[Senate Hearing 110-144]
[From the U.S. Government Publishing Office]
S. Hrg. 110-144
COMMUNITY SERVICES AND SUPPORTS:
PLANNING ACROSS THE GENERATIONS
=======================================================================
HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED TENTH CONGRESS
FIRST SESSION
ON
EXAMINING COMMUNITY SERVICES AND SUPPORT, FOCUSING ON MEETING THE LONG-
TERM CARE NEEDS OF SENIORS AND PERSONS WITH DISABILITIES
__________
JULY 10, 2007
__________
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Pensions
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
EDWARD M. KENNEDY, Massachusetts, Chairman
CHRISTOPHER J. DODD, Connecticut MICHAEL B. ENZI, Wyoming,
TOM HARKIN, Iowa JUDD GREGG, New Hampshire
BARBARA A. MIKULSKI, Maryland LAMAR ALEXANDER, Tennessee
JEFF BINGAMAN, New Mexico RICHARD BURR, North Carolina
PATTY MURRAY, Washington JOHNNY ISAKSON, Georgia
JACK REED, Rhode Island LISA MURKOWSKI, Alaska
HILLARY RODHAM CLINTON, New York ORRIN G. HATCH, Utah
BARACK OBAMA, Illinois PAT ROBERTS, Kansas
BERNARD SANDERS (I), Vermont WAYNE ALLARD, Colorado
SHERROD BROWN, Ohio TOM COBURN, M.D., Oklahoma
J. Michael Myers, Staff Director and Chief Counsel
Katherine Brunett McGuire, Minority Staff Director
(ii)
C O N T E N T S
__________
STATEMENTS
TUESDAY, JULY 10, 2007
Page
Kennedy, Hon. Edward M., chairman, Committee on Health,
Education, Labor, and Pensions, opening statement.............. 1
Prepared statement........................................... 2
Enzi, Hon. Michael B., a U.S. Senator from the State of Wyoming,
opening statement.............................................. 4
Prepared statement........................................... 5
Harkin, Hon. Tom, a U.S. Senator from the State of Iowa, opening
statement...................................................... 7
Daniels, Susan M., Ph.D., Daniels and Associates, Washington, DC. 9
Prepared statement........................................... 11
Herring, Monica, Mother of Ellington Herrington, Germantown,
Maryland....................................................... 13
Prepared statement........................................... 15
Faatoafe, Glenda, Home Care Worker, Korean Womens Association,
Lacey, Washington.............................................. 17
Prepared statement........................................... 19
Griffin, Shawn, M.A., Chief Executive Officer, Community Entry
Services, Riverton, Wyoming.................................... 21
Prepared statement........................................... 23
Imparato, Andrew J., President and Chief Executive Officer,
American Association of People With Disabilities, Washington,
DC............................................................. 31
Prepared statement........................................... 34
Fleming, Deborah K., Ph.D., Clinical Professor, University of
Wyoming, College of Health Sciences, Laramie, Wyoming.......... 40
Prepared statement........................................... 41
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.:
.............................................................
Response to Questions of Senator Enzi by:
Susan M. Daniels......................................... 50
Monica Herring........................................... 50
Glenda Faatoafe.......................................... 52
Shawn Griffin............................................ 53
Andrew J. Imparato....................................... 54
Deborah K. Fleming....................................... 55
(iii)
COMMUNITY SERVICES AND SUPPORTS: PLANNING ACROSS THE GENERATIONS
----------
TUESDAY, JULY 10, 2007
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 10:00 a.m. in
Room SD-106, Dirksen Senate Office Building, Hon. Edward M.
Kennedy, chairman of the committee, presiding.
Present: Senators Kennedy, Harkin, and Enzi.
Opening Statement of Senator Kennedy
The Chairman. Good morning. We want to thank all of our
witnesses and we'll come back to an introduction of them and
express our appreciation of them individually. We want to thank
all of our guests that join us here today. It's a very
important issue that we are considering, and I think the wide
variety of groups and individuals that have come from far and
distant places is indication of the importance of the substance
that we are considering here this morning.
Senator Enzi, Tom Harkin, and I were at the door, trying to
help people come in, and then, suddenly the hour of 10 arrived
and we had to start our hearing. But, we're going--we asked our
police officers that are absolutely wonderful individuals--to
do the best they can in making this room available, and
accessible, for so many of our guests that have traveled far
and wide. And I know they are doing their very level best in
doing so, and we're very grateful to them for that.
I'll include my statement in the record. But, let me just
mention a brief word about how I view our situation in our
country.
I was here, in the U.S. Senate, when we passed the Medicare
program. We actually lost the Medicare program in 1964, 8
months later. It passed in 1965. Eighteen Senators changed
their vote. And, for those that are in this room this morning,
ought to understand the power of their vote and political
activity. Because, the principal difference between the vote in
1964 and 1965 was the fact that seniors primarily--some in the
disability groups--went out across this country and said,
``This issue is important. It's a defining issue about how we
are going to treat our seniors in this country.'' And we passed
Medicaid shortly after that. In 1965 we said, ``We are going to
have hospitalizations for those that are elderly. We are going
to have the doctor's piece,'' we didn't include the
prescription drug. We eventually come back to that issue.
That's a different issue for a different time, about how well
we did with that, but we will put that aside, at least we have
addressed that.
Then we saw our march for progress continue when we dealt
with the American with Disabilities Act, and other issues to
get it to work, other kinds of proposals. But what we never
really anticipated is the kind of situation that we're faced
today, where we as a country are so fortunate to have so many
individuals--our parents, our grandparents--who have lived
long, full, wonderful lives, and have had many individuals that
have been facing some kinds of physical and mental challenges.
In the old days they used to call it disabilities, but we're
away from those days and now we're talking about the challenges
that are out there. And how are they going to be able to live
the kind of life of independence and dignity? And have the
variety of choices that men and women and younger people who
are challenged for the variety of reasons of situations that
have arisen during the course of their lifetime. How are they
going to do that? And doesn't our society--aren't we a more
fair--a complete society when we try and develop the process in
the system that reaches that kind of goal?
And, those are general kinds of comments. But I think they
underline what we are really trying to do here. We want to
respect individuals lives--be able to live independently. We
want to respect the rights of choices and for individuals to
maximize their choices, and we want to be able to do that in a
way that's going to preserve independence. We want to make sure
we're going to, obviously, save the Medicaid program as well.
So we have some wonderful individuals that are going to
talk about different aspects, including those issues. And then
we want to thank individuals in the audience who have come.
Going through these hearings today, you might have a few ideas
yourself, jot them down. We want to hear from those that are
out in the audience, maybe you can do it today, or maybe you
can do it when you get home. After you sit through the hearing,
you might feel there are some areas that those Senators didn't
ask about or are not included. These are the kinds of things we
think ought to be given focus and attention as well. We'll go
through those and we will--to the extent possible--make them
part of the record, and try and include those ideas and
suggestions as we move ahead.
I want to thank my colleague and friend, Senator Enzi--we
work with so closely. He has added immensely to all of our
understanding by talking about the challenges that exist in
rural communities. We're going to get to that issue during the
course of our panel this morning. Senator Enzi has had some
wonderful recommendations and suggestions in that area, as well
as the substance of these issues before us and I would like to
ask him to say a word at this time.
Senator Enzi.
[The prepared statement of Senator Kennedy follows:]
Prepared Statement of Senator Kennedy
Thank you all for being here today for this hearing on one
of the most pressing and personal issues our Nation will face
over the next decade--the crisis of meeting the needs of
seniors and persons with disabilities in ways that promote
independence and choice, and help families.
A fair and civilized society is judged on how it treats its
most vulnerable citizens. Today in America, millions of senior
citizens and persons with disabilities still struggle to obtain
the support they need to live fulfilling and productive lives
in their communities.
Many of them are members of the Greatest Generation, and
it's shameful that we are failing to provide them with a
solution for long-term care worthy of their immense
contributions to our history.
Many are citizens who worked hard for themselves, their
families and their communities, and became disabled as a result
of an illness or injury that was not anticipated.
Many are young adults who have spent over 20 years in our
educational system to become participating members of their
community, but they still need support to make that transition
successful.
The issue is about all of us, and those of you here today
are the proof that ``disabled does not mean unable.''
We made progress in past decades through Social Security,
Medicare, Medicaid, and the Americans with Disabilities Act.
But countless senior citizens and persons with disabilities
still live in poverty with few choices on how they live their
lives. That was never the intent of the public assistance
programs.
Ten million adults in America currently need long-term
services and support. Many are capable, and are eager to live
full lives in their communities, but they are forced to give up
their independence and self-sufficiency in order to qualify for
Medicaid--the only program that can support them because they
are too young for Medicare and the barriers to private
insurance are too high and too costly.
Our current system forces people into institutions
prematurely. It requires them to become impoverished before
becoming eligible for the help they need. It fails to provide
realistic opportunities for personal life planning, and fails
to give families the flexibility to help their family members
in need.
Senator Harkin and I have two pieces of legislation that
TOGETHER can both improve the current Medicaid system by
allowing more individual choice AND create a new voluntary
national insurance program that will promote independence,
choice, personal responsibility, and quality services for those
who need it.
It will empower consumers to decide themselves how this
assistance will be spent--for transportation so they can stay
employed, for a ramp to make their home more accessible, or for
a personal care attendant or a family caregiver.
It will help keep families together--instead of being torn
apart by obstacles that discourage them from staying at home.
It will save on the mushrooming costs of Medicaid, the
Nation's primary insurer of long-term care services, by
offering an alternative for those who can work while preserving
Medicaid for those who really need it.
We need a new approach to restore independence and choice
for millions of our citizens, and enable them to take greater
control of their lives.
Your testimony here today will give us a deeper
understanding of the challenge, and inform us about what steps
we must take as a nation to meet it.
It's time to respect the rights and dignity of all
Americans, and I thank you all for being here today to continue
that fight.
Opening Statement of Senator Enzi
Senator Enzi. Thank you, Mr. Chairman, and I appreciate the
great summary that you did, and the encouragement for people to
share their ideas with us. It's a key thing to have as many
people as possible, sharing ideas. We have some people that
present their testimony, and people have reactions to that
testimony. And sometimes we don't get those reactions, and I'm
sure the Chairman will let you know through what mechanism you
can get those ideas to us, as well.
And I want to thank the Chairman for his leadership on this
important issue. He's been working on it for years and years
along with Senator Harkin.
And I also want to thank our witnesses today for taking
time out of their busy schedules and, in some cases, traveling
many miles to get here. I particularly want to thank Shawn
Griffin, the Executive Director of the Community Entry Services
in Riverton, Wyoming, and Dr. Deborah Fleming, the Clinical
Professor of Medical Education and Public Health at the
University of Wyoming College of Health Sciences in Laramie,
Wyoming--for traveling here from my home State. It's a pleasure
to welcome all of you to the hearing.
Today's hearing will followup on what we discussed during a
hearing in April 2005, regarding the need and processes related
to advance directives, living wills, health care, and treatment
of those who cannot advocate for themselves. The problems and
issues we defined and identified at that hearing still exist,
and must be addressed.
Today we will be discussing long-term care, community
services, and support for millions of people who are aging, or
who have disabilities. Most of these individuals would be able
to participate in society if they had some additional
assistance, so they are able to maintain and perform the daily
living skills so many of us take for granted. Many Americans do
not have the resource necessary to pay for out-of-pocket, long-
term care in an institution.
According to the Congressional Budget Office, fewer than 7
percent of seniors have annual incomes equal to or greater than
the annual cost of a nursing home stay. But there are other
less costly options available to assist individuals who do not
need institutional care, but do need extra help and support.
These less costly, community-based services and supports are
being actively pursued and funded through provisions of the
now-reauthorized Older Americans Act that we passed last year.
Through programs funded by the Administration on Aging,
emphasis is placed on empowering persons with disabilities,
older people, their families, and other consumers to make
informed decisions about, and be able to easily access,
existing health and long-term care options. One of the methods
for empowerment is to provide streamlined access to health and
long-term care through Aging and Disability Resource Center
Programs, ADRCs. A grantee administering an ADRC in my State
will describe this initiative in her testimony.
ADRCs provide individuals with disabilities, and seniors,
and their families with information on how they may remain in
their own homes, with a high quality of life, for as long as
possible, through the provision of home and community-based
services, including supports for family caregivers.
In short, the goal is to empower people to live with
dignity in their own homes, rather than in an institution. The
availability of transportation, housing, and the personal care
workforce is another topic that will be discussed today, by a
provider of services to persons with disabilities, and the
aging population of Wyoming.
I hope this hearing will make us all realize that we need
to think creatively and figure out ways in which all Americans
will be able to access the community services and supports they
need, at the price that will fit in their individual budgets.
We should not require people to become poor in order to access
public programs for the help they need to remain as independent
as possible.
Finally, I want to re-state that two of our witnesses will
tell us about the success of programs in Wyoming to create a
one-stop shopping resource center, and enhance support services
for the aging and disabled citizens of Wyoming, as well as
other communities--particularly rural communities--throughout
the country.
Again, I want to thank the witnesses for their
participation in today's hearing, and I look forward to the
testimony, and I do request that a fuller, more extensive
statement be included in the record.
[The prepared statement of Senator Enzi follows:]
Prepared Statement of Senator Enzi
Good morning. I would like to first of all thank Chairman
Kennedy for his leadership on this important issue and for
holding this hearing. I would also like to thank our witnesses
for taking time out of your schedules to be with us. I
particularly want to thank Shawn Griffin, Executive Director of
Community Entry Services in Riverton, Wyoming and Dr. Deborah
Fleming, Clinical Professor of Medical Education and Public
Health at the UW College of Health Sciences in Laramie, for
traveling here from my home State. It's a pleasure to welcome
all of you to our hearing.
Today's hearing will followup on what we discussed during a
hearing that we held in April of 2005 regarding the need for
and processes related to advance directives, living wills,
health care, and treatment for those who cannot advocate for
themselves. The problems and issues we defined and identified
at that hearing still exist and must be addressed. Today we
will be discussing long-term care, community services and
supports for millions of people who are aging or who have
disabilities. Most of these individuals will be able to
participate in society if they have some additional assistance
so they are able to maintain and perform the daily living
skills so many of us take for granted.
Many Americans do not have the resources necessary to pay
out of pocket for long-term care in an institution. According
to the Congressional Budget Office fewer than 7 percent of
seniors have annual incomes equal to or greater than the annual
cost of a nursing home stay. But there are other, less costly
options available to assist individuals that do not need
institutional care but do need some extra help and support.
These less costly, community-based services and supports are
being actively pursued and funded through provisions of the
reauthorized Older Americans Act that we passed last year.
Through programs funded by the Administration on Aging,
emphasis is placed on empowering persons with disabilities,
older people, their families, and other consumers to make
informed decisions about, and to be able to easily access,
existing health and long-term care options.
One of the methods for empowerment is to provide
streamlined access to health and long-term care through Aging
and Disability Resource Center programs (ADRCs). A grantee
administering an ADRC in my State will describe this initiative
in her testimony. ADRCs provide individuals with disabilities
and seniors and their families with information on how they may
remain in their own homes with a high quality of life for as
long as possible through the provision of home and community-
based services, including supports for family caregivers. In
short, the goal is to empower people to live with dignity in
their own homes rather than in an institution.
The availability of transportation, housing and a personal
care workforce is another topic that will be discussed today by
a provider of services to persons with disabilities and aging
population of Wyoming.
I hope this hearing will make all of us realize that we
need to think creatively and figure out ways in which all
Americans will be able to access the community services and
supports they need at a price that will fit into their
individual budgets. We should not require people to become poor
to access public programs for the help they need to remain as
independent as possible.
As we all know, Medicare and Medicaid are the largest
funders of long-term care. I am mindful that current
entitlement programs like Social Security, Medicare and
Medicaid face challenges to their solvency that need to be
addressed on a bipartisan basis. The 2007 Annual Report by the
Social Security and Medicare Boards of Trustees warn that
Medicare's Hospital Insurance is already expected to pay out
more in hospital benefits this year than it received in taxes
and other dedicated revenues.
Moreover, Medicare Supplementary Medical Insurance and the
new prescription drug benefit will continue to require general
revenue financing and charges on beneficiaries that will grow
faster than the economy and beneficiary incomes over time. This
will place more and more pressure on the Federal budget. The
challenge of providing long-term care for baby boomers and
beyond should be a part of any solution we propose involving
the solvency of those programs which are the primary payers for
long-term care.
Finally, and on a brighter note, I want to reiterate that
two of our witnesses will tell us about the success of programs
in Wyoming to create a one-stop shopping resource center and
enhance support services for the aging and disabled citizens of
Wyoming as well as other communities throughout the country.
Again, I want to thank the witnesses for their
participation in today's hearing. I look forward to their
testimony.
The Chairman. Thank you very much, Senator Enzi.
It's a real pleasure to welcome a friend and a leader on so
much of what is important in this country in terms of knocking
down the walls of discrimination on the basis of disability.
And Tom Harkin has been our leader on this committee, and a
leader in the Congress and Senate--has made such an
extraordinary difference in the quality of life of so many of
those that are challenged.
We are not only great friends, but we work very closely
together and continue to work closely together. And certainly
with all of us here--with this panel--I see my, our friend,
Sherry Brown here from Ohio--we have every intention of getting
something done. We are not here just to listen, we are here to
act, as well.
So, we thank Tom for all of his good work, and all of his
efforts. And we would love to hear a word from him now.
Statement of Senator Harkin
Senator Harkin. Well, thank you very much, Mr. Chairman,
for those kind remarks and for holding this hearing today on an
issue of extraordinary importance to millions of Americans.
I also want to thank you, again publicly, for your great
leadership over all these years. And so many issues that affect
the human needs of our people in this country, whether it's
health care, whether it's food and nutrition, or people with
disabilities. We all, kind of, fall into the wake of Senator
Ted Kennedy, because he's always been in the front of all of
these fights. And I'm just privileged to share that friendship
with you, Senator Kennedy, and to be a member of your
committee.
I just want to recognize a few people who are here today. I
hate to single out people, but there are a few that I would
like to single out.
First of all, Andy Imparato, who is going to be one of our
witnesses, said this is his first time testifying here. I
didn't realize that. He was our counsel on this committee, on
the Subcommittee on Disability Policy, back in the early 1990s,
and is now President and CEO of the American Association of
Persons with Disabilities.
We never would have gotten the ADA passed had it not been
for AAPD. I remember that, just like it was yesterday when I
got a call from Kafka, back there, and he said, ``You might
want to turn on your television tonight.'' And I said, ``Why,
what's going to happen?'' and he said, ``Well, we're going to
do something at the Capitol.'' And I got intrigued by this, you
know, I knew about AAPD, I knew about Bob. I've gotten to know
him better over the years, to be sure. But that was the time
when AADP wheeled up to the steps of the Capitol, and got out
of their wheelchairs, and crawled up the steps of the Capitol.
And that made the evening news all over America. To me--and
that just brought home to Americans everywhere what we were
trying to do. And that just gave that final impulse, I think,
to get the bill on the floor and to get it moving.
Well, there are a lot of other stories attendant to the
passage of ADA, but I wanted to single that out, and just thank
Bob Kafka for his leadership and for all of you at AAPD.
Senator Kennedy has so eloquently said--you just can't give up
on these things, you've just got to keep at it and keep at it,
and keep at it, and keep at it. And we've been trying to get
MiCASA passed now for 10 years or more. And we weren't quite
able to do it.
Well, now we've got the Community Choice Act the successor
of that bill. And we've got some new information, thanks again
to Mitchell Laplant, who is over here today. Mitch is an
Associate Professor at the University of California. He's got
an article published this month titled ``Estimating the Expense
of a Mandatory Home and Community-Based Personal Assistant
Services Benefit Under Medicaid.''
Well, in this article, Dr. Laplant estimates the cost of
personal care attendant services under Medicaid to be $1.4
billion to $3.7 billion annually. Well, now that's good news,
because as you know the often-sited CBO estimate that was sent
to, presented to Newt Gingrich in 1997 was $10 to $20 billion.
I also might just add a little note here that I was meeting
once with some AAPD people and Bob in the rotunda, the Capitol
one day, when who should walk by but the newly-elected Speaker
of the House, Newt Gingrich. And Newt saw the people in the
wheelchairs, and saw me, and came over. That was his big
mistake.
[Laughter.]
But, not really. Because, I introduced him to Bob and
others, and he wanted to know what they were talking about, and
what we were talking about was personal attendant services, and
getting people out of nursing homes, and into the community--
MiCASA, basically. And, wouldn't you know it, Newt Gingrich
became the chief sponsor of MiCASA in the House.
So, it just shows you--never give up. And keep focusing,
because even today he is still a supporter, by the way, of what
we now call a Community Choice Act, of getting people out of
nursing homes in the community.
Well, I also wanted to recognize people at NCIL, the
National Council on Independent Living, their conference is
here this week. I know you are having a march down to the
Capitol on one of the hottest days of the year. But, NCIL's
staff members--John Lancaster, Elizabeth Leaf, all of you, for
all of your help on this.
When we passed ADA, Mr. Chairman, we had four goals. There
were four underpinnings, so to speak, of the ADA: equal
opportunity, full participation, independent living and
economic self-
sufficiency. Well, some of those we've attained more than
others. But the two that are woefully behind are independent
living, and economic self-sufficiency. It is a shame that we
still have over 60 percent of the people with disabilities
underemployed, or unemployed in our country, this many years
after the passing of ADA.
