[Senate Hearing 112-91]
[From the U.S. Government Publishing Office]
S. Hrg. 112-91
ASSISTED LIVING AT THE DAWN OF AMERICA'S ``AGE WAVE'': WHAT HAVE STATES
ACHIEVED AND HOW IS THE FEDERAL ROLE EVOLVING?
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ROUNDTABLE
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
MARCH 15, 2011
__________
Serial No. 112-2
Printed for the use of the Special Committee on Aging
Available via the World Wide Web: http://www.fdsys.gov
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SPECIAL COMMITTEE ON AGING
HERB KOHL, Wisconsin, Chairman
RON WYDEN, Oregon BOB CORKER, Tennessee
BILL NELSON, Florida SUSAN COLLINS, Maine
BOB CASEY, Pennsylvania ORRIN HATCH, Utah
CLAIRE McCASKILL, Missouri MARK KIRK III, Illnois
SHELDON WHITEHOUSE, Rhode Island JERRY MORAN, Kansas
MARK UDAL, Colorado RONALD H. JOHNSON, Wisconsin
MICHAEL BENNET, Colorado KELLY AYOTTE, New Hampshire
KRISTEN GILLIBRAND, New York RICHARD SHELBY, Alabama
JOE MANCHIN III, West Virginia LINDSEY GRAHAM, South Carolina
RICHARD BLUMENTHAL, Connecticut SAXBY CHAMBLISS, Georgia
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Debra Whitman, Majority Staff Director
Michael Bassett, Ranking Member Staff Director
CONTENTS
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Page
Opening Statement of Senator Bob Corker.......................... 1
PANEL OF WITNESSES
Susan Dentzer, editor-in-chief of Health Affairs................. 3
Josh Allen, a registered nurse and President of the American
Assisted Living Nurses Association............................. 4
Christy Allen, Assistant Commissioner for the Tennessee
Department of Health's Bureau of Health Licensure and
Regulation..................................................... 4
Eric Carlson, Directing Attorney for the National Senior Citizens
Law Center..................................................... 4
Krista Hughes, Director of the Arkansas Department of Human
Services Division of Aging and Adult Services.................. 4
Howie Groff, President and CEO of Tealwood Care Centers,
Immediate Past Chair, National Center for Assisted Living...... 4
Henry Claypool, Director of the Office on Disability at the
Department of Health and Human Services........................ 5
Julie Strauss, Interim Administrator for the Office of Licensing
and Quality of Care with the Seniors and People with
Disabilities Division in Oregon................................ 5
Patricia Will, Founder and CEO of Belmont Village Senior Living.. 5
Barbara Edwards, Director of the Disabled and Elderly Health
Programs Group with the Federal Medicaid Program at CMS........ 5
Kevin Coughlin, Director of the Bureau of Assisted Living in
Wisconsin...................................................... 5
Charley Reed, a Member of the AARP Board of Directors and Chair
of the AARP Insurance Trust.................................... 5
Larry Polivka, Executive Director of the Claude Pepper Center at
Florida State University....................................... 6
Irene Collins, Commissioner for the Alabama Department of Senior
Services....................................................... 6
Robert Jenkens, Director of the Green House Project.............. 6
Michael Vaughn, Acting Director of Asset Management and Lender
Relations, Office of Residential Healthcare Facilities, U.S.
Department of Housing and Urban Development.................... 6
Brenda Bacon, Vice Chair of Board of Directors of the Assisted
Living Federation of America and Preisdent and CEO of
Brandywine Senior Living....................................... 6
Barbara Lyons, Senior Vice President of the Henry J. Kaiser
Family Foundation and Director of the Kaiser Commission on
Medicaid and the Uninsured..................................... 7
Martha Roherty, Executive Director of the National Association of
States United for Aging and Disabilities....................... 7
APPENDIX
Participants' Biographies and Organization Information........... 52
Responses to Chairman and Ranking Member Questions............... 62
Statements Submitted for the Record:
Prepared Statement of Howie Groff, President and CEO of Tealwood
Care Centers, Immediate Past Chair, National Center for
Assisted Living................................................ 205
Prepared Statement of Michael Vaughn, Acting Director of Asset
Management and Lender Relations, Office of Residential
Healthcare Facilities, U.S. Department of Housing and Urban
Development.................................................... 224
Additional Statements Submitted for the Record:
Freddie Mac...................................................... 228
Charla S. Long, Creator and Director, TransformAging Program,
Lipscomb University............................................ 230
Long Term Care Community Coalition............................... 235
National Association of States United for Aging and Disabilities. 239
ASSISTED LIVING AT THE DAWN OF AMERICA'S ``AGE WAVE'': WHAT HAVE STATES
ACHIEVED AND HOW IS THE FEDERAL ROLE EVOLVING?
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TUESDAY, MARCH 15, 2011
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The roundtable was commenced at 1:01 p.m., in Room SH-216,
Hart Senate Office Building.
Present: Senators Kohl and Corker.
Moderator: Susan Dentzer, editor-in-chief of Health Affairs
OPENING STATEMENT OF SENATOR BOB CORKER
Senator Corker. My name is Bob Corker. I am a Senator from
Tennessee and used to be involved heavily in State government
as Commissioner of Finance.
I know Christy Allen is from Tennessee here, and I know
that States all across our country have really been updating
their State regulations as it relates to assisted living. All
of you are here today to have a great roundtable.
Senator Kohl is the chairman of the committee, and he is on
his way. And I know all we are doing is kicking this off. The
brain trust of people around this table are going to talk about
many of the issues dealing with assisted living.
But with 70 million folks coming along with the baby boom
generation that I am a part of, and with all of the issues that
I know we have to deal with, I am glad that you are here
together. Assisted living has provided a great private-pay
alternative for numbers of people. I know my parents have
participated to a degree in that. Many of yours have done the
same. Some of you may have done it yourself.
But the fact is that it is a great time for you all to be
here. Obviously, our budgets here are under tremendous strain.
I think you know that. And having an option like this that is
more affordable, that in many ways is mostly private pay, is
something that is very good. And I know that each of you is
going to be heavily involved in a great discussion for 3 hours.
I know a lot is going to be learned, and I welcome you here to
the Capitol.
I think Chairman Kohl, I saw out of the corner of my eye,
has just walked in. He is a great leader of the Aging
Committee. I know he will have a few words of welcome. But I
want to thank all of you who have come here to talk about this
very important issue at a very important time, and we certainly
look forward to what you have to say.
Thank you very much.
Thank you, Susan for moderating.
The Chairman. Hello, Bob.
Senator Corker. Hello, Chairman. I am going to step out and
give you this seat. You will have much wiser things to say.
The Chairman. Well, Bob Corker, you know, is a very
accomplished businessman from Tennessee, and I have done some
work in my life in the area of business also. So we have a lot
in common.
One way that I relate to people when they come to
Washington from all different parts of the country is I ask
them where they are from, and they say where they are from. And
I say, ``Well, do you shop at the Kohl's store in that city?''
[Laughter.]
And so, we start a beautiful relationship and a friendship.
I am from that family. Our family started the Kohl's stores way
back--well, we started them in 1962, we opened our first Kohl's
department store.
That was, by coincidence, the same year that Wal-Mart
opened their first store. They are much further ahead than we
are. The family does not own the business anymore, but as
matter of fact, my parents were immigrants from Europe. They
came to the United States and met and married around the Great
Depression. And in the late 1920s opened up a little grocery
store on the south side of Milwaukee no bigger than a closet.
And that was the beginning of the Kohl's stores. We were
first a supermarket business and then a department store
business.
I worked at the Kohl's stores for many years, and I had a
chance to be president for a while. And then the family decided
they wanted to do something else with their lives. So the
business got sold, and then I did one thing good, one thing
bad.
The good thing I did was run for the Senate. The bad thing
I did was buy a basketball team.
[Laughter.]
I bought the Milwaukee Bucks, and that has been a lot of
fun, too. But most of all, I am a public servant now, and I
very much appreciate what I am doing. I know how important it
is.
And when we sold the business, I wondered what I would do
with the rest of my life, but I certainly have found a calling
that I like and enjoy. And I like serving people. I like
dealing with problems and trying to find ways to improve the
quality of lives of people in my State, but also around the
country. So this has been a grand, grand experience for me.
And we are so happy that you are all here today because
assisted living, as you know, is a huge, huge part of American
life, and it is becoming bigger and bigger. I think that
assisted living in the years and decades to come is going to
become enormous in terms of the purpose it serves in our
country and how many people will be engaged in assisted living.
And we will need all the expertise and the good ideas and
thoughts that you have that we can possibly come up with in
seeing to it that assisted living performs its function in our
society in the best possible way, as it undoubtedly will have
to be done increasingly and can be done very well. As you know,
it can be a really nice way for people to grow older and live
lives that are fulfilling.
So it is well that you are here. And I know I have a
Wisconsin guy, Kevin Coughlin, here, and we appreciate that you
are here. We appreciate your role in assisted living in
Wisconsin. You do a great job, and I am familiar with all the
good things that you do in our State. Thank you so much for
being here.
And we have a great moderator. Thank you so much for your
work.
And I have a woman on my staff by the name of Anne
Montgomery, who you probably know. She is as good as they come.
When it comes to issues that are facing aging Americans,
including assisted living issues, she is a very, very bright
woman, works very hard, as you know, and she is always pushing
me to do better. I am never doing good enough, which is what
you want, I suppose. I suppose.
[Laughter.]
She is a good, good lady. And Deb Whitman is my head of the
Aging Committee for me, and she has done an outstanding job
also. So I am blessed that I work with them, and I am very
blessed that you are here today. And I wish you well.
On Tuesday, both parties have their weekly lunch. Senator
Corker has his, and I have mine. So I will be leaving. But
again, I thank you all for being here, and I wish you well.
Ms. Dentzer. Thank you very much, Senator Kohl.
And thanks to Senator Corker, who has now moved on to his
weekly luncheon.
Good afternoon, all of you. I am Susan Dentzer. I am the
editor-in-chief of Health Affairs and happily was engaged by
Anne and her colleagues to lead this roundtable discussion this
afternoon.
This is a roundtable, notwithstanding the configuration of
the table that you see is rectangular. But it is roundtable in
every sense of the word in that we really hope to engage all of
you actively in today's discussion.
As you see from the notes that we sent you on this meeting,
we will be discussing three topics: the quality and oversight
of assisted living, including, importantly, the area of
consumer disclosure. We will range into affordability and
reimbursement policies, including public financing through
housing tax credits and subsidies and private payment
supplementation. And then we will also spend some time on some
access and discharge issues.
We will be going until 4:00 p.m., and we have, as we say in
television, a ``hard out'' at 4:00 p.m. We have to leave the
room promptly at that point. So we are going to try to keep
each of these discussions on track at a little less than an
hour.
We will take a 5-minute break after the second hour of
conversation, and then we will resume for the last hour. And
then, as I say, we will end promptly at 4:00 p.m.
Just a couple of housekeeping details. When you speak
today, please use your microphones. You are going to have to
press this little button in front of you and make sure the red
light comes on. And then those who run the audio-visuals here
have asked me to make certain to tell you to log off at that
point so that the mike can be passed to the next speaker.
We are going to begin. Many of you, I think, are known to
many of you, but not all of you are known to all of you. So we
are going to try to move very swiftly through a round of
introductions so that we can rectify that.
What I would like to ask you to do is we will go around the
room. We will start this way. And if you could just introduce
yourself by name and title, and then maybe just a quick
sentence about what in particular--what for you is the burning
platform issue around assisted living that partly motivated you
to be here today.
And I am going to start with the family reunion we have up
here, the Allen twins. Actually, there is no relation, as I
understand it.
Mr. Josh Allen. Not that we know of.
Ms. Dentzer. Yes, right. None that you could trace, anyway.
So, Josh, why don't you begin?
Mr. Josh Allen. My name is Josh Allen. I am a registered
nurse, and I am here to represent the American Assisted Living
Nurses Association.
Having quite literally grown up in the industry, with the
family business and working as a corporate nurse for many
years, the quality of care within assisted living is near and
dear to my heart. I know that it can represent a wonderful
model of housing and care for many older adults.
Ms. Dentzer. Christy?
Ms. Christy Allen. My name is Christy Allen. I am the
Assistant Commissioner for the Tennessee Department of Health's
Bureau of Health Licensure and Regulation. So I am one of those
regulators.
Organized within my bureau are about 22 different licensing
boards, one of which is the board that licenses healthcare
facilities, such as assisted care living facilities. The issue,
first and foremost, for that board is to remain consistent with
the assisted care living philosophy of promoting independence
and individuality and aging in place while balancing and
ensuring proper compliance with quality of care and life safety
standards.
Mr. Carlson. My name is Eric Carlson. I am with the
National Senior Citizens Law Center. I have worked in long-term
care for 20 years.
My burning issue here is trying to articulate how a lot of
these issues look from a consumer point of view. I have
represented consumers for all of those times and have heard
their real-life problems, and I want to be able to explain
those to the best of my ability so that our public policy can
better accommodate what folks need.
Ms. Hughes. I am Krista Hughes, the director of the
Arkansas Department of Human Services Division of Aging and
Adult Services.
I am here today concerned about quality of care, quality of
life, and affordability issues for assisted living going
forward.
Mr. Groff. I am Howie Groff, President of Tealwood Care
Centers. I am here today representing the National Center for
Assisted Living as its past chair. The burning issue I think
people need to understand is that assisted living is a dynamic,
cost-effective, and resident-centered level of care that is
very important to the entire long term care spectrum.
[The prepared statement of Howie Groff appears in the
Appendix on page 205.]
Mr. Claypool. I am Henry Claypool, the director of the
Office on Disability at the Department of Health and Human
Services.
And I am here really today, hopefully, to learn something
from you all, as we really grapple with some of the needs of
younger people with disabilities and those that are older. The
mix is something that can be quite complex. A lot of the wisdom
in the room today can help inform some of our work at HHS.
Ms. Strauss. I am Julie Strauss. I am the interim
administrator for the Office of Licensing and Quality of Care
with the Seniors and People with Disabilities Division in
Oregon.
And to reiterate from the other States, quality of care,
quality of life issues continue to be where we are most
interested, as well as sustainable models for ensuring
independence and choice.
Ms. Will. I am Patricia Will. I am the founder and CEO of
Belmont Village Senior Living, which operates assisted living
communities in six States. I am here as the immediate past
chair of the American Seniors Housing Association.
We are principally interested in promoting quality,
independence, and choice in our industry. But more than
anything else, I am here today to collaborate with the various
players at the table to find better answers. We call our
industry ``a work in progress,'' where the answers come from
the people in this room.
Ms. Edwards. I am Barbara Edwards. I am the Director of the
Disabled and Elderly Health Programs Group with the Federal
Medicaid Program at CMS.
I am here because, obviously, Medicaid is an important
funder of long-term services and supports for many of frail
elderly, but also younger persons who live with disabilities in
our communities. We are very interested in learning how we can
best align Federal policy in the Medicaid program to help
States offer the kinds of options for individuals that promote
independence, choice, and assure that they have the opportunity
to live in their communities and fully participate.
Thank you.
Mr. Coughlin. Hi. I am Kevin Coughlin. I am the director of
the Bureau of Assisted Living in Wisconsin.
