior citizens with seven or eight policies, health insurance policies to supplement their Medicare, and we wrote a law to change that and it,

in effect, lets the State take the lead, but then has a national

backup, a sort of national backup that ensures that if a State were

to slough off, that there would be a specific way to protect consumers, and my assessment is that this has made a real difference for

patients and consumers and families and is also something that

provides enough flexibility to providers that it is attractive to them,

so perhaps you might want to look at that Medigap model for the

relationship between the State and the Federal Government.

The chairman has given me a lot of time on this round and hopefully we can do a little more.

The CHAIRMAN. Thanks. I was reading an article in the New

York Times and it talked about the things that people were concerned about, what things they did not have information on when

it came to the question of assisted living facilities. What I wanted

to do is ask whether you think your recommendations will cover

these areas. The ratio of patients to staff?

Mr. MINNIX. Yes, sir, we will have a recommendation about staffing.

The CHAIRMAN. Qualifications of staff members?

Mr. MINNIX. Yes, sir.

33

The CHAIRMAN. What a facility must disclose about their fee

structure?

Mr. MINNIX. You bet.

The CHAIRMAN. Financial stability?

Mr. MINNIX. Yes, sir.

The CHAIRMAN. Policies for discharging patients?

Mr. MINNIX. Yes, sir, and also, in addition to that, how they are

assessed to begin with, what happens in certain circumstances, like

emergencies. It will cover a full range of those kind of policies.

The CHAIRMAN. On discharge, you mentioned, and I guess it is

also the question of accepting a patient. If a family tries to put a

relative in an assisted living facility, I think there should be some

standard as to when the assisted living facility would say no.

Mr. MINNIX. Yes, that is right.

The CHAIRMAN. This patient is sicker than should be accepted in

this facility. Perhaps this patient, this family member needs a

nursing home.

Mr. MINNIX. That is correct.

The CHAIRMAN. OK. I take it that, and maybe, Mr. Harris, you

can address this, how many States—I am reading this and it says,

unlike 29 other States, New York has not undertaken to regulate

the emerging industry in ways that would consistently protect residents. Does that mean that only 29 States have done that? How

many States have policies, if you will, for assisted living facilities

that set out standards on licensing procedures that they have to

meet?

Mr. HARRIS. I think almost every State has some sort of system

for licensing assisted living facilities, certifying them, and that can

vary from just requiring them to register and maybe send in a

small fee to get back a piece of paper that says they have registered, to some fairly extensive regulatory requirements being imposed.

It is even more complicated than that because I think what has

happened to the assisted living industry is that as States have developed regulatory models, the industry in that State, in each

State, has grown to accommodate the regulatory model. So in, for

example, Connecticut, they seem to follow a model where the assisted living facility is more or less an apartment building and then

people contract out to have services brought in. Some States allow

just about anybody to live in an assisted living facility and then

they regulate how extensive the care needs to be that is provided

in that facility. Other States regulate pretty closely who can live

in an assisted living facility and have various levels of assisted living facilities.

So it would be very difficult, I think, to develop a one-size-fitsall approach for States without doing a lot of violence to what can

be a fairly well-established industry in that State and a model that

may be working there.

The CHAIRMAN. I take it that you all have or will have contacted

some of the larger industries that are becoming involved in this,

Marriott, Hyatt. It would seem to me that if I was running their

operations in this area, I would really want some national standards so that I would not have 50 different sets of rules and regulaVerDate 11-MAY-2000 09:42 Jul 24, 2002 Jkt 000000 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 C:\DOCS\80170.TXT SAGING1 PsN: SAGING1
34

tions, depending on where I have facilities. Have you all heard

from any of them? Are they represented in any way?

Mr. MINNIX. I think they are involved through ALFA and I think

you would find those organizations generally wanting to meet high

standards. One of the things that I will say as CEO of AAHSA,

what I think is possible here, it may be possible in this unprecedented way to present to you with a blueprint and a set of standards in which we might even have a self-governed accreditation

kind of process that could be accountable to the public in a disclosure kind of way from the ground up and make that work.

The CHAIRMAN. Giving you a unique opportunity to write the bill.

Mr. MINNIX. I think we can do that and prove to the public that

we can be responsible. Now, that gets everybody a little nervous

because of the nursing home experience in this country, but it is

possible to do.

The CHAIRMAN. I do not reject it out of hand. I think there is a

natural tendency on consumers’ parts to go back to the old adage

of not letting the fox guard the chicken coop. I mean, obviously, if

you are going to let the people who are benefiting financially from

running the program regulate the program, you really have to have

a tightly drawn set of rules and regulations as to what standards

are going to be met and also some type of provision for when you

have some bad actors who do not want to meet those standards.