To me, the single-most important thing to getting people
into jobs--people with disabilities into the workplaces, is to
get them out of nursing homes. And to get them out of being
warehoused, and to get them into independent living. Because
that kind of independence then supports people getting into the
workforce, and getting the kind of transportation they need,
and all the other things. So, the independent living really has
to come first, and we have to get this done.
Community-based services, I believe, will not only
transform the lives of people with disabilities, they can live
with families and friends, not with strangers. They can be the
neighbor down the street, not the person warehoused down the
hall. And I don't think this is asking too much. This is just
the barest thing that we ought to ask for every human being.
So, again, we've had some success with your help. We got
Money Follows the Person passed last year, CMS is now awarding
the grant, but now we have got to get the Community Choice Act
passed. That's what every person with a disability wants and
deserves, as my nephew Kelly proves every day.
The costs of the Community Choice Act would be mostly
offset by the benefits of having people with disabilities who
are employed, like Kelly is, paying taxes and contributing to
our economy. Now, he gets it because he was injured in the
service. So he has all of the veterans' benefits. He has his
personal attendant services because he was injured in the
military. But that allowed him to have his own business, start
his own business, get an education, go to work everyday, pay
taxes. Well, if it's good enough for my nephew, it ought to be
good enough for everybody else in this country, whether they're
a GI, an ex-veteran, or not--that ought to be the standard for
every person with a disability in this country, and that's what
the Community Choice Act is about. I just wanted to thank you,
Mr. Chairman, and thank you, Senator Enzi, again, for your help
and your support through all of these efforts to advance this
cause, and hopefully we will get it done this year.
Thank you very much, Mr. Chairman.
The Chairman. Very good. Thank you, Senator Harkin. We'll
move on. Our first witness, Susan Daniels, nationally-
recognized expert, spokesperson, employment, healthcare,
disability policy. Dr. Daniels had 15 years of highly
successful executive experience in leading large Federal-State
agents, through policy development, organization change, custom
service intervention. Dr. Daniels served as a Deputy
Commissioner for Disability and Income Programs at the Social
Security Administration in 1994 to 2000 where she spearheaded
the disability and employment reforms activities, resulting in
the passage of the Ticket to Work Incentive Improvement Act of
1999, and in 2004 she was named as the Henry Betts Laureate.
Dr. Daniels, we want to thank you very much. We appreciate
your presence here, and look forward to your comments.
STATEMENT OF SUSAN M. DANIELS, PH.D., DANIELS AND ASSOCIATES,
WASHINGTON, DC.
Ms. Daniels. Thank you, Senator. I am delighted to be here
today. Thank you for the opportunity to see many of you again.
I'm not going to regale you today with all of the numbers about
whose elderly, and who needs community support, and how many
there are, and how big that population is going to be. You
don't need to hear all of that. Mitchell Laplant is here, and
he'll tell you, that is a sizable number of people.
But, I want to acquaint you with two people that I know.
And, because I think they are illustrative of why we need the
kind of action you are going to take.
In 1949, my mother discovered that her youngest child, me,
had polio. And she proceeded to act on that in a variety of
wonderful ways, including making sure that I got an education,
an opportunity to live in a community, to go to the same school
as my brothers and sister, to participate in my community life,
and to have--in fact--a life.
When she turned 80, we gave a big party, a big shindig for
my mom. It was very much fun. And, I want to say that at that
time she was the sharpest knife in the drawer. She could run
rings around all of us, more energy, more happiness, and more
commitment than you can ever imagine in a human being.
But, shortly after the 80th birthday, we noticed that Mom
was losing a little bit of some of her abilities. In fact, at
82 she decided that she could no longer bring communion to the
old people in the parish, that some younger people should be
doing that instead of her. She took on helping several of the
younger families on her block where she had lived 60 years, one
of them going to medical school. Mom decided it was a good
thing for her to babysit one afternoon a week for their infant
child. Then she decided that she couldn't drive any more, and
luckily my brother Harry stepped in, and started driving her
around. We all felt a lot safer.
Mom fell down when she was 84 and broke her arm. Well, I
have to tell you, she was at a gambling casino. But, it was a
break, nevertheless, and my sister Mary flew in from North
Carolina to take care of her, and help her as she recovered
from that broken arm.
I always said, ``Mama, try to stay out of the gambling
bawlers, it's not safe there.'' Well, my mother died about a
week before Katrina, in New Orleans. That morning that she
died--and she got a wonderful death, a fast and painless one.
She had gotten up out of her own bed, on the block where she
had lived for over 60 years. She put on her own clothes with a
little help, and my brother Harry helped her to the car, and
she went to get a medical test. And before that test was taken
she had an aneurysm and died. We always say in our family,
``Mama finally got what she deserved. Something easy and
painless.''
We were lucky. We were, all of us, lucky to have that woman
in our lives. And as her needs increased, she was lucky because
we had no small children at home. All of us were professionals.
Where it was necessary we could step in and provide her with
the care that she needed. It was our greatest pleasure to do
that for her.
But, Senators, luck is not a method. Lucky we were, but we
could have been unlucky. She could have had an aneurysm that
resulted in a stroke and she would have been in the hospital,
or a nursing home for years. We did the best we could, and we
were happy to do it. It is a remarkable thing in this country
that we have not committed ourselves to the care that our
parents, our siblings, our friends, really need to have a life.
And we asked them to depend upon all kinds of other people to
get the things that they need.
It's time for this to stop. It's embarrassing to live in a
country with the riches we have, with the thoughtfulness about
liberty that we have, and with the history of caring for one
another, to see so many people living in situations that you
would not tolerate yourself.
So, I ask you to renew--and I know it's a renewal of your
political will--to stand back the naysayers. You know, as well
as the people in this room know, that young and old, when they
need help, need it desperately. And nothing is more undignified
than being unable to care for your personal needs.
Please consider these people. Consider all of the people
who would be otherwise productively engaged, just if they had
someone to help them take a shower and get on their wheels.
Thank you so much for listening to the story about my
wonderful mother, and for renewing your dedication to this. I
think you have a lot of supporters. And I know that I myself
will be one of them.
Two weeks ago I came upon a young lady that I see often in
my neighborhood. She's in a wheelchair, she's about 28 years
old. And she hasn't been as lucky as my mother was.
A little bit later I was in front of the building walking
my little dog, Lucy, and her boss came out of the building and
said, ``Do you know of any place she could get some personal
assistance?'' I said, ``Yes, I know. I know several places, but
you would have to hire them.''
This young lady I saw over a 2-week period frequently
getting in and out of a van taking her to and from work. About
a month later, she was no longer coming to and from work. She
had been fired, and I have to say she was fired because she
smelled awfully bad. And she did, I have to admit. I talked to
her several times. But she couldn't afford to have a job, and
pay a personal assistant to help her with the simple thing of
getting clean and ready for work.
So now, we have another person on SSI, or SSDI, unable to
work, not working--a person who wanted to work, and did work.
She was unlucky, like most of us.
Thank you.
[The prepared statement of Ms. Daniels follows:]
Prepared Statement of Susan M. Daniels
Good morning, Senators. Thank you for the opportunity to talk to
you about the situation of long-term-care across the age span and to
set out some ideas for how the system can be saved and improved.
The long-term care delivery system is a mess. The Census Bureau
estimates that in 2050 there will be two and a half times more people
age 65 or over. At the same time, societal trends such as the mobility
of families and the growing rate of working women reduce the previously
available family caregivers. Paid/professional caregivers are poorly
paid, receive few benefits including insurance for their own health
care, receive inadequate training, all resulting in personnel shortages
that will only worsen with time.
PRINCIPLES FOR LONG-TERM CARE REFORM
As a first step in addressing the current problems in the long-term
care system, the CMS's Policy Council \1\ developed a set of principles
for long-term care reform. These principles include:
---------------------------------------------------------------------------
\1\ Policy Council Document September 28, 2006 Long-Term Care
Reform Plan.
Increase consumer choice and control for older
individuals, persons with disabilities and chronic illnesses of any
age, their family members and caregivers.
Ensure access to an appropriate array of institutional and
home and community-based long-term supports.
Reverse the institutional bias in long-term care services.
On a similar track, The National Academy of Social Insurance (NASI)
is calling for fundamental reforms in financing long-term care.\2\ The
panel's report finds a high level of public concern about paying for
long-term care and widespread discontent with the current system of
financing.
---------------------------------------------------------------------------
\2\ Developing a Better Long-Term Care Policy: A Vision and
Strategy for America's Future November 2005 Report of the Long-Term
Care Study Panel National Academy of Social Insurance Study Panel on
Long-Term Care, Co-Chairs Sheila P. Burke and Judith Feder.
``Members of the panel feel strongly that a better long-term
care system is essential to enable all Americans, regardless of
age or disability, to participate fully in our society. The
current long-term care system falls far short of meeting
reasonable expectations. Achieving a system that meets
individual needs and distributes costs equitably will require
greater Federal involvement and financing.''--Sheila P. Burke,
the panel's co-chair.
SHORTCOMINGS OF THE CURRENT LONG-TERM CARE SYSTEM
The current long-term care system falls far short of meeting
reasonable expectations in several ways:
Unmet Needs. Many people receive inadequate care.
Nationally, 20 percent of people living in the community and needing
services get less help than they need. As a result they are more likely
to fall, soil themselves, or be unable to bathe or eat.
Burden on Caregivers. Unpaid caregivers play a critical
role in the system but often pay an economic, physical, and emotional
toll. Workers in the formal long-term care system labor under difficult
conditions and low wages, frequently without fringe benefits.
Financial Jeopardy. The cost of long-term care can impose
financial hardship or even spell financial catastrophe for many
families. Few people have any type of insurance against the expense of
long-term care, which can reach $26,000 a year at home and more than
twice that amount in an institution.
Limitations in Medicaid. The Federal-State Medicaid
program finances long-term care only for those who are or have become
impoverished. Its benefits vary widely from State to State, and it
requires some people who need help to move to institutions, when they
would much rather live in their communities.
Quality Problems. Serious quality problems persist in some
nursing homes, partly as a result of inadequate staffing. Quality in
non-institutional settings is also a concern.
Demographic Challenges. The long-term care system is
unprepared to meet the demands that the large baby boom generation will
impose upon it. The coming demographic shift will also exacerbate
staffing shortages.
Because the need for long-term care is a risk, not a certainty, the
panel recommended that it should be handled through insurance, like
other unpredictable and potentially catastrophic events. The study
panel did not endorse one particular solution but I do: a payroll based
universal access to a basic, limited long-term care benefit.
The Panel recommended three tenets to guide the long-term care
system of the future:
Meeting Individual Needs. The needs of individuals should
determine the kinds of services available.
Preserving Autonomy. Service delivery should preserve the
autonomy of the people receiving services.
Promoting Equity. The costs of services should be shared
equitably among individuals, families, and the society in which we
live, and services should be similarly available and affordable
regardless of the State in which a person lives.
Nearly 10 million Americans need help with basic tasks of living,
such as bathing, eating, dressing, or walking, or help with other
activities that maintain their independence, such as shopping, cooking,
or cleaning. More than 80 percent of those who need care live in their
communities, not in nursing homes, and nearly 40 percent of them are
under age 65.
You are taking up the cause of long-term care, building coalitions
for change, and taking advantage of opportunities for action. We all
acknowledge fiscal pressures facing Federal and State Governments. The
impending retirement of the baby-boom generation will add to already
large demands on the major Federal entitlement programs. As you grapple
with these budgetary issues, meeting the needs of the elderly and the
disabled for long-term care should have an important place on the
agenda and we should not shrink from providing the innovations that
will be required.
Thank you.
The Chairman. Thank you very much Susan. We'll come back.
I mentioned earlier about welcoming comments, and I was
reminded by our excellent staff that we want to ask those who
are watching us on television, they can e-mail their comments
to share with the committee. And the e-mail address is
community
feedback--that's all one word--communityfeedback@help. That's
our committee, Health, Education, Labor, Pensions. So, it's
[email protected]. I'll repeat that later on.
Our next witness, we're joined by Senator Murkowski, we
thank her very much for joining with us.
Monica Herring is the single parent of a 14-year-old son
with significant special needs. Ellington Mallory, Ms.
Herring's son, was diagnosed at birth with Edwards Syndrome,
which affected him with multiple physical and mental
disabilities.
A native of Washington metropolitan area--Ms. Herring has
resided in Maryland since 1975--on Ellington's birth at
Southern Maryland Hospital, soon learned that as a parent of a
child with complex medical and developmental requirements, she
would have to become not only the primary caregiver, but also
an active advocate on his behalf, and has done so nobly. And we
are very grateful to her for sharing this life experience with
us, so that we can benefit from that experience and hopefully
help and assist others in our society to give the kind of
inspired help and assistance that you've been able to give.
Monica.
STATEMENT OF MONICA HERRING, MOTHER OF ELLINGTON HERRING,
GERMANTOWN, MARYLAND
Ms. Herring. Good morning, Mr. Chairman, Ranking Member and
members of the committee. Thank you for convening this hearing
on the important topic of long-term care, community services,
and supports for individuals with disabilities.
My name is Monica Herring, and I am honored to speak to you
as a parent and caregiver of a young man who was born with
significant physical and mental disabilities. My intent today
is to share with you my vision for my son's future, driven by--
what I believe--are his likes, his wants, and needs. I also
want to share with you my fears, as I face this inevitable part
of our journey. My primary fear is that the vision I have for
him, the goals I have strived to achieve with him, may not
happen as I had hoped.
As I speak to you, my son Ellington is now age 14, he and I
are embarking on a significant and difficult phase of our life
journey together. In fact, we are beginning to plan for his
transition to adulthood.
From very early on in his life, Ellington participated in
the Maryland Model Waiver Program. Through this program he has
received all of the essential medical, health, therapeutic,
nutritional, and rehabilitation services he needs to be fully a
part of our family and our community.
The Model Waiver is a home and community-based waiver. In
Maryland, we are fortunate to have, through this program, chair
coordination through the coordinating center to help us with
eligibility--not only for the waiver program--but also for
access to the variety of community supports that have meant so
much to me in my effort to provide him with a good quality of
life.
It is my dream, my hope, my expectation that Ellington will
have the opportunity to do the following--participate fully in
community life. Community life is independent living in a
community of his choice, with a roommate of his choice, access
to community resources that are available to all individuals,
participation in community activities that allow for social
interaction and can foster the development of new
relationships, and securing supportive employment that would
allow him to give back to the community.
Today, Ellington enjoys times out in the community,
shopping at the local grocery, trips to the shopping mall,
strolls in community, attending family and friend gatherings,
his regular appointments to the barber, going to the movies or
attending church worship services. I cannot contemplate the
idea that my son would not have this option, that he would be
considered for a facility or an institution, or would not have
the freedom to make his own choices in life.
Next, is to receive funded, quality support services.
Ellington, at birth, was given up to 5 years to survive, with
no assurance of what his progress, or accomplishments would be.
I think his appearance here today is testament to the value of
quality support services.
With this being said, I ask myself, ``Are my goals
reasonable and attainable, taking into consideration
Ellington's multiple disabilities, and daily supports needs?''
And the answer is ``yes, yes.'' However, listening to the buzz
around current State and Federal disability issues, and the
voices of family members and service providers, I have
developed real fears about whether the innovative support
systems put in place over the last decade or so will
accommodate him.
Will there be necessary changes in response to increased
enrollment, due to the families' willingness to offer
independence to their children? Will housing--accessible and
affordable--be available for him? Will the changing perspective
of the major players in long-term care financing, Federal and
State Government give up on the notion of choice, inclusion and
independence? Will they find these ideas to challenge and to
put in place, despite the fact that maintaining this
philosophical approach can truly save costs, while doing the
right thing for people with complex needs and disabilities.
The concerns that I bring to this committee today are
ongoing struggles to build capacity for inclusion of
individuals with disabilities in the community, resulting in
families making undesirable placement decisions, such as in
nursing homes or assisted living facilities. The tremendous
task of navigating a system that is highly complex, confusing,
and often intimidating. Some programs income and asset
restrictions that can prevent an individual's access to
appropriate services, supportive employment, and other
community support services that must be expanded, and
adequately funded so that individuals with the right supports
will be ultimately successful and achieve as best he or she
can.
In closing, I urge you to examine the long-term care system
as it currently exists carefully, because the families of
tomorrow--such as myself--who will need access, will also need
to be assured that the principles that people with disabilities
have fought long and hard for can be a reality and not an
unrealized dream. These principles include the idea that home
is better than a nursing home. That people with disabilities
are best able to articulate their needs, their desires, their
aspirations. That even those individuals most affected by
chronic illnesses and disabilities have skills, and gifts, that
are theirs alone to give. That there is no disability that is
too severe to keep people away from their homes, community, and
families when the appropriate supports are provided and that
there is no one who can't benefit--from being respected, from
being included, from being valued, from being loved.
Thank you.
[The prepared statement of Ms. Herring follows:]
Prepared Statement of Monica Herring
Good Morning Mr. Chairman, Ranking Member and Members of the
Subcommittee, thank you for convening this hearing on the important
topic of long-term care, community services, and supports for
individuals with disabilities. My name is Monica Herring and I am
honored to speak to you as the parent and caregiver of a young man who
was born with significant physical and mental disabilities.
As I speak to you, my son Ellington is now aged 14. He and I are
embarking on a significant and difficult phase of our life journey
together. In fact, we are beginning to plan for his transition to
adulthood. As a maturing young man, he--and I too--are facing an
environment that is as yet unknown to us. Although, I am certain to
find a new and very complex set of access and eligibility issues,
questions about service delivery, and a whole new way to navigate
systems and locate essential services concerns me most.
My intent today is to share with you my vision for my son's future
driven by what I believe are his likes, wants, and needs. I also want
to share with you my fears as I face this inevitable part of our
journey. My primary fear is that the vision I have for him, the goals I
have strived to achieve with him, may not happen as I had hoped.
From very early on in his life, Ellington participated in the
Maryland Model Waver program. Through this program he has received all
of the essential medical, health, therapeutic, nutritional and
rehabilitation services he needs to be fully a part of our family and
our community. The Model Waiver is a home and community-based waiver.
In Maryland, we are fortunate to have, through this program care,
coordination through The Coordinating Center to help us with
eligibility not only for the waiver program, but also for access to a
variety of community supports that have meant so much to me in my
efforts to provide him with a good quality of life. Currently,
Ellington attends Longview School in Germantown, Maryland where we
live. His school program, like his health plan, is individualized to
his needs--which are considerable. As his mother, I have significant
input into the planning and implementation of his program. The services
that he receives include care and service coordination, private duty
nursing, respite services, and school-based occupational, speech and
language, physical therapy, and vocational services.
In plotting the course for what I hope to be a seamless transition,
I am striving to address not only his immediate needs, but also to lay
the foundation for the support of long-term life goals. It is my dream,
hope, and expectation that Ellington will have the opportunity to do
the following:
(1) Participate fully in community life. Community life is
independent living in the community of his choice with a roommate of
his choice, access to community resources that are available to all
individuals, participation in community activities that allow for
social interactions and can foster the development of new
relationships, and securing supportive employment that would allow him
to give back to the community. Today Ellington enjoys times out in the
community whether it's shopping at the local grocery, trips to the
shopping mall, strolls in the community, attending family and friend
gatherings, his regular appointments to the barber, going to the movies
or attending church worship service. He thrives from the experience and
exposure. I can not contemplate the idea that my son would not have
this option, that he would be considered for a facility or institution,
or would not have the freedom to make his own choices in life.
(2) Receive funded quality support services backed by service
providers that are adequately compensated; certified; educated enough
about across-public agency funding and private funding resources that
will maximize use of all available resources without jeopardizing his
needed benefits; that are well trained in quality assurance and
compliance monitoring Federal and State regulation and guidelines; and
operate with the understanding that all people are valued--those
needing the supports and those helping to provide it. Ellington at
birth was given up to 5 years to survive with no assurance of what his
progress or accomplishments would be. I think his appearance here today
is testament to the value of quality support services.
One of the major issues that concern me--especially since Ellington
has come so far--is the fact that there is a dearth of expert attendant
care providers who have little or no training in the diverse needs of
the consumers they serve, and poor compensation for people who provide
such a necessary service to the most vulnerable among us. With this
being said, I ask myself are my goals reasonable and obtainable, taking
into consideration Ellington's, multiple disabilities and daily support
needs? And the answer is yes, yes. However, listening to the buzz
around current State and Federal disability issues and the voices of
family members and service providers, I have developed real fears about
whether the innovative support systems put in place over the last
decade or so will accommodate him.
Will there be the necessary changes in response to
increased enrollment due to families' willingness to offer independence
to their children?
Will there be a track record of program successes and
failures leading to new best practices designed for young people like
my son?
Will housing, accessible and affordable, be available for
him?
Will the changing perspective of the major players in
long-term care financing (Federal and State Government) give up on the
notions of choice, inclusion, and independence? Will they find these
ideas too challenging to put in place, despite the fact that
maintaining this philosophical approach can truly save cost while doing
the right thing for people with complex needs and disability?
And what about the families, the self advocates and the
advocacy organizations--will they be able to stand firm for the
fundamental rights of all people with disabilities?
The concerns that I bring to this committee today are:
(1) Inadequate compensation and training for direct care staff
resulting in an increased chance of hiring unqualified staff and
incidences negatively affecting the health and safety of the individual
in their care;
(2) On-going struggles to build capacity for inclusion of
individuals with disabilities in the community resulting in families
making undesirable placement decisions, such as in nursing homes or
assisted living facilities;
(3) The tremendous tasks of navigating a system that is highly
complex, confusing, and often intimidating;
(4) Some programs income and asset restrictions that can prevent an
individual's access to appropriate services.
