[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
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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
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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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