Mr. MINNIX. Yes.

The CHAIRMAN. Have you all discussed the question of what do

you do if you have a set of rules and principles that you all can

agree with, then you have one provider of assisted living facility

services that consistently and repeatedly do not meet those standards, do you have any thoughts or ideas about how to self-police

in those areas if that, in fact, is the result?

Mr. MINNIX. Well, you kick them out and tell them they are no

longer accredited if we are willing to put teeth in it. The problem

oftentimes in self-accreditation, as you know, is that people get soft

on their friends and we cannot have that kind of thing. If we would

have a self-governance kind of process, it would have to include

strong representation from consumer groups and other types of

businesses, like the insurance industry, for example, and maybe

even representation from State government if we are going to have

a strong public accountability process, but I believe it is possible.

The CHAIRMAN. Ms. Love, can you comment on that? I mean,

how do we do that? If you come up with rules and standards and

somehow Congress blesses that as a national program for assisted

living facilities, how do we ensure that the bad actors would be

dealt with in a way that would not allow them to continue?

Ms. LOVE. I think that Larry talked about the right direction. We

must have a strong enforcement system. Something that has teeth

in it. Some of the States, for example, may have good regulations

in place, they may have a survey system, but then there are no

teeth in it and we can tell that those States have the higher facilities that do not perform well. So we have got some anecdotal data.

Not all of us are willing to sign off on a deeming self-accreditation process, but in the spirit of our collaborative nature, I think

that is something for us to talk through. So I do not have any answers yet.

35

The CHAIRMAN. Any other comments on that, Rick?

Mr. KYLLO. Senator, I would like to comment.

The CHAIRMAN. Yes?

Mr. KYLLO. I come from an organization which represents both

assisted living facilities and nursing homes, so I think we are in

a position where we have had the experience and watched enforcement of standards. I think we have an opportunity here as we look

forward to really create a secondary role for government, which is

that of consultant, and I think that we can work together in partnership.

That does not mean you do not have in place an enforcement system with teeth, but I think it does mean that you work more in

partnership trying to solve problems as they arise, so you have a

more open dialog. This was a concept that the Assisted Living

Quality Coalition embraced 2 years ago when it came out with its

document, and there are several members around this table.

The CHAIRMAN. I think that is very important. I think to the extent that you can devise something that really deals with those

who are consistently bad apples, if you will, No. 1, it is in the industry’s interest. You do not want to have members in your industry that are doing poor jobs and reflecting badly on the industry

as a whole, not to mention the problems it causes for individuals

who are not adequately served. You do not want them in your accredited, approved operation if they are not getting the job done.

So you have to have, I think, some type of clearly defined standards as to what they are expected to do and how they are expected

to meet those goals, and then some type of penalty, if you will, for

those who do not meet the standards.

This can be made to work. It is not going to be easy. But if you

do not do it, I will tell you, Congress is going to do it, and I will

guarantee you, just as much as sure as I am sitting here, if you

all do not come up with something that is workable, you are going

to end up having Congress pass rules and regulations and end up

micromanaging this industry, which I would imagine that probably

most of the providers do not think is in their best interests. Maybe

even consumers would think that if we could do it a different way,

residents could end up with a better result.

Mr. HARRIS. Senator, if I may add, I think there is a difference

between having a lot of provider and consumer input into the development of standards and having an enforcement system that is

essentially self-policing. It is very appropriate and necessary, in my

view, to bring as many people to the table as we can as we look

at these standards and that we listen to the points of view of everyone and make sure they are fully considered.

But in the end, health care providers are like everybody else.

They are human beings and their behavior falls on a bell curve and

there are going to always be bad actors in the industry. I think the

only effective way to deal with that is to have disinterested third

parties, and I think a well-motivated State regulatory agency that

is close to the situation is in the best position to do that. We in

my state are dealing with about 12 operators right now in various

stages of enforcement actions and that has a salutary effect on the

behavior of some of the other providers.

The CHAIRMAN. These are assisted living facilities?

36

Mr. HARRIS. Yes, sir.

Mr. SHEEHY. Senator, I would just like to maybe add another

thought to that. I think that, from our standpoint and I hope others, that the real value we see coming out of the Assisted Living

Workgroup recommendations is that to the extent that we are able

to build a national consensus is we will be able to take that back

to our respective constituencies back in the States and create the

motivation and the catalyst to then take those recommendations

and use them as a benchmark. So as the States go through their

revision and updates of their rules, they will have the assisted living recommendations to work with.