And I think what really I am interested in is really that
whole quality discussion. I think there is a way that we can
improve the quality in assisted living with a real
collaborative approach. There needs to be a lot of people
involved in this topic. So I am very interested to be here and
to hear all the experts and what they have to say.
Mr. Reed. My name is Charley Reed. I am from Washington
State. I am a member of the AARP Board of Directors, and I used
to be the director of the long-term care program in Washington
State. I was involved in developing that program.
And I am here representing consumer interests about
assisted living. We are very interested in developing a good,
high-quality service in the array of services for people to
choose from in the community. And so, we are very interested in
assisted living and whatever we can do to promote a high-
quality service.
Mr. Polivka. My name is Larry Polivka. I am director of the
Claude Pepper Center at Florida State University and a former
director, like Charley, of the State Unit on Aging in Florida
and have been long interested in assisted living and other
community residential and alternatives in the long-term care
system.
And there are many burning issues. In fact, most of them
are very much interrelated. But two that I have had in mind for
over 20 years is how do you make this option as available as
possible to low-income people, especially through the Medicaid
program and through the waivers and maybe other approaches
within Medicaid, and maintain a regulatory framework that
doesn't have the program blur into some kind of slightly less
regulated or costly nursing home program?
And I think that is something that has become increasingly
urgent as the program has expanded, including in the public
sector.
Ms. Collins. I am Irene Collins. I am the Commissioner for
the Alabama Department of Senior Services.
One of the things that I am very interested in hearing
today is about this continuum of care, long-term care, and the
role that assisted living actually plays in it and also a
determination actually of what assisted living is.
Mr. Jenkens. That is helpful.
[Laughter.]
I am Robert Jenkens with NCB Capital Impact. We are a D.C.-
based nonprofit who works with States and communities to
develop innovations serving people with low incomes. I am the
director of the Green House Project, which is working with many
of the States that you represent here today to create a small
home option for skilled nursing homes, as well as the former
director for the Coming Home program, which worked with nine
States to create affordable assisted living programs with the
Medicaid agency, housing finance agency, and regulatory
agencies.
My burning issue is creating more affordable assisted
living to serve people with the lowest incomes.
Mr. Vaughn. My name is Michael Vaughn. I am with the
Department of Housing and Urban Development, the Office of
Housing and, specifically, the Office of Healthcare Programs. I
am the director of asset management for the Office of
Residential Care Facilities.
[The prepared statement of Michael Vaughn appears in the
Appendix on page 224.]
And I am here to give some examples of how HUD funding
enables affordable assisted living solutions in many different
types and also to learn what we can do to work with the people
we have heard from, from Robert and Kevin and the State people,
and work with Barbara's organization to provide more solutions
to provide affordable assisted living. Thank you.
Ms. Bacon. Thank you. I am Brenda Bacon. I am Vice Chairman
of the Assisted Living Federation of America and the CEO of
Brandywine Senior Living. We own and operate assisted living
communities in five States, and I am also a former regulator.
So a lot of what I hear you talking about in terms of wanting
to work with the assisted living communities and to provide
access to seniors is something that very much resonates with
me.
I think assisted living is an excellent opportunity for
seniors to have choice about where to live when they can no
longer live at home or no longer want to live with their
families but want to still have the independence and the
quality of life of being at home.
Ms. Lyons. I am Barbara Lyons, a senior vice president with
the Kaiser Family Foundation and director of the Kaiser
Commission on Medicaid and the Uninsured. The commission has
tracked coverage and financing issues in the Medicaid program
over the past two decades.
So I am here because assisted living is part of the long-
term care continuum, and on the commission, we are interested
in how delivery of long-term care services is changing over
time and what that means for the people served by the program.
Ms. Roherty. Last, but not least. I am Martha Roherty, and
I am the executive director of NASUAD, and that is the
organization that represents the State agencies on aging and
disabilities.
And I am here for a couple of reasons, one of which is that
our agencies administer the Medicaid waiver program for the
most part. All of our State agencies also help to provide
options counseling for long-term services and supports for the
consumers, both public and private pay. And so, obviously,
assisted living is one of the most important options in that
long-term services and supports array of services.
And also because our agencies help to administer the
ombudsman program, and this is one of the confusing areas with
the long-term care ombudsman program.
Ms. Bacon. Susan.
Ms. Dentzer. Thank you, Brenda. And thanks to all of you.
As you can see, we have a great group assembled to deal with
these issues across various spectrums--from the consumer
standpoint, from the provider standpoint, from the regulator
standpoint, and those who also are looking at the big picture.
What we are going to do now is move into our first pod of
questions to discuss, if you will. And this is the general area
of quality and oversight. We are going to talk about what some
of the leading State models are with respect to consumer
disclosure standards.
We will talk a bit about what are--answering the question,
``What is assisted living?'' What are the essential services,
the core philosophy, the other characteristics of assisted
living that allow this combination of independence and privacy
and autonomy and choice?
We are going to talk about ways that States have developed
to balance the issue of quality of assisted living services
under Medicaid in particular, while not treating it differently
from other home and community-based services and the role of
State oversight.
We want to talk about whether there are any key physical
plant features that distinguish assisted living from
institutional nursing facility models. We would like to bring
up the topic of whether there should be a Federal floor in
terms of services that are offered by Medicaid-participated
assisted living facilities, and also should there be a Federal
ceiling, a maximum level of care that would distinguish
assisted living from independent living with home care
services?
And then, finally, a topic we would like to get to,
assuming there is time, is are there any minimum explicit or
implicit Federal expectations or requirements for State
oversight and monitoring of assisted living?
So, with that, what I would like to do now is turn to some
of our colleagues who come from State government to begin to
talk about some of this, starting with, for example, the
essential services, the core philosophy, and so on, answering
the question, ``What is the definition of assisted living in
your State?'' And then moving on to some of these other
issues--consumer disclosure standards, et cetera.
And so, Christy, Irene, Kevin, and Krista, as our
representatives from the States, why don't you begin? And
Christy, let us start with you.
Ms. Christy Allen. Sure. I will. We were talking
beforehand. In the State of Tennessee, our oversight of the
long-term care system is shared among several different
agencies. There is the Department of Health that is responsible
for the licensure and the annual survey process.
So my piece of it is almost purely regulatory. We do work
closely, though, with our Department of Finance and
Administration's TennCare Bureau, which is the Medicaid
administrator for the State.
Over the last couple of years, collectively, we have made
some great strides in making assisted care more available to
more people through the CHOICES program and then, last year,
through the implementation of a new licensure law for adult
care homes, which accept traumatic brain injury patients and
ventilator-dependent patients.
That is a very, very new program. We have received one
application. I think the idea is that over time it will grow,
and I know that Oregon was a model for us in connection with
that.
One critical area of the law that has helped get the board
to start thinking differently about long-term care was the
ability for a hospice patient to be admitted to and remain in
assisted living so long as the facility could properly care for
the resident's needs. And that sort of leads me into a
discussion about what makes assisted living philosophically
different from the other types of facilities that we regulate
in my department?
One of the key examples is in staffing requirements, where,
for nursing homes, there is a rigid staffing requirement set
out in the law and then repeated in the rules. For assisted
living, there need only be a responsible attendant, as defined
by the law, and whatever staff is appropriate to all of the
residents' level of need.
So that gives the facilities more flexibility in being able
to develop individualized plans of care, the idea being that
each resident will get the level of care that is appropriate to
him or her and allow him or her to age in place in that
facility. We have had a lot of discussions in the State about
that, the overall idea being to retain as much independence as
possible.
One thing that I looked at before I came up today was sort
of a comparison between different facility types and
enforcement. Nursing home enforcement, nearly every--I will
take that back. Many, many surveys result in several, several
violations. We don't see that as much with assisted care living
facilities.
I think during calendar year 2010, there were only a few
substantiated complaints. And of those, they resulted in under
$10,000 total civil penalties. So that tells me that the
regulations are probably appropriate to the type of facility
and that facilities are meeting those regulations.
I don't know if that is sort of what you were looking for,
but I feel like that is a good balance. There are still
applicable building and life safety standards. People still
need to be able to get out in case of a fire. But they aren't
as rigid as they are for some other facility types. So, you
know, somebody who is in assisted living can have assistance to
get out. They don't have to ambulate out on their own.
Ms. Dentzer. And do you want to take up some of the topics
about floors on services or ceilings on services? Is any of
that dealt with in State statute?
Ms. Christy Allen. That is not within any of our regulatory
piece of the statute. Ours is purely minimum standards for
licensure and minimum standards for quality of care.
The payment aspect of it happens over with our TennCare
oversight bureau. I am sorry, with our TennCare bureau, and it
is primarily through the CHOICES program. And they do set that,
I believe, in their rules every so often. They do look at that
every year. But you will have to come back to me on that one.
Ms. Dentzer. And in terms of the requirements for State
oversight and monitoring, are the inspections required? How
often? What is the----
Ms. Christy Allen. The inspections are required annually.
There is an annual licensure requirement. So like every other
facility that is licensed, an inspection will take place every
12 to 15 months. And any failure to comply with all of the
standards that are adopted results in the facility being asked
to submit a plan of correction within a certain period of time.
And if they don't, then there are penalties that can
potentially accrue.
What we find is that when notified prior to leaving the
facility of the deficiencies, they correct them. And again, I
think, you know, in nursing homes you find a lot of
deficiencies related to staffing ratios. You don't find that in
assisted living, so long as there is an appropriate level of
care.
Similarly, there is a lot of emphasis in the Tennessee
rules on the collaborative care plan. The physician working
with the assisted care living facility, if appropriate, with
the hospice provider, if that is involved as well. So that it
is a personalized care plan with the oversight of the
resident's physician.
Ms. Dentzer. Okay. And then just finally to clarify, you
mentioned the adult care homes.
Ms. Christy Allen. Yes.
Ms. Dentzer. That is a separate category, separate and
distinct from assisted living, even though it is going to look
and smell a lot like assisted living, it sounds like?
Ms. Christy Allen. It will look like it, but it is very
different. It is there are single-family residences in which
24-hour residential care, including assistance with activities
of daily living, is provided in a home-like environment to no
more than five elderly or disabled adults.
So it is almost like it is a combination of the Green House
model with an assisted living model, and it is a small home,
single-family residence. And I think the intent is that people
will care for people not related to them in a very small number
and create as much of a home-like environment as possible.
Again, that is very new. We have one pending application. I
look forward to seeing how that program grows over time.
Ms. Dentzer. Great. Okay. Well, thank you very much.
Let us move on to Krista, and give us a sense of the lay of
the land in Arkansas, Krista, if you would?
Ms. Hughes. In Arkansas, the licensure and regulatory
agency for the assisted living industry is the Office of Long-
Term Care, which is located within the Division of Medical
Services, or the Medicaid agency.
We in the Division of Aging and Adult Services administer
the Medicaid waiver, called Living Choices, and so we operate
with an interagency agreement with Medicaid, and we have to
stipulate how we ensure the quality of care, how we ensure
qualified providers, the plan of care, the annual level of care
determinations, and the financial accountability of the
providers. That is pretty much our role.
One of the things that--and just correct me if I get off
base from what you are wanting. When I started looking at the
regulations, you know, I actually managed some assisted living
properties in a former life. And so, you read them from
different perspectives, depending on what hat you are wearing,
and I had to brush up on this.
And what I noticed when I started looking at the
regulations, we have a different set of regulations for
residential care facilities, which were our 1970s version of
boarding care homes and the preemptive entity for what is now
assisted living. But we still have regulations governing
residential care facilities. There is a moratorium on the
development of any residential care facilities in Arkansas,
going forward.
Then we also have two different levels of care for assisted
living in our State. We have Assisted Living Level I. That has
its own separate regulations. And then we have Assisted Living
Level II, which does bring in nursing services into the
assisted living facility. That has a separate set of
regulations.
So I didn't bring my regulations. There are a lot of them.
But what I did notice in reading them is that, philosophically,
the assisted living regulations, it just has totally different
language. It speaks to self-direction, the personal decision-
making authority. It speaks to the configuration of the
apartment being such that it maximizes one's choice and chance
for independent living.
I mean just the entire set, throughout the entire set of
the regulations, the wordage is just so utterly different. So
that is the philosophy. I am trying to go through my notes. So
that is the philosophy.
Ms. Dentzer. No, very helpful.
Ms. Hughes. In terms of core services, we do have core
services stipulated, and that includes 24-hour staff;
assistance with obtaining emergency care; assistance with
social, recreational, and other services; assistance with
obtaining transportation; linen service; and three meals a day.
So that is our base or the floor. In addition to that,
facilities can provide other services on a negotiated basis
with an individual and their families.
We, like Tennessee, have a flexible staffing pattern within
the regulations, but we do have a floor on that as well. So,
regardless, we do say ``staff to meet your needs,'' but we also
do have a floor for the staffing as well.
Arkansas does, by law, require a disclosure statement, and
the disclosure statement has to speak to--is that me? I am
going to try that.
Okay. The disclosure speaks to that you have to show that
you are licensed. You have to show what services you provide.
All of this is in advance to any level of move-in. The services
have to stipulate, the ones that I just mentioned, the core
services and any others that can be negotiated. It speaks to
staffing, what is required in the regulations what you have in
your facility.
It also stipulates that you have to tell whether or not
your staff can sleep on the premise, which I found interesting.
And it then speaks to physical plant features of your building,
whether or not you are sprinkled. If so, to what degree. Do you
have smoke detectors? Where are they? Do you have an emergency
evacuation plan, and what is it?
So that is primarily for general facilities. And then on
top of that, we have specialty care units, Alzheimer's
specialty care units, and there is a separate disclosure
statement for those. And it goes more, the very first one, in
fact, stipulates you have to discuss your philosophy of care
and the services, your therapeutic interventions, the level of
training that your staff have. You know, just several different
things in addition to the regular disclosure statement.
Ms. Dentzer. Let us move to Kevin. Sorry. Violating my own
rule here. I think you heard that. So, Kevin, please take it
away.
Mr. Coughlin. All right. Thanks, Susan.
You know, I think, starting out with the essentials of
assisted living, in our State, we don't have the term
``assisted living'' in any of our regulations, but we have
three models that sort of fall under that umbrella. I am mostly
going to talk about the residential care apartment complex
because that is one of our newest models that came more out of
some of the new way of thinking of assisted living.
But I think some of the essentials are many things that
Krista talked about with self-direction, independence,
accessibility, home-like. The provisions of care need to
include personal care, supportive care, and nursing care. And
there is within the regulations the ability to age in place.
And I think with assisted living, it is important that we
don't sort of force all assisted living to have to do certain
things. I think the beauty of assisted living is communities
can sort of define the type of care that they can provide and
can become experts in that area. And then they don't get
themselves into problems with not being able to provide some of
the provisions that do take place with aging.
So there is that ability to have both aging in place or to
have certain things that could happen that could potentially
lead to a discharge. And I think that is where that disclosure
statement is very important, that when that does occur that we
do have good disclosure statements.
Wisconsin does not have a regulation for disclosure
statements, but it is captured in the admission agreements. A
lot of that information does have to be disclosed in those
admission agreements.