(5) Supportive Employment and other community support services that
must be expanded and adequately funded so that the individual--with the
right supports--will be ultimately successful and achieve as best as
he/she can.
(6) Day programs that are essentially day care for adults that
offer little besides supervision, when people attending the program
need to get meaningful services to build on the skills that they have
and provide them with community experiences to enhance there lives.
In closing, I urge you to examine the long-term care system as it
currently exists carefully. Like so many aspects of health care in the
United States, it is fragmented and often managed by people who are not
committed to the principles that people with disabilities have fought
for long and hard. These principles include the ideas:
That home is better than a nursing home.
That people with disabilities are best able to articulate
their needs, their desires, their aspirations.
That even those individuals most affected by chronic
illnesses and disabilities have skills and gifts that are theirs alone
to give.
That there is no disability that is too severe to keep
people away from their homes, community, and families when the
appropriate supports are provided.
That there is no one who can't benefit from being
respected, from being included, from being valued, from being loved.
The Chairman. Thank you very much, Monica.
I want to tell you that Ellington here--I've been watching
him--he's got a great smile. And, he has been watching our
wonderful interpreter over here move his hands, and I'll tell
you--he's about out of a job, the way this boy is----
[Laughter.]
The way Ellington----
Ms. Herring. See, we have a job for him, already.
The Chairman. OK. He's very, very, very touching and
captures our hearts, as well.
So, Glenda Faatoafe is a home care worker from Lacey,
Washington. A wife and a mother of three grown children. Glenda
has provided personal care to seniors, people with disabilities
for 11 years. In her work as a home caregiver, she helps with
cooking, cleaning, bathing, dressing and transferring.
Currently, she cares for a 47-year-old quadriplegic man who has
six children. She is a leader in her local union, the SEIU
Local 775, the long-term workers union in Washington State.
Glenda how do you do it? Tell us. We look forward to
hearing from you.
STATEMENT OF GLENDA FAATOAFE, HOME CARE WORKER, KOREAN WOMENS
ASSOCIATION, LACEY, WASHINGTON
Ms. Faatoafe. Thank you very much.
Good morning. My name is Glenda Faatoafe, and I have been
providing care and support for seniors with disabilities for 11
years.
Each day I arrive at Zebty's home, and we begin with daily
routine. It starts with relieving his bowel and bladder. That
includes an internal catheter and a bowel program, which is
quite invasive for a grown man with a disability. I then
prepare and assist him in eating his breakfast. His wife, Jiji,
and I get the shower ready. It takes four separate transfers to
get him in and out of the shower. After we have gently put him
back into bed, I have to rub him down with creams, check for
hot spots to prevent bed sores, and then over an hours worth of
range-of-motion exercises for his muscles that are contracted
into the fetal position.
Then it's time to get dressed, what a feat it is. Every 2
hours I need to reposition Zebty's body, and check his blood
pressure. If it reaches a dangerous level--either high or low--
I need to quickly assess what might be causing this, and take
action. It requires fast thinking and an intimate knowledge of
Zebty's unique needs. It's only because I have assisted him for
almost 2 years, that I have a thorough understanding of his
medical history and can deliver such vital quality care.
Unfortunately, this kind of close relationship and
continuity is rare. This is the needed quality care that we
need in our United States. Turnover among caregivers is very
high, between 40 and 60 percent annually. And, it's because of
the low wages, and lack of benefits. Many clients are
constantly training new workers and learning to trust them over
and over again.
I love the work I do. I have become very close to Zebty and
Jiji and their six children. They treat me like a member of
their family. The kids even gave me a Mother's Day card last
year, or this past year. It really touches my heart, and
reminds me of how important my work is in their life. Not just
Zebty's, but his children and his wife.
But home care work is not easy. It's often a physically and
emotionally demanding job, requiring not just lifting and
transferring, but compassion, love and patience. Not just for
the client, but for the family. It's not a punch-in and punch-
out job. If someone needs additional assistance, caregivers are
the ones that provide it, and are oftentimes not compensated.
So, we work more hours than we are paid for. It's a job
with few benefits, such as sick and vacation time. Many have no
health insurance. I make $10.12 an hour, but only thanks to the
collaborative effort of my fellow union members during
bargaining. The average worker makes around $8.00 an hour, and
rarely can they find 40 hours to work in a week.
In my family we have had big sacrifices. On such a meager
salary, we don't take vacations, we don't drive new cars, and
we can only afford to send one of my three children to college.
Home care workers provide the important care that allow people
to live independently, but we struggle to make ends meet, and
oftentime are forced to find a better paying job.
Both client and workers struggle for back-up systems. If I
can't make it into work, to Zebty's house, it's almost
impossible to find back up. There's not enough caregivers
trained, effectively, to fill my shoes. Without my assistant he
would have a limited life. He would not be able to live in his
home, and watch his six children grow up, or participate in the
significant events in their life. Like seeing his second grade
child perform in a school play, or his youngest graduate
kindergarten this year. Without me, he would be a father in a
nursing home, and not the dad who helps raise them and gives
them guidance in their life. I'm sorry.
Like a lot of Americans, Zebty worked hard and enjoyed
spending time with his family. He had a good job, with health
benefits, and a 401k plan. He'd been able to start saving for
retirement, and the purchase of their first home. But then the
terrible car accident came, 2 years ago. It left him paralyzed
and unable to provide for himself or his family. He had to
spend all of his savings, leaving Medicaid as the only option
left for him to get the assistance he needed.
But he fears losing this Medicaid eligibility for the
critical services that he gets. His family has to remain poor.
His wife worked as a childcare provider, but because they need
to stay poor to maintain the eligibility, and because she needs
to be on call for the back-up care on the night shift, and the
high turnover that we have, she's limited her hours and then
eventually had to stop working altogether.
Medicaid-funded home and community-based services provide
the cost-effective assistance seniors and people with
disability need to live at home, but I don't think it should be
the only reasonable way to access the services. People should
not have to enter in and remain in poverty to get the needed
assistance. We need to invest more in home and community-based
services, and the CLASS Act is the one step to improvement to
the lives of seniors and people with disability. If the CLASS
Act existed, Zebty would not have had to spend all of his
savings, and put his family in jeopardy, to be eligible for
Medicaid.
Whether you're young or old, one day you may need long-term
care, and the choice to live at home without spinning down into
poverty should be available to everyone in America. We need to
expand the choices of this growing population who needs in home
care. Congress should take steps to ensure people have a range
of options when it comes to community support and services.
Creating an affordable national insurance program, like the
CLASS Act, will enable people to prepare for the likelihood of
becoming disabled, especially as we age.
As the baby-boomer generation ages, thousands of caregivers
like me are going to be needed to provide the one-on-one
personal care that gives people the choice and the freedom to
live at home. CLASS Act would provide additional resources to
improve wages and benefits. We can recruit and retain a stable
professional workforce of dedicated caregivers to provide the
quality care we can all count on.
Congress should enact the CLASS Act to ensure good jobs for
workers like me, and quality care for consumers like Zebty.
Thank you very much for your time.
[The prepared statement of Ms. Faatoafe follows:]
Prepared Statement of Glenda Faatoafe
Good morning. My name is Glenda Faatoafe. I've been a home care
worker providing assistance for seniors and people with disabilities
for the last 11 years. In 2005, I became one of the 400,000 home care
workers united in SEIU Healthcare, the largest health care union in the
country.
I've traveled here today from Lacey, Washington, to talk to you
about the value of home care, and the important work I do assisting
others. For almost 2 years, I've been providing care for a 47-year-old
man named Zebty Jally who is married and has six children, and is a
quadriplegic.
Each day, I arrive at his home, review the night log, we begin his
daily routine. It starts with helping him wash his face and relieve his
bowel and bladder, including an internal catheter. I prepare and assist
him in eating breakfast, and then his wife, Jiji, and I prepare to
shower Zebty, which requires a two-man lift and transfer of his 100-
pound body four separate times just to assist getting into the shower.
After transferring him back to bed, we rub him down with cream, check
for ``hot spots'' and bed sores, do over an hour's worth of range-of-
motion exercises, and assist him in getting dressed for the day.
Every 2 hours, I need to reposition Zebty's body and check his
blood pressure. If it reaches a dangerous level, either high or low, I
must quickly assess what might be causing the spike and take action to
regulate it. It requires fast thinking and an intimate knowledge of
Zebty's unique needs. It's worth noting that it is because I've
assisted him for almost 2 years and have a thorough understanding of
his medical situation that I can deliver such vital, quality care.
Unfortunately, that kind of close relationship and continuity is
rare. Turnover among caregivers is very high because of low wages and a
lack of benefits. So, many clients are faced with training and learning
to trust workers over and over again, as workers cycle through on a
regular basis.
I love the work that I do. I have become very close with Zebty,
Jiji, and their kids. They treat me like a member of their family, and
the kids even gave me a Mother's Day card last month. It really touched
my heart and reminded me how important home care work is.
But home care work is not easy. It's often a physically and
emotionally demanding job, requiring not just lifting and transferring
but compassion, love, and patience--for the client and their family.
It's not a punch-in, punch-out job. If someone needs additional
assistance, caregivers provide it--and are often not compensated. So,
we work more hours than we're paid. It's a job with few benefits, like
sick or vacation time. Many of us have no health insurance. I make
$10.12 an hour--but only thanks to the collaborative effort of my
fellow union members during bargaining. The average worker makes around
$8 an hour.
In my family, we've made big sacrifices. On such a meager salary,
we could afford to send only one of our three children to college. We
don't take vacations. We don't drive new cars. Home care workers
provide the important care that allows people to live independently,
but we struggle to make ends meet and often are forced to leave the
field for better jobs.
Both clients and workers struggle with poor backup systems, since
recruiting and retaining reliable workers is so difficult. If I can't
make it one day, it's almost impossible to find backup. There are not
enough caregivers who are trained effectively to fill my shoes.
Without my assistance, Zebty would have a limited life. He would
not be able to be there every day to watch his six children grow or
participate in the significant events in their lives, like seeing his
second grader in a recent school play. He would be in a nursing home
and not be around to be a dad and make decisions for his family.
Like a lot of Americans, he worked hard and enjoyed spending time
with his wife and kids, but then a terrible car accident almost 2 years
ago left him paralyzed and unable to provide for his family.
Before his accident, Zebty had a good job with health care benefits
and a 401(K). He had been able to start saving for retirement. When he
became paralyzed and needed medical assistance, he had to spend all of
his savings, leaving Medicaid as the only option left for him to get
the personal care assistance he needs. And he is fortunate to live in a
State with a Medicaid program that covers these in-home services. Many
seniors and people with disabilities have to live in a nursing home
because their State's program doesn't cover sufficient home and
community-based services.
Because he fears losing his eligibility for these critical
services, his family has to remain poor. His wife had worked as a child
care provider, but because they need to stay poor to maintain his
eligibility, and because she needed to be on call to pro-vide backup
care due to high turnover on the evening shift, she limited her hours
and eventually stopped working altogether. They're on a tight budget
and the loss of any one support would throw their family into crisis.
Medicaid-funded home and community-based services provide the cost-
effective assistance seniors and people with disabilities need to live
at home. But I don't think it should be the only reasonable way to
access these services. People should not have to enter and remain in
poverty to get this needed assistance.
Whether you're young or old, one day you may need long-term care--
and the choice to live at home without spending down into poverty
should be available to everyone in America. We need to expand the
choices for this growing population who need in-home care. Congress
should take steps to ensure people have a range of options when it
comes to community supports and services. It would be a great idea to
create an affordable insurance program that enables people to prepare
for the likelihood of becoming disabled, especially as they age.
This kind of program would provide additional resources and help
ensure a stable, professional workforce is available. If we do not
improve wages and provide basic benefits like health insurance, we will
never have a stable, professional workforce of dedicated caregivers to
provide the quality care we can count on.
The recent Supreme Court decision to permit home care agencies to
continue to deny payment of the minimum wage and overtime to home care
workers devalues our work and does little to encourage workers like me
to join this workforce and to stay in it.
I'm lucky that Washington State has such a strong minimum wage law
that ensures that home care workers in Washington are protected. But
Congress needs to take action to protect all home care workers by
amending the Fair Labor Standards Act.
As the baby boomer generation ages, thousands of caregivers like me
are going to be needed to provide the one-on-one, personal care that
gives people the choice and the freedom to live at home. Congress
should act to ensure there are good jobs for workers like me and
quality care for consumers like Zebty.
Thank you.
The Chairman. Thank you, Glenda. That's an extraordinary
story. And your commitment and dedication is really--truly
inspirational. Thank you for all of the good things that you
do.
Ms. Faatoafe. Senator, this is my family I take care of.
The Chairman. Yes, we've got them right up here. I see how
they look at you about the difference that you make in their
lives. So, we thank you so much.
Ms. Faatoafe. Thank you.
The Chairman. We have a hundred people in the overflow room
in Dirksen 628, and they're watching all of this on television.
So, we thank them for being here. I had a special feeling for
them, because I was the ninth in a large family, and whenever
the room was full, I was always put in the extra room.
[Laughter.]
So, I want to say hello to all those people. That's come
out in therapy at sometime. It explains a lot about me.
[Laughter.]
But, we'll move on from there.
Senator Enzi. It's my pleasure to introduce Shawn Griffin,
whose the Chief Executive Officer of Community Entry Services,
in Riverton, Wyoming.
Shawn has over 18 years of program development and
administrative experience in the field of rehabilitation. He
has extensive knowledge in providing community-based
rehabilitation and long-term care for persons with
disabilities, including job training and placement, community
living supports, and school transitions.
In his capacity as CEO he has participated in nationwide
projects establishing core competencies, recruitment and
retention for direct care professionals. Shawn has also been
heavily invested in the development of affordable and
accessible housing projects and transportation services for
persons with multiple disabilities in several Wyoming
communities.
He received his undergraduate degree and a Masters degree
from the University of Wyoming with a concentration in Adult
and Postsecondary Education. Advanced studies related to
rehabilitation have been completed, also, through the
University of Northern Colorado and the Virginia Commonwealth
University.
Thank you, Shawn, for being with us here today.
STATEMENT OF SHAWN GRIFFIN, M.A., CHIEF EXECUTIVE OFFICER,
COMMUNITY ENTRY SERVICES, RIVERTON, WYOMING
Mr. Griffin. Thank you for your kind words and
introduction. Good morning, Chairman Kennedy, Senator Harkin,
Senator Murkowski, and from my home State, Senator Enzi. I
appreciate being here. I also appreciate and thank you for your
attention to this important issue to me, and for the insightful
words that all three of you shared in the beginning of this
hearing. You obviously have a deep-rooted concern.
Since the era of de-institutionalization that began in the
1970's, Medicaid has provided the means for many people with
cognitive disabilities to live, recreate, volunteer, vote and
participate in their communities, and lead productive lives.
One thing I would like to point out is the National Core
Indicator Project, where Wyoming ranked high in many of the
quality indicators, which is something I am very proud of,
coming from a small State. I would also like to thank the other
States that participate in that study. It definitely offers
some national measures, and baselines for quality indicators.
Medicaid is the primary financing mechanism for long-term
support and services in the United States, accounting for
approximately 42 percent of all long-term care spending. At
this time, I would caution that although Medicaid has worked
for millions of people with disabilities, the Nation can not
continue to rely solely upon Medicaid for long-term care.
That's why I'm pleased to hear, and eager to learn more
about, the Community Living Assistant Service and Support Act,
that I understand Senator Kennedy and others have introduced.
I want to outline the multiple challenges currently facing
our long-term support system that jeopardizes the opportunities
that are now present in the immediate future for many people
with disabilities. I believe they demand prompt attention,
because we have made life in the community a national goal with
the Americans with Disability Act, the Supreme Court's Omstead
decision, and President Bush's new Freedom Initiative.
With that, if I have some time, I would like to highlight
some of the challenges facing providers today.
First, is the inequitable balance between institutional and
community supports. Together with the Federal Government, some
States have made efforts to rebalance their Medicaid programs,
or at least attempt to achieve a more equitable balance between
the proportion of total Medicaid long-term supports and service
expenditures for institutional services, and those spent for
community supports.
If you look at some of the 2004 annual cost of State-
operated facilities, averaged $146,000 per person, compared to
community-supported living, and personal assistance care, which
was $21,000 per person.
As you may be aware, Senator Enzi, Wyoming's waiting list
for services is basically non-existent, which is something that
should be applauded in our State. We are, however, one of the
very few fortunate States that do not have a waiting list.
Nationwide there are over 75,000 individuals waiting for
residential services. Another important fact is that another
650,000 people with development disabilities live with their
aging parents, who--as their adult child's caregiver--may need
his or her own personal assistance within the near future. Very
important. Their No. 1 concern is, who is going to care for
their son or daughter when they die, or they're no longer able
to care for them.
I am going to hurry. The single-greatest challenge facing
service providers today, is the inability to recruit and
maintain qualified direct care staff, needed to support people
with the disabilities to live as independently and safely in
the community of their choice. Average hourly wage, that was
mentioned earlier, is $8.54, or $18,000 a year. In most States,
wages paid to direct care professionals are so inadequate, that
the income level qualifies them for the same public assistance
program as those they are paid to support. A large majority of
direct care professionals are single mothers supporting
children, and I cannot express enough the fact that we must
provide livable wages to these individuals.
As you know, Senator Enzi, Wyoming's leadership and
stakeholders have recognized this problem, and have worked
diligently to increase wages to direct support staff in our
State through financial contributions by our State. However, we
are again, even in Wyoming, losing ground to this, and it's due
mainly in our State, to a robust economy. And unlike private
sector, wages--reimbursement is set at the State and Federal
level. We have no wiggle room, so to speak, to adjust our--what
we charge for services, we're kind of stuck with what we get.
In working with our National Association anchor, I believe
that a good first step in addressing the national workforce
crisis lay with bipartisan legislation, the Direct Support
Professional Fairness and Security Act of 2007, H.R. 1279, by
Representatives Capps and Terry, Capps from California, Terry
from Nebraska.
Without additional Federal funding to fiscally strapped
States, the accomplishment of a few, short-term, state-by-state
initiatives will be at risk.
Last, I would like to just touch real quickly on affordable
housing. The price now at 2006 which was presented, or prepared
by the Boston Technical Assistance Collaboration details the
effects of the housing crisis for people with disabilities. Two
disturbing statistics pointed out in the forward, actually by
Eunice Kennedy Shriver, are definitely worth noting.
One, that last year, the national average rent for a one-
bedroom apartment was up to $715.00, or 113 percent of a
monthly SSI income. And also, for the first time, the national
average rent of $633 for a studio apartment is above the entire
Social Security check that a person receives. Very alarming.
Thank you.
[The prepared statement of Mr. Griffin follows:]
Prepared Statement of Shawn Griffin, M.A.
Good Day Chairman Kennedy, Ranking Member Enzi, and members of the
committee. My name is Shawn Griffin and I am the Chief Executive
Officer of Community Entry Services, a private not-for-profit community
rehabilitation program, supporting adults and children with
developmental disabilities or acquired brain injuries in central and
northwestern Wyoming for over 30 years. It is an extreme honor to be
here today and share my knowledge regarding both opportunities and
challenges facing Wyoming's as well as our Nation's long-term support
systems supporting individuals with disabilities of all ages,
particularly those with cognitive disabilities.
My testimony today will focus on four broad themes:
1. The fiscal and societal benefits of home and community-based
supports and the progress Wyoming and the Nation have made in the past
several decades;
2. The challenges States, the Nation, private providers, and
individuals with disabilities face and the adverse consequences that
are already endangering our long-term supports systems;
3. Danger of reliance on--actually over-reliance on Medicaid--as
the Nation's primary funding mechanism for long-term supports and
failure to develop a comprehensive private long-term care financing
mechanism to reduce the burden on Medicaid; and
4. Several recommendations to address the barriers that threaten
continued progress of home and community-based supports to people with
disabilities.
BENEFITS OF HOME AND COMMUNITY-BASED SUPPORTS AND SERVICES:
A NATIONAL GOAL
Community supports and services are instrumental in assisting
persons with cognitive disabilities lead more independent, dignified
and productive lives in their communities of choice. Nationwide, people
with these disabilities are excelling in jobs, supported living, social
networks and recreational activities. Most not only assume, but also
expect access to these activities daily. As a nation we have made
notable progress toward developing necessary supports for persons with
cognitive disabilities within the community during the past three
decades when most people with cognitive disabilities were denied the
opportunities that all of us take for granted. For Cheryl, having a
direct support professional assist her daily in getting out of bed,
bathed, dressed and in her wheelchair to go to work; prepare meals and
assist her in eating; and helping her with other daily activities such
as shopping, going to church, and other activities we all enjoy, means
that she can contribute her talents and taxes to the local community in
Wyoming. Val is a person who lived in a run down trailer and survived
by collecting aluminum cans and through handouts from local stores and
restaurants. He was also the victim of several beatings and robberies.
Community services and supports have allowed Val to reconnect with his
family and receive the community supports and training needed to
improve his life. With minimal assistance from a direct support
professional he takes his medications regularly and performs personal
hygiene tasks. He also learned new job skills and now lives in his own
nice apartment, cooks his own meals, knits, and works part time. Most
importantly he is able to trust others again and feels safe.
As you can tell, it is imperative that we all earnestly continue
the capacity of our long-term supports systems to ensure that the vital
supports so necessary for Cheryl and Val--and all other individuals
with disabilities--are available for them to enjoy full inclusion and
meaningfully participate in the mainstream of American life.