So I really think there is real value that the people around this

table and in this room are building this consensus so we can take

that back with us to the States. We echo your thoughts there that

we do not want to see the Federal Government come in and with

a heavy hand and regulate us, so I think we are all motivated to

make sure that we are not just a Washington-based coalition creating some recommendations that will sit on the shelf. We are motivated to take that back to our members and to our constituents

and have everybody step up to the plate and really make a difference.

The CHAIRMAN. Thank you. I think that Rick has pointed out

something that is obvious, and that is that there are really two

questions. No. 1, what should the standards be, and you are all

working on that in all these areas we talked about, patient ratios,

qualifications for the acceptance and discharge and all of those very

complicated procedures about the day-to-day running of an assisted

living facility. You are going to be very helpful in coming up with

those recommendations for the first time, which could become the

standards for the industry.

The second question then is, what happens when you do not

meet those standards, and the question becomes whether you take

actions within your own industry to police yourself or do you take

those recommendations, give it to Congress, and we set up a system whereby we try to moderate and supervise and, in effect, regulate to make sure people are meeting the standards that we can

agree on.

I think that as there is going to be more and more of an incentive

to have tax credits, for instance, to be used for long-term health

planning, there will be more of an urging that since we are helping

to pay for it through the use of the taxes, that we should be more

involved in actually supervising it and make sure it is being run

properly. Those are the big issues we have to address.

Senator Wyden.

Senator WYDEN. Thank you, Mr. Chairman.

I want to stay with this enforcement question for the industry

and the consumer groups for just a moment, because I think all of

you understand, unless there is an enforcement system in place

that is seen as credible, it is really not on the level, that it is not

seen as something that addresses the concerns of the public and

families have a right to expect.

Tell us by way of continuing sort of the way I approached it in

the first round, what are the areas on enforcement where the proVerDate 11-MAY-2000 09:42 Jul 24, 2002 Jkt 000000 PO 00000 Frm 00040 Fmt 6633 Sfmt 6633 C:\DOCS\80170.TXT SAGING1 PsN: SAGING1
37

viders and the consumers seem to agree and what are the areas

where there is disagreement?

For example, take the inspection question, which is right at the

heart of an enforcement program that is credible. Walk us through

on enforcement, including inspections, where providers and consumers seem to agree and then where providers and consumers

seem to disagree. Larry, why do you not start that.

Mr. MINNIX. I will start by saying that I would say there is probably too little public oversight, and it varies by State, because of

what Rick Harris is saying. They do not have enough personnel.

The standards are, in many cases, loose. So that varies all over the

waterfront.

I would say from my standpoint, if my mother were to go into

an assisted living facility today, I am not sure I could feel comfortable with her being in certain types of assisted living facilities

in certain types of areas, so I do not think we are there yet, to be

perfectly honest about it.

Senator WYDEN. How about on the inspection question? Do providers and consumers seem to be making headway in terms of an

approach on inspections that both could support?

Mr. MINNIX. I would say that we are very close to agreeing on

definitions of care and services to be rendered and, therefore,

standards, and I will bet we can get to the point within the next

few months of how public accountability ought to be done.

I do not think that I could support a public accountability system

where the foxes just talk about the hen house. I think it has to be

broader consumer, ombudsman, some kind of formal State connection to that process to keep everybody honest because human nature is what it is. At the same time, I do not think you need the

kind of enforcement in assisted living that you have got in nursing

homes today, where you send in a team of five surveyors for 5 days

and look at everything going on.

We all know what has led to that and it is a process that is

where it is and it is going to be a while before anybody will trust

the nursing home—and we represent nursing homes—it is going to

be a while before the public trusts us enough to make that process

different. Here is a chance to do it right and have the right balance

of professional self-accountability along with public representation

on that. I think we have got a chance to do that.

Senator WYDEN. Ms. Love, enforcement and inspections.

Ms. LOVE. I think Larry Minnix hit it on the head. We are probably about that far apart, but that far apart is going to have a lot

of discussion, a lot of work to be done on it.

For example, if we look at the nursing home system as a model,

one of the things that comes out in the survey and inspection process are deficiencies. That whole concept is a very negative approach

to how a facility operates. We want to restructure and reframe

what that looks at and put it in a more positive framework.

But again, I think we will have a lot more of those answers in

a year.

Ms. LENHOFF. Senator, if I may add to that, as well—— Senator WYDEN. Sure.

