[Senate Hearing 107-495]
[From the U.S. Government Publishing Office]



                                                        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







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                       SPECIAL COMMITTEE ON AGING

                  JOHN B. BREAUX, Louisiana, Chairman
HARRY REID, Nevada                   LARRY CRAIG, Idaho, Ranking Member
HERB KOHL, Wisconsin                 CONRAD BURNS, Montana
JAMES M. JEFFORDS, Vermont           RICHARD SHELBY, Alabama
RUSSELL D. FEINGOLD, Wisconsin       RICK SANTORUM, Pennsylvania
RON WYDEN, Oregon                    SUSAN COLLINS, Maine
BLANCHE L. LINCOLN, Arkansas         MIKE ENZI, Wyoming
EVAN BAYH, Indiana                   TIM HUTCHINSON, Arkansas
THOMAS R. CARPER, Delaware           PETER G. FITZGERALD, Illinois
DEBBIE STABENOW, Michigan            JOHN ENSIGN, Nevada
JEAN CARNAHAN, Missouri              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)

  










 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 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 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.

 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 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 
two-thirds 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, 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 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.
    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 assisted 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 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 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?
    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 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.
    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-fits-all 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 regulations, 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.
    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?
    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 providers 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 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?
    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 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 two-thirds/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 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.]
                            A P P E N D I X

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