And I think one of the things I do want to talk about is
sort of that quality oversight. And what we have really focused
on in Wisconsin is that all agencies that are involved with
assisted living have a role in quality, and it is not just the
regulatory agency. But with regulations, we have tried to
develop a new model that looks at both regulatory oversight,
along with providing technical assistance.
What we have found is some of our surveyors are some of the
best experts in this field, and they can offer a lot to the
assisted living communities. So we have integrated technical
assistance as part of our survey process, and we have also done
a ``one size does not fit all'' in this setting. And we have
had a less-intensive survey process for those communities that
really have shown compliance, good compliance history with us.
We go back on consecutive surveys and they are still in good
compliance, they can reach sort of a less-restrictive
oversight.
And what that has allowed us to do is really focus on some
of the communities in our State that aren't doing as well, and
we have been able to really shift those resources and also
using very creative enforcement action sanctions that can help
a facility fix their systems to sustain compliance or a very
progressive enforcement action that could lead to these people
not doing this business because if they continue to harm our
citizens, they shouldn't be in this field.
And I think sort of with that process, we have also done a
lot with collaboration, sharing our information with lots of
different stakeholders. We have a very good relationship with
the Medicaid program. They get all of our inspection reports.
And what we have found is that has also built quality, where
they are no longer publicly funding individuals in a facility
that does not have good compliance history.
That, as well as our advocacy groups. We have a very strong
relationship with our ombudsman program. Wisconsin ombudsmen
have been in assisted living for a very long time, and working
together with the ombudsman program, again, has allowed us to
help improve the overall quality. The ombudsmen get in and do a
lot of training, providing technical assistance to the
industry.
And then also collaboration with our assisted living
associations and the communities, sort of getting this all on
the same page. I think as we have developed respectful
relationships, we have been able to tackle some very difficult
issues that have come down in this field. The whole thing about
how much nursing should be in assisted living, how can we get
better standards of practice implemented.
And I think the biggest part is really trying to get
quality, the assisted living communities themselves to do real,
internal quality assurance, quality improvement within their
own organization because that is where it is going to really
happen. And if we can, as a State regulatory agent, be a change
agent in that area, we can help do that.
So that is kind of one of the big areas that I think has
helped in Wisconsin is that collaboration across all spectrums.
And I just want to kind of end with a statistic that we have
had 31 consecutive years of growth in assisted living, and in
the last 8 years, we have had a 50 percent increase in the
number of beds in assisted living.
And at the same time, we have had a 40 percent decrease in
the number of the incidents of complaints. And for that to sort
of happen, actually, and it happened during a time where we
introduced the 1-800 number and an online complaint number. So,
for that to happen, I think it is showing that there is a real
positive movement toward improved quality in our State.
Ms. Collins. I am left handed. There we go.
In Alabama, we have the regulatory agency is our State
health department. These are their regulations, which they are
currently in the process of updating. So we are excited about
that. Our assisted living association is certainly working with
them, along with others that are very interested in assisted
living.
We do not have any of our Medicaid dollars paying for our
assisted living beds. We have two types of assisted living, if
you will. One is just a standard assisted living, which can be
any array of situations, and that is all of these are licensed.
But the SCALF assisted living, which is specialty care, is one
that has to come through and be approved through our
Certificate of Need Board to get beds in that. Both of those
are under the purview of the health department.
The surveys that are conducted through these different
assisted living groups are done by nurses through the health
department. However, like Kevin and others have said, we also
have in our agency the ombudsman program, which is a huge role
in overseeing. They are in there at least twice a year, in all
of the facilities that we have across the State.
We have about 10,000 assisted living beds in our State.
They are, as I said earlier, different types of structures. So
there are definite rules and regulations about the way the
facility has to operate, about the staff that operates, the
administration that takes place. And again, as has been
mentioned earlier, we are very much concerned about the
individual's rights and the ability to have a continuum of care
in the manner in which they choose.
So this is going to be something that I think we will
probably hear today quite a bit from all of the agencies that
are represented.
Ms. Dentzer. Well, all of you have struck--I will get this
right eventually here. All of you have struck some common
themes about the independence focus, the quality of life focus
that you want to preserve intact in assisted living. And what I
would like to do is move to a discussion of how that squares
with whether----
Oh, I am sorry. Julie, my apologies. Thank you. I have been
prompted. I didn't mean to cut off representation from Oregon.
So, please.
Ms. Strauss. That is okay. So, Oregon, we are very, very
proud of the fact we had the first home- and community-based
waiver. In Oregon, we currently serve 23,000 people in the
waiver. Only 4,700 people in nursing facilities. So we have a
very exciting community-based care system.
As far as you asked the characteristics of an assisted
living facility versus another community-based setting, our
assisted living facilities are required to be at least an
economy apartment. They have to have their own bathroom. They
have to have a kitchenette. We do have a floor of services that
are required to be provided. We do not have a ceiling.
We have a uniform disclosure statement that we use. It is a
standardized form by the agency, and then we have a specific
set of criteria that must also be in the resident agreement,
which includes the move-out protocols, the services that are
available, as well as any fees, deposits, and it has to list
the resident rights, as we have in our rules with regard to the
bill of rights for residents.
That being said, right now in assisted living facilities in
Oregon, 40 percent of the residents are Medicaid eligible. So
we feel very strongly about the issue of access to independent
and high-quality, high-choice facilities.
We do both a policy--in the area that I work, we do both
the policy. We do the Medicaid contract. And we do the
surveying. And so, we are in the facilities every 24 months,
and we use a regular oversight process, as stipulated. And we
work together with the industry and the advocates to come up
with the guidelines and the principles for the monitoring of
that facility.
Like Wisconsin, we see partnerships in the ombudsman's
office, as well as in the Medicaid case managers at the local
level. Everyone has a responsibility to have eyes and ears and
everything else to help make sure that quality is happening.
In addition to that, I wanted to mention one of the reasons
that we believe that Oregon is very, very successful with our
community-based care is a progressive nurse delegation policy
that we have that enables our facilities to better serve
clients with lay staff who have oversight and delegation by a
trained RN and the documentation as such.
Ms. Dentzer. Say a little bit more about what exactly that
is and what it means.
Ms. Strauss. What nurse delegation is? Nurse delegation is
by State law, we have stipulated what services that are
regularly administered by a registered nurse, can be delegated
to a non-RN. So the nurse explains the task and then monitors
as an individual performs the task to ensure that a resident is
safe. And then the nurse goes in and regularly checks to ensure
that the delegation is appropriate and occurring and reviewing
change of condition.
We do have other forms of what might be considered assisted
living, but in Oregon, we stipulate in our rules what
constitutes an assisted living facility different than our
residential care facilities, which are a congregate living,
that they exist under the same rules. And I think that is it.
Ms. Dentzer. Okay. Great. Well, thank you, again, all of
you.
As I was saying, there are obviously some points of
convergence here in terms of the desire to create choice and
sense of autonomy, et cetera. There are also some differences
among the various States in terms of who does the regulating,
what the degree of regulation is, et cetera.
I want to just move to the question of how this intersects
with Federal expectations or requirements. Are there any
minimum explicit or implicit Federal expectations or
requirements for State oversight and monitoring of assisted
living? Should there be?
How does this--if we were to think about this going
forward, how would this be structured, et cetera? And maybe
Barbara and perhaps Henry would want to speak to some of that
with respect to older populations as well as younger disabled
populations?
Ms. Edwards. Well, here is where it starts to get even more
complicated. We have already heard different approaches, and I
don't know that we know that every State even licenses assisted
living specifically. So lots of difference at the State level.
And one of the interesting elements now is that Medicaid is
a fairly important funder of services for individuals in the
community, doesn't have an assisted living service, doesn't
define assisted living, doesn't define what an assisted living
facility is, doesn't define a group home, doesn't define--that
is not the way the Medicaid program is structured.
So from the Medicaid program perspective, what we have are
services that can be made available to individuals by States
through the State plan or through waiver programs that offer
alternatives to institutions. So we have institutions that are
defined, and those are the places where Medicaid services can
be provided, including room and board. And then over the years,
Congress has made more options for States to offer people with
alternatives to institutional services for long-term services
and supports, but there is not a definition of those settings
and those issues.
What the law tends to refer to is home and community based
or noninstitutional. And within that, then there are a very
broad array of services that can be offered by States to
individuals who meet certain need levels that are defined by
the State, and those services can be provided.
So trying to think how to be helpful on this, the issue we
tend to wrestle with in our policy tends to be more about what
is home and community based? What are the characteristics of a
home- and community-based housing and residential option versus
what is institutional?
And there is one place in our guidance where we have
specifically referenced assisted living services. That is in
our 1915(c) waiver application and guidance. And in that case,
what we are really describing there is a bundle of services
that could be delivered to individuals who might be residing in
a particular type of facility. And in the guidance, the
facility is referred to as--actually isn't really described. It
is more the bundle of services that are available to that
individual in that setting.
We ask States that, if the settings are larger facilities,
that they describe how they are going to assure home and
community--that, in fact, there are home and community
characteristics for that individual's experience in that
residence. So that makes this a difficult, to some extent, an
issue or makes it flexible because States can define how they
regulate their housing. And then the Medicaid services can fit
into those settings in a fairly flexible set of ways.
So we have actually made more comment in guidance with
regard to the characteristics of the setting than we have not
by name, but just the characteristics of what is home and
community based and what we are looking and what we perhaps
would not be looking for. So if that is helpful, I can share
some of that. But we don't come at it from the same
perspective.
Ms. Dentzer. For all intents and purposes, assisted living
is home or community based for----
Ms. Edwards. Services, there are some services in Medicaid
that are to be delivered to individuals who are living in a
home- and community-based setting. So I would put it this way.
For assisted living to qualify as a place in which those
services could be reimbursed by Medicaid, that assisted living
facility would have to have the characteristics of home and
community.
So that is what becomes important is what is the experience
of care for the individual who is living there? Is it a home-
and community-based setting, or is it more of an institutional
setting? And for us, home and community based means person
centered rather than provider centered. It means that it is
home-like, and we have sometimes offered examples of what we
think home-like means.
Access to privacy, a lockable apartment, access to
facilities that are normally available in a home--a kitchen,
bathroom, eating--that people have the ability to come and go,
that they have the ability to participate in community
activities in an unscheduled way. In other words, that the
provider doesn't decide when individuals will go into the
community, but individuals can have some choice in that, in
those decisions, and that in an assisted living we would assume
then there might be some assistance with those choices, but
that individuals have a significant amount of ability to direct
their own life and their experience of their community
integration.
So we are interested in those characteristics of the home.
And on the basis of that, Medicaid services to support that
individual can be made available by the State.
Ms. Dentzer. Has there ever been an instance where an
assisted living facility was judged to be institutional, and
therefore, services to a person in that setting could not be
provided, to your knowledge?
Ms. Edwards. I am not sure I can speak to that directly.
Again, States identify the housing options that are made
available to individuals, and we ask that they help us
understand how they assure home and community nature of those
settings.
There are certainly some cases where we might not think a
setting looks like it is home and community based. But we, at
this point, don't have regulation that defines what those look
like, and it certainly isn't done by the name of the
institution or the facility. Again, we don't define what an
assisted living facility is, nor a group home specifically. So,
instead, we are looking at the characteristics.
We are, and I want to sort of stress that we are in a
regulatory development process at CMCS with regard to a variety
of Affordable Care Act provisions that expand State options
with regard to home- and community-based services. And so, I
can't comment a lot about what we are thinking about in terms
of guidance.
We have issued a new set of proposed regulations around
community first choice. That at least begins to lay out some
proposed regulations that might have some impact, and again, we
are in the process of inviting comment from all interested
parties. And so, again, I can't comment a lot on how we are
developing policy. I can talk a little bit about the dialogue
we have had with stakeholders in the past through advance
notice of proposed rulemaking that was issued in 2009 and some
of the comment and dialogue we have had around that.
So this is an area of great interest to us and great
interest to stakeholders, to States, to individuals, to
providers, and we really do welcome--we have had a rich
dialogue with individuals about what it means to be home and
community based. What we have learned is that there is not
consensus about what that means, that sometimes preferences
vary on the basis of age.
Sometimes preferences vary even from community to community
within individuals with disability. We may hear sort of a
strong view from individuals who represent or are people with
cognitive or with developmental disabilities. We hear different
things from people who represent those who are elderly. We hear
different things from individuals who are younger adults with
physical disabilities.
And the challenge for Medicaid is to develop policy that
assures access to services across all of those populations in a
way that is reasonable and we think reflects the intent of the
law.
Ms. Dentzer. Great. Thank you.
Henry.
Mr. Claypool. Well, Barbara has covered quite a bit of
ground there. So maybe I will pick a few points to underscore
how we think about assisted living and the tensions that the
Medicaid program confronts when it is asked to finance these
services.
I offer a disability perspective. Home- and community-based
services arguably came out of the need to have an alternative
to an institutional setting for people, and many of them were
people with disabilities. And perhaps most notable in that
group is individuals with developmental disabilities and their
need to move from large institutional settings to home- and
community-based settings that serve people with developmental
and intellectual disabilities.
And that movement, I think, has shown that the level of
care, the types of needs that individuals have, and our ability
to serve them in the community can vary, from individual's
families choices and preferences. But we hear from individuals
with developmental disabilities and their advocates that we
should continue this movement toward smaller, more integrated
settings to serve individuals with developmental and
intellectual disabilities.
The same can be said for individuals with physical
disabilities that, some unfortunately, may end up in an
institutional setting like a nursing home when there is a lack
of service or an unavailability of housing, which results in
their institutionalization.
And we hear often from the advocates and some of the
service providers that there is a need to move away from
providing nursing home services, but that the home- and
community-based services need to have specific characteristics.
There is a strong preference for individualized community-based
arrangement.
People with disabilities that are younger or on a different
trajectory in their life's needs, and they do not want to be
institutionalized, maximize their independence by living in a
community-based setting where they will have full access to
community supports, et cetera.
And then, on the other end, I see an aging population that
is losing some function perhaps and interested in building a
support system that will allow them to maintain their
independence as long as possible and forestall what has been
assumed in our society that one goes to a nursing home when
your needs are such.
And these two are perhaps not in conflict, but they need to
be reconciled. And the place that they end up being reconciled
oftentimes is in Medicaid policy, and it creates a real
challenge for the agency to align its policies in such a way
that accommodates all the interests, preferences, and choices
of these individuals.
It is interesting, though, when I hear the States going
around and talking about the kind of the values that they hold
around their assisted living systems that they articulate many
of the things, obviously, that we hear from home- and
community-based services advocates. But I would offer up the
concept of a person-centered planning process. I don't know if
it exists in many of the States already.
But this concept that Barb has mentioned does allow the
individual to articulate their needs and talk about what their
expectations are for the future. And it is, I think, a very
empowering model that really does help move towards things like
self-direction or greater independence on the part of the
individual.
So there is much more that I think we can touch on, but I
will let Susan get back to addressing some of the issues at
hand.
Ms. Dentzer. Thank you, Henry, for that very helpful
perspective.
Believe it or not, we have already exhausted our first
hour. But I don't want to let this go without asking Barbara
Lyons just perhaps to offer some comments from the perspective
of the Kaiser Commission and your own expert perspective.
As you look across the States and think about Federal
policy, Medicaid policy, obviously, a greater shift toward
home- and community-based services overall, and particularly in
the context of the Affordable Care Act, what rises to the
surface for you as issues?