Ms. LENHOFF. Although it is true that deficiencies may be unfortunate and may be very negative, sometimes they are necessary

38

and enforcement actions are necessary. One of the things I think

that we would be very concerned about in a system, whatever the

system of public accountability is going to be as we go forward on

assisted living, is to make sure that where we have inspections and

other public accountability that is working on the State level, that

we not lower the bar, that we be looking at what the States are

doing.

That is one of the reasons why it is so important that we have

Rick and the State regulators involved, so that we can have a good

sense. I think that is work that we really need to do, is look and

see what, not just what legislation is out there, but what is effective, what is working, what are we seeing specifically with enforcement, and I do not think we have really, unless some of the topic

groups that I have not been involved in have been looking at this,

I do not think that we have gotten there yet.

So I, for one, am very appreciative of your interest in this area.

I think it gives us something more to chew on.

The CHAIRMAN. If I could just jump in here, I think that one of

the things—I think information to consumers is incredibly important so they can make wise and informed decisions. People make

bad decisions when they do not have good information to base

those decisions on. People many times make choices in life about

utilization of services not knowing anything about the choices they

are making.

I think it is very important in this age of personal computers

that we ultimately have a system whereby when I am making a

decision on the assisted living facility for a loved one in the family

or parents or what have you that I can go to some site and look

up the record of a particular facility and find out, what is the track

record here? Is the facility financially secure? How many people

have had problems with this facility? That type of information allows me to say, look, this one is better than this one. I am going

to take A over B.

But if they do not have that information available anywhere,

then they do not have the information to make an accurate decision. As I have said before, we can find out more information on

the repair of a toaster oven in many cases than we can on hospitals, doctors, nursing homes, and things that are really truly important. I mean, you get on the Internet and you can find out from

Consumer Reports how much it costs to buy a toaster oven how

much it costs to fix it, how often it breaks, and what is the life expectancy of the product and all kinds of things about products. But

it is sometimes very difficult to find out that same type of information about providers of something as important as health care in

this country.

So I would hope that in looking at ways that you can give the

maximum amount of information to consumers, we find some way

of presenting these facilities so that consumers can look at them

through the computer system and find out what is there and what

is good and what is bad, knowing that nothing is perfect, just so

they can make their choice. Give them enough information so that

they can make informed choices.

Is that, Larry, possible?

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Mr. MINNIX. It is not only possible, Senator Breaux, it is essential because you can go to the Internet today and find out everything from electric razors to SUVs and we do not have any reliable

information that is an indicator of quality in health care. In fact,

I think we need to make as a part of this process some kind of

standardized consumer satisfaction survey.

There is no standardized consumer satisfaction survey in health

care today. We have been talking with CMS about that on the

nursing home side because there is no way to really know, unless

a facility does it itself, how consumers view the care and services

that they are receiving and I think this would be essential in assisted living.

Senator WYDEN. Can I just follow up on the chairman’s point, because this is potentially a real breakthrough. As all of you will recall, Tom Scully, when he was appointed CMS, went and gave what

he thought was going to be a very innocuous speech about basically

saying he was going to make quality information available that the

government already had on hand. He was not going to do anything

else but just go to his files and make it available. There was such

an uproar, a national uproar, that the proposal essentially was

pulled back on and they have been working on this information to

date.

So there would be a potential breakthrough here, if I understand

it right. There would be two areas. The first that you all would look

to is what the General Accounting Office talked about in the report

that we asked for, and that would be that the consumer protections

people would be entitled to would be set out in writing so that families would know in advance and that would be online, and both of

you said that would be available.

The second is, as I understood it, were you telling the chairman

that you are also interested in coming up with ways to make facility-specific information about quality available online, as well, because if that is going to be done by this coalition, that would be

a huge step forward in terms of health care in this country. If you

went the second step to make facility-specific information about

quality available and the two sides, the provider side and the consumer side, could agree on how to do it, that would be a very, very

significant development.

Mr. MINNIX. I can tell you that from the time you said it, we supported Administrator Scully’s view of beginning to learn to quantify

quality indicators and disclose to the public. Many of our members

have resident satisfaction surveys now. Some have encouraged all

of their member homes in the State to use it. It is very good information, very revealing information. I would be prepared to make

that recommendation. I obviously cannot speak for the whole

group, but we need to get to that point.

The CHAIRMAN. It is more than just a webpage for the provider

to put up there.

Mr. MINNIX. Sure.

The CHAIRMAN. They will have the pretty pictures and everything else, and that is all important, but, I mean, also what we are

talking about is really sort of a grading system that shows how

well this facility has done. That encourages better practices by the

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good operators and it sends a message to the bad operators that

maybe they should not be in this business.