Last week, we all joined in celebrating America's national
Independence Day holiday--a day when we all come together to share in a
common past of struggles, a present full of opportunities, and a future
free to live a productive and independent life. Despite the progress of
the last few decades, we still have more than 300,000 individuals with
cognitive and other disabilities throughout the Nation on waiting lists
for services; more than 650,000 individuals living with elderly family
caregivers who face limited abilities to support their adult children
with cognitive disabilities at home, and thousands of children and
adults with disabilities still living in nursing homes as demonstrated
in the Wall Street Journal article in late June.
I want to outline the multiple challenges currently facing our
long-term support system that jeopardize these opportunities now and in
the immediate future for many people with disabilities. I believe that
they demand our immediate attention because we have made life in the
community a national goal with the Americans with Disabilities Act, the
Supreme Court's Olmstead decision, and President Bush's New Freedom
Initiative.
POSITIVE ASPECTS OF COMMUNITY SERVICES AND SUPPORTS
Since the era of deinstitutionalization, people with cognitive
disabilities have been able to work, play, live and recreate within the
community. This has been accomplished by providing services and
supports that are tailored to each individual's unique needs and
preferences throughout their lifetime. Another positive aspect of
community supports and services is that these services are less costly
than large public institutions. Studies, including the State of the
States in Developmental Disabilities 2005 indicate that institutional
costs in some States exceed two to three times the amount of fiscal
effort allocated to support similar persons within the community.
As a provider of community-based services I would like to share the
numerous accomplishments and individual growth I have witnessed over
the years. Unfortunately, I will not have the time needed. Instead, I
will generalize just a few of the benefits of community supports.
People are now able to choose where and with whom they
live.
People are able to select and attend the church of their
preference.
Children are able to attend school with non-disabled
peers.
People are able to shop for their own groceries, clothing,
and personal items.
People are able to take vacations.
People are able to choose their own medical providers.
People are able to work.
Some people own their own homes.
Many volunteer with community projects.
People in some cases can even choose their own support
staff.
People participate in civic activities.
People are able to participate in recreational activities
of their choice.
Most importantly, all the opportunities made available to persons
with cognitive disabilities in the community promote self worth, a
sense of pride, and societal involvement.
At this time I would like to make reference to the National Core
Indicators Project. This collaboration between the National Association
of State Directors of Developmental Disabilities Services and the Human
Services Research Institute has the purpose of creating performance
indicators and data collection that results in the ability to measure
system performance. This comprehensive project also seeks input from
families and guardians. This project began in 1996 and by the 2005-2006
fiscal year report had the participation of 20 States consisting of
Alabama, Arkansas, Arizona, Connecticut, Delaware, Georgia, Hawaii,
Kentucky, Massachusetts, Maine, North Carolina, Oklahoma, Pennsylvania,
Rhode Island, South Carolina, South Dakota, Texas, Vermont, West
Virginia, and my home State Wyoming. I applaud the States that have
taken this initiative to measure individual outcomes that is compared
to a national average. The purpose is simply to improve services based
upon measurable outcomes and service satisfaction. This tool reveals
not only many of the positive aspects of community services, but areas
needing improvement. It is with bias and pride that I am able to say
Wyoming ranks very high in most categories and leads the way in many of
the indicators measured by this project to include:
Proportion of people who looked at more than one home
before deciding where to live.
Proportion of people who looked at more that one job
before selecting a vocation.
Proportion of people who expressed having a close friend.
Proportion of people who are able to see their friends
when they want to.
Proportion of people who are satisfied with where they
live.
Proportion that express having appropriate transportation
to go where they want.
Proportion of people who feel safe in their homes and
neighborhoods.
Proportion of women who received a gynecological exam.
Proportion of people who are physically active.
To be fair, I must point out that Wyoming needs to improve in the
area of increasing community inclusion rates. Nonetheless, the above
exemplifies some of the performance indicators of the National Core
Indicator Project and expected outcomes of being supported in the
community. These outcomes also represent the advantages of living and
being supported through community services.
Our agency provides services from birth to death with a majority of
funding provided under the joint Federal-State, Medicaid Title XIX,
Section 1915(c) Home and Community-Based Waiver programs. Services
provided to children under the age of 18 are primarily service
coordination and respite supports--not only a cost-effective method of
serving these children, but one that supports most children to continue
living with their families who love them and avoid more costly out of
home placements. However, remaining in their homes as most parents
desire can be very challenging to some families depending upon the
behavioral, physical, cognition, or medical needs of their child.
Nonetheless, if asked most families would not exchange this arrangement
for anything in the world. I feel strongly it is our duty as a provider
to advocate for these families and the supports they need.
On the other end of the spectrum our agency serves many working-
aged and senior persons with disabilities. The ability to offer
supports avoids premature admissions into a nursing home or medical
care facility. Let me provide you with just a few examples of the
importance of these supports to older adults:
50-year-old woman with Down syndrome, mental retardation,
and limited communication skills was able to purchase her own home and
work full-time at a local manufacturer.
73-year-old woman with moderate mental retardation who is
blind in one eye and refuses to retire is able to work part-time and
lives with three other senior citizens in a four-bedroom ranch style
home.
82-year-old man with severe mental retardation and
congestive heart failure does not work but volunteers at the local Head
Start program and has survived three major heart attacks. I may be
wrong but I contribute this to his ability to stay active and do
something he enjoys more than anything and that is spending time with
small children. I would also like to say this is just one example of
how people without disabilities benefit from associating with persons
with severe cognitive disabilities. That is, the children he works with
love this man dearly and have learned acceptance and tolerance of
someone who is a little different than they are. This is a lesson they
will carry throughout their lives that cannot be taught without the
full inclusion of people with disabilities engaged throughout their
lifetime with people without disabilities.
There are many success stories as a result of the supports CES
provides as well as those throughout Wyoming and the Nation. These
individualized supports within the home and community offers
individuals with cognitive disabilities the ability to live their lives
with more choices, more failures, more opportunities, more self
direction, more chances, more risk, more fear, and more happiness. All
of us in this world have one chance at life. Community services and
supports allow persons with cognitive disabilities the chance to lead a
life similar to you and I and that, I believe, is not asking much at
all.
CHALLENGES FACING COMMUNITY-BASED SERVICE PROVIDERS
However, given all the accomplishments to date, all the enriched
lives made possible through home and community-based supports, there
are challenges threatening the stability of services providers--their
capacity and ability to support those who depend upon these vital
supports to live productive and independent lives in communities across
the Nation. These barriers include several challenges that have reached
a crisis point for our Nation.
Workforce Crisis. The current inability to recruit and
retain a stable, adequately paid national workforce is a crisis
nationwide and will only get worse as our Nation's baby boom generation
retires and the demand for long-term supports increase and the supply
of labor available shrinks. I believe that this direct care support
staff is the chief challenge undermining the ability of people with
disabilities to remain in or return to the homes and communities that
they prefer. Without people to provide the individual supports--life in
the community is a hollow promise.
Housing Crisis. The lack of affordable and accessible
housing for persons with cognitive disabilities who have limited income
has reached a crisis level. Without a home--the foundation of life in
the community--working and living and contributing to society are
hollow national goals.
Transportation. The lack of available and affordable
transportation for individuals with cognitive disabilities isolates
them and undermines the ability to take part in all aspects of life in
their community.
DIRECT SUPPORT WORKFORCE CRISIS
The single greatest challenge faced by service providers today is
the inability to recruit and maintain qualified staff. The long-term
care service systems face a workforce crisis that without intervention
will only worsen with time. These workforce challenges will make it
extremely difficult to make needed improvements in quality and safety.
In most States, wages paid to direct care professionals are so
inadequate that the income level qualifies direct support staff to
qualify for many of the same public assistance programs as those they
are paid to support. The Bureau of Labor Statistics reports that
nationally the average per hour wage for individuals who provide direct
care is $8.74 per hour--or an annual income of $18,180. Additionally, a
large majority of direct care professionals are single mothers
supporting children.
I cannot express strongly enough, the fact that we must provide
livable wages. And by that, I mean a wage where someone can afford to
live and work independent from public assistance. If a person cannot
take care of themselves and their families, how in the world can we
expect them to adequately take care of those they are charged to
support? Access to insurance benefits and a job that provides
retirement benefits should also be made available. However, with the
skyrocketing costs of healthcare and lack of appropriate reimbursement
it is getting more and more difficult to maintain these benefits.
The funding for the majority of private providers of supports and
services to individuals with disabilities is financed through Medicaid
programs. Labor costs are the major costs to CES. CES, like other
private providers of supports to disabilities, is dependent on
reimbursement rates set by local and State Governments. The public
funding of supports to individuals who rely on Supplemental Security
Income (SSI) as do most of the people that CES supports, means that,
unlike other employers in the private sector, the higher cost of labor
for direct support professionals can not be passed along to our
customers--people with disabilities are based upon the reimbursement
rates set by local and State Governments.
Unlike other employers in the private sector, wages for direct
support professionals are based upon the reimbursement rates set by
local and State Governments. We must contribute to the quality and
effectiveness of services through the development of a fairly
compensated, well-trained, stable community workforce and a sufficient
supply of qualified providers--be they employees of agencies or
independent providers--family and friends that are selected and
controlled by individuals with disabilities.
In addition, President Bush's New Freedom Initiative as well as
CMS' new long-term care vision has identified this issue as currently a
barrier in achieving the goals of home and community supports. We must
contribute to the quality and effectiveness of long-term services
through the development of a fairly compensated, well-trained, stable
community workforce and a sufficient supply of qualified providers--be
they employees of agencies or independent providers. In recognizing the
value and efficiencies in providing supports in the home and community
and person-centered services, we must provide a parallel shift in the
financing to match the preferences and desires of people with
disabilities.
Nationwide, the turnover rate of direct care professionals is
between 50 percent and 75 percent. As high as this may seem, in my
opinion this is a conservative number. Some places have experienced
turnover rates in direct care professionals near 100 percent. The
ability to provide home and community-based supports--supports that are
intimate, highly individualized, and provided on a daily basis with the
trust that only comes about from a stable relationship--is difficult at
best when this occurs and the health and safety to those supported is
severely compromised. Wyoming is not immune to this problem and we
continue to struggle with staff recruitment and retention. This problem
is very serious and must be addressed. Studies indicate that by the
year 2015 an additional 750,000 new direct care professionals will be
needed to provide long-term community support for the elderly and
disabled. When you add this to the already staggering need for direct
support professionals today, we as a nation have a full-blown crisis. I
ask that we begin working diligently now to create real solutions
because this problem will not go away without action but rather
increase to the point of system failure.
A report requested by Congress, The Supply of Direct Support
Professionals Serving Individuals with Intellectual Disabilities and
Other Developmental Disabilities, January 2006 by the U.S. Department
of Health and Human Services, Office of the Assistant Secretary for
Planning and Evaluation (APSE) analyzed this shortage and confirmed the
workforce crisis. I am proud to note that Wyoming was one of five
States highlighted in the report to address workforce shortages and
reduce the amount of turnover in direct care professionals. At a time
when Wyoming was experiencing direct support turnover rates exceeding
50 percent, service providers were able to work with our State
legislature to study the issue and recommend some solutions. Known as
Footnote 9 in Wyoming, it authorized a study to determine what wage
would be necessary to stabilize the turnover of direct care
professionals. The Wyoming legislature authorized State money matched
by Federal dollars through the Medicaid Section 1915(c) Adults with
Developmental Disabilities Community Based Waiver program to increase
wages of direct care workers. At the request of service providers this
initiative included an accountability factor requiring every service
provider to provide annual documentation that the wages that were
designated for direct care professionals were distributed properly.
This includes identifying factors for all direct care professionals so
that wage increases can be tracked to each person. This mandated annual
report also measures turnover.
Fortunately, in addition to the initial increase in 2002 the
Wyoming Legislature has recognized the importance of this crisis and
approved other increases, including most recently a 3 percent increase
that will go into effect after July 1st of this year. The State of
Wyoming also purchased registrations for any interested direct care
professionals to enroll in the computerized certificate program through
the College of Direct Support offered through the University of
Minnesota in partnership with other advocates wanting to increase the
knowledge and professionalism of this workforce. In combination with
the increase in direct support staff wages and access to the College of
Direct Support, the State of Wyoming financed an aggressive ad campaign
targeting recruitment efforts. In addition to traditional advertisement
and proven recruiting efforts, this campaign included an annual banquet
recognizing direct support staff award winners publicly and with a
financial incentive. This banquet continues to date and awards are
presented by the Governor of Wyoming. These initiatives have shown the
commitment of the Wyoming provider system and support of policymakers
of the highest level. We are thankful for the support we have received
in attempts to solve this crucial workforce shortage. This trend lasted
for 3 years and then we began witnessing an increase in the turnover
rates of direct support staff once again. The aforementioned
initiatives showed great promise until Wyoming began to feel the
effects of a booming economy related directly to the increased
production of gas and oil. This combined with Wyoming's already robust
economy aided immensely through coal production, tourism and the
mineral industry began to have a negative effect on the ability to
recruit and maintain direct care professionals. This also had a large
effect on the affordability of homes in Wyoming, adding to the
difficulties of enticing direct support professionals to move to our
State. The following charts show the direct correlation of a decrease
in turnover when wages were initially increased.
Unfortunately, we were being outpaced by the positive economic
gains seen in our State. Despite some of the noteworthy efforts of the
good people in Wyoming and the State leadership, we as service
providers are once again losing ground quickly in a vocational field
already experiencing high rates of turnover. Wyoming's seasonally
adjusted unemployment rate fell to 2.6 percent in January 2007 far
below the national average of 4.6 percent. At the same time, Wyoming's
job growth rate was 3.7 percent compared to the national average of 1.6
percent crippling our recruitment efforts even more. Once again, we are
seeing turnover rates equaling and in some areas of the State,
exceeding pre-footnote 9 numbers.
I must point out that although a very vibrant economy like the one
currently being experienced in Wyoming affected recruiting efforts,
there are many, many other contributing factors that have led to a
State and national shortage of direct care professionals in the
community. Low wages and benefits, work demands, lack of interest, lack
of training, inexperience, work hours, job isolation, and working with
challenging behaviors and intimate personal care issues not only lead
to high turnover rates but also contributes to increased reports of
neglect and abuse.
In most States, wages paid to direct care professionals are so
inadequate that the income level qualifies direct support staff to
qualify for many of the same public assistance programs as those they
are paid to support. Additionally, a large majority of direct care
professionals are single mothers supporting children. I cannot express
strongly enough, the fact that we must provide livable wages. And by
that, I mean a wage where someone can afford to live and work
independent from public assistance. If a person cannot take care of
themselves and their families, how in the world can we expect them to
adequately take care of those they are charged to support? Access to
insurance benefits and a job that provides retirement benefits should
also be made available. However, with the skyrocketing costs of
healthcare and lack of appropriate reimbursement it is getting more and
more difficult to maintain these benefits.
Our program has seen increases in our health insurance at a rate of
18 percent to 30 percent each year for the past 15 years. Despite
recent reimbursement increases we have seen in Wyoming, it is very
difficult to maintain health insurance for staff. Being a direct
support professional is a demanding job with colossal responsibilities
that includes medication access, dealing with challenging behaviors,
working alone in many cases, performing intimate person care, and
teaching multiple skills. And you do all this and more only to find
that in many cases your wages equal to those of a fast-food worker.
This is not only embarrassing but also completely inexcusable.
Simply put, you are responsible for the lives of persons with
compromised cognitive skills and medical concerns, not to mention the
amount of paperwork you must complete.
High turnover rates mandate remaining direct care professionals and
managers to work excessive overtime hours. For obvious reasons, we are
unable to shut down certain shifts or operate with unsafe staffing
levels. These increased demands and increase overtime hours lead to
additional staff burnout and turnover, creating what has become
referred to as the ``revolving door.''
In my travels around the country as a surveyor for the Commission
on Accreditation of Rehabilitation Facilities (CARF), I find over and
over again that the lack of qualified staff, inability to recruit new
employees, and the high rate of staff turnover to be the largest
problems faced by service providers. This in turn reduces the quality
of services provided and can indeed put the health and safety of
persons with disabilities at great risk.
I realize there are no easy answers to workforce shortages
experienced by many employers in the United States. You may ask why
should the field of community services and supports be any different or
garnish more attention and assistance? I can only answer that by saying
one thing. These are people. People who must depend upon and trust
others to assist them in many, if not all, facets of personal living
skills. The inability to find solutions could literally be life
threatening.
I believe that a good first step in addressing this national
workforce crisis is passage of legislation like the Direct Support
Professionals Fairness and Security Act of 2007 (H.R. 1279), bipartisan
legislation introduced by Representatives Lois Capps (D-CA) and Lee
Terry (R-NE) that is designed, on a voluntary basis, for States to
apply for additional Federal funds to increase wages of direct support
professionals. As we have seen, without additional Federal funding to
fiscally-strapped States, the accomplishments of a few short-term,
state-by-state initiatives end without creating the stable conditions
needed to develop an adequately paid direct support workforce now and
in the future.
LACK OF ACCESSIBLE AND AFFORDABLE HOUSING
There continues to be lack of accessible and affordable housing
nationwide for persons with cognitive disabilities. There are many
programs that assist low-income individuals when purchasing a home.
However, many persons with cognitive disabilities do not even qualify
for this assistance. Unfortunately, people are forced to live where
they can, oftentimes in unsafe neighborhoods and certainly not choice
driven.
This year's annual Priced Out in 2006, prepared by the Technical
Assistance Collaborative, Inc. in Boston and the national Consortium
for Citizens with Disabilities, funded through the Melville Charitable
Trust, with the foreword provided by Eunice Kennedy Shriver, outlines
in detail the continuing housing crisis facing people with
disabilities. Two astounding statistics really brings this issue to
light.
``Last year the national average rent for one-bedroom
apartments rose to $715 per month--this equals 113.3 percent of monthly
SSI income.''
``In 2006--for the first time--the national average rent
of $633 for studio/efficiency apartments rose above the entire monthly
income of an individual who solely relies on SSI income. Even this
modest dwelling would consume 100.1 percent of someone's income.''
We are not exempt from these staggering figures in Wyoming either.
We have areas of high impact to include the counties of Campbell,
Sublette, Sweetwater, and an area where our agency provides services,
Teton. Teton County has consistently been one of, if not, the most
expensive County to live in the United States. The cost to buy or build
homes in Wyoming is incredibly high with housing costs across the
Nation extreme, especially for those with limited incomes and
challenging disabilities. As an example, our agency built a five-
bedroom accessible home with a final price tag exceeding $450,000. We
were fortunate enough to receive a Community Development Block Grant
for $300,000, leaving $150,000 that we had to pay through other
privately raised funds. We are thankful for the grant and the ability
to provide this housing. However, without grant assistance and the
ability to raise private funds, the persons we support could never
afford to live here. The hard question then becomes, where do they go?
We are running out of options. Add to the cost of housing the
increasing costs of food, medical care and energy costs, and the
problem begins to seem unfathomable. Similar to transportation,
traditional funding sources do not reimburse room and board charges and
funding that is available remains stagnant and only covers a portion of
what is needed.
Lastly, as a service provider that manages several HUD projects, I
would love to see a relaxing of oversight regulations. This is not only
time consuming and burdensome, but in my opinion an ineffective use of
resources. I agree that some rules and oversight must be in place to
prevent fraudulent use and discrimination. However, relaxing the
reporting requirements of a long-term project such as ours, in the 26th
year of a 40-year project, with positive proven track records would
allow efforts to be focused in other areas, most importantly the
development of more affordable and accessible housing.
TRANSPORTATION CHALLENGES
I would like to quickly refer to an initiative I am familiar with
currently underway in Wyoming resulting in part from the National
Reduction Act and New Freedom Act. With initial grant funds provided by
the Wyoming Governor's Planning Council on Developmental Disabilities,
the Wyoming Independent Living Center program created a voucher
program. This project provides vouchers to qualified candidates who
then hire their own drivers when they need to go shopping to medical
appointments, or other activities. These drivers could be neighbors or
friends with simplified reimbursement to entice participation. Touted
as being a success, this new project is intended to supplement, not
duplicate, current public transportation. Due to the rural nature of
our State, in many instances people in Wyoming must travel over 100
miles to seek necessary medical services. This program, which was
sponsored substantially by the Wyoming Department of Transportation,
not only provides a highly needed service, but also exemplifies what
can be accomplished through determination and partnerships.
However, most transportation services provided for persons with
cognitive disabilities are done through services providers. Medicaid,
which is the primary fund for community services and supports, does not
consider transportation as a reimbursable service. Thus, in most cases,
fuel prices, vehicle procurement and maintenance, and driver training
all become the responsibility of the provider who must depend on other
fund raising methods, which many of which are not dependable.
I realize there are many transportation initiatives being conducted
across the country and even in Wyoming. I would conclude by stating
that individual choice such as the aforementioned voucher program is
wonderful but somewhat limited and not guaranteed. Therefore, methods
of reimbursement for transportation should be considered when defining
future supports and expectations for persons with cognitive
disabilities being supported in the community.
As a service provider we are dependent primarily upon State and
Federal funding to support persons with cognitive disabilities.
Throughout this testimony, I have discussed several pressures we are
facing to include workforce shortages and the need for livable wages,
skyrocketing insurance costs, subsidizing housing, and non-reimbursable
transportation cost. I must point out our inability to cost shift or
increase fees relative to the increase in expenses to operate.
Therefore, I would appreciate your attention to the following proposals
and thank you sincerely for the chance to present this information in
this forum.