Ms. Lyons. Yes, thanks, Susan.
Let me just start by saying what I was struck by, as we
were going around with the States, is again the variation that
exists out there across the States and within the Medicaid
program. There is always just a tremendous amount of variation.
As we have tracked long-term care services and supports,
particularly over the past decade, I think it is important to
at least acknowledge the really significant growth that we have
seen in home- and community-based services. It has been, you
know, pretty phenomenal over this past decade. That is one of
the most fastest-growing parts of the Medicaid program if we
look over the last decade.
Whereas, on the institutional side, we have seen virtually
no growth over the last decade. It has remained very flat. So I
think that that kind of progress is important and moving in the
direction that both folks under 65 and over 65 want to go in,
in terms of where they are served and able to live and
function. So that is pretty important.
When we look at the data and break it apart a little bit,
we do see a difference between the under 65 population and the
seniors in that, as Henry described, the under 65 population
making that transition much more readily than what we see among
seniors. And to some extent, that reflects the supports that
are out there for the under 65 population, for seniors who are
aging, and they often don't have the supports in the community.
And as we have looked at different home- and community-
based waivers and programs that are out there, the two things
that just really stick out for us in terms of enabling people
to stay in the community are, number one, housing. Just
couldn't be more critical for folks. As we looked at Money
Follows the Person programs, that housing and ability to
connect the Medicaid agency with the housing agencies at the
local level is just absolutely pivotal.
And then the second factor that is really critical are the
workers. And so, I was interested in Julie's comments about the
nurse delegation because having the workers to assist people
when they need it in the community is, again, just another
really, really critical aspect for moving forward.
The ACA does present opportunities for States to continue
to move in this direction. But I would be remiss if I didn't
say that right now there is this huge budget crisis at the
State level, which has, I would say, dampened some of the
progress that we have seen moving forward over the past year,
as States have wrestled with the economic impact of the
recession.
Still, I think the goal is to move forward and keep moving
in the direction of making more community-based services
available going forward. And so, as States and the Federal
Government deal with this crisis, we would hope not to lose
ground in the interim.
So I will stop there. Thank you.
Ms. Dentzer. Well, thank you all, and you can begin to see
how difficult it is to wade deeply into this topic in a short
time frame.
We are going to move to the next area of discussion,
though, now, which is essentially dealing with the question of
the supply of assisted living in the sense that do we have any
estimate of a national demand for affordable assisted living?
Is there any Federal program that calculates this, or have we
begun to even think through what the role of affordable
assisted living broadly should be in the context of not just
the move to home- and community-based services, but the aging
of the baby boom, as has been mentioned.
What are the primary sources of Federal funding that can be
used for the development of affordable assisted living? Grants,
tax credits, et cetera. Does the Federal Government, in fact,
have more plans to develop more assisted living for residents
who are living in subsidized housing?
So those are the kinds of questions we have to verge into
here. And then, of course, not just dealing with the Federal,
how are the States approaching the challenge of developing
affordable assisted living?
So, with that, Michael Vaughn, why don't you talk a bit
about HUD's role in all of this?
Mr. Vaughn. Well, HUD has two main areas where we intersect
with this sector. The first is in our own inventory of public,
Section 8, Section 202 affordable housing. And in that area, we
have been working to expand the range of home and community
services. We have been successful in broadening the options
available under the Section 202 program.
And I said I would give some examples. I wanted to give one
in that aspect. In Columbus, Ohio, we had a 202 project called
InCare Suites. It was a $3.5 million award of a grant for a 39-
unit independent living community. The residents, 69 percent of
the residents were Medicaid eligible. And of the 39 households,
some were active and independent. Ten percent had actually left
a nursing home, and quite a few were receiving intensive
Medicaid home- and community-based services.
So we are trying to broaden the newer aspects of assisted
living, as Barbara mentioned and Henry mentioned, to our
overall inventory.
The second main area where we are involved is more in the
construction of traditional--and financing of traditional
assisted living facilities that are affordable. And I think in
introducing, you said, well, what is the Federal Government
doing, and what are the States doing? It has all got to be
together, it doesn't happen at all is, I think, what we have
found.
We have low income tax credits, obviously, from the
Department of the Treasury. They are an important aspect of all
of these. Home grants from HUD that most of these go toward
traditional affordable housing, family affordable housing. But
also some of them are used for elderly, which can have these
home- and community-based services, or for pure assisted
living.
Our Section 202 program, again, is a program for the
elderly. Section 811 for people with disabilities as well.
Approximately $350 million annually from HUD. And of course,
that program has faced budget pressures. These can be combined
with other programs from the State.
The office I am in oversees the insurance, mortgage
insurance under the Section 232 program. We have insured $17.1
billion in residential care facilities. Two-thirds of them are
nursing homes. Approximately $5 billion of that is new
facilities.
We have had a tremendous increase in demand for the
program. We have gone from about 200 or so applications a year
to over 700. We have had a lot of trouble keeping up with it,
but we have recently made the decision to prioritize projects
with tax credits associated.
I don't know if a lot of people know this, but HUD has a
Section 542 risk-sharing program that is administered primarily
by the State housing finance agencies. We partner with them,
and we take a 50/50 risk. A number of the projects done under
that program have been--37 of them--for affordable assisted
living facilities.
Public housing authorities in HUD, they are our partners,
and they are extremely creative in using the different
sources--Medicaid waiver, the other home funds, et cetera--for
either adapting their elderly projects or doing new from
scratch assisted living projects. And there is even a program
under the Federal Home Loan Bank Board, which I have seen. I
was a HOPE VI grants manager, and I would see these lists of
the sources.
And Robert has been a consultant for putting these things
together, and you usually have to have four or five before it
works. But the Medicaid waiver is an important element going
forward, as can be public housing operating subsidies, as can
be Section 8 funds or the vouchers following the people, as
Barbara mentioned.
So there is a panoply of things that can come from HUD, and
creative people have put them together with a great deal of
success.
Ms. Dentzer. To your knowledge, does HUD have an estimate
of national need for affordable assisted living?
Mr. Vaughn. Well, I was looking at some of the material
from other people on this panel, people from AHFA, et cetera,
and one of the statistics was that 25 percent of the present
residents of nursing homes could be taken care of in a lower-
acuity setting. And since there are about 1.5 million residents
in skilled nursing facilities now, that would be 375,000
people. Or if you think of a traditional assisted living
facility of about 100 units, that would be 375,000 people.
That actually ties in a little bit, if you want to
extrapolate from the other end. I am one of these people that,
if you work something statistically from two different
directions and you come up with the same answer, it might be
right.
Illinois has a program, a Medicaid waiver program where
they have taken a lot of people out of nursing homes, and they
have financed a total of 124 facilities. Well, if Illinois is 3
percent of the national population, which it is about, that
would get you about to 3,700 facilities nationwide.
And there was one other estimate that we noted, the Center
for Excellence in Assisted Living projected 67,000 units needed
over the next 15 years. So that would be about double what we
are talking about as immediate need. So those numbers aren't--
you know, they kind of jive in a way.
So that is not an official estimate. That is looking at
some statistics.
Ms. Dentzer. Well, from our industry members present, what
is your sense about, first of all, that question in particular,
your sense of estimated national need for affordable assisted
living? And then what about the availability of funding and
financing through various sources to actually build those
facilities?
I know the current environment is, we hope, an anomalous
environment. But it better be, going forward, right, if we are
going to meet this national demand.
Brenda, do you have thoughts?
Ms. Bacon. Well, there are approximately a million people
in assisted living today, and about 120,000 of those are
covered under the Medicaid waiver. Proudly in our Brandywine
communities, we have 305 people that live there under the
Medicaid waiver, and I think that the numbers that Michael
reviewed are really important numbers for us.
Certainly, for us as an economy, the American taxpayer to
think about because nursing home care, as we all know, is far
more expensive and a far less advantageous environment for the
kind of individuality and care that we are talking about. And I
was interested to hear Barbara say that preferences vary.
And in a nursing home, you don't have the ability to have
your preferences vary. It is very expensive institutionalized
care. But a lot of people need to be there, whether they need
to be there or not for their needs, but because of the funding
source. That is the only way they can access Medicaid if they
can't afford to be a private payer.
So we believe that were there better access to community-
based funding and other sorts of funding to help people afford
assisted living, it would not only save the Medicaid program a
lot of money and, therefore, the taxpayers a lot of money, but
provide a better way of life for individual choices and people
making decisions about how they want to spend their life.
Ms. Dentzer. So, in your view, what does that require then?
More Federal investment in these affordable housing options or
what precisely?
Ms. Bacon. It does require more investment, something that
I know we don't have a lot of these days. Certainly whether you
are speaking of the elderly or the developmentally disabled
communities, the access to that kind of care in the long run,
as we all know, saves us money.
So the more we can invest in that, the better off we are
going to be in the long run. I think the short run is our
challenge, of how do you get those dollars where they need to
be to help us out as we go forward? Particularly with the
growing wave of elderly and particularly with the growing wave
of Alzheimer's development, which is just an offshoot of the
population aging.
If we can keep people with Alzheimer's in communities where
they are receiving a lot of care and as well as care for their
spirit and keeping them as active as they can be, rather than
putting them in an institution, their lives, their families'
lives are so much better, and we save a lot of money.
So the assisted living community would very much like to
see access expanded for assisted living for all of our elderly
and for disabled populations in the communities that can best
meet their needs. We are not suggesting everybody can be just
thrown into one community, and it all works. It really needs to
be tailored to meet the needs of the population it is trying to
serve.
Ms. Dentzer. How do you see this, Howie Groff?
Mr. Groff. I want to preface this just so everybody
understands. We operate in four States. We operate nursing
homes and assisted livings. But the assisted living residences
we operate go in communities from 500 to 500,000, and there are
varying differences.
And as Michael talked about, there are a number of Federal
programs that are available to us, but it is very difficult.
Let me just start with HUD, wonderful program, under Section
232, but it is arguably an 18-month process. I understand they
have been inundated because of the economy.
Fannie Mae and Freddie Mac are Federal lending institutions
that we could utilize, but they don't finance new construction.
So that is not even available to us. A lot of communities can
use USDA financing, but they require a guarantee of some sort.
And the question is with the state of the municipalities today,
do they have the wherewithal to do that?
We could look at municipal bonds to develop affordable
assisted living. Right now, as we see in the State of Illinois,
they have been trying to finance their way out of their debt.
It is kind of leading the people to say, wait a minute, this
whole rating system needs to be put aside.
Tax increment financing is available. There are communities
out there that are very cooperative with that, but there are
also communities that refuse to do that.
Providers want to go to state housing authorities. Coming
from Minnesota, we have the Minnesota Housing Finance Agency.
They could be an FHA lending enabler, correct? They have chosen
not to because they see that in conflict with other low-income
housing. So they have never done elderly buildings. That is a
choice they have made.
The last thing I would suggest is as we look at affordable
assisted living, we also need to look at going back to what
Barbara said. Right now, Medicaid pays for services only. So
there is this whole housing component. ``Where am I going to
live? How am I going to get fed? Who is going to keep the
lights on for me?''
And I think we need to address those needs in more creative
ways. So the question is, could the elderly get access to
housing vouchers that are under the HUD program right now that
we are using for low income? What if we got real creative and
looked at food stamps as a bucket of money to tap for the
nourishment part of that component?
The point being, where we operate nursing homes, we have an
all-inclusive rate which includes the housing and food
component. We don't see that right now today in assisted
living.
So I think there are some programs that exist out there,
but right now, we are fragmented and disjointed. I think we
are, quite honestly, more focused on trying to define assisted
living rather than looking at, hey, we have got a whole bunch
of these programs out here that are working. What can we do to
take the best of the best and replicate those processes?
I think that, Michael, you were getting at that same point.
There are some very creative things going on, and let us see
what we can do to replicate those and also tap into that money
that already exists. In this economy, we can't ask for more.
Ms. Dentzer. What about those of you, again coming back to
those of you from State governments, do you see these issues of
the existence of funding options, but so many constraints
against using them that it is really not meeting the need?
Christy.
Ms. Christy Allen. I am constantly hearing from people who
want more options for needs, and Tennessee has been able to do
a lot in that regard through the home- and community-based
waiver program. And we know that doesn't pay for room and
board, and that remains an issue for families around the State.
We also--on the issue of availability, we are also a
certificate of need State. So availability is determined
largely by the group of people who sit on that particular
board. So there are all manner of concerns and interests that
go into talking about availability.
Ms. Dentzer. To clarify, so assisted living is subject to
the certificate of need requirement?
Ms. Christy Allen. Yes, every single healthcare facility
type is. It is through the health services and development
agency, which is maintained in a separate agency. So I do think
that Tennessee has done a very, very good job of rolling out
its CHOICES program statewide and getting as many people as
possible to take advantage of it. But there is still an element
of it that is private pay. And in a State where there are a lot
of people with lower income and lesser means, that is a
difficult challenge.
Ms. Will. Susan, if I may?
Ms. Dentzer. Patricia.
Ms. Will. We have talked a lot about and ought to talk a
lot about gaining access for people who can't afford the
product type. I think what many people don't realize or
remember is that the average means of the people that we serve
in market rate assisted living is decidedly middle class.
We have seen a number of studies that have come out, one
very recently by Boston College, and the income, the mean
income of a person living in assisted living is under $25,000 a
year. We are fortunate in our industry in that our seniors of
this generation were savers. We worry a lot about the explosion
in the baby boom population and a different set of lifestyle
habits.
And our seniors in the main were homeowners, very large
penetration of home ownership. And even those with modest homes
have been willing to sell their homes and use their equity, pay
down effectively their equity to live in assisted living.
I think it is important to realize that because we
recognize and all need to work together to find solutions for
people who aren't in that position. But in the main, the
industry is serving today people of relatively modest means.
Ms. Dentzer. Modest means at least in terms of income----
Ms. Will. In terms of incomes and even assets. If you look
at people who have sold homes, we are not talking about--we are
talking about on average enough for someone to stay the average
length of stay, which is about 2 years, 2 to 3 years in
assisted living.
So I think that it is just important, yes, we need to
explore all the means of access that we could find with all of
the creativity of crossing programs, as Illinois has done. But
we have a customer base today who, by choice, is using the
resources that it has to be in our communities, and they are
not necessarily affluent.
Ms. Dentzer. Just to recap, you said the mean income is
under $20,000 a year?
Ms. Will. Twenty-five.
Ms. Dentzer. Twenty-five. You are characterizing that as
middle class. That doesn't sound so middle class in this day
and age.
Ms. Will. For a senior, it would be.
Ms. Dentzer. Okay.
Mr. Polivka. It is about the median for all people over 65,
$24,000. But they are benefited from their housing equity.
Ms. Will. Right. And that is a generation where we have
very high penetration of home ownership and very high savings
rates.
Ms. Dentzer. Well, I believe if Senator Corker were here,
he would remind us that this is an environment of fiscal
straits and not an environment in which we are likely to see a
lot of new Federal funding come in.
So just to talk about ways where it might be possible to
free up existing pools of Federal funding or work through
existing programs and make those more accessible, less
constrained, I would love to hear any perspectives from either
our provider side or the State side about how it might be
possible to free up a little bit more of this, to support the
creation of more assisted living or affordable housing.