I want to say that is what we are trying to do, I want to encourage this. I think all of us are saying that this is something that

is important for seniors. It is important for this country. I think it

is going to be a very strong and growing industry. I think anyone

providing services to seniors has a very bright future if they provide good services, because No. 1, you are going to have a lot more

seniors because of the baby boom generation and those seniors are

going to be living a lot longer. So this is a huge market out there,

and what we are just trying to say is, let us get it right from the

very beginning.

Mr. MINNIX. I think a consumer satisfaction survey, it does not

need to be something that somebody does on their own. It needs

to be independently validated and administered. But there is no

standardized tool for that that I know of anywhere in health care,

and when you think about it, that is a huge oversight on everyone’s

part.

The CHAIRMAN. Let me just say as we—go ahead.

Senator WYDEN. On disagreements, I understood this business

about two-thirds and one-third and all of this, which I think all of

us would acknowledge that that is the old kind of approach. The

idea is to just kind of pack your side. If——

The CHAIRMAN. That was the Medicare Commission’s standard.

[Laughter.]

Senator WYDEN. If we are going to do this, and I want you to

walk out of here knowing that we really are excited and interested

about the possibilities here. This has the potential to be the wave

of the future in terms of dealing with health care issues. Now, it

may not. It may be that you break now on a whole host of issues,

and we know that this is very significant work.

But to say that you are going to agree on consumer protections

and that there is going to be a coalition of consumers and providers

that agree on that and that you are going to try to work together

to make facility-specific information available online, that could be

a huge opportunity to empower families in this country in an area

that there is significant growth in.

This is significant in terms of its potential and I am curious how

you all deal with the disagreements that are inevitable as opposed

to just the two-thirds voted and one-third did not vote and all that

kind of thing. How is that going to work? Karen?

Ms. LOVE. This is probably one of the most challenging aspects

before us. We all come with our special interests and they do not

always line up, and that is where we find we did come to a twothirds/one-third majority, because we needed a system to go forward. Otherwise, we would be still talking about the definition of

assisted living, trust me. [Laughter.]

But I think the underlying value, and Dr. Minnix talked about

this early on, is that if we can sign off on the final report as a

group of organizations, that is significant. That means that we are

involved and we are invested in what we have just crafted.

We also have to have a process, though, that allows an organization to say we just cannot agree with a recommendation. We just

cannot go there. So it has got to be dynamic. It has got to have

41

enough flexibility built in so that we can do that and give people

an out, basically is what it is. But when we get to the point where

we are really stuck—— Senator WYDEN. Then call Senator Breaux.

Ms. LOVE. We will. [Laughter.]

But I think the key word here, if we were to walk away, and if

I can speak for my many wonderful colleagues in the room today,

is listening. This process has allowed us to listen to one another.

We can come thinking what we are thinking, but where we really

break down our differences is when we listen to what somebody

else has to say.

Mr. SHEEHY. Senator, may I just add to Karen’s?

The CHAIRMAN. Sure.

Mr. SHEEHY. I think that, and Senator Wyden, I think you made

a good point about how we determine what a consensus is, whether

it is a two-thirds or you have a one-third minority. I think the true

value of what comes out of the Assisted Living Workgroup will be

a consensus truly composed of consumers and State regulators and

providers. That will truly make the recommendations work at the

State level. So that is the consensus that has to emerge out of this

workgroup and that we are committed to.

The CHAIRMAN. I think that what we have here is a centrist coalition of providers of assisted living care for seniors, and I think

that is so important. I think that what Karen just said is really important.

You know, you never have a disagreement if you only listen to

yourself talking, and that is what we do far too much of in the Congress. I mean, we only listen to one side, and there is never a disagreement if you only listen to one side.

What we tried to accomplish here is to get all of the sides, at

least three, in this case, to listen to each other and to recognize

that others have valid points that need to be discussed and need

to be factored into the ultimate solution and that both sides have

to listen to each other in order to come up with something that is

workable, instead of gridlock and not getting anything done.

So I congratulate each and all of you and all of the other colleagues that are not represented today—many in the audience perhaps are—to thank them, because each one of you is intrinsically

involved and very important in this process working. Everybody

needs to be heard. Everybody’s suggestions need to be considered.

Hopefully, when we come back in April of next year, we will have

a package of recommendations from you that will be most helpful

to the Congress and ultimately helpful to the people that assisted

living is intended to provide quality assistance to, the American

public.

So we encourage you to continue to move forward. I am very

pleased with what we have seen so far and we will continue to

work with you. Thank you all.

[Whereupon, at 3:43 p.m., the committee was adjourned.]

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