NEED TO DEVELOP A NATIONAL COMPREHENSIVE, ADEQUATELY REIMBURSED SYSTEM
Today, Medicaid is the primary funding mechanism for long-term
supports. The development of a comprehensive long-term care program for
elderly and disabled people is critical. Without the development of
such a program, long-term care expenditures will continue to overwhelm
State and Federal health care budgets, limiting needed expenditures for
primary and preventive health care. The Nation must develop other
options to providing long-term supports in the future--supports based
upon the preferences of people with disabilities and the elderly--
thereby, reducing the burden on Medicaid.
As you know, this year marks the first year that members of the
baby boomers turn 60. I figure that during the 2 hours set aside for
public comment--660 individuals have turned 60. The Census Bureau
estimates that 7,918 people will be turning 65 each day in 2006. The
United States has not begun to prepare for this demographic dynamic.
This challenge is not simply about long-term care and Social Security,
pensions and other income maintenance efforts--its about housing,
products and services, technologies, language, learning--every aspect
of life. What will 77 million baby boomers like as their favorite
drink, how will they prefer to shop, malls, small stores, online,
personal shoppers. Included among the baby boom generation are
individuals with life-long disabilities, family caregivers, and a
workforce that has been providing a range of daily long-term supports
and services.
In addition, when it comes to reimbursing providers, Medicaid is
stingier than either Medicare or commercial insurance. Cuts in
reimbursement rates have become one of the most expedient means for
saving dollars. However, by low-balling compensation, the program ends
up reducing the number of providers willing to provide Medicaid long-
term supports and services.
I believe that a good first step towards developing a new option
for financing long-term supports is The CLASS Act.
INITIATIVES AND PROPOSED SOLUTIONS
1. Due to the comprehensive nature of the National Core Indicator
Project and the ability to uniformly measure individual State
performance based upon numerous indicators and input solicited directly
from persons with cognitive disabilities and their families, I would
suggest exploring the possibility of having all States participate in
this project. Ultimately, this could create national benchmarks for
quality expectations of service provision.
2. At the national level, I would encourage you to support the
adoption of H.R. 1279 referred to as the ``Direct Support Professionals
Fairness and Security Act of 2007.'' This amendment to Title 19 of the
Social Security Act would provide moneys to some States to increase the
wages of direct support professionals in community-based Medicaid
supported programs. States would be required to develop acceptable wage
enhancement plans promoting accountability and good stewardship in
getting wage increases to direct care professionals.
3. This suggestion is not presented to debate institutional versus
community services and supports. However, I would suggest a review of
the inequities in funding and subsequent wage and benefit discrepancies
amongst direct support professionals in the private sector and those in
public institutions. There must be either appropriate resource shifting
to develop community capacity. At the very least services access should
be equitable.
4. Review affordable housing options and program incentives to
assist in housing development. Additionally, I would encourage a review
of HUD rules to determine any measures that may allow for reduced
reporting requirements that still incorporate accountability and
project compliance.
5. I would like to acknowledge some of the innovation
transportation projects similar to the voucher program in Wyoming.
Continued support of these projects is recommended. Also, when
reviewing reimbursement methods for support services in the community,
I would encourage policymakers to consider transportation costs and
possible reimbursement methods using traditional means of funding.
6. Without a comprehensive national approach to long-term supports
and services, and in the face of the demographics of an increased
demand for such supports given a retiring baby boom population and
medical technologies that increase the lifespan of all people with
disabilities, there will only continue to be increased burden on the
Nation's primary financing program for long-term supports--the Medicaid
program. I believe an important step in addressing the need for a
broader, comprehensive, public and private long-term care system is the
CLASS Act. I encourage Congress to begin discussion of this legislation
right away.
The Chairman. Thank you very much.
Andy, we are delighted to have you. Andy Imparato is
President, Chief Executive Officer, American Association of
People with Disabilities, and a good friend. Tom Harkin related
about what an extraordinary difference you've made to this
committee. You've had an extraordinary career in the areas and
we are very, very grateful for your presence here and for your
message and for your lifetime commitment to the cause.
STATEMENT OF ANDREW J. IMPARATO, PRESIDENT AND CHIEF EXECUTIVE
OFFICER, AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES,
WASHINGTON, DC.
Mr. Imparato. Thank you very much, Senator Kennedy, and I
want to thank you and Senator Harkin, and Ranking Member Enzi,
and Senator Murkowski for all being here at this hearing, and
for having this hearing which--the size of the audience and the
size of the overflow room really pales in comparison to the
level of interest in this hearing around the country.
I am honored and humbled to testify today on behalf of four
very important organizations. One of them I run, called the
American Association of People with Disabilities. But when
Connie asked me to testify, I told her I wanted to testify on
behalf of also ADAPT, and the National Council on Independent
Living and self-advocates becoming empowered. Because from my
perspective, those organizations are the ones that are showing
the leadership on the issues we are talking about today. And I
am really honored that they allowed me to testify on their
behalf.
The Chairman. I just mentioned, you received the
Secretary's highest recognition award from the U.S. Secretary
of Health and Human Services, Mike Leavitt, for commanding
leadership of APD. And politically and economically empowering
all people with disabilities, through public policy advocacy
and programs. So, you come well recommended and well
recognized.
Thank you.
Mr. Imparato. Thank you very much, Senator Kennedy. I hope
that won't come out of my 5 minutes.
[Laughter.]
The Chairman. You have been around here too long.
[Laughter.]
Mr. Imparato. In all seriousness, I really want to
acknowledge Bob Kafka, whose been mentioned earlier. Bob helped
me a lot with my testimony, he's been a mentor for me for a
long time, including when I worked for Senator Harkin on the
Disability Policy Subcommittee. I want to acknowledge Bobby
Coward, who is sitting next to Bob, who is a brand new board
member of AAPD. So, he is making sure that I am doing justice,
by ADAPT, and by my colleagues.
For many people in the room today this hearing goes to
their most personal, most intimate moments--how and where they
live their lives, get out of bed, use the bathroom, eat a meal,
play with their children, get to work, participate in worship,
socialize with friends and families, and vote. And, I
appreciate my colleague, Shawn, who mentioned voting.
I attended a hearing that ADAPT hosted in Nashville,
Tennessee, where I heard from over 50 individuals, over 7 hours
of testimony, who had spent times in nursing homes and other
institutions. And they testified to their experience in those
institutions. And I would strongly encourage folks to read the
appendix attached to my written testimony, which is the
transcript from what we heard at that hearing. I also want to
acknowledge Dr. Peg Gianinni, who went with me down to
Nashville on behalf of Secretary Leavitt and heard that
testimony on behalf of the Administration.
[Editor's Note: Because of the high cost of printing,
previously published materials will not be reprinted. For the
above mentioned transcript, go to www.adapt.org/freeourpeople/
aar/nash06/transcript.htm#andyimparato)3.]
As a person with bipolar disorder, manic depression, I am
particularly sensitive to the human rights issue of forced
medication. And one of the things I heard over and over again
in Nashville, is that when people are in institutions, and they
speak up about their inhumane living situation, they get
forcibly medicated against their will. This is a human rights
violation that's going on around the country, and it's
happening to people with psychiatric conditions--and to people
without psychiatric conditions--as a way to placate them. And
it's wrong, and it's something that the government and this
committee can do something about.
I have three main points that I'll get through quickly for
my oral testimony. First, and a lot of this echoes what you've
heard from other witnesses. Our long-term care system is
broken, and completely inadequate for the current needs of
people with disabilities of all ages, and for the future needs
of an aging population. Fixing the institutional bias in
Medicaid is a critical first step, but as other witnesses have
said, that isn't going to get us everywhere we need to go. We
need new creative approaches like the Community Living
Assistance Services and Supports Act, or the CLASS Act, which
is being introduced today in the Senate and the House. And, I'd
strongly encourage Senator Harkin, Senator Enzi, Senator
Murkowski, to please co-sponsor that legislation. Take a hard
look at it. I commend this committee for looking at these
issues in a bipartisan way.
Senator Enzi, your staff have been phenomenal working
across aisles to try to do good policy. This is good policy and
I really encourage you to look hard at this legislation.
The CLASS Act is not--and it really lines up with what you
said in your opening statement, Senator Enzi, the CLASS Act
does not require people to leave the workforce and impoverish
themselves in order to get services and supports that they need
to survive. It encourages people to plan for, and save for,
their long-term services and supports needs from the moment
they begin working, and it gives people real choices in where
and how to receive their supports and services. Everyone on
this committee should take a hard look at this legislation,
because it's good policy, and it will save the taxpayers money,
and it will dramatically improve people's quality of life.
My second point is that we need an oversight hearing on the
failure of the States to comply with the Omstead v. Lois Curtis
Supreme Court decision. That was mentioned by Shawn Griffin,
next to me. That was a ground-breaking decision in 1999 where
the Supreme Court held that it was a violation of the ADA, to
force people to live in segregated institutional settings, when
they could be appropriately cared for in the community. And,
the States are not complying with that civil rights decision.
That's a civil rights issue. It's not a Finance Committee
issue, it's a HELP Committee issue. I'd strongly urge this
committee to look at that as an ADA oversight issue. And I know
you all are doing a lot of oversight, and to me that's a great
issue to look at.
And, you know, this is an issue where Senator Clinton fell
short--not Senator Clinton, but President Clinton--fell short,
and President Bush has fallen short. President Bush did issue
an executive order on Omstead implementation, but we are not
seeing aggressive enforcement from the Federal Government.
My third point, and last point, is that this committee
needs to recognize--and this goes back to Senator Harkin's
statement--that the goals of the Americans with Disabilities
Act for people with disabilities--the quality of opportunities,
full participation, independent living, economic self
sufficiency--will never be realized until we have comprehensive
health care reform that truly meets the needs of people with
significant disabilities across the age spectrum, and across
the income spectrum. Piecemeal reform focused on simply
covering the uninsured won't be meaningful unless and until it
addresses the acute, and long-term care needs of people with
significant disabilities and chronic health conditions.
Medicaid and Medicare need to be modernized, and support people
with disabilities in living independent lives with dignity and
choice in the community. Everyone on this committee should
support the Community Choice Act as a critical first step in
transforming Medicaid, so that it supports the goals of the
Americans with Disabilities Act.
The time to act is now. People's lives are being stolen by
our inadequate and broken systems. And I am going to close with
a brief quote from Samuel Mitchell, who was one of the
witnesses that we heard testify in Nashville. He said, ``I was
an ordained minister and also a truck driver who became
disabled. I had a ministry to nursing homes. I went in nursing
homes and preached. I thought I knew a little bit about them.
After becoming disabled a year later I suffered a stroke.
That's when I entered a nursing home and found out just how
much I didn't know about nursing homes. The prevailing
atmosphere in nursing homes is that we now own you. We own you
and everything about you. You become a non-person, your rights,
human rights and civil rights are routinely violated. Dignity--
there was no dignity.''
Thank you very much.
[Applause.]
[The prepared statement of Mr. Imparato follows:]
Prepared Statement of Andrew J. Imparato
Chairman Kennedy, Ranking Member Enzi, and Members of the Senate
Health, Education, Labor, and Pensions Committee, thank you for giving
me the opportunity to testify today regarding the very important topic
of community living and long-term services and supports. My name is
Andrew J. Imparato, and I am the President and Chief Executive Officer
of the American Association of People with Disabilities (AAPD), a
national non-profit, non-partisan membership organization promoting the
political and economic power of the more than 50 million children and
adults with disabilities throughout the United States. With more than
100,000 members, AAPD is the largest national cross-disability
membership organization in the country. I am very glad to provide my
testimony today on behalf of not only AAPD but also three other
national, cross-disability, non-partisan membership organizations--
ADAPT, the National Council on Independent Living (NCIL), and Self
Advocates Becoming Empowered (SABE)--all of which also share the goals
of self-determination and full participation for our community in all
aspects of society.
NCIL is the oldest cross-disability grassroots membership
organization run by and for people with disabilities, advocating for
independent living and the advancement of people with disabilities
through consumer-driven advocacy. ADAPT is a national membership
organization focused on changing the long-term care system through
achieving adequate attendant services in the community and ensuring
that individuals who want to leave nursing homes and other institutions
to live in their own homes and communities can do so. SABE is committed
to ensuring that people with disabilities are treated as equals and are
given the same decisions, choices, rights, responsibilities, and
chances to speak up to empower themselves.
As a former counsel to this committee's Disability Policy
Subcommittee between 1993 and 1994, I have had the pleasure of working
closely with bipartisan members and staff on this committee, and I very
much appreciate your commitment to civil rights, self-determination,
and full participation of children and adults with all types of
disabilities in all aspects of society. My testimony is grounded in my
professional experience as a disability rights lawyer and policy
advisor and my personal experience as a person with bipolar disorder or
manic depression.
Also, as a Senate appointee to the bipartisan Ticket to Work and
Work Incentives Advisory Panel, I chair that Panel's committee that has
been tasked with developing a new model for providing supports and
services to people with significant disabilities. Our new model, which
we are calling a ``national employment investment strategy,'' is
grounded in higher expectations and more timely investments that will
provide a strong return over the lifespan of an individual with a
disability. We believe that timely investments will result in cost
savings to the Federal Government, higher quality of life for people
with significant disabilities, and a new skilled workforce that can
help mitigate labor market shortages that are projected over the next
several decades.
Perhaps the most important point I could make this morning is that
every American is a stakeholder in today's topic. There are currently
10 million Americans in need of long-term services and supports, and
that number is expected to rise to nearly 15 million by 2020.\1\ These
individuals are male and female, adults and children, with a broad
range of disabilities represented. This is in no way a static
population.
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\1\ Kaiser Family Foundation (July 2006). Medicaid and Long-Term
Care Services. Washington, DC: Kaiser Commission on Medicaid and the
Uninsured; Feder, J., Komiser, H.L., & Friedland, R.B. (June 2007).
Long-term care financing: Policy options for the future. Washington,
DC: Georgetown University Long-Term Care Financing Project.
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Disability civil rights laws start with the recognition that
disability is a natural part of the human experience that in no way
should limit a person's right to make choices and participate fully in
all aspects of society. Any person at any time can acquire a
disability. Some people acquire disability as they age. By 2030, when
the youngest baby boomers reach retirement, the population of those age
65 and older will nearly double to 71 million, comprising 20 percent of
the American population.\2\ Some people acquire their disabilities
through birth; some through accident or injury; some through illness.
Still others acquire disability while putting their lives on the line
for our country. Traumatic brain injury has become the signature wound
of the Iraq-Afghanistan wars, with estimates as high as 60-70 percent
of all wounded returning vets having TBI.\3\ This unprecedented
population of disabled soldiers and veterans is expected to have
ongoing needs for long-term services and supports over the course of
their lifetimes, with some recent reports suggesting the cost of care
could be as much as $14 billion over the next 20 years.\4\
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\2\ Alliance for Health Reform (March 2007) Issue Brief: Long-Term
Care Partnerships: An Update.
\3\ Institute of Medicine, the National Academies, Evaluating the
HRSA Traumatic Brain Injury Program, Washington, DC.: The National
Academies Press, Eden, Jill and Rosemary Stevens, Editors, 2006, p. 41.
\4\ ``One Soldier's Struggle with the Iraq War's Trademark
Injury,'' Stanford Medicine Magazine (summer 2007), referencing a
report by Linda Blimes of Harvard's Kennedy School of Government and
Joseph Stiglitz, Ph.D. of Columbia University.
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Given the diversity of the disability population across the age
spectrum, our country requires a long-term care system that affords
people real choice in how and in what environment they will receive the
supports they need to live. This means a system built to work for all
people without regard to age or disability. One that begins with the
assumption that adults with disabilities want to work, children with
disabilities want to learn and play with their neighborhood friends,
and the vast majority of individuals in need of long-term services and
supports would rather receive those supports at home with family and
friends. One that looks holistically at people with disabilities and
understands that long-term care should be integrated with acute care
services; that personal care attendants are a reasonable workplace
accommodation; and that people should have freedom in choosing where to
live and not be forced into certain types of housing in order to
qualify for the supports they need to survive. Only a long-term care
system that is comprehensive in scope could satisfy the existing as
well as impending demand for long-term care that moves us away from our
long legacy of warehousing people with disabilities--simply maintaining
them so they can survive another day--and toward investing in them,
with an expectation of return. Choice and control should be at the
foundation of any comprehensive reform. Sadly, this vision of
comprehensive reform is the complete opposite of what we have in place
today.
Our current system of long-term care dates back to 1965, when the
Medicaid and Medicare programs were first created.\5\ Not surprisingly,
given the origins of these programs, the system continues to exemplify
the historically low expectations society has had for people with
disabilities for decades. With the expectations for us so low, the
mission of the old system was and remains to this day focused on simply
maintaining people with disabilities in nursing homes, other
institutions, and back rooms, outside of view and away from the
mainstream. In 1965, people with disabilities were largely out of
sight, because society was inaccessible, both literally and
attitudinally. In 1965, States still had involuntary sterilization laws
for people with disabilities. Curb cuts were few and far between. There
was no Americans with Disabilities Act (ADA). It is 42 years later, and
it is an abomination that hundreds of thousands of people with
disabilities remain trapped in a broken system that steals lives, saps
peoples' spirit, and enriches service providers at the expense of
disabled people and their families.
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\5\ Hearing on Long-Term Care and Medicaid: Better Quality and
Sustainability by Giving More Control to People with a Disability
Before the Subcommittee of the House Committee on Energy and Commerce,
109th Cong. (April 27, 2005) (testimony of Mark B. McClellan, MD,
Ph.D., CMS Administrator, Centers for Medicaid and Medicare Services).
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The existing long-term care system in this country is shouldered
almost entirely by family caregivers and public programs provided in
institutional settings, in overly medical ways that are often
unnecessary and needlessly expensive. Private insurance for long-term
care comprises only 3 percent of long-term care spending, and a recent
study showed that as few as 10 percent of Americans can even afford a
quality, private long-term care policy.\6\ The rest of the population
gains access to the existing public system by ``spending down'' to a
poverty level which triggers their eligibility for Medicaid and in
turn, the supports they need.
---------------------------------------------------------------------------
\6\ Id.
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The Government as well as the private sector has failed Americans
in planning for the onset of disability. Everyone is paying for the
inadequate, problematic system, and we are paying big. Long-term care
represents a massive financial imposition on families and States.
Approximately $160 billion was spent on long-term care in 2004, with
Medicaid financing approximately 42 percent of that figure.\7\ Nearly
one-third of Medicaid's entire budget of $300.3 billion is spent on
long-term care annually--that's approximately $94.5 billion dollars.\8\
Sixty-three percent of that $94.5 billion goes directly into
institutional care, despite the fact that the vast majority of those
needing long-term care would prefer to get these services in-
community.\9\ Research out just last year from the University of
California San Francisco and the University of Maryland estimates that
when compared with Medicaid institutional care, home- and community-
based waivers created a national average saving of $43,947 per
participant.\10\ As an example, the national average per-participant
expenditure for a nursing facility waiver was $15,784--63 percent lower
than the $42,292 national average per-participant expenditure for a
nursing facility.\11\ Even more significant savings were reported for
Medicaid waiver participants with an ``Intermediate-Care Facilities for
the Mentally Retarded/Developmentally Disabled'' (ICF-MR/DD) level of
care (70 percent lower expenditures than ICF-MR/DD expenditures) and
waiver participants with a hospital level of care need (84 percent
lower than hospital expenditures).\12\ Despite these findings, what is
guaranteed in the existing public system is a more expensive service
that people do not want, while the more cost-effective service
individuals would rather use is not guaranteed. How is this morally
justifiable or fiscally responsible? Why are we allowing this to
continue?
---------------------------------------------------------------------------
\7\ Kaiser Family Foundation (July, 2006). Medicaid and Long-Term
Care Services. Washington, DC.: Kaiser Commission on Medicaid and the
Uninsured.
\8\ Numbers taken from a report from Medstat Group, Inc., with data
taken from CMS 64 reports submitted by States and compiled by ADAPT.
\9\ Id.
\10\ Kitchener, M., Ng, T., Miller, N., Harrington, C. (2006).
Institutional and Community-Based Long-Term Care: A Comparative
Estimate of Public Costs. Journal of Health & Social Policy, 22, 32-33.
\11\ Id., at 38.
\12\ Id., at 39.
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I traveled to Nashville along with representatives from the U.S.
Department of Health and Human Services Office on Disability and the
National Council on Disability to meet with a large group of survivors
of nursing home and other institutions. All of these individuals had
been locked away and had portions of their lives stolen despite their
strong desire to live in their homes and communities. Their testimony,
which lasted almost 7 hours, was submitted to the Medicaid Commission
and is a part of the public record. The testimony also appears as an
appendix to this written testimony. As I sat and listened, person after
person, men and women, of all ages and races, gave accounts of being
left in their own urine and feces, tied to their beds, raped, burned,
deprived of food, put in bathtubs of cold water--sometimes as a result
of neglect but most often as retaliation for complaining about their
inhumane living conditions. It was particularly striking to me how many
of the witnesses talked about being forcibly medicated by facility
staff as a way to keep them quiet. As a person with a psychiatric
disability, I am very aware of how people get forcibly medicated in
mental hospitals--a practice which I view as a violation of those
individual's basic human rights. Based on the frequency of the
testimony in Nashville, it appears that forced medication is a tool
used by institutions of all kinds as a way to quell dissent and sap
people's spirits. Human rights violations are taking place every day in
every State in this country, and Congress has repeatedly failed to take
decisive action to end the abusive and unnecessary costs of
institutional care.
[Editor's Note: Because of the high cost of printing, previously
published materials will not be reprinted. For the above mentioned
testimony, go to www.adapt.org/freeourpeople/aar/nash06/
transcript.htm#andyimparato)3.]