Larry.
Mr. Polivka. I have felt for 20 years that Medicaid was a
tremendous potential resource for funding people living in
assisted living. And I am a little surprised to hear that the
number at this point is 125,000. I thought it would have been
much higher than that by now.
I know that, in the case of Florida, it is somewhere in
excess of 25,000 at this point. You have got an assisted living
waiver with 5,500 people in it. You have got a diversion
managed care program with about 10,000 in assisted living. You
have got an assistive care services program with about 13,000
people in it that is funded through Medicaid with a match
arrangement.
So it is over 25,000 people out of the 82,000 people in
assisted living in Florida are Medicaid supported. I mean, that
is really an explosion over about a 5- or 6-year period. And I
know that, in the case at least, I think, of Oregon and
Washington, that has been true for years.
So I am a little bit concerned about this apparent real
serious unevenness in the use of the Medicaid waiver and other
options like assistive services to maximize that resource in
assisted living.
Ms. Dentzer. Do we even know how authoritative those
numbers are, the 125,000?
Ms. Bacon. I believe that the 120,000 are the people under
the 1915(c) waiver. So those are the waivered slots for
assisted living in each State, and there are 41 States that
have that waiver program. I am not referring to those other
programs that you might be talking about.
Mr. Polivka. Right.
Mr. Jenkens. So, Susan, I guess maybe partially in answer
to Larry's comment. In working to help States create affordable
assisted living programs for many years under the Coming Home
program, there is a little bit of a cycle that we get into.
So States, like Arkansas, create a terrific assisted living
Medicaid waiver benefit. They ask providers then to develop
programs to participate in that. Providers, very few providers
actually jumped in in Arkansas and other States because of a
number of structural impediments to their doing that, including
what Michael cited as the seven to eight layers of financing
you might have to put together to create an affordable unit for
people with an SSI level of income.
So you don't get the full utilization of the slots that are
available, which then limits the uptake that Larry mentioned.
And so, I think it really gets back to what Howie said. We have
to make it simpler or at least as simple to develop affordable
assisted living as it is to provide nursing home services, and
part of that is the payment source. It is complex.
Lenders are afraid of the risks that are involved in it.
Providers are afraid of the risks that are involved in
potentially capitated Medicaid waiver programs or capped
Medicaid waiver programs.
So, in my experience, there are resources out there. There
are more resources that could be directed or redirected from
institutional sources, but we have to make it simpler if we
want normal human beings to develop affordable assisted living.
Ms. Dentzer. Larry, to come back to what you were saying,
you said you had long thought that Medicaid could take on a
greater role.
Mr. Polivka. Oh, yes.
Ms. Dentzer. Did you mean in paying for the housing
component?
Mr. Polivka. Yes. We created an extended congregate license
in Florida in 1990 for the purpose of opening up assisted
living to more impaired people, both coming in and remaining
and aging in place. The whole notion was that the waiver would
come right behind it to fund it.
And we were really drawing on the Oregon experience that
had already been in place for 4 or 5 years funding assisted
living and adult foster homes very extensively in that State.
That was really the launching pad, as I understand it, for the
transformation of the Oregon system in the mid 1980s was
assisted living and foster care, Medicaid funded.
And my question in response to Robert is with this variance
across the States. I am not so sure it is a matter of all these
layers and complexity. I think it is a matter of State policy,
in large measure. I think the Feds at CMS have been open to
this for a long time, in part because of the kind of
flexibility you describe, Barbara. I think it is a problem of
State initiative, fundamentally.
Mr. Reed. Yes, I agree with that. It is an issue of State
policy and how they manage their system, how people access the
system.
One of the things that I think we haven't talked about here
yet is that most people who enter assisted living enter it in a
traumatic event. You have to have a traumatic event to leave
home. And while assisted living may be more attractive in many
cases than nursing homes, it is still not home.
So something traumatic happens, and people have to access
the long-term care system, and it is very complex in many
States. And I also agree that Medicaid is the funder of many
assisted living slots in Washington and Oregon and other
States, but the Medicaid money does not build the buildings.
They buy these slots from private providers, and I think it is
important in Washington and Oregon to say that they have
negotiated deals with the private providers, saying you can
take some Medicaid clients, but not all Medicaid clients.
If you are a nursing home, you would take one Medicaid
resident, you would take them all. In assisted living, you can
take two or three or four. And what happens a lot with private
providers is they have people who spend down. And instead of
kicking that person out, they allow them to become Medicaid
eligible and take a lower Medicaid rate for that person to stay
there.
I want to just mention one other thing. I think we need to
look at assisted living as not a continuum. It is part of the
array of servcies. Continuum implies that you go there and move
on. The assisted living concept is aging in place, and that
works better in theory sometimes than it does in reality. But
it is important to view assisted living as one of the array of
services and that one size does not fit all.
Some people choose to live in that setting. Some people
prefer to stay home. Some people even may prefer to go to a
nursing home. But that should be a personal choice. And so, the
importance of a good long-term care system is to provide
options that are viable to consumers that they can choose where
they want to be and where they feel most comfortable to meet
their quality of life needs.
Mr. Jenkens. So I think there are really terrific examples
across the States of individual programs that have addressed
many of the concerns that we are listing. I think the challenge
is to put them together consistently enough through
reimbursement and financing programs to allow the development
to take place.
So, just as an example, I think a real challenge that
willing providers face when they want to develop an affordable
assisted living program is that people have to be nursing home
eligible. They go through a crisis, as Charley said, and they
need a placement within 2 days. They have to be out of the
hospital.
In nursing homes, there is a retroactive payment provision
for people who are accepted in and then qualify for Medicaid.
In most assisted living programs in States, there is not a
retroactive provision. So people, by necessity, go to a nursing
home. That is where the funding source is. And then they don't
come out.
Michael talked about the 1.5 million people living in
nursing homes. About 1 million of those are Medicaid funded.
Less than 5 percent of Americans say they want to live in a
nursing home. So I think you can kind of gauge the size of
demand by those numbers and then understand, well, how do we
get actually the supply to meet the demand?
And we know the demand is out there. So there is an issue
with getting the supply on the table, and I think we can solve
it. There are good examples. We just have to put our minds to
it.
Ms. Dentzer. Michael.
Mr. Vaughn. Yes, I said I wanted to give some examples, and
I think an example here is helpful. It is an example both of
the complexity and of the chances we have, the opportunities we
have. It is when HUD recently did mortgage insurance for a 120-
unit facility. Sixty percent of the units will be leased to
Medicaid-eligible residents at Medicaid reimbursement rates,
with the remaining 40 percent leased to private pay.
The financing of it was--had tax credits so that that same
group basically had an income restriction as well. It pretty
much went hand-in-hand. The funding for the project was a $12
million HUD mortgage, Section 232; $11.2 million in low-income
housing tax credit proceeds; $1.24 million from the Tax Credit
Assistance Program under the American Recovery and Reinvestment
Act; and $195,000 in Illinois tax credit funds. And again,
based on the Medicaid waiver program.
And they have done a fair number of these around the
country, but not in relation to the demand that is out there.
Mr. Polivka. I think that is proof the stimulus worked.
[Laughter.]
Mr. Vaughn. It worked in this one.
Ms. Dentzer. Eric, let us take a comment from Eric, and
then I think Barbara, as I understand, has--oh, this Barbara
has new data. Okay. It is not clear which Barbara has the data,
but we will go to Barbara Edwards.
Go ahead, Eric.
Mr. Carlson. Thank you. First, I want to supplement my
introduction. I am also here representing the Assisted Living
Consumer Alliance, which is a national group of nonprofit
organizations and individuals working together to improve
standards in assisted living.
And I want to add something to this conversation, to say
that it is important that we do identify what is assisted
living. We are talking about what we need to do to increase
access to assisted living. It is a good thing.
But I think it has come out from some of the discussions we
have had over the last hour and a half, in practice, assisted
living can be very different. It would be terrific if we were
able to arrange for increased funding for a single occupancy
model that provided an adequate level of services to folks.
That would be fantastic. But if, instead, we are talking about
increasing access to a model that is providing shared occupancy
with staffing that may or may not be adequate, that is not such
a good thing.
I would like to emphasize it is about more than just the
money when we are talking about the programs so that we do have
some understanding what exactly we are funding here. And when
we have talked about the State models, I think we have
understood that there are some differences.
From a consumer perspective, we are much more supportive of
a model that has a little more structure and, say, the Arkansas
and Alabamas that have a couple of different levels and that
have standards that are more commensurate with the care needs
of the individuals, as opposed to a one-size-fits-all licensing
standard that may just require that there at least be someone
awake and on duty and then, after that, leaves a lot of
discretion up to the individual facility.
Because, in practice, you get bad results sometimes, and
the flexibility that you have in the regulations allows, in the
best-case scenario, a provider to do a tremendous job. But that
is where you have the biggest problems, too, when you have
people that aren't up to the challenge and, particularly with
Medicaid funding, aren't up to the challenge of providing care
for individuals who, by definition, have conditions that would
warrant admission into a nursing facility.
So particularly in an environment where we want maybe not
just to spend so much money, but to make sure that the money
that we are spending is spent intelligently and well, it is
important that we look at this. I am most familiar with
Medicaid, but I think in all these programs when we are putting
together these funding sources, we should make sure that the
end product is something that is productive for folks.
And I do think, particularly when we are talking about
Medicaid and dealing with folks who have a significant level of
care, that we need to have some assurance that there are some
standards there and that the care is appropriate for people's
needs.
Ms. Dentzer. Reactions to that from--Larry.
Mr. Polivka. Eric, I am sensitive to your concerns, but--
and this has been part of this debate for a long time, in terms
of how we regulate and how specific do the standards become and
how far do we get beyond what CMS is working with now in terms
of HCBS definitions. Is there any evidence that this
flexibility and wide range of approaches and definitions has
really resulted in bad outcomes?
I mean, I have been looking at this for a long time, and I
would certainly be interested in knowing if we have got
substantial evidence. But I, frankly, have not yet seen it, and
I have been looking for a long time.
Mr. Carlson. My understanding is that the Inspector General
for HHS is taking a look at this this year, to take a harder
look at the Medicaid fund and home- and community-based
services and assisted living and adult day health care. I can
tell you from my own experience in California and in talking to
folks from other States that we do see programs. I am in a
State that inspects assisted living facilities once every 5
years, and I am well familiar personally with facilities that
don't do a good job and with licensing agencies that aren't in
a position to enforce standards upon those providers.
And I think it is a question of maybe it is a burden of
proof question. I think the jury is out on the question in both
directions, whether the care is adequate or whether the care is
inadequate. And so, I do think that there is an issue. I think
the providers would recognize that there are good facilities
and bad facilities in their particular States. I think
consumers recognize that there are good and bad facilities.
And I can look at a licensure system and see that, if it
provides no standards, that is a real issue, particularly in an
environment where many of the providers do not come from a
healthcare background. And that is this issue here about the
acuity of the residents increasing, which is a good thing that
you have a system which doesn't force folks to go into nursing
facilities and which allows people with greater care needs to
stay, but you don't see the standards that match that.
And I defer to some of the State regulators, but I think
that the Alabamas and the Arkansas, not to pick on them or to
praise them, however that is perceived, they have reasons to
try to develop particular levels of care with standards that
match the needs of the people.
Mr. Jenkens. Can I expand a little bit on Eric's comment
about Arkansas? Because I do think that is a terrific example
of a regulatory system, especially one designed to help people
at a nursing home level of care have additional options. And I
want to compliment Charley for his pointing out that assisted
living shouldn't be a stop on a continuum, that it is not--
people are not widgets to be moved along a continuum of care.
They create homes, and they have harder and harder times
creating homes as they are moved into higher levels of care. So
assisted living should be an option within a set of community-
based and facility-based long-term care options.
To do that, you have to have a regulatory structure like
Arkansas's that really recognizes the significant level of
acuity and services that will be required to provide, as Eric
said, good quality care. And I would like to compliment
Arkansas for doing that.
And I think we need to think about that, especially within
the Medicaid spectrum. How do we create an option that is good
quality, truly operationalizes person-directed care, and then
create a system that allows that to be developed in large
numbers so that it can be a meaningful choice in communities?
Ms. Dentzer. Barbara.
Ms. Edwards. Thank you.
I just wanted to offer a little bit of perspective on the
issue of Medicaid and where Medicaid is serving. We serve
almost a million people in HCBS 1915(c) waivers. So we don't
have information at the Federal level as to what housing those
individuals are in by type, but it has been a fairly robust
program of providing those kinds of services to individuals in
communities.
And we like to see programs that offer individuals choice
of where they live so that they may choose to stay in their own
home, and services come in. They may choose to live with a
friend, and services can support them. They may choose an
assisted living setting, and services can be funded there as
well. And there may be an adult group home. There may be a
foster care arrangement.
States make those decisions as to what options are going to
be available. But I think from our perspective, we like to see
that individuals have a choice. The fact that people have
choice, though, is sometimes why it is difficult for Medicaid
to be committed to the development of a new, say, an assisted
living facility is that, again, the individual has the choice
of where they want to live. At least that would be the ideal
rather than the only place you can get that service is if you
move into this building.
That is when I think we hear from advocates and others some
concern that that may not be the way they would like to see the
systems develop. They would like choices. And if the only
choice is I must leave my home and move into a place where we
are then funding, that becomes just the same problems folks
have with nursing homes. If I have to move there because it is
the only place that there is funding available, that can be the
same challenge folks have if the only place they can get
support is in an assisted living facility or a group home
rather than also having the choice of staying in their own
home.
So one of the challenges I think States have and one of the
challenges of Federal policy is how to assure that people
continue to have reasonable choice while still helping to
develop sufficient capacity where investments may be needed to
develop that capacity.
Ms. Dentzer. Charley.
Mr. Reed. Yes, I want to support that and support what Eric
was saying before. I used to regulate the long-term care system
in the State of Washington. And we were involved in developing
assisted living early on. We regulated it.
I want to talk now from a consumer standpoint about
regulation. Regulation is very important to consumers. I have
already told you that people enter the system at the time of a
traumatic event. We have to have regulation over the admission
policies to assisted living, so it is clear what it is you are
getting for what it is you are buying and about what happens if
you get to another level of care and you are getting
discharged. It has to be very clear from the facility. That
needs to be regulated by somebody to be sure that they are not
only clear, but they are implemented.
And then it has to be clear that your basic dignity is
protected while you are in assisted living. I think that
assisted living is a part of home and community services
because of the privacy involved there. In general, you have got
a key to the door. You have a private bathroom. You have your
own cooking facility, and you get to decide when you want to
have breakfast, what you want to have for breakfast. If you
live in a nursing home, somebody decides that for you.
So I think assisted living meets the test in my mind of a
community service. But it is important that there is good
regulation and just as important that there is enforcement.
There is some talk today about a plan of correction. That is a
nice idea as long as they correct the problem.
I think the regulators have to be sure that they enforce
what they find out. It doesn't do a lot of good just to find
there is something wrong. Somebody needs to do something about
that. And I assume that all the providers are well motivated,
but sometimes they need to be reminded. There has to be a
consequence for doing something wrong.
And as a consumer, I want to see the consequences applied.
If I develop some horrible situation because the facility has
not met my individual needs that they have contractually said
they are going to do, I want a consequence. And so, regulators
have to be there to provide that consequence.
And I agree that that is not very well done across the
country, but it should be. And I think that regulation and
enforcement is critical for States in all these settings,
whether they are residential or assisted living or other
community settings. It is important to the consumers.
Ms. Dentzer. We are going to have more discussion on
regulation, per se, in the last bucket of this conversation.
Howie.
Mr. Groff. I just want to make one comment. As we talk
about it, and Charley just described your vision of assisted
living, we need to remember that we do have many units where
they are secured, where we take care of people with memory
impairment.
And in those units, we oftentimes don't design full
kitchens out of concern for the safety of the residents. So as
we define home- and community-based services, and as Brenda
mentioned, we have over 120,000--I have got a number a little
higher, but we will say it is north of 120,000--that are
already being served in what we call assisted living.
Eric, you are right. We don't have one definition. I am not
sure we will ever get there, quite honestly. But set that
aside, we are already taking care of these folks with Medicaid
services. And if we aren't careful with our definition, we
might have to find new homes for these people not because it
was done intentionally, but it could be an unintended
consequence.
So I hope we work at that, Barbara, and look very hard at
where are these folks being cared for today, and are they happy
in those settings?
Ms. Dentzer. Robert.
Mr. Jenkens. Susan, one last comment from my side. Much of
what we hear being discussed at the table, the need for simpler
payment, the need for a definition, the need for good strong
regulations, those are actually benefits from a lender's
perspective. Lenders like something they can understand and
analyze.
And it is very hard for them in the current setting when
there is no certainty, there is no certainty about either
revenue or, in some cases, cost to really make an assessment,
especially one that will last the 15, 20, or 30, or 40 years
that they are committing their funds to, especially when
Medicaid waivers are renewed on, I guess, a 5- and a 3-year
basis. So aligning those two pieces will be critical. But what
we are talking about here won't hurt investment, may actually
help.
Ms. Dentzer. Well, what would be the appropriate mechanism
for alignment then? Is it regulations at the Federal level, or
how does all of this come about?
Mr. Polivka. What are you aligning?
Mr. Jenkens. Payment sources, requirements, and lender and
investor needs. So I think there is a terrific start to this,
and I am not sure exactly where it is. Barbara, I don't know if
you know, or perhaps Michael. But there has long been a hope
for a very strong HUD and CMS workgroup around affordable
assisted living and creating better alignment there.
I think that is a start. Then having some capacity to
modify or realign programs or at least elements of the programs
that I think we have, those of us working in this industry have
long identified. The Center for Excellence on Assisted Living
put together a white paper on affordable assisted living I
think 3 years ago. It is a terrific paper. It really points out
all of the different pieces that we are talking about.
And I think if we could get a workgroup together to
actually look at those, some of it we may be able to solve
quite easily within current programs and program rules. Some of
it may be legislative. Some of it may be a new program.
Ms. Dentzer. What is the status of this rumored workgroup?
Mr. Claypool. HUD and HHS do have a working group that is
focused primarily on the transition from institutional settings
into the community. We haven't addressed assisted living as an
issue.
However, our Assistant Secretary for Planning and
Evaluation--you may be familiar with the work that they have
done--has commissioned a couple of recent papers. And I am
sorry, I don't have them here to cite from them. But I think
that is a clear indication that the department is looking at
the role assisted living plays in Medicaid long-term services
and support.
Let me give you a broader perspective on where the HUD/HHS
collaboration is. It came out of President Obama's year of
community living. At the center of the initiative were 5,300
housing vouchers that HUD made available for disabled families,
I believe is the term that HUD uses.
Of this 5,300 vouchers, 1,000 of those vouchers were set
aside to coordinate with the CMS program Money Follows the
Person, or a very similar State effort that was designed to
provide the services that were needed by the individual when
they moved into the community from an institution with the HUD
voucher.
HUD has made the award of these vouchers. And CMS now is in
the process of looking at to what extent was the Money Follows
the Person program really instrumental in influencing the take-
up of these vouchers?
There are a number of other issues that we are dealing with
in this working group, and I could quickly give an overview on
some of them. We are dealing with issues around civil rights.
That is something that I think we should be mindful of when we
talk about assisted living, particularly when the resources
that Eric mentioned aren't in place.
If you develop a very congregated setting where people are
going to be served and they don't have enough service, the
Department of Justice may, indeed, come in and find that these
individuals are not living in the most integrated setting
appropriate to their need. We have seen that happen on the
mental health services--there are Medicaid funds involved. But
we are really talking about large congregate settings where
services are provided to individuals without regard to their
interest in living in scattered sties.
So I know that the industry around the table aspires to
much better, but it is something that we have to be mindful of.
And this working group is tackling some of those issues.
Our others are really focused on building partnership
between the HUD programs, particularly the public housing
authorities, and the Medicaid program and entities that are
funded through the Medicaid program. There are a couple layers
of complexity on the HUD side that I may get wrong. But the
State housing finance entity has the ability to work with the
Medicaid agency right now. And under the 811 program, it is
supportive services for individuals with disabilities. Congress
recently passed a law that now changes that program and really
puts front and center this partnership between Medicaid and the
housing State financing entity as the key objective.
There are a number of other ways that they want to bring
financing arrangements to the table, which HUD can hopefully
underscore. But the point being, when you really have a program
like 811 moving away from just funding providers that are going
to create living arrangements for people that rely on Medicaid
toward a more strategic approach that is looking at how we can
leverage the limited resources that HUD is making available
through a program like 811 and using things like tax credits to
make that possible. We are beginning to, on the HHS side,
really understand what it takes to build a strong partnership
with the State housing entities, be they public housing
authorities or at the financing level.
This will take a while to mature. We tried to do this in
the late 1990s, and we didn't get too far in our partnership.
But Secretary Sebelius and Secretary Donovan remain very
committed to seeing the partnership blossom. And perhaps the
information that is gathered here today will be forwarded to us
so we can examine the assisted living issue through our
collaboration.
Mr. Vaughn. To add on a little bit to what Henry said, we
are committed to that partnership, and our agencies are
pursuing it. But we have other partners who need to be at the
table, and I will say it before Barbara does. The CMS works
through the States. So, in order for these things to work
effectively, HUD is in many ways able to provide the funding
for the housing itself. But the services have to come from HHS,
and HHS doesn't administer directly, as HUD does, but it goes
through the States. So the States have to be at the table to
discuss the waiver programs and how they work.
Also, as you mentioned, the State housing finance agencies
are the dispensers of the tax credit. So I think they have to
be at the table, too, and our private sector partners, as well
as our public housing authority partners. I think they need to
be part of the discussion, as well as other people represented
here at the table. So it shouldn't be a small group. It should
be a larger one.
Ms. Dentzer. It is, believe it or not, already almost 3:00
p.m. It says it is on. There we go.
As I say, it is approaching 3:00 p.m. I propose that we
take a 5-minute break now, stretch break, et cetera. Reconvene
here in about 5 minutes, and then we will move on to our last
set of discussions around regulatory issues and disclosure and
so forth.
So see you back here in 5 minutes.
[Recess.]
Ms. Dentzer. If you all would go ahead and take your seats,
we will get started in just a moment.
[Pause.]
Folks, if you would please go ahead and sit down, we will
get started here momentarily.
Anne Montgomery just asked me to mention to all of you that
the Aging Committee is going to be compiling all of the
questions and the responses that all of you sent in to the
questions that the committee asked and will be sending that out
to everybody. It will take about 3 weeks for you to get that
back, but you will have that.
And toward the end of our session today, let us try to
devote perhaps the last 10 minutes or so to seeing if we can't
surface a few points of consensus that came out of today's
discussion as to how we keep the conversation moving forward on
some of the issues that we have talked about.
We will move now to access and discharge issues that,
again, impinge on many of the topics that we have been speaking
about so far today. But, in general, what we want to discuss
are issues along the following lines.
Do States generally require Medicaid-participating assisted
living facilities to disclose what their policies are with
regard to retaining residents who spend down their private
funds--we discussed this earlier--and become eligible for
Medicaid? How does this work? Do States generally allow
facilities to discharge individuals who start out as private
pay and then spend down to Medicaid eligibility over time?
When the facility is in a position to replace a Medicaid
beneficiary with a resident who can afford to pay a higher
rate, does the facility, in fact, have that latitude? So that
is one of the questions we want to explore.
Again, do all, many, some, no States have processes in
place that permit Medicaid beneficiaries to appeal any
discharge decisions by assisted living facilities? What is the
legal position of facilities licensed to offer assisted living
services with regard to discharging residents whose needs
exceed State-licensed level of care requirements?
How does the facility have to comply with other statutes,
anti-discrimination, Americans with Disabilities Act, Fair
Housing Act, and so on in this regard? Is there merit at all in
requiring assisted living facilities that ask a resident to
leave because he or she develops the need for services that
exceed that facility's care standards to help with the transfer
of a resident to another setting in which higher-level services
could be provided?
Or alternatively, could assisted living facilities, should
they be asked to assist residents if they wish to age in place
and bring in additional services?
And then, finally, are negotiated risk agreements, as are
used in some States, a mechanism whereby living facilities and
residents can attempt to negotiate additional services for
residents whose care needs are found to exceed State licensing
levels of care?
So this is kind of the body of the questioning that we
would like to explore now. And I thought we would start off
again with our providers on those perspectives to give a sense
not only how they see things operating in their own State, what
the legal environment is in their own State, but what ought to
be the case.
So, Brenda Bacon, if we could begin with you?
Ms. Bacon. Susan, I could talk about this all afternoon. So
I am going to warn you. Just to hit on a couple of the
subjects, I think that disclosure and commitment to that
disclosure are crucial in every State for every provider.
I think that consumers have a right to know what your
policy is, particularly since there is limited access to
Medicaid waiver dollars. And you need to abide by that policy
always. I think the State of New Jersey has taken steps, as
other States have, but particularly in New Jersey, they require
that 10 percent of the assisted living population have access
to Medicare waivers. And I think that the communities in New
Jersey proudly participate and actively participate in the
Medicaid waiver program.
I think each State has developed its own approach to the
Medicaid waiver, and 41 of those have, and some have not. But I
think in every State, they have developed a very robust program
around regulation and around access. And I think people are
very, very involved in that process in each State.
There are two reasons I believe that people discharge from
assisted living, which is their preferred setting. One is that
their level of care is such that they need to be in skilled
nursing. But, most often, there is a discharge, unfortunately,
because they can't access Medicaid, and they have to go to the
skilled nursing center where they can access Medicaid dollars.
And that is unfortunate, and we have talked a lot about that
today.
So I think one of the main ways that we can increase the
ability of people to choose the setting in which they want to
live is to reduce the institutionalized hold on the dollars
that they need. But in terms of policies of access and Medicaid
acceptability, eligibility, commitment to stay, those need to
be fully disclosed and honored, and I think everyone in the
assisted living community certainly that I know of supports
that.
Ms. Dentzer. So, then as a provider, what laws do you have
to operate under within the State to discharge a person?
Ms. Bacon. Well, in our State, we are required to make
plans for discharge if we cannot take medical care. In other
words, if someone absolutely requires 24-hour skilled care, and
even though we have 24-hour nursing onsite, we certainly don't
have the intensity of medical care that a skilled nursing
facility has.
So everyone has an obligation in every State under every
State regulation--to every 50 State set of regulations, they
have to discharge if they can't care for them. I think beyond
that, with the requirement for access to Medicaid funds, it is
really what your State has developed in terms of its
relationship and its State plan and its 1915 waiver in terms of
how many waiver slots they have available so that people can
stay in assisted living when they get there.
Ms. Dentzer. So is there any ability for individuals on
Medicaid to appeal any discharge decision?
Ms. Bacon. Oh, absolutely.
Ms. Dentzer. There is.
Ms. Bacon. Absolutely. I have a person in one of my
communities who has been there 11 years under a Medicaid
waiver, and she will always be there. I have 305 people under
Medicaid waiver, and they will be there as long as we can take
care of them.
If there is a discharge, whether it is a health discharge
or any other kind of discharge, there are always consumer
rights and resident rights policies in every State that I know
of that allows them to question that discharge.
Ms. Dentzer. Okay. Robert.
Mr. Jenkens. Susan, I would say that I think there are some
very good examples of States that do have discharge controls
and reviews. I think Oregon is one of them. Not all States do,
and I would say there is a great deal of actual I would term it
``tragedy'' involved with some of the discharges that I have
seen and heard about for people who either run out of funds or
where providers decide that the Medicaid program is no longer
sufficient to cover those costs.
I would say that discharge to me is one of the single-
greatest issues facing assisted living and that for us to honor
the values that assisted living was founded on--of home, of
creating community, of integration in community, and aging in
place--unless we address discharge issues and concerns, we
won't get to what assisted living promised.
Ms. Bacon. Can I just respond? There is one situation where
one company very notoriously decided they were withdrawing from
the Medicaid program, and New Jersey was kind of the epicenter
of that. We understand that. I have seen all of the horror
stories and the things that have gone on there.
The State of New Jersey has taken very aggressive action
against that company, and I know of no other company in the
assisted living industry that supports what happened there.
Ms. Dentzer. Larry and Martha, I want to ask you if this
has perked up on your radar screen as well. But let us go to
Larry first, and then we will----
Mr. Polivka. One of the reasons we created the license in
Florida in 1990 to allow people to age in place was that 4,000
people a year were leaving assisted living against their wishes
and going into nursing homes, most of them Medicaid placements.
You know, this is an inherently difficult issue. I think
you have to give assisted living facilities the ability to make
a decision about who can stay there, given the level of
services that they can provide. And that sometimes is going to
result in some really difficult, unfortunate decisions.
But if you can expand your Medicaid program to cover, to
really accelerate the growth of it, you are going to be able to
allow assisted living facilities to allow people to age in
place under more, a wider range of circumstances than can now.
But regulating discharge criteria is a really difficult issue.
I think you really have to err on the sides of giving these
facilities considerable autonomy in determining that as long as
there are disclosure provisions that really do reflect the
kinds of decisions that are made.
Ms. Dentzer. Robert, and then we will come over here to
Josh, and then to Martha.
Mr. Jenkens. So I think Larry brings up a very important
point. I think you want to set a minimum standard of what
assisted living will attempt to provide, and then you want to
create a great deal of flexibility for that provision of
service either to be delivered or brought in safely and
affordably.
But I do think there is a role for the State to challenge
providers because many of the providers' business models don't
involve people with high levels of need.
Mr. Polivka. Right.
Mr. Jenkens. As a matter of fact, they see that as a
marketing issue or a cost issue.
I want to also say that it is not just providers, however.
So, in my experience, regulators and regulations often are an
equal impediment to people staying in place and expressing
their choices and assuming some risks associated with staying
in a lower level of care.
So I think there is an equally important piece of this that
is really around what do regulations allow as far as civil
rights, as far as people expressing their preferences and
taking on some of those risks. And I know we will get to the
issue of negotiated risk agreements later. That is one tool
potentially for that, but there are many others.
Ms. Dentzer. Okay. Great. Josh.
Mr. Josh Allen. You know, this topic has me chomping at the
bit because nurses are often at the center of the conversation
about whether or not someone needs to be discharged. And I
think we should start with the term ``discharge.'' I think it
is highly inappropriate for the setting, given that we are
encouraging it to be a home and home-like. You don't discharge
out from your home. You move out of your home.