Which of you, were you to acquire a disability tomorrow that
required long-term services and supports, would favor living in a
nursing home or other institution, slowly selling off your life as you
know it to live in conditions in which you forfeit your freedoms? Which
of you would feel any degree of comfort in the knowledge that your
loved one was forced to live in an environment with a legacy of human
rights abuses?
We have, in addition to this testimony, submitted a 10-minute DVD
to the record compiled by ADAPT, which highlights the testimony of
these nursing home survivors in Nashville. Each Senator should have
also received a copy of this DVD in advance of today's hearing. Many
have been quick to say that all we need is ``nursing home reform,'' but
nursing home reform is not the answer, and we hope that these peoples'
stories will help Senators to understand that. What we need is
comprehensive reform that focuses on the community as the first and
best option for long-term services and supports.
Although most people think that nursing homes are nice places in
which people receive excellent care, thousands of our organizations'
members are telling us that their own experiences in nursing homes have
been anything but helpful and compassionate. These testimonials do not
represent a handful of individuals. According to data from the Centers
for Medicaid and Medicare Services, there are over a quarter of a
million people living in nursing homes to receive long-term care who
want out! Chairman Kennedy, in your home State of Massachusetts,
according to data from a CMS report regarding discharge potential and
resident preferences to return to the community, as of 2003, there were
7,947 people living in nursing homes in Massachusetts who want out but
are ``stuck'' by the system Congress created.\13\ Ranking Member Enzi,
in your home State of Wyoming, there were 2,415 individuals as of 2003
living in nursing homes and over 1 in 5 of them--532 of them--said they
wanted out.\14\ These are people who not only prefer to live in the
community; many of these folks have unequivocally testified that they
would rather die than suffer the indignities and loss of independence
associated with institutionalized care.
---------------------------------------------------------------------------
\13\ Centers for Medicare and Medicaid Services (December 31,
2003), Minimum Data Set (MDS) Numbers for Question Q1a, available at
http://www.cms.hhs.gov/states/mdsreports.
\14\ Id.
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Even still, many remain convinced that many of the individuals who
want out of the nursing homes are people who could not survive outside
of them. This is simply untrue. Not only do these people want to move
out of nursing homes, they can, provided they receive the appropriate
services and supports to make it happen. Moving someone out of a
nursing home and providing the adequate level of supports to foster
their independence is not about charity--this is a matter of civil
rights and freedom.
Today, in America, the land of the free, we have over a quarter of
a million people in captivity--living in institutions for the sole
reason that the Federal money stream for the services they require only
provides services in those environments.\15\ Only approximately 11
percent of adults with developmental disabilities receive formal
residential long-term services, and of those who do receive services,
32 percent reside in institutional settings.\16\ Today, in America,
hundreds of thousands of people with disabilities are on waiting lists
for personal attendant services. Over 53,000 individuals with
developmental disabilities alone are on formal waiting lists for
residential services across the country--and as high as that number is,
we can trust it is grossly understated because States often do not keep
formal lists for fear of lawsuits.\17\ In many States, unless you're
being abused, severely neglected, or your informal family caregiver
dies, you are simply not going to access community services.
---------------------------------------------------------------------------
\15\ Numbers taken from a report from Medstat Group, Inc., with
data taken from CMS 64 reports submitted by States and compiled by
ADAPT, July 2006.
\16\ Braddock, D., Hemp, R., Rizzolo, M.C., Coulter, D., Haffer,
L., & Thompson, M. (2005). The State of the States in Developmental
Disabilities. Boulder: University of Colorado, Coleman Institute for
Cognitive Disabilities.
\17\ Prouty, R., Smith, G., & Lakin, K. C. (2005). Residential
Services for Persons With Developmental Disabilities: Status and Trends
Through 2004. Minneapolis: University of Minnesota, Research and
Training Center on Community Living/Institute on Community Integration.
---------------------------------------------------------------------------
Of those individuals who are fortunate enough to find provision of
long-term care outside of a nursing home or other institution, many are
receiving personal attendant services through an informal family
caregiving arrangement. In fact, 85 percent of the 22 billion hours of
personal attendant services provided each year are unpaid, exacting an
enormous and disproportionate toll on women who represent 69 percent of
all caregivers, nearly half of whom live below twice the poverty
level.\18\ Although the economic value of informal caregiving is
estimated to be over $306 billion a year, personal attendants rarely
make a living wage and seldom have access to health benefits, although
their jobs are characterized by a high rate of occupational
injuries.\19\ What will happen when these caregivers require care of
their own or pass away? Many families are plagued by these currently
unanswerable questions, because there is absolutely nothing comforting
about the system as we know it today. Of those individuals with
disabilities receiving home and community-based supports, over 21
percent report unmet needs in their personal assistance services.\20\
Such individuals with unmet needs are more likely to experience
inadequate diet and nutrition, discomfort, isolation, deterioration in
health status, and--bitterly ironically--institutional placement and/or
increased disability--and so the cycle continues.\21\
---------------------------------------------------------------------------
\18\ LaPlante, M.P., Kaye, S., Kang, T., & Harrington, C. (2004).
Unmet need for personal assistance services: Estimating the shortfall
in hours of help and adverse consequences. Journal of Gerontology, 59B,
S98-S108.
\19\ Arno, P. S., Levine, C., & Memmott, M. M. (1999). The Economic
Value of Informal Caregiving. Health Affairs, 18, 182-188; Kaye, S.
(2007) ``Trends in the PAS Workforce: Where Have We Been and Where Are
We Going'' presentation at ``Meeting the Nation's Needs for Personal
Assistance Services State of the Science Conference,'' April 27, 2007,
Washington, DC.
\20\ LaPlante, M.P., Kaye, S., Kang, T., & Harrington, C. (2004).
Unmet need for personal assistance services: Estimating the shortfall
in hours of help and adverse consequences. Journal of Gerontology, 59B,
S98-S108.
\21\Id.
---------------------------------------------------------------------------
It has been 8 years since the Supreme Court ruled in Olmstead v.
L.C. that the ADA prohibits the unjustified segregation of people with
disabilities through official State action and requires States to
administer services in the most integrated setting possible,
appropriate to the needs of the individual. Still, there is no change
in the Medicaid statute, 8 years later. One of the major impediments to
Olmstead enforcement is States' budget shortfalls. Since nursing homes
are an entitlement, and since the optional program ICF-MR have been
selected by every State but Arizona, States must fund those services.
However, community services remain an optional component, and so if and
when they are funded, it's with whatever ``leftover'' money there is
(or is not).
President Bush's New Freedom Initiative included a Money Follows
the Person demonstration project to encourage States to try the idea of
letting Medicaid dollars follow the person to the location in which
they desire to receive their services and supports, thereby integrating
people with disabilities into the community. Since January, CMS has
awarded 31 States and the District of Columbia demonstration grants for
alternatives to institutional care. As a result, 27,000 individuals who
want to live in their communities will be transitioned into them from
out of institutional care, made possible by an enhanced Federal
Medicaid match.\22\ States save money, the Federal Government saves
money when spending on community care rather than institutional care,
and people with disabilities can rejoin their family and friends in the
community.
---------------------------------------------------------------------------
\22\ CMS data, compiled by ADAPT.
---------------------------------------------------------------------------
It has been 13 years since Newt Gingrich introduced MiCASA in the
same spirit of the Money Follows the Person demonstrations. MiCASA has
evolved and was recently renamed the Community Choice Act, introduced
as S. 799 by Senators Tom Harkin and Arlen Specter. Thirteen years
later, there has still been no markup. Although every State that
receives Medicaid must provide nursing home services, community-based
services remain optional. The Community Choice Act is a bill that puts
highly personal choices back into the hands of those directly affected.
It is a bill about real choice. The bill gives equal access to
community-based supports for those eligible for nursing home and ICF-MR
services and provides enhanced Federal matching funds to help States
offer greater flexibility in giving citizens what they want. The
Community Choice Act creates a national program of community-based
attendant services and builds on the Money Follows the Person programs,
allowing the Medicaid dollars to follow the person wherever the
individual or his or her representative chooses to receive necessary
services and supports. Rather than make a new entitlement, the
Community Choice Act makes the existing one more flexible. It has been
13 years, and it is time this bill passed into law. Researchers have
re-estimated the costs of a mandatory Home and Community-Based personal
assistance services benefit under Medicaid to be between $1.4 and $3.7
billion per year, versus a prior CBO estimate nearly a decade ago in
the $10-20 billion range.\23\
---------------------------------------------------------------------------
\23\ LaPlante, M.P., Kaye, H.S., & Harrington, C. (in press).
Estimating the Expense of a Mandatory Home- and Community-Based
Personal Assistance Services Benefit Under Medicaid. Journal of Aging &
Social Policy.
---------------------------------------------------------------------------
The Direct Support Professionals Fairness and Security Act, H.R.
1279, introduced by Rep. Lois Capps, would also help to improve the
sustainability of the long-term care landscape. The act would amend
Title XIX of the Social Security Act to provide States with additional
funds by which to increase wages paid to direct support professionals
who provide assistance to people with disabilities under the Medicaid
program to eliminate the current wage gap. The act would also require
study of recruitment and retention of direct support workers. Although
increasing wages should never be at the expense of the consumer through
cutbacks on attendant services hours, increasing wages of long-term
care attendants is one way in which the pool of available workers could
be increased.
While these bills are vital in reforming Medicaid, which remains a
dumping ground that provides inadequate care to people who have already
been failed by every other system, their passage alone will not deal
with the fundamental problem of the general population's failure to
plan for the onset of significant disability. The Community Living
Assistance Services and Supports Act, or the ``CLASS Act,'' introduced
today in both the House and the Senate, creates a new program that can
take pressure off Medicaid and enable people to avoid being forced into
poverty. By encouraging people to begin planning and saving for the
onset of a disability from the moment they begin working, it creates an
alternative funding source to Medicaid for the provision of long-term
services and supports that does not require people to impoverish
themselves or stop working in order to gain access to the supports they
need. It allows the individuals who have saved for the onset of
disability spend the benefit however they feel is most appropriate
toward their long-term needs, be it a housing or transportation
modification, assistive technology, or personal attendant services. The
CLASS Act takes a realistic and responsible approach to disability, and
like the Community Choice Act, it's about real choice.
At AAPD, ADAPT, NCIL and SABE, we want to see these topics become a
leading 2008 election issue anytime candidates discuss their civil
rights platforms or health care agendas, so that whoever comes into
office in 2009 is committed to seeing these changes through. Many
Americans languishing today in institutions all over this country are
running out of time.
This is a crisis, and it should be handled like a crisis--with
urgency and full governmental support. Unless the Government steps up
to address these concerns in a bipartisan, comprehensive way, we are
going to see this crisis get even worse. Congress must ensure that the
principles undergirding the new infrastructure are based on real
consumer choice and meaningful dialogue with stakeholders, including
individuals with disabilities. As Congress considers reform of the
long-term care system, it will be tempting to make piece-meal change,
but the system will continue to falter unless we approach reform with a
comprehensive lens. We cannot afford to talk about long-term care
without also talking about personal attendant services, attendant
recruitment and wages, the integration of long-term and acute care
services, integrated housing, accessible transportation, and employment
accommodations. We can't afford to address each of these topics in
isolation from the others, or we will be having this same conversation
again in 10 more years because the system will still not work.
Comprehensive reform would entail finding a mechanism to take all these
funding streams and mold them into a comprehensive, focused long-term
services and supports system that places control in the hands of the
consumer not the bureaucrats.
We call on Congress to demonstrate leadership and take the first
steps down a path of comprehensive reform of long-term care. We urge
Congress to pass the Community Choice Act, which would reduce the
institutional bias in Medicaid. Pass the Direct Support Professionals
Fairness and Security Act, which would provide funds to States for
purposes of increasing the wages paid to direct care workers. Pass the
Community Living Assistance Services and Supports Act (CLASS Act) as an
alternative to the Medicaid ``poverty trap.'' Direct HHS to enforce the
integration mandate recognized by the Supreme Court in the 1999
Olmstead decision, and encourage CMS to create incentives for discharge
planners. Passage of these bills and work on these programs will not
``cure the crisis,'' but it will go a long way in building the
necessary groundwork from which to structure future reform.
Senators Dodd, Clinton, Brown, and Kennedy, thank you for your co-
sponsorship of the Community Choice Act. And thank you all again for
providing me this opportunity to testify. I welcome the opportunity to
answer any questions that you may have at this time.
Senator Enzi. I want to thank all the people for their
testimony today, and we're now to the finale.
We have Dr. Deborah K. Fleming, a Wyoming native who has a
30-plus year career in education, health care and
administration. Her varied background includes 4\1/2\ years at
the area Agency on Aging of the Navajo Nation Health
Department. She's been the Administrator of the Wyoming Aging
Division, and she's been the Director of the Wyoming Department
of Health.
She was elected to the State Legislature from House
District 36, and served as a member of the Labor, Health and
Social Services Committee during the late 1990's. Currently Dr.
Fleming is a clinical professor of Medical Education and Public
Health at the University of Wyoming College of Health Science.
She serves as a co-principal investigator for the Aging and
Disability Resource Center grant. She's the co-principal
investigator for the Office of Justice training grant on elder
abuse, and she designed and now teaches a course on aging and
disabilities.
Thank you very much for being with us here today, Dr.
Fleming. We look forward to your testimony.
STATEMENT OF DEBORAH K. FLEMING, PH.D., CLINICAL PROFESSOR,
UNIVERSITY OF WYOMING, COLLEGE OF HEALTH SCIENCES, LARAMIE,
WYOMING
Dr. Fleming. Thank you, Senator Enzi, for that very kind
introduction. I must say this is a tough act to follow. This is
truly, at this table, a class act. I am very humbled by my
colleagues and the fine work that they're doing.
Mr. Chairman, members of the committee, and the Senate
staff, I thank you for the opportunity to speak today about
long-term care and our country. I have worked in the fields of
aging and public health for three decades. And issues relating
to older persons and people with disabilities are very close to
my heart.
I come from a very rural State, actually it's frontier. And
for years I have watched families struggle with the challenges
of living in a place with limited options for home and
community-based care, a shortage of healthcare professionals,
and entrenched systems that make it difficult to access
services.
Finally, I am beginning to see some movement toward a
convergence. A nexus of disability services and aging services,
placing the focus correctly on the needs of the individual,
instead of what type of disability or category he or she
occupies. Nationally more program designs are granting
individuals the right to choose. There are States with pilot
projects and successful models that allow this to happen, not
only for young persons with disabilities, but also for our
elders who, in the past, have been faced with few options when
their care needs increased.
As Senator Enzi mentioned, in Wyoming we have an Aging and
Disability Resource Center (ADRC) that, since it's inception in
2005 has assisted over 300 people in receiving counseling,
guidance, and obtaining appropriate levels of service to meet
their needs. That same Independent Living Center that sponsors
the ADRC, also has a program called Project Out, which assists
people in leaving nursing homes, returning to their homes--
they've helped over 200 folks return to the communities, and
have saved the Wyoming Medicaid program $6.5 million.
The pilot sites for these kinds of projects need to be
expanded and adopted by more communities. Creative use of
Federal funds, Medicaid and targeted State dollars can enable
States to develop appropriate responses to long-term care
needs. The messages from the field are clear. First, we need to
accelerate efforts to streamline and consolidate these
complicated systems of care. These systems are very difficult
for the average individual and their families to navigate. I
experienced that some years ago with my own mother, as my
sister and I struggled to get the appropriate level of long-
term care for her. And it made me think, ``I'm a professional
in the field, and if my family had difficulty with this, what
do other people do?'' It's very complicated.
The second point is that we can improve access by providing
a single entry point into the long-term care system with
professional counselors to guide the process.
And third, we must keep the focus on the needs of the
individual, first and foremost. We have a long way to go and a
difficult history to overcome, but we are moving forward and it
is not a noble gesture or a monumental task, it is simply the
right thing to do.
In closing, I would like to thank the Senate committee
chairman, members and staff who have assisted me in preparation
for this hearing, and have provided the opportunity for me to
appear and to also share in writing the issues that I feel
passionate about. I thank all of you for your hard work and
progress on these critical issues. Indeed, if we as a country
are not able to cherish and care for all of our citizens, we
have seriously failed ourselves and our children.
Thank you.
[The prepared statement of Dr. Fleming follows:]
Prepared Statement of Deborah Fleming, Ph.D.
Mr. Chairman, members of the committee, and Senate staff, thank you
for the opportunity to speak today about long-term care in our country.
I have worked in the fields of aging and public health for three
decades, and issues relating to older persons and people with
disabilities are very close to my heart. I come from a very rural
State, and for years have watch families struggle with the challenges
of living in a place with limited options for home- and community-based
care, a shortage of health care professionals and entrenched systems
that make it difficult to access services.
Finally, I see some movement toward a convergence, a nexus of
disability services and aging services, placing the focus correctly on
the needs of the individual instead of on what type of disability or
category he/she occupies. Nationally, more program designs are granting
individuals the right to choose, to determine their own pathways to
independence, and live in the community as they desire. There are
States with pilot projects and successful models that allow this to
happen, not only for young persons with disabilities but also for our
elders, who in the past have been faced with few options when their
care needs increased. The pilot sites need to be expanded and adopted
by more communities. Creative use of Federal funds, Medicaid and
targeted State dollars can enable States to develop appropriate
responses to long-term care needs. The messages from the field are
clear: (1) we need to accelerate efforts to streamline and consolidate
these complicated systems of care; (2) we can improve access by
providing a single entry point into the long-term care system, with
professional counselors to guide the process, and (3) we must keep the
focus on the needs of the individual, first and foremost. We have a
long way to go, and a difficult history to overcome. But it is a start,
and we are moving forward. It is not a noble gesture, or a monumental
task. It is simply the right thing to do.
The Chairman. Thank you very much, Deborah, for your good
words and also the work of Shawn Griffin in mentioning some of
the additional complexities in rural communities.
Let me get, maybe Andrew and I'd like to ask the others
about the value of having individuals maximize their choice
between the nursing home and independent living. We have the
different proposals, Senator Harkin's proposal--which is an
excellent proposal--we've tried to do this with the CLASS Act.
What are the really important ingredients and guidance you
might give? These are obviously ideas, suggestions we have
made. But, what else should we be thinking about? What are
really, the elements that help give individuals the maximum
ability to have the kind of dignity, have the kind of
independence, have the kind of individuality so that they can
make these choices and decisions, and avoid the kind of
situation that you outlined, Andrew, in your final comments.
And how are we best going to be able to do it? Would we be
adding to what is the existing system, should we be looking at
something entirely different? Give us your insight.
Mr. Griffin. Thank you for that question, Senator Kennedy.
I think, you know, the Community Choice Act and the CLASS Act
work together well. Both of those acts are about giving people
real choices in where they receive the supports, and how they
receive the supports that they need to survive. If people don't
have a choice, then they are subject to the kind of abuses that
I heard in Nashville. And, unfortunately there are lots and
lots of Americans today that don't have a choice. So, it starts
with giving people a real choice.
We also have to address the issues around who is going to
provide the care. If we are not paying people adequate wages to
attract caregivers to provide the care, then it's going to fall
on the family caregivers. And that's who's providing the vast
majority of the care right now. So, we have to have a strategy
to address that. I know the Community Choice Act includes that.
I think that the CLASS Act would also support that, because
it's providing funding that people can use to pay people
adequate wages.
And then the third piece, which is something that I am
working on right now in the Ticket to Work and Work Incentives
Advisory Panel, is I think we need to move away from a
maintenance system into an investment system. We should be
investing in people with disabilities of all ages, to help them
live independently so they can contribute to their own support,
so that the Government can obtain a return on that investment.
Right now we do the opposite. People who are 18 go down to the
Social Security Administration and apply for SSI, and they're
basically retiring at age 18. That's bad public policy. We
should give young people the ability to work and get the
supports that they need, and not lose those supports because
they work and save money. So, that's the other piece, to me. We
need to invest in people, so that they can contribute to their
own support.
Thank you.
The Chairman. Let me go to Susan. You talk about the
employment, Senator Harkin referenced this. We need skills,
even though we have, in my State, 250,000 people that are
unemployed, there's 70,000 jobs that are out there, that are
looking for people. And we know those with disabilities have
talents to be able to--do you have any kind of suggestions for
us, so that we can make sure that people aren't going to be
discriminated against in terms of employment? You gave us a
reference earlier about a sad situation. Are there other things
that we ought to note?
Ms. Daniels. Well, I think you are very correct in
assessing that there's strong disincentive for people who need
personal assistant services to work, because they want to
qualify for Medicaid. And so it becomes a vicious circle for
them. If I become poor, and I do not earn enough income, then I
can get some help. And that is the situation of so many
families and people with disabilities. It's either to go it on
your own--all on your own--or give it up and get some help. And
that's a terrible, terrible choice. There are very, very few
people who actually can make it on their own. And there are a
whole lot of people who have given up, who have an awful lot to
share.
And so, I think we have to--one of the most important
things about whatever steps we take into the future on long-
term care is not to make it means tested. I think, I know that
actuaries love to make it means-tested, because it keeps the
cost down. But, if we go with a social insurance approach,
where everybody is paying into the system, and everybody can
then access the system, I think we make a much stronger program
and one that does not build in--just by its nature--a
disincentive for people to help themselves as much as they can.
Now, a lot of people couldn't make it without some help.
They don't have the earning capacity. But they can earn
something. And I think what we ought to be doing is trying to
encourage as much self sufficiency as we can. The only way I
know to do that is to get out of means-testing, and get into a
social insurance approach. It's the only thing that's fair,
really. Because any of us--well, not me--but any of you guys
could need long-term care. I already need it, and it costs me
about $50,000 a year to get the care I need. I am going to have
to work until I die in order to afford that.
So, again, I say to you Senator, I'm the lucky one. I can
work. And so I think we really need to think about sticking
with a non-means tested approach.
Can I say something else? I worry about this notion of what
everybody calls the ``woodwork.'' The latent need out there,
and if we have a program and all of a sudden everybody, almost
everybody qualifies for it. I don't really worry about that,
because nobody wants another person to come in and help them
toilet and get dressed if they can do it themselves. That
woodwork effect, to me, is really kind of silly. And, I know
it's an actuarial one in money you're going to have to deal
with, as people budget out what kind of approach this is. But
just think about it--would you want someone help you take a
shower if you didn't need it?
The Chairman. Thank you, Susan. My time is over. But I'm
going to just take, extend it for my colleagues.
Shawn, you mentioned these, the 650,000 disabled family
members and their parents being concerned about what's going to
happen to them. I mean, I think that's an enormous area of
anxiety for families, you referenced that. Maybe you can
comment a little bit further about how you found families are
able to deal with these kinds of challenges. This thing is
happening in our society, and we know it's happening. It's not
measured in the dollars and cents legislation, but it has
incredible importance. And I would be glad to hear you a
little, talk a little bit about what you've found in terms of
your own understanding of this situation.
Mr. Griffin. Thank you.
I guess from the provider's perspective--usually, these are
folks that we don't see until it's too late. I mean, these are
folks--and it's probably one of our fastest-growing
populations, and I think that's based on some of the
demographics of this country. But, as far as people we are
serving, these folks--and I don't want to use that woodwork
issue, but that's what happens. We get emergency calls from the
police force, or from our local Department of Family Services
saying, ``Guess what? So and so is now in a nursing home, and
they have a severely disabled child who is now in their 50's
who has never received support that now needs that.'' And so,
then the scramble begins. You know, how are we going to be
able--what are their needs, we don't know.
We had an example in a small town called Powell, in Powell,
Wyoming. We had some individuals who, their caregiver was very,
very elderly and she passed away. And there was, just a
scramble to get these folks served. They ended up in our State
institution, unfortunately. And that goes back to the question
you talked about earlier, as far as resource stuff. I think
that services need to--the community capacity needs to be
built.
Long story short, these folks are now being served in the
community program, and doing quite well. But they never should
have had to have gone to an institutional care. That's
something, in a lot of States, it's either that or nothing with
these people. Because a lot of States try to plan their numbers
based on who they know are in the systems, who are coming
through the school districts, so they have that seamless array
of services, which is better now than it used to be, because
they document these kids from birth and going through the
school districts, and our other youth waivers. But these people
that are staying home their entire lives--and it is a very,
very fast growing population, and all of a sudden they are
there. And it's more of a reactive response, as far as service
provision for these folks. And that's something that we hope to
try to avoid.
The Chairman. Senator Enzi, thank you.
Senator Enzi. Thank you, Mr. Chairman. And I'll direct my
first question to Dr. Fleming. I think we need a little more
emphasis on the single point of entry. And I would hope that
you would give us a little more of an explanation on what the
need is for a single point of entry program, such as the Aging
and Disability Resource Center.
Dr. Fleming. Well, thank you for that question, Senator
Enzi.
In my written testimony I included a graph, a chart that we
were using in the State to kind of show the pathway to access
to long-term care issues. And, it looks like an absolute rat
maze of people having to jump through several hoops and go
through as many as eight different steps to obtain the kind of
assistance that they need.
The beauty of a single point of entry--and I know that this
is a concept that's been tossed around in the country for a
long time and tried at various times, but the ADRC seems to be
getting a handle on this--is the fact that people can go to one
place, and there are trained counselors there, people who are
trained by other programs, Social Security, other independent
rehab kinds of programs. They know something about the
financial eligibility systems. They can sit down with that
person, one-on-one, help walk them through the system.
Now, in some States that have had ADRCs a few more years
than we have, they are making greater progress in terms of
streamlining the system, so that people can actually do a lot
of the eligibility application right then and there. Some of
them are having this kind of access online. So, workers can go
into people's homes, and help them fill out applications. So,
in other words, they don't have to make a stop at the Public
Health Nursing Office, the Department of Family Services which,
in our State does the financial eligibility, the senior
center--they don't have to go four or five different places.
They can actually enter the system there, have someone walk
them through that, stay with that family, work with them over
the period of time for their eligibility, and help them make
plans and correct choices.
Many of these folks that come into the Center are at a
crisis point. They are not thinking clearly. They are in a
panic. And it's very helpful for them to have these folks there
by their side throughout the system.
It's not perfect yet. It's in progress. It's a joint
project between the Administration on Aging and CMS, and those
agencies seem to be working well together to make this happen.
In the long run it will save money because people will be able
to avoid more costly institutional care. So, it does make some
sense from that standpoint. But, certainly for families, it's
just a very helpful resource.
The other value of the ADRCs, is that it's there for health
professionals who want to--information about what's available,
what's out there, what are resources in the community. And,
frankly, for baby boomers like myself who might want to make
some long-term plans for their own future. So, it serves
multiple populations of people. In our State we have it built
into a resource database that has thousands of resources
throughout the State that people can go online and find out
what's available in their own town, without even physically
going into that Resource Center.
Senator Enzi. I have some follow-up questions I'll do on
that, but since I am running out of time, I'll address that in
some written questions. In fact, I have written questions for
all of you, and by agreeing to testify, I think you agreed that
you would answer questions for us, and we'll appreciate that,
because we never have enough time to get the information that
we really need to get the kind of legislation that we need to
do.
So, I am going to move to Mr. Griffin. In your testimony
you mentioned an initiative that's underway that has the result
of the National Reduction Act, and the New Freedom Act. Can you
further discuss this voucher program, created by the Wyoming
Independent Living Center that allows qualified candidates to
hire drivers for personal appointments and activities?
Mr. Griffin. It's the transportation, and I think as
mentioned earlier, transportation I'm sure is an issue here in
Washington, DC., but it certainly is in rural Wyoming.
Transportation's always been an issue, and what you've
mentioned, and what I referenced in my testimony, was a voucher
program that was initially seeded by the Wyoming Governors
Planning Council on Developmental Disabilities, through our
independent living centers.
And, the voucher program is simply just that. You have,
basically, a checkbook if you qualify through your disabling
condition, you can use that checkbook to have your neighbor
take you to a doctor's appointment, have your neighbor take you
shopping, if you need to. And, you basically have a blank check
that you write for them, and then they cash that in. And so,
what it does, it certainly offers a lot more opportunities, a
lot more impromptu stuff, and a lot more natural supports being
delivered in our State.
As I said, it was seeded initially by our Governors
Planning Council as part of our long-range 5-year plan. And,
since then, the Wyoming Department of Transportation has
contributed monies to that program, and the voucher program is
now being processed throughout the State through our
Independent Living Centers.
Senator Enzi. If I had more time I would find out a little
bit more about how the one-point entry system coordinates with
the sorts of things you're doing. So, I'll address that in
writing, as well.
And I appreciate all of you being here today. I've learned
a lot from your testimony. Unfortunately, I'm going to have to
run to another meeting.
The Chairman. Thank you very much, Senator Enzi.
Senator Harkin.
Senator Harkin. Thank you very much, Mr. Chairman, and I
too, have a thing I've got to go to very shortly. But I just,
again, want to thank you, Mr. Chairman, thank you, Senator
Enzi, for having this hearing. I thank all of the people for
being here today.
Glenda Faatoafe.
Ms. Faatoafe. Faatoafe.
Senator Harkin. Say that again.
Ms. Faatoafe. Faatoafe.
Senator Harkin. Faatoafe. Well, thank you. I just wanted to
reassure you that this recent Supreme Court decision on the
Coat Cast, that we're preparing legislation to overturn that
decision. As you know, they based it on the 1975--actually in
1974, Congress passed an expansion of the Fair Labor Standards
Act. In 1975, the Department of Labor issued regulations on
that. It was to expand the Fair Labor Standards Act to cover
more people under minimum wage. They included a lot of things
like housekeepers and gardeners and chauffeurs and things, but
they said that, ``senior companions'' were more like
babysitters, and therefore were not entitled. And that's what
the Court based it on.
So, I just want to assure you that we are working, Senator
Kennedy's staff, and I and others are working together to draft
legislation to overturn that. So, hopefully we can get that
done this year.
I also hope that all of you that are here in this room and
the other room watching, and those of you, especially with NCIL
who are here this week--I don't mean to exclude ADAP, you can
join in, too--we really need you to press forward on getting
the Finance Committee of the Senate to have hearings. To have a
hearing on both the Community Choice Act and also the CLASS
Act. And I want to ensure you, Andy, that I was a co-sponsor of
that bill last year and I'm on Senator Kennedy's bill again
this year. Rest assured, if there's any doubt about that.
But we need you to really ask members of the Finance
Committee to have these hearings as soon as possible. I think
the time is right. I think that we have waited way too long on
getting both these bills passed. The Community Choice Act has
been out for a long time, it's got all the new data now, on the
Community Choice Act, and it's time to put this kind of sad
chapter behind us. We've been on this now for over, what 10
years now, I guess 12 years, something like that. And, it's
time to move on it.
So, I just hope that you will use your presence here to
educate members of the Finance Committee about why we ought to
have hearings on this.
I have a lot of questions I could ask. All of your
testimony has been wonderful. And, I think, again, it just
brings home again to us that in this society of ours, we just
can't continue on the way we are doing this. Not only is it
wasteful money, and all of that kind of stuff, it's just
inhumane, the way we treat people now with disabilities in our
society.
We have made some great strides in the past. We have opened
the doors, and passed a lot of good legislation. But, unless
and until we address this issue, well, the two that I mentioned
earlier--one of independent living, first and foremost, and
then economic self sufficiency. To me, those are the two things
that we have really fallen down on. And, all of you have spoke
about that, and testified to that. And, I just hope that we can
now get the country behind us, and move on both the CLASS Act
and also legislation to overcome the Supreme Court decision and
getting the Community Choice Act passed.
We need your help. I was here, we were here in the 1970s.
We were here in the 1970s and the 1980s, when we led up to the
ADA. And, it didn't happen overnight, but it just--we just had
to keep pushing and pushing and pushing and pushing. And
finally, things came together.
Well, hopefully things are now coming together on these
issues here, on independent living and making sure that home
healthcare givers, like you, Glenda, are paid decent wages and
salaries. And, what could be more important to our society than
that? Nothing.
Ms. Faatoafe. Senator, one of the biggest problems is that
in the next 10 years, we are going to need 3 to 5 million more
of me.
Senator Harkin. Yes.
Ms. Faatoafe. And, because there's a lot of baby boomers
getting older every day. And I figure, I am the last one.
[Laughter.]
I was born in 1962, so, technically I'm the last baby
boomer, and I'm going to be taking care of the first baby
boomers, and I am already.
Senator Harkin. Right, right.
Ms. Faatoafe. And so, if we don't get this straightened out
now, we are in for a huge, huge problem.
Senator Harkin. Well, maybe I shouldn't say this, but what
the heck, I've got the mic.
[Laughter.]
You know, people talk about the cost of it and everything.
Well, we had the $10 billion to $20 billion before. Now Dr.
Laplant did his study, about one to three--is that right, Andy?
Something like that, $3 billion a year. That's a lot of money.
It makes me sick, it makes me sick to think that we are
spending $10 billion a month in Iraq.
[Applause.]
Senator Harkin. And, we can't spend $3 billion a year on
independent living? Makes me sick.
Thank you, Senator Kennedy.
[Applause.]
The Chairman. Good.
OK. Thank you, Tom. I think Tom has spoken for all of us on
that issue.
[Laughter.]
Monica, I want to thank you, thank your wonderful son,
there, Ellington. He's had an enormous, he's got incredible
patience, and you've got a wonderful friend who's been with
him, but we really appreciate your presence here, and the
comments that have been made.
You know it's really--I would hope, just to add to what Tom
said about the Finance Committee--we have a lot of Presidential
candidates that are out there now, too. And there's no reason
that they shouldn't be answering about what they are going to
do on these, as soon as they get that nomination. And, as we
have here, this is bipartisan, it isn't a defining issue. We
had bipartisan support in terms of all the great issues, we had
the march forward, we did--we had the bipartisan issue on Civil
Rights, we had it on the Medicare, we had it on the Medicaid,
we had it on the Americans with Disabilities Act. We have had
it all on the issues of human decency, human dignity, human
fairness in terms of our society. And you have outlined a
compelling case. And it's really up to this country about its
response. I think you should feel up here that we are prepared
to do it, and the best way we can thank our panelists is to
indicate that we are prepared to move ahead, and will do
everything that we possibly can.
We need you to let the folks know out there in the field, I
think we got the message, I certainly heard it--that's just
your intention to do it.
So thank all of our witnesses for coming, you have traveled
a long way. Your message has been enormously powerful. We hear
it. It's well received, we are going to followup on it. We
thank all of you. We thank all our guests that are here. We are
enormously impressed by your commitment and dedication. You can
help us, as Senator Harkin has pointed out, by helping to get a
hold of our colleagues and friends and let them know that this
country will be a fairer and more just Nation when we pass
those pieces of legislation.
This committee stands in recess. Thank you very much.
ADDITIONAL MATERIAL
Responses to Questions of Senator Enzi by Susan M. Daniels
Thank you for the opportunity to give additional input.
Question 1. In your testimony, you wrote about the need to ensure
access to an appropriate array of institutional and home and community-
based long-term supports. We have heard testimony today about the Aging
and Disability Resource Centers. It seems to me this is the kind of
access you want to ensure.
Would you like to see this program expanded?
Answer 1. The resource center concept is an excellent way to
organize a service delivery to people who are very vulnerable and in
great need. I would recommend that these centers be linked with
Independent Living Centers (http://ncil.org/) established several
decades ago. The accumulated knowledge and experience of Independent
Living Centers along with additional funding could provide an extremely
strong base for the development of Aging and Disability Resource
Centers.
Question 2a. From your testimony, I see that you support a social
insurance program through payroll deductions that would offer universal
access to a basic, limited long-term care benefit. Are you talking
about a program that is separate from Medicare and Medicaid.
Answer 2a. I believe that the social insurance approach to funding
long-term care is the right one. It is difficult to recommend at this
time whether the program fits more comfortably in the Medicare program
(using the social insurance approach with a mixture of other funds),
the Medicaid program (State administer with the State and Federal
dollars) or some new entity. I believe these decisions are primarily
administrative. More important is establishing the large contributors'
base with sufficient revenue collected and as many people covered as
need be. The social insurance model is well suited for funding
unpredictable catastrophic costs, which is the basis of any insurance
program.
Question 2b. Please describe the program you envision.
Answer 2b. I believe that the best program in this arena should
reflect the following broad guidelines with substantial room for local
and idiosyncratic needs.
1. Choice--give people better choices about the services, supports
and providers.
2. Care planning must be person-centered, one person at a time.
3. Quality should by measured by focusing on achieving people's
health and social outcomes.
4. Consumers must have opportunities for self-directed care.
5. Mechanisms must be in place for unbiased mediation to help
resolve potential disputes between care providers, management
organizations and consumers.
6. Workforce: Specific mechanisms must be in place to address job
satisfaction, wages and benefits, working conditions and retention
efforts, all of which have a direct impact on quality and continuity of
care.
7. Consumers' views must inform the management of care provider and
management organizations.
8. Organizations providing or managing the new system must be
value-driven and those values should be consistent with all the items
listed above.
9. Organizations proposing to provide or manage local systems must
collaborate with all stakeholders, including consumers, advocates,
counties, and private providers.
Question 3. This question is for Glenda but all others on the panel
may answer it as well. Self-direction has proven to be a cost-effective
and efficient model for the delivery of services as the person is in
charge of selecting services, negotiating prices, etc. In your
opinions, could wages increase or decrease for direct care staff if
self-direction, allowing people to select their own staff, was used
more broadly?
Answer 3. I do not have any specific information that can answer
this question. I believe there has been enough research to find the
answer, however. I direct your attention to the Robert Wood Johnson
Foundation.
Responses to Questions of Senator Enzi by Monica Herring
Question 1. One of the concerns highlighted in your testimony was
the complexity of the long-term care, community services and support
system. We just heard testimony from Dr. Deborah Fleming regarding one
of the goals of the Aging and Disability Resource Center's (ADRC),
which is to help navigate such system. Would being able to access a
system such as this be beneficial to you as you are helping Ellington
navigate through the system? Did you know that an ADRC is located in
Rockville?
Answer 1. Yes, I believe as he ages it will play an integral part
throughout his life span. Since moving to Montgomery County, Maryland 2
years ago I have become familiar with the County resources. I have: (1)
joined the Montgomery County ARC as a member receiving the newsletters
and attending information sessions; (2) made contact with the County's
Department of Health and Human Services, Aging & Disability-Community
Support Network Office staff to find out what services are available
and access requirements for the services; and (3) A fact worth
mentioning, I'm a county employee for the Department of Health and
Human Services. This will give me the opportunity to stay connected and
on top of issues that will impact Ellington's future as a county
resident and service recipient.
Question 2. What can we do to help get out the word regarding the
ADRC's so that more people are aware of and access them?
Answer 2. Since becoming an advocate for my son and others and
working with other disability advocates, I believe that individuals and
organizations dedicated to reaching out to families are constantly
discovering new approaches to reaching out that prove to be effective,
however, we must remember that being consistent, open-minded,
culturally sensitive, and flexible will be the measurement of our
success. From the Federal level I believe that continued support to the
State's in funding for outreach is imperative. Speaking for myself,
remembering some years ago my frame of mind as a new mom, as a young
mom, I choose to extend myself to a new family in whatever capacity
they need me to be in to share the information that I know or to refer
them to someone who can provide answers to the questions they may have.
I've done this by:
Making myself available by offering my personal contact
information to use at anytime.
Visiting the family and introducing them to mine.
Introducing them to other families.
Sharing information that I may receive that could help
another family.
Encouraging a family to become involved in public meetings
on issues that impact them.
Question 3a. Most families try to save money so they can help their
child go to college, pay for a wedding, or other types of major life
events. What would happen if you tried to do so for Ellington?
Answer 3a. My understanding so far is that depending on what type
of investment vehicle I choose to save for Ellington's future may
impact the public benefits he currently receives once becoming of age.
Recently the Montgomery County ARC did an Info session on this very
topic and what I got from it was that the best option available today
would be a special needs trust. Since then, I have followed up with
investment experts and talked to other families who have chosen this
route to save for there child's future and this is an option that I
have chosen for Ellington.
Question 3b. So, if you were able to save $25,000 over the course
of your life in order to help Ellington pay for services that would
help maintain his life in the community or if Ellington wanted to save
for his future in a 401K he would lose his benefits if he were on
Medicaid, and then be required to spend that down before being able to
become eligible for services? It could not be used to offset some of
the Medicaid expenditures?
Answer 3b. I'm not clear what the followup question is? However, in
planning for Ellington's future it is my hope that if I should pass
before him that what I'm putting away for him now would function as a
supplement to his public benefits package and be accounted for and
distributed in a way that does not jeopardize that.
Question 4a. Do you believe that consumer control or direction
should be part of all government-based disability programs--that would
include Medicaid, Vocational Rehabilitation, and others?
Answer 4a. Yes. I believe it should be a philosophy of thinking
that should spread across all government-based disability programs.
Question 4b. How do you see Ellington using self-direction if it
were an option? Would he need assistance?
Answer 4b. I see Ellington using self-direction if he were to
remain at home to select his direct care staff supports that will
assist him in the home and outside the home, similar to how it is now.
I look to Ellington for his approval on selection of support staff who
will work directly with him. It has been a success thus far. I have
learned to observe his body language and gestures that for the most
part come across clear in expressing his likes and dislikes. If the
option to live independently in the community was chosen self direction
would extend to not only selecting support staff, but where and who he
chooses to live with. Through the years Ellington has developed
relationships on his own with classmates in his school and I have with
the parents. I think about how neat it would be if Ellington were to,
as an adult, have the opportunity to live independently with a friend,
a buddy that he for the most part grew up with and they share common
needs. In fact, as a part of my need now to begin Ellington's future
planning into adulthood which is less than 10 years away, I've begun to
share this idea with other families with similar future goals for their
child in hopes that we can begin to plan our children's future
together. At this point we can map out what it is we want to have for
our children, assess the current system's ability to deliver and, if
necessary, figure out where we need to change agents and advocate for
change.
Response to Questions of Senator Enzi by Glenda Faatoafe
Question 1. Have you or any of your colleagues participated in
professional development activities such as those offered through the
University of Minnesota College of Direct Support or ARK Regional
Services in Laramie, Wyoming?
Answer 1. Home care workers in Washington State currently receive
virtually no training. Most home care workers get 32 hours of very
basic introductory training when we are hired, and 10 hours of training
every year. That's why we were excited to pass a new law this year that
will dramatically improve training in Washington State starting in
2010, including peer mentoring and advanced specialty training.
Question 2. In one of your recommendations you suggest reversing
the Supreme Court's decision that upheld the exemptions of home care
workers from the minimum wage and maximum work hour provisions in the
Department of Labor regulations under the Fair Labor Standards Act.
Wouldn't mandating a higher wage make these valuable services
inaccessible for many people?