But Robert, I think, touched on a key point, which is, in
my experience, it is actually not often the provider who is the
challenge in this situation. It is the regulations that in some
States are quite prescriptive in what can and cannot be done in
assisted living.
I have had the opportunity to work in a number of different
States as an assisted living nurse. One of them, my great home
State of California, has a literal laundry list of seven or
eight things that simply are not allowed in assisted living.
You know, case closed.
You compare and contrast that to a State I have worked in,
in Oregon, under the nurse delegation model that was brought up
earlier. It is a good thing these mikes had off buttons, or we
could have talked about delegation for hours.
Under that type of model, there is much greater
flexibility. Whether it is using negotiated risk or a service
plan or whatever system you want to use, there is a much
greater flexibility for a healthcare provider--a nurse,
probably a physician being involved as well--to sit down with
that resident and their family and the provider and make some
decisions about what is appropriate for this individual and how
can we meet their needs.
So instead of just simply saying that if you have in the
California example, if you have a G-tube, a gastrostomy tube,
you cannot live in an assisted living community. Well, that is
ridiculous. There are many individuals living with gastrostomy
tubes in their homes, their true residential homes all the
time.
So to say that simply because you are in this licensed
building it is inappropriate is, I think, largely just a sign
of how old California's regulations are. Whereas, under a model
where we could say what is unique about this individual? Are
they receiving food and fluids through that G-tube? Are they
receiving medications through that G-tube?
Well, in some cases, the answer is no. So, for that
individual, it could be perfectly appropriate for them to
remain in that assisted living setting. In a State like Oregon
and others that utilize nurse delegation, allow that
professional nurse to use their judgment of how and when to
train staff to provide assistance. I think these issues, they
touch on everything we have been talking about today.
When you guys are getting into financing and banks, as a
nurse, my eyes kind of glaze over a little bit. It is not my
area. But the way that assisted living has really innovated
over the last 20 years is, in many ways, what makes it
affordable.
One of the reasons it is so expensive to live in a nursing
home is because an overwhelming majority of the functions being
provided for that resident have to be provided by a nurse.
Medication management would be the classic and best example.
Why spend all that money to have a bunch of nurses running
around passing pills when study after study has shown it can be
done very effectively by medication aides and medication
technicians who have been trained or perhaps delegated to?
There is a tremendous amount of innovation out there
regarding the actual provision of services to residents. And I
think if more States would take the time to learn from one
another rather than sort of working in silos and trying to
figure it out for themselves, but see what has been done, what
has been done effectively, it touches on everything we have
been getting into--from access to affordability to discharge to
quality of care.
At the end of the day, it goes back to the services being
provided, and how can we provide them in a flexible way that
can be tailored to the individual? Because if you want the
opposite of that flexibility, quite frankly, you have a nursing
home.
Mr. Jenkens. Josh, can I throw in lenders really hate it
when you violate those regulations?
Mr. Josh Allen. Yes. Larry, I actually didn't catch your
question. I don't know if you were being rhetorical?
Mr. Polivka. Well, sort of, half and half. But they only
inspect every 5 years in California. So who knows?
Mr. Josh Allen. Well, the practical reality is--and I will
speak from, I am obviously not a California regulator, but I do
a lot of work in California. From a practical reality, they are
in buildings much more than every 5 years. That is the minimum
standard for regulatory inspections.
They are also in the buildings for complaints, new
licensure, 90 days after licensure, and a host of other
reasons. But nevertheless, any provider, I would hope, tries to
practice to the letter what those regulations say. And
unfortunately, in that example, there is a very prescriptive
list of what is and isn't allowed.
Ms. Dentzer. Martha, I want to give you a chance to weigh
in on this.
Ms. Roherty. I think we had an all-State call a couple of
weeks ago on assisted living, and one of the things that came
out is, if the States have an up-front disclosure that is
really robust, it really can help out the consumer.
And so, we were kind of looking through what are some of
the models for really a robust up-front disclosure? It would
include like the preadmission process, the admissions process,
what is going to trigger a discharge or a transfer, the plan of
care, meaning the whole aging in place model and a consumer-
directed vision for the consumer.
The staff training, the orientation of the staff, the CPR,
if they have volunteers, that they are trained, what the
physical environment looks like. The staffing patterns, the
shift times, and then the residents' rights and who they can
contact if there is a concern.
But on top of that, the States were talking about the need
to really disclose the cost up front because a lot of the
people, like one of the States said that some consumers go into
a facility that is a Cadillac, and they can really only afford
a Chevy.
Now who gets the burden of that transfer when that occurs?
The State falls victim in a lot of cases because they are the
bad guys that are not able to pay for the Cadillac, and the
assisted living community is giving up that person's home. So
if they knew more in advance what is included in the base rate
and in the extra fees and everything right up front, I think we
would have some more informed consumers, too.
Ms. Dentzer. Eric, I want to bring you into this
conversation. What is your perspective on this?
Mr. Carlson. First, I would like to say that it is
important to keep disclosure in perspective. It is a good
thing, but not if it is in lieu of some solid base of
standards. Not that everything needs to be standardized,
obviously.
I think that there is a false choice that suggests that, by
extending any kind of standards, you are turning an assisted
living facility into a nursing facility or something that can't
be saved. There is a middle ground here, and to the extent that
we rely on disclosure, I think we have an unrealistic
expectation of how that works in practice.
You are a consumer. There was a discussion here about a lot
of these decisions being made in traumatic circumstances. You
get a big stack of papers that describe how this facility is
completely different from some other facility. Consumers aren't
in a position to really process it.
They should be able to process and can be expected to
process some differences around the edges, but not at the core.
I think that consumers legitimately expect that there are some
similarities between assisted living facilities, that they
share some concepts. And when you buy into an assisted living
facility, you know what that means at some basic level.
There may be differences. So I think that, myself and my
constituents, the people I work with, really worry that there
is too much of a focus on disclosure if we are ignoring
standards because of that.
And then as applied to a couple of these issues--requiring
that Medicaid be accepted, for example. In some States it is
beyond disclosure that Medicaid, when a person becomes Medicaid
eligible--and again, I am not from these States, but looking at
the regs and the policy--Illinois, New Hampshire, Oregon, I
believe. No, Illinois, New Hampshire in any case require that
Medicaid be accepted.
What I see in Oregon is a statement saying that every bed
has to be certified. I want to say that is an incredibly
important thing for a consumer. That if you are in an assisted
living facility, you enter as a private-pay individual, you
spend your life's savings down to Medicaid eligibility, the
facility is Medicaid eligible. You entered that facility
knowing that it was Medicaid eligible, and then the facility
says, ``I am sorry. We don't want Medicaid from you.'' Just
look at that from that person's perspective.
That is a hard, hard thing. And it strikes us as
inappropriate to have a person pay their life's savings in such
a way and then be told that they have to leave. There is
something a little cold about that that I think is
inappropriate from a policy perspective, from a human
perspective.
And then the level of care issue as well, I think it is
important to--I would suggest here that I think that facilities
and consumers benefit from a little more specificity as to the
level of care that the facility can and cannot provide. Because
when the continuum is so broad that you have got some
facilities that provide very little and some that provide
something close to a nursing facility level, it is difficult
for consumers.
And when they are told that they have to leave, it seems
much more like an ad hoc decision that a facility is saying to
them we are deciding in your case we don't want to provide care
anymore. And I agree with the statement that all the States say
that a facility has grounds to discharge when the facility can
no longer meet the person's needs.
But depending on what State you are in, it feels like an ad
hoc decision because the facility in many of those States has
the ability to provide care if it wanted to. The licensure
standards allow for it, but the facility has self-defined
itself as only providing a limited level of care.
And I will also mention that the difficulty for the
provider at that point of view is that it really does raise
some ADA and fair housing issues because, if it is the State
that is setting those levels, it is the State that is at risk
for violating the ADA. It is the State that is not making a
reasonable accommodation to allow people to stay.
But if the State says we don't have any problem with you
providing this level of care and the facility is saying we
choose not to meet your needs--and I think it was mentioned
earlier, there is a financial calculation about all of this and
the type of level of care that you want to provide--the
facility really has some issues.
And then as far as the process is concerned, there is a
tiny, tiny minority of States that allow an administrative
appeal in these circumstances. I agree that there may be
regulations. And so, there are resident rights. There is
probably in the vast majority of States, there is a listing of
justifications for transfer and discharge, but they tend to be
loose. They may refer to the contracts and if the contract-
authorized discharge is okay, or it may allow discharge if the
facility can no longer meet the person's needs.
So there is a lot of wiggle room there, and then there
really is no administrative process. And it puts a consumer in
a difficult position. California is one of those States. And in
my experience, when consumers get a notice that says you have
to leave, and there is no particular explanation of how it
might be appealed--the law has changed in the last year or so--
but they tend to just fold up their tent and say, ``Well, I
have been told what the situation is. That is it.''
Ms. Dentzer. So I would like to hear from some of the State
folks here and get a sense is this an issue in your State? Is
there a mass movement among facilities to discharge
individuals? Is there not? Is it a nonissue? And where along
this spectrum do all of you fall?
Julie, maybe you could start by clarifying what is the
situation in Oregon?
Ms. Strauss. So, in Oregon, we do have rules specifically
around involuntary transfers, as we call them, or involuntary
move-outs. And in our State, we have voluntary Medicaid
participation. If you sign a Medicaid contract, you have agreed
that Medicaid is a payer source. In our rules, you can ask
someone to leave for nonpayment.
What we have said is, if Medicaid is a payer source and you
have a Medicaid contract, you can't ask someone to leave if
they become Medicaid eligible.
Ms. Dentzer. You cannot?
Ms. Strauss. You cannot. That is not a legitimate reason if
you have a Medicaid contract. Of course, our uniform
disclosures and our agreements require that you say up front,
``Do you have a Medicaid contract?''
We have been very, very fortunate for providers who have
decided that they no longer want to participate in Medicaid.
They have gone through what we call a ``gradual withdrawal
contract.'' So they have said anyone who currently is living in
our facility, we will go ahead and extend to them the courtesy
if they spend down that they can continue to be in our facility
and we will continue to accept Medicaid as a payer source until
they leave.
What we are finding in the transfer rolls, quite honestly,
what we are hearing, we don't see a lot of involuntary move-out
notices going for level of care. We probably see much more
having to do with behavior associated with a safety issue,
either to themselves or to others, because we don't require the
level of staffing in a lot of those facilities. A risk
agreement is great when you are talking about negotiating with
a family and an individual about their risk. It is another
thing when there are other residents or staff being placed at
risk by that individual.
And so, we are seeing a much higher occurrence of
involuntary move-out notices for behavior rather than actually
for medical service need, which seems to be the dominant topic
here with regard to service level of need is more the behavior
service than the medical service.
Ms. Dentzer. Irene.
Ms. Collins. Susan, in Alabama, again, we don't have
Medicaid as a payee, or payer source. But we do have our bill
of rights for our residents, and our ombudsmen are the voice
out there for them if an issue does arise. And in addition,
with the bill of rights, it is the same thing that Julie just
said. In there, we are seeing more about behavior than we are
about discharge for care. Same kind of thing.
Ms. Dentzer. Krista and Kevin, what is the situation?
Mr. Coughlin. In Wisconsin, two of our models, they are a
little bit different. One model does allow for an appeal of a
discharge, but that nonpayment issue is problematic sometimes
because the person spent down, and then they don't--a facility
doesn't have a contract for Medicaid.
And in our State, we have Family Care is the Medicaid
program, which is working very well. Right now, it does reach
about 80 percent of the population as an entitlement. So, in
those places when we have spend-down, many times they are then
eligible, and then they can remain.
We used to have a lot more discharges because of nonpayment
because people had to go on a waiting list. So they went to
nursing homes prematurely. But there is this issue does come up
on occasion. I think disclosure is very important so people
know ahead of time. But it is, when that happens, it is a very
difficult situation. When somebody does get an involuntary
discharge because--for whatever reason.
I think what is nice about our regulations is we do have
some flexibility. So, usually, if there is a barrier to the
regulations, many times we can issue a variance, add some extra
protection so that the person can stay so we don't have that
move because transfer trauma can be very debilitating to an
individual.
And I don't see it as--we do have some cases of that
occurring, but I don't see it as a huge concern. I think
communities, when they can, want to retain those people as long
as possible.
Ms. Dentzer. And Krista.
Ms. Hughes. In Arkansas, the Office of Long-Term Care, as I
said, regulates and licenses the facilities. The ones that
enroll in the Medicaid waiver enroll through my office with the
Division of Aging and Adult Services. And actually, we don't
even know how many units each facility--we don't ask them--we
had not previously. We are now. We had not previously asked
them to stipulate. So, really, you wouldn't know, even the
long-term care surveyors would not know, going into a facility,
which units were designated as Medicaid waiver units versus
private-pay units.
The State does not get involved with if a particular
previous resident was a Medicaid waiver client and discharged
for whatever reason. They would not even be required to put
another Medicaid waiver client into that particular unit. It is
just not ever seen to that degree.
Ms. Dentzer. Okay. Let us move to the area of negotiated
risk agreements. And Robert, I think you were starting to weigh
in there?
Mr. Jenkens. Sure. I think that----
Ms. Dentzer. First of all, just so we are all on the same
page, what are those?
Mr. Jenkens. Sure. So negotiated risk agreements mean
different things to different people. But, in essence, the
concept of a negotiated risk agreement is to allow an
individual to assert that they are willing to take on some risk
because either the provider doesn't offer a service that they
may be judged to need or the setting itself may offer less
protection in the way of life safety, in the way of services,
or regulation than some might judge them to need as well.
So it is really a way to let a competent individual or the
family make decisions the same way you or I do in our own home
about what is good for us and what the balance is. So I don't
know how many of you in this room have gone skydiving? Most
nurses would not allow you to go skydiving if they were asked
to weigh in on that. So it is really in that context.
I would say that, in this sort of three-party structure of
good, strong, minimum regulations, additional flexibility
allowed on top of those through good disclosure, and I would
like to put in a plug for AHRQ's disclosure collaborative that
is producing what I think will be a model of disclosure
standards. And then consumer choice in the form of some way for
the consumer, whether it is negotiated risk agreements or
something else, to really be able to assert some piece, their
piece in the conversation between providers and regulators.
And currently, in my opinion, consumers of assisted living
don't have much of a voice in that conversation. So there is a
paper funded by ASPE, of which I was an author, looking at
negotiated risk agreements. This was about 5 years ago. The
state of negotiated risk agreements, and then the pros and the
cons around that.
Ms. Dentzer. Josh.
Mr. Josh Allen. I think one of the practical realities of
negotiated risk is often the question of who are you
negotiating with? The resident, at the end of the day, is the
person you are responsible for, and they are the consumer. But
virtually every assisted living resident I have ever talked to
has had a family member involved in some shape or form or
another.
Sometimes it is a very clear legal relationship, you know,
a power of attorney, for example, conservatorship. More often
than not, I think it isn't. It is simply a relative who has
helped mom or grandpa or whoever it is make their way into that
assisted living community.