Answer 2. A large proportion of the services provided by homecare
workers is publicly funded. Medicare and Medicaid account for more than
half of the funds paid to free-standing homecare agencies. The Federal
and State Governments should not purchase these essential services at
prices that depend on workers not being paid consistent with the
minimum standards of the FLSA. While SEIU believes cost-
containment is important, refusing to pay workers fairly--whether
through public or private dollars--for the work they do is not an
acceptable way to keep costs down. Suggestions that extending these
minimum protections to homecare workers will lead to excessive costs
are belied by the fact that a significant number of States already
cover homecare workers under the State wage and hour laws. The Federal
Government needs to follow the example of these States.
It is precisely because home care services are so important that we
need to ensure that a reliable, stable workforce of caregivers like me
is available to provide the quality care that our seniors and disabled
deserve. Keeping workers like me in poverty with substandard wages
would only augment a fundamental barrier to home care: the lack of
reliable, professional workers.
One major impediment disabled people face when they try to get
homecare is not being able to find a worker who can meet their needs,
as well as dealing with continued turnover--both caused in large part
by low wages. As you said, home care workers like me provide a valuable
service to American families. We allow people to stay at home, where
they want to be, and help States keep costs down by providing an
alternative to an institution. To address the high turnover that strips
people of a viable option to live at home, the compensation workers
like me receive should reflect the high value of this extremely
challenging work we do.
In fact, continuing to marginalize home care workers from some of
our Nation's most basic workforce protections that will restrict access
to services, as the relative supply of workers shrink in response to
truly inadequate wages. There will be increasingly fewer people willing
to commit to this difficult work and resign themselves and their
families to lives of poverty and hardship. Even today, American
families are being pushed to the brink struggling to find care because
there is no stable, professional home care workforce in place.
Extending these basic worker protections to this valuable workforce is
a necessary first step in ensuring a sustainable model for both workers
and consumers and promoting cost-effective, high quality care. States,
like my home State of Washington, and others like Michigan, have begun
to recognize that we can't afford to continue down the same path with
Medicaid funding. Legislators in those States have made the tough
choice to invest more money in home- and community-based services,
specifically in raises for workers, to address the high turnover and
workforce shortage that compromise the quality of care--by bringing
more caregivers into the field and keeping them in the field.
Question 3. This question is for Glenda but all others on the panel
may answer it as well. Self-direction has proven to be a cost-effective
and efficient model for the delivery of services as the person is in
charge of selecting services, negotiating prices, etc. In your
opinions, could wages increase or decrease for direct care staff if
self-direction, allowing people to select their own staff, was used
more broadly?
Answer 3. SEIU fully supports the right of individuals to direct
their own care and believe every effort should be made to consumer
direction in a manner that expands consumer access to the services they
need, including ensuring an adequate, well-trained, high-quality direct
services workforce. Basic economics would say that when demand
increases for a service, wages paid to workers for that service would
also increase. However, I think the answer here really lies in how
States structure their consumer-directed Medicaid programs, and whether
individual budgets are sufficient to provide adequate wages for
workers. Theoretically, letting individuals hire workers directly,
would allow for higher wages, as administrative costs would be lowered.
Moreover, home care is much more affordable than premature
institutionalization due to lack of viable alternatives. Nevertheless,
if individual allowances were so lean that individual consumers could
only offer sub-standard wages, or pay for significantly less hours of
care than were really needed, consumer direction would fail.
Providing individuals and their families the freedom to decide the
care they need and select their providers is of limited use if they are
then left to navigate the market on their own. What good is a budget
you control if you can't find the worker you need? How is an
overburdened consumer or family expected to also take on the added
responsibility of being a recruiter, a manager, handling payroll and
taxes, and dealing with absenteeism and turnover, as well? To be sure,
some families will have the resources to rise to the challenge, but the
system should not be built on this assumption.
The most successful consumer-directed programs have been those that
included consumer assistance and workforce development components
organized as Quality Care Councils. For example, in Oregon, Michigan,
Dane County Wisconsin, Massachusetts and California, quasi-public
entities governed by community boards (with consumers with disabilities
their majority) help match clients and workers, provide training, and
have succeeded at growing the workforce, reducing turnover, increasing
wages and in some cases, providing benefits, while expanding hours of
care. We believe that CLASS does a good job of addressing these issues
by encouraging structures that would allow for co-employers to help
families with the administrative burdens of consumer direction, and
provide opportunities to improve working conditions.
Responses to Questions of Senator Enzi by Shawn Griffin
Question 1. You discussed the need to examine a more comprehensive
long-term care system. During Dr. Fleming's testimony she spoke about
Aging and Disability Resource Centers (ADRC's) serving as ``single
entry points'' into the long-term care system. It seems that this type
of ``one stop shopping'' would be beneficial to address some of the
concerns you highlighted in your testimony. Has the Community Entry
Services program ever used the assistance of an ADRC? Do you think your
program would benefit from this type of assistance?
Answer 1. No, Community Entry Services has not used the assistance
of ADRC. I do not know enough about the program to comment on our
potential usage. I would say at this time that the populations we serve
already use an established point of entry that will not be replaced by
the ADRC. Programs like CES have been established in local communities
for over 30 and 40 years. Therefore, people served by our agencies and
their families are usually familiar with contacting our agencies as a
resource to enter the ``system.'' I do not think the ADRC programs are
disseminated throughout the State or more accessible. I feel it will be
beneficial, but not necessarily for those we support.
Question 2. In your opinion would a minimum wage mandate help
increase wages for direct care staff or per your testimony is this a
Medicaid reimbursement issue?
Answer 2. The simple answer to this is no, minimum wage mandates
would not allow for an increase in staff wages at our agency as we are
paying what our budget allows. We do not stand to gain as a not-for-
profit by not paying the most we can to our staff and likewise we do
not pay exorbitant salaries to our already lean administrative staff.
The longer answer is yes it is directly related to the lack of Medicaid
reimbursement. Medicaid does not cover costs for services and certainly
has not kept up with the cost of living over the past several years,
especially by Wyoming standards. A mandated minimum wage in our
industry, based on my program and knowledge in our non-profit world
would be impossible without an accompanying increase in funds. Our
current starting wage almost doubles the Federal minimum requirement as
it stands. We feel a strong need to increase wages substantially in
order to stabilize staff turnover and vacancies.
Question 3. This question is for Glenda but all others on the panel
may answer it as well. Self-direction has proven to be a cost-effective
and efficient model for the delivery of services as the person is in
charge of selecting services, negotiating prices, etc. In your
opinions, could wages increase or decrease for direct care staff if
self-direction, allowing people to select their own staff, was used
more broadly?
Answer 3. This is a difficult question. I believe all services
should be self-directed and allow people to select and hire their own
staff, which can be done in the current Wyoming waiver system. More
broadly used self-direction toward staff selection and purchase of
services may work great for many people. However, as States continue to
restrict the eligibility of those qualifying for services, I am
concerned that the ability to actually choose one's own staff is
compromised cognitively. In some cases the usage of self-direction can
actually result in reducing necessary services. I believe it will work
great for some people and have devastating effects upon others
dependent upon numerous factors. Many people who advocate for this
should and can effectively choose and advocate for themselves. In my
opinion many of these same people would do fine with minimal or no
support but tend to get caught up in this ``set our people free''
movement, when in fact they are very employable. It is persons with
more severe disabilities, without family advocates and/or sincere
friends advocating for them that may concern me. Both those with good
and bad intentions can exploit these people. As stated above, I believe
the usage of more independent self-direction services will be wonderful
for many, but should be approached cautiously by others, as it is not a
catchall program.
Responses to Questions of Senator Enzi by Andrew J. Imparato
Question 1a. You state in your testimony that President Bush's New
Freedom Initiative included a Money Follows the Person demonstration
project to encourage States to try the idea of letting Medicaid dollars
follow the person to the location in which desired services and
supports could be rendered. You further state that since January, CMS
has awarded 31 States and District of Columbia demonstration grants for
alternatives to institutional care. Do you see that as a positive trend
for the future?
Answer 1a. Yes. However, notwithstanding the recent positive trend,
the rate of progress toward community-based supports and services does
not come close to meeting the longstanding and ever-growing demand for
home and community-based services and supports within the disability
and aging populations.
Question 1b. I understand that 38 States report that expansions of
community-based services are planned for fiscal year 2007. It seems to
me the trend is toward providing more of these services. Would you care
to comment on this trend?
Answer 1b. Yes, States are slowly starting to respond to the
longstanding demand for long-term home and community-based services and
supports. So, while it is indeed a positive trend, again, the rate of
progress is still inadequate. People's lives are being unnecessarily
stolen by our antiquated public policies, and the recent progress does
not undo the serious problem that has been around since the beginning
of the Medicaid program.
Question 2a. In your testimony you stated that you support the
Community Choice Act (S. 799) introduced by Senators Harkin and
Specter. You state that this bill creates a national program of
community-based attendant services and builds on the Money Follows the
Person programs allowing Medicaid dollars to follow the person wherever
the individuals or his representative chooses to receive necessary
services and supports. Does this approach work within the current
system to make it more flexible?
Answer 2a. The current system is inherently inflexible because of
Medicaid's built-in institutional bias. The Community Choice Act (S.
799) is an excellent way to remedy the fundamental problem with
Medicaid. Money Follows the Person programs are a step in the right
direction, but they don't solve the problem.
Question 2b. What are the estimated costs of such an approach or
the cost savings?
Answer 2b. In research released just this year, estimates of the
cost of a mandatory home and community-based personal assistance
services benefit under Medicaid were projected between $1.4 and $3.7
billion per year,\1\ in stark contrast to a prior CBO estimate nearly a
decade ago estimating costs in the $10-20 billion per year range.
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\1\ LaPlante, MP, Kaye, HS, & Harrington, C. (2007). Estimating the
expense of a mandatory home- and community-based personal assistance
services benefit under Medicaid. Journal of Aging & Social Policy,
19(3), 47-64. DOI: 10.1300/J031v19n03_04.
Question 3a. Doesn't this program [the Community Living Assistance
Support and Services Act (CLASS Act)] create a new entitlement program
by increasing withholding taxes?
Answer 3a. No, in fact, the CLASS Act takes pressure off of
existing entitlement programs by encouraging individuals to begin
saving for the onset of disability from the moment they begin working.
Question 3b. I realize individuals can opt out of this program but
doesn't that create adverse selection so that only those believing they
will need long-term care will have the withholding and the healthy
population will opt out of the automatic enrollment?
Answer 3b. There is a small risk of adverse selection. However,
because it is a voluntary, opt-out program, an individual will have to
affirmatively decide not to participate, and we believe most people
will participate. Because the monthly premium is such a small amount of
money, our expectation is that individuals will decide to participate
in financially planning for the costs associated with the onset of
disability or chronic illness.
Question 3c. What is the possibility of this changing from
automatic enrollment into mandatory enrollment?
Answer 3c. We have received strong commitments from Senator Kennedy
and other supporters of the CLASS Act that this will not be a mandatory
program.
Question 3d. In light of the solvency challenges in the Social
Security, Medicare and Medicaid programs, do you believe additional
taxes are the answer?
Answer 3d. I do not view encouraging individuals to voluntarily
save for the onset of disability to be a tax.
Question 3e. Do you think Medicare and Medicaid need to be
reformed? And if so, shouldn't the issue of long-term care be part of
that reform?
Answer 3e. Yes, I think Medicare and Medicaid need to be reformed,
and yes, I think long-term care should be a part of that reform. Please
refer to my written testimony for a more thorough address of this
topic.
Response to Questions of Senator Enzi by Deborah Fleming, Ph.D.
Question 1. We know that many in need of long-term care don't know
how to begin to find out about or access services. How do ADRCs get to
those people most in need of long-term care services and supports?
Answer 1. In developing the program plan for the ADRC in Wyoming,
we crafted a marketing strategy that included use of media--a press
release to all media outlets, taping of Public Service Announcements on
Casper radio stations; appearances on TV news and talk shows;
distribution of brochures and flyers; and an open house at the Resource
Center. Other, more informal means of distribution included having
blurbs in church bulletins, speaking at service club meetings, at the
senior center, and informal word-of-mouth. One important role of the
ADRC is to establish formal linkages with ``critical pathways'' to
long-term care services and supports. ``Critical pathways'' are defined
as those places, including hospitals and physician offices, where
people in need of long-term care are likely to pass through at the
point at which they need care. By establishing strong connections with
such entities, ADRCs are able to get to those individuals most in need
to assist them in understanding the full range of services available
and accessing those services that best meet their needs and
preferences. To date, nearly half of those individuals contacting ADRCs
were referred by critical pathways.
In Casper, ADRC staff made appointments with hospital social
workers (discharge planners), nursing home social workers, home health
and public health nurses and Department of Family Services staff to
educate them about the ADRC and to ask for referrals. A special session
was held with outreach and clinic staff at the Community Health Center
of Central Wyoming, to ensure that the large CHCCW population of
Medicare and Medicaid patients would be reached. In years two and three
of the grant our target populations will expand to persons with
developmental disabilities and to individuals with mental illness, so
particular outreach efforts will be made with DD programs, the
community mental health center and Wyoming Behavioral Institute.
Not only did ADRC staff provide training to a number of community
agencies, they also received extensive training in Social Security
Benefits, Medicare (parts A,B,C and D) and participated in cross-
training with Wyoming State Health Insurance Information Program
(WSHIIP) staff. All of this effort helps get the word out to clients of
these other programs, and community staff now knows to refer
individuals to the ADRC.
Finally, the establishment of a statewide ADRC Advisory Council and
a local Task Force for the ADRC also helped to spread information about
the ADRC.
Question 2. What about people who aren't eligible for Medicaid and
who don't have Long-Term Care Insurance--how do they get services?
Answer 2. One of the primary functions of an ADRC is to assist
individuals and their families in understanding the full range of
services available, both public and private. ADRCs are designed to
serve people regardless of income. Medicaid and non-Medicaid consumers
are served using the same process of information and assistance. ADRC
counselors assist individuals in understanding their unique needs and
preferences and aid them in obtaining the assistance, both formal and
informal, that will help to meet those needs. Some individuals not
eligible for Medicaid-funded services may be served through Older
Americans Acts programs, State revenue long-term care services, or
programs funded through other sources. Others may have needs that can
be met through informal resources such as family, friends, and faith-
based programs. Some individuals may have private resources to assist
them in obtaining services but need the assistance of the ADRC to help
them determine the best use of those resources. In addition, health
professionals seeking information to better serve their patients are
assisted, as well as baby boomers who want to learn how to better plan
for their own future long-term care needs. Of the over 400 individuals
served to date at the Resource Center in Casper, there are numerous
examples of folks who ``fall through the cracks'' due to income
eligibility, lack of planning or unforeseen circumstances. Here are
some concrete examples of the types of help that can be offered by ADRC
staff:
(1) Connection to the range of Older Americans Act programs
administered by the senior center including in-home chore service,
nursing, transportation and meals at a reasonable price. Prevention
services include immunizations, screenings, health promotion education
and exercise programs. These services are provided using a sliding-fee
scale, reasonable set fee or are free. Senior Companion Program
services are at no cost to the client. Meals on Wheels operates on a
sliding fee scale with a reasonable maximum cost per meal.
(2) Basic financial assessment/referral regarding social security
and also low-
income housing, energy assistance food stamps, and other income-based
programs that may include services to people with incomes above the
Medicaid-eligibility level.
(3) Other agencies that serve persons with disabilities would be
considered: if the person is in need of a disability assessment, he/she
would be referred to the Division of Vocational Rehabilitation--there
might be education or employment services appropriate for the
individual. There are other employment opportunities in the community,
including employment programs for older adults, so referrals are made
to the Department of Employment, the senior center and the Wyoming
Senior Citizens, Inc. Casper College has information about adult
education and special training programs available in the community.
(4) Discussion of health care on a sliding-fee scale, which can be
obtained at the Community Health Center, the Veteran's Administration
(for veterans) and public health nursing; mental health and substance
abuse treatment services at the Central Wyoming Mental Health Center;
and some assistance with prescription drugs through Interfaith. ADRC
counselors can review the services/information available through the
WSHIIP to help provide access to those offerings.
(5) Referral to transportation services of the Casper Area
Transportation Coalition (with a per ride cost); Department of Family
Services also pays for some transportation in emergency circumstances
and for medical appointments. Wyoming Independent Living Rehab operates
a voucher transportation service (using private drivers) in several
communities.
(6) A referral to a program providing case management services
(such as is found in the Developmental Disability programs and some
Older Americans Act programs) can connect an individual to a
professional with ability to develop a specific plan of care that will
weave together needed services and funding streams. The plans are
reviewed on a regular basis to determine changing needs and ensure
proper use of funds.
(7) In some cases, there are sources of assistance within the
neighborhood (a neighbor who can provide shopping, transportation,
etc.) or family members who can do chores or collectively contribute
(financially) to the care of a loved one. The counselor can suggest the
individual at least consider that kind of help, or refer the person to
a professional social worker/case manager. Likewise, at times there are
``pockets'' of special funding (through Robert Wood Johnson,
foundations, private donations) that are available for specific
projects in the community. Often the general public is unaware of such
opportunities or how to access the services, and the ADRC counselor can
direct the consumer to specific assistance.
Question 3. Is there a single ADRC model that is being developed
across the country?
Answer 3. No. The ADRC initiative has been designed to allow for
flexibility based on a State's unique existing long-term care system.
AOA and CMS recognize that no State's LTC is exactly the same. ADRC
grantees are directed to partner with key State and community-level
stakeholders to create an ADRC system that builds on existing State
infrastructure and systems to streamline access to long-term care for
all ages of consumers with disabilities. A number of different models
are emerging across the country. The Massachusetts Area Agencies on
Aging (AAAs), for example, are partnering with Independent Living
Centers to create an ADRC system serving individuals of all ages and
incomes with disabilities. In Alaska, five regional Independent Living
Centers are taking the lead in their ADRC systems coordinating closely
with community-based senior centers across the State. In Maryland and
Illinois, in addition to piloting a AAA-based model, they are piloting
models based out of county Health Departments. In New Hampshire and
Florida, plans are being made to use the experience of the pilot
centers to ``take the ADRCs statewide'' with regional centers
strategically-placed across the State. These are just a few of the
models that are emerging to address both existing State systems and
community preferences.
In Wyoming, the pilot has been developed by means of the
University's Wyoming Institute of Disabilities (WIND) contracting with
one of the Independent Living Centers (WILR central office in Casper).
Since there are no AAAs in Wyoming but a Single Unit on Aging (the
Aging Division of the Wyoming Department of Health), expansion of the
pilot will not create the same configuration that exists in other
States. States are using existing resources and strengths to build a
system that will work best within their unique environment. In our case
the frontier nature of the State that involves: expansive geography,
limited resources in terms of health professionals and programs, and a
personality of rugged independence, which creates both a unique
challenge and an opportunity for the delivery of services. We are
fortunate to have the State departments of health, family services and
the Medicaid office as active partners in the effort.
Question 4. If Monica and Ellington were to come into the ADRC in
Wyoming tomorrow seeking assistance what help could you provide?
Answer 4. Assistance from our ADRC would focus on Monica as the
caregiver, and Ellington who is eligible for various services through
the children's waiver. The ADRC counselors would inquire about how well
Ellington is being served by the systems available to school-aged
children, through the school district, associations for persons with
disabilities, governmental agencies and various targeted grant
programs. Ellington would likely be eligible for the myriad of services
allowed under the Medicaid Children's Home and Community Based DD
Waiver, and possibly the Special Family Hab Home Option, among others.
The counselor would also provide any appropriate information to
Monica regarding income (social security, energy assistance, food
stamps) housing, transportation, employment, access to medical care,
caregiver supports (including respite care and support groups),
education/training opportunities for parents of a child with
disabilities, and referral to any community or faith-based project that
could assist her in caring for Ellington and also for herself.
Question 5. Self-direction has proven to be a cost-effective and
efficient model for the delivery of services as the person is in charge
of selecting services, negotiating prices, etc. In your opinions, could
wages increase or decrease for direct care staff if self-direction,
allowing people to select their own staff, was used more broadly?
Answer 5. This is a difficult question for those of us in a State
with very limited experience with this model. It would serve us well to
look to Oregon, Washington and other States with years of experience in
this arena, and carefully evaluate the wage history, over time, and how
that may have impacted the long-term care industry as a whole.
In response to this very good employment question, it seems logical
to me that there would be a variety of factors relating to a particular
State (tax structure, worker's compensation rates, unemployment
insurance rates, affordability of health insurance, etc.). In theory,
overhead personnel costs (of insurance if that is even offered to
direct care staff, coverage for worker's comp, materials and supplies,
etc.) drive up the costs of long-term care because those expenses are
borne by the employer. Supervisors and other administrative staff must
be paid. Legal costs associated with employee actions against the
employer must be factored into the charges levied against the customer.
In order to ensure a profit, wages to direct care staff are kept low.
On the other hand, in self-directed care, if individual providers must
absorb those expenses, they will need to be paid at higher rates to
compensate for those expenses, make it worth the effort and to attract
quality workers. It would make sense that just the existence of
``choice'' will mean that mediocre or poor workers will be weeded out
of the employment pool, as people will select those who can provide
higher quality of care. The law of supply and demand will dictate
higher wages in that case. Conversely, if States are lax about
qualifications and training requirements, persons hired to provide
direct care may be hired at lower wage levels. In that case, States run
the risk of inadequate quality of care of the recipient (a ``get what
you pay for'' scenario.)
Eventhough the individual contracts for his/her own care, there
must be adequate levels of oversight to protect against abuse and
financial exploitation of consumers, at levels equivalent to oversight
found in agency-based care. Some costs of that oversight will be borne
by the State. Lack of adequate oversight could result in higher
expenses for prosecution and incarceration, in of course the worst case
scenario.
[Whereupon, at 11:29 a.m., the hearing was adjourned.]