And I am speaking from many, many examples of personal
experience where we know what the direction is for a resident,
but we have conflicting direction from a family member. An
example that sticks out in my mind I will never forget was in
an assisted living community in Los Angeles I worked with where
we had a resident who was to be receiving Aricept related to
Alzheimer's disease, medication.
The family member who was the responsible party didn't have
any real legal authority. But took it upon themselves to stop
making the co-pays for that Aricept, and now as a provider we
were sort of stuck in the middle of we know this resident needs
it. The family, who is controlling the money--probably not
entirely legally--doesn't want to pay for it.
And those sorts of examples happen time and again. Issues
related to driving, issues related to wandering, issues related
to following physician-prescribed diets. There are dozens of
very practical examples where negotiated risk could perhaps
play a role. But one of the practical realities, one of the
challenges is it is not always as simple as the provider, the
resident, and the regulations. It is usually a much more
complex relationship with family members and perhaps legal
representation for the resident.
That, at the end of the day, the care provider is stuck
sort of wading through that somewhat tricky mess of figuring
out at the end of the day who really should be making decisions
for this resident. And this becomes even more tricky when we
get into something we haven't talked about a lot today, but
Julie started to bring it up, and that is the issue of memory
care.
Persons with dementia, Alzheimer's disease, without
question one of the fastest-growing segments of the population
that are in need of assisted living services. Who is making the
decisions for that person?
They rarely come to us with any sort of conservatorship. At
most, there might be a financial power of attorney. And there
are a number of logistical challenges to really successfully
implementing anything that I would say resembles negotiated
risk.
And then one last comment. I think what is important to
take away from the ideas behind negotiated risk is the concept
of communication. Every State has different legal realities
regarding negotiated risk.
In California, for example, we cannot use negotiated risk.
In other States, they require you to have negotiated risk. And
again, that is, I think, appropriate based on what fits the
needs of the consumers in each State. But the running theme
with negotiated risk is that it encourages communication.
Someone earlier brought up the service planning or the care
planning process. That is really what needs to be happening is
the provider, the resident, whoever else is involved in making
these decisions, they need to sit down and they need to talk.
It really is no more complicated than that.
You know, we could spend hours going in circles about the
details, but it really is that simple. If all those interested
parties sit down and have a conversation about what is needed,
what is allowed, what is not allowed, how are we going to
figure this out, in virtually every instance, you can come to
some resolution.
And again, that starts to feed back into the discharge
question. It starts to feed back into the level of care
question. It is a very umbrella type of issue. When I worked in
the corporate office for an assisted living provider as a
nurse, one of my responsibilities was to get involved any time
we were considering an eviction notice, an involuntary
discharge, involuntary relocation.
And I can tell you, in 99.9 percent of cases, we were able
to avoid ever writing that eviction notice. We didn't have to
get the attorney on the phone to write a letter because we
could sit down and we could talk. And sometimes the end of that
conversation was the resident stayed, and we figured out a way
to make that work, as in the case of the Aricept resident.
Other times the decision amongst all of the parties was,
you know what, dad is wandering. We have found dad outside a
few times in the last couple of weeks, and there are some very
real safety concerns. And as painful as that decision is to
move out, everyone, at the end of the day, was in agreement. It
was the right decision.
Now it wasn't under the heading of negotiated risk, but I
think the concept was there. To get people to sit down and talk
and get all of the parties at the table. And you said what
could we come to consensus to? I would certainly hope this
group could come to consensus on that.
Mr. Jenkens. Susan, just a quick comment on Josh. I think
he summarized the findings, actually, of our study quite
beautifully, which really is the conversation that is
important. And I think what we need, again, whether it is a
negotiated risk agreement or some other framework, is the
requirement that the conversation take place.
And I think in States that require a negotiated risk
agreement, that provokes the conversation that says who should
be included, including the consumer? I think in States where we
don't have language around that, too often we get the eviction
notice with no explanation, and the person is just, as we say,
gives up and moves on.
Ms. Dentzer. So can you give us a sense how many States are
like California--if I understood you, Josh--don't allow
negotiated risk agreements at all? How many allow them?
Mr. Josh Allen. For point of clarification, what California
does have, though, are very clear standards regarding the
development of a service plan, which I would argue--I am a
nurse, not an attorney. I am sure there are lots of them in the
room. There is a legal difference between disclose and a
service plan, but I think the concept is very similar.
Mr. Jenkens. I am guessing Eric knows the number because I
have forgotten.
Ms. Dentzer. True? You know?
Mr. Carlson. Yes, 16 or 17 States have something in their
regulations that look something like negotiated risk. They may
call it something different. It may be managed risk. It may be
informed consent. So I think it is confusing to say that, say,
16 States authorize it, and that is shown by this conversation.
I think Robert started by saying, well, it is hard to say what
negotiated risk is.
And this conversation illustrates it because we started
talking about a waiver of liability, and we ended up talking
about a conversation. And those are very different. And I can
say I think the conversation is great. That is obviously
important. I would hope that we could come to consensus on
that.
But that is just light-years away from a consumer signing
an agreement that says you, the service provider, will not be
liable if certain bad things happen. It is hard to imagine any
of us signing that in any other context--in a school context,
in a service context. And again, we know how this happened. I
would suggest that in the long-term care setting, it is usually
the providers that present these agreements, and the consumers
are not in a position to negotiate practically.
I have written a Law Review article on this in the Journal
of Health Care Law and Policy that lists all the states. But I
just want to mention from a legal perspective, if it is a
waiver of liability, legally, it is unenforceable. The only,
only arena in which from a consumer's perspective you can have
a waiver of liability like this is in skydiving or bungee cord
jumping or anything like skiing, downhill skiing.
But going to an assisted living facility is not like
jumping out of an airplane. It can't be, and it isn't legally--
there was a case in Delaware that the facility had what I think
we would recognize as a negotiated risk agreement that stated
that the agreement absolved the facility from ``personal
injuries or damages, even if resulting from negligence,'' and
the contract said that this was in return for the resident
having ``independence, control, and choice'' and ``a higher
quality of life.''
This was negotiated risk, and the resident in this setting
suffered a fall, had irreversible brain damage. In its defense,
the facility put forward this agreement and said, well, these
guys made a choice. They made a contract with us at the front
end and said in return for living in this more home-like
environment with a less institutional setting, they have
released us from liability for these bad outcomes. And the
trial court in this case said it would be unconscionable to
enforce this type of waiver of liability in a consumer setting.
And so, my suggestion on negotiated risk is there needs to
be some real clarity. I think all these States are playing a
little fast and loose by putting these terms out there and
being a little squishy about exactly what they mean. We need
some real clarity.
And if we are talking about a conversation, we should talk
about a conversation. And if we are talking about a waiver of
liability, we should talk about a waiver of liability. But we
shouldn't talk about them both simultaneously without
extricating them from each other.
Mr. Polivka. Eric, I thought it was decided over 10 years
ago that there was no waiver of liability? I thought, my
assumption has been all along that you are talking about a
continuing care planning instrument. You are not talking about
a waiver of liability with a negotiated risk.
I mean, I thought that was decided long ago.
Mr. Carlson. Well, I would like people to be clear about
that. Because what I heard, I think Robert stated it
accurately, which is that classically that is what these
negotiated risk agreements contain. The Law Review article that
I have written cites multiple statements by provider attorneys
and by insurance companies and provider magazines recommending
negotiated risk agreements for exactly this purpose.
And I agree in the public policy discussion when it comes
up. I think people, in defending negotiated risk, say, well, it
has nothing to do with waiver of liability. It is about
negotiation and service planning, and that is why we have this
confusion. We are talking about things without defining them
adequately enough.
If everybody in this room agrees that there shouldn't be
any liability waivers, I think we should write a document and
say no liability waivers, and that would be tremendous.
Mr. Polivka. Well, it has never been found to hold in any
litigation.
Mr. Carlson. Pardon me?
Mr. Jenkens. I think where we are with this right now is I
think there is a role for, as Eric points out, additional
clarity, some standards, and a definition of what is in it and
what is out. So Eric cited a pretty egregious case. I think we
can probably find those cases for almost any subject we would
choose to discuss.
I don't think that means that the concept of negotiating
around risks from a consumer perspective so that they can make
choices about what they are willing to risk or not risk is a
bad one. I think we haven't found perhaps the right vehicle or
at least the right middle ground in that vehicle to do that. It
is a good area, I think, for further development.
Ms. Dentzer. Well, just on that point, as we have about 8
minutes left here, I gather there would be some consensus on
having a conversation go forward on this topic in particular,
whether it is a question of clarification at the Federal level,
whether it is model legislation for the States. Something like
that to do more to standardize these definitions or----
Mr. Jenkens. Well, I think--you know, I think the first
question is, is this important enough? Is there enough of this
going on in the world to actually have that conversation? Eric
and I could talk about this for the rest of our lives. We find
it endlessly interesting.
Ms. Dentzer. Or might there someday be enough of this going
on in the world?
Mr. Polivka. I think there are many other higher
priorities.
Mr. Jenkens. That is what I was going to say. I am not sure
this is a priority among affordable financing, regulatory
issues, et cetera.
Ms. Dentzer. Okay. So in the interest of time, let me jump
back then to the whole discharge area. Any sense of what this
or another group like it could contribute there, or is that
another one that is lower down on the list than, say, the
financing or some of the other issues we talked about? Charley.
Mr. Reed. Yes. One of the things that was touched on quite
a bit, I think it begins with the admission criteria and how it
is disclosed. I think that is the up-front place to start.
But the other thing we haven't touched on very much is the
responsibility that State Medicaid programs and long-term care
programs have in helping out with this. If people really do
spend down and become Medicaid eligible, the State has a
responsibility for that person to help them understand what
their options are and to help them get to those options.
And so, it is no question that the assisted living facility
has a responsibility, but so does the State. I think a lot of
States haven't stepped up to that responsibility yet--that
there is an obligation that States have to help people
understand what their options are and how to actually take
advantage of those options.
Ms. Dentzer. Okay. Well, moving on, let us jump back to our
conversation about financing, sources of Federal funding. There
seemed to be some consensus around having more discussions on
bringing more people, more entities to the table, whether it is
the States, whether it is the Feds, et cetera, to get a better
sense of the sources of financing that could be tapped and how
they can be best utilized.
Fair enough? Is that a fair summation of what there was
clear agreement on? So that would be, if anything, a point of
consensus this group, I think, would put forward.
Moving to the first part of our conversation, which was
around the whole question of what is assisted living anyway?
What are essential services? What is the core philosophy? We,
in that context, began to talk a bit about the notion of a
Federal floor or ceiling. I didn't detect necessarily any
consensus points there on discussing that going forward. But if
there were, that is another recommendation that probably is
worth putting forward.
Any feedback there? Robert.
Mr. Jenkens. I think there is a lot of value in discussing
what a floor should be for the Medicaid-funded programs and
then whether or not there should be a ceiling. And I think
there has been a lot of discussion around that over the years,
the assisted living workgroup initiated by the Special
Committee on Aging, and then the CO has continued that.
So I do think it is worth sorting out what is worth paying
for and what truly brings the values of control and dignity and
privacy to someone who is receiving Medicaid funding. I would
be a strong supporter of that.
Ms. Dentzer. Anyone violently opposed? Larry.
Mr. Polivka. I am sort of two minds about this. I think
that what CMS has laid out has been functional. It has worked
well for a long time for those States that are willing to
pursue expanded funding through their waiver programs for
assisted living.
The problem is, as I see it, and I may be overreacting, but
in looking at long-term care trends, which I do fairly
routinely now, it strikes me that States are really going to be
moving towards managed long-term care designs because of the
fiscal crisis and because the experience of States like Arizona
and Wisconsin in developing their managed long-term care
models. They seem to be cost effective. Some work better than
others. I think Family Care is better than ALTCS.
But what you are going to get with that movement is what
has happened in those States, including Florida to a lesser,
but substantial extent, and that is massive use of assisted
living. That is where the expansion is going to occur with
managed long-term care development, I think, based on the
experience of the States that have already done it in the last
10 years.
As that happens, I think there will be increasing pressure
on State and Federal officials, legislators, and CMS people,
and everybody else to begin to look at the issue of floors and
ceilings from a different perspective than we have since 1990.
And I have been a pretty laissez-faire, had taken a pretty
laissez-faire approach to this for the last 20 years. I think
it has worked well.
But that may be on the cusp of changing, as we see
qualitative change in the design of long-term care systems and
financing over the next 10 years.
Ms. Dentzer. Josh.
Mr. Josh Allen. I would just sort of repeat what I
commented earlier that I think you have to be very careful on
the services side when you start talking about ceilings. Again,
these sort of magical lists or criteria that say, no, this
person is no longer appropriate, I think that flies in the face
of the concept of consumer-directed and autonomy and choice and
decision-making.
So I would just throw out a word of caution about the
concept of putting a ceiling on what that setting may be for
each person.
Ms. Dentzer. And you are the person who wouldn't let
anybody go skydiving, right?
Mr. Josh Allen. I would let Robert go skydiving.
[Laughter.]
Mr. Polivka. But the problem with that is that you are
going to have a lot of pressure to move people out of nursing
homes en masse, and then you run the risk of losing the thing
that really distinguishes assisted living from nursing home
care. You are going to blur the boundaries, and you are going
to lose the quality of life focus that really defines and
justifies the assisted living model.
So ceilings may not be the right way to talk about it,
Josh. But you need to be concerned about at some point with
these massive changes as they occur, what happens to the kinds
of places where people live?
Mr. Josh Allen. Well, but I would argue that many of the
same types of nursing services and quality of nursing services
are, in fact, provided in assisted living that just a short 10
years ago or 20 years ago would have thought to have been only
appropriate in a nursing home. So I don't know that the sign
outside the door necessarily dictates whether or not services
can be provided.
I think what is different is the model on which they are
provided. And the very simple example is you walk into
typically any nursing home in the country, one of the first
things you will see is a very large and expansive nurses
station with hundreds and thousands of pieces of paper and
people in nursing uniforms.
Most large assisted living communities have those same
nurses stations. They are just not there for you to see. They
are hidden behind a wall in a way that is much more comfortable
for the consumer and feels more like a home. So the same
services, many of the same services are being provided.
I don't think saying that just because assisted living
would start to provide those services would make it no longer
assisted living. I think it is how they are provided.
Mr. Jenkens. I think the line is already blurred, and I
think the Green House Project is a good example of that. In
skilled nursing, we learned from assisted living and we brought
it back into skilled nursing. And I think that is a good model,
and I think we should blur the lines as much as possible to
give people choices.
Ms. Dentzer. And as we bring on remote monitoring and other
technologies, things will change even further.
Irene, a quick last comment because we are at 4:00 p.m.
Ms. Collins. I was going to simply say that we have to
remember the whole discussion is centered around the individual
and personal choices.
Ms. Dentzer. An excellent note to end on, lest we think
this is about something else.
Anyway, I want to thank all of you for a terrific
discussion. I believe it is the case that this will not be the
last of the roundtables or square tables the committee holds as
it works its way through these issues.
But thank you very much. It has been a very good and
vigorous discussion, a candid one. And I am sorry we have to
end it here, but we hope to continue going forward, and we will
look forward engaging you all in the future.
Thank you very much.
[Whereupon, at 4:00 p.m., the roundtable was concluded.]
APPENDIX