REAL PEOPLE-REAL VOICES
>> Human rights violation and are happy to be
free. Here today to explain exactly why we're
>> The room here is packed in Nashville. We
have a good panel of people that people are
testifying for. Why we're in Tennessee? It
won't surprise people to hear that our national
policy that makes institutions and entitled and
home community an option has caused not only, a
disgrace around the country but every state in
In the state we're in, Tennessee, 99.4% of
all disabled go to nursing homes leaving 6.6%
going for all home community based services.
That's $106 for every $1 spent in the community.
That is a shame on Tennessee, but it's also a
shame on our national policy. That has really
changed very little since 1965.
ADAPT is sponsoring this testimony to
document to know and talk about really put down
on paper some of the really heroic stories of
people who spent a lot of years of their lives
locked away and fought their way out.
Unfortunately there's still literally
millions of people, children, adults. It
doesn't only affect those individual but
families and communities as well. It is a
In coming up here to Tennessee from Texas,
I saw something that says, I think describes
what ADAPT is about and other national
disability rights groups are fighting for is
passionately for fighting for what doesn't exist
yet and the key word in that statement is "yet".
We have a vision that all institutions are
closed and all people can live at home with
support both public and private with family and
support and really talk about family values that
If you don't have that vision, don't
really believe that every individual, no matter
how significant their disability, no matter what
their age can live in the community, then you're
part of the problem. We have to passionately
have that vision. Our public policy is not
seeing that. We are under the same basic
program since 1965. That's 41 years of the same
basic policy where we have to jiggle around a
waiver here and there.
We're here to document that hearing real
people, real stories. Not statistics, not
academic studies, not sitting in conferences,
but to hear real people's stories and for us
that's what this is all about. It's all each
individual. In ADAPT we call them liberations,
every one getting out. We hope that everyone
joining us around the country can take to heart
what it says and work to get other people out in
Because the best thing that can come out
here in Tennessee and in your local community is
to get one individual out. In all 200 people
listening gets one person out, you will make a
significant difference in the lives of those
people. That will make it worth what brought us
back together. I'm going to turn it back to
>> Thank you. We have Diane Coleman is going
to sing a song about freedom. What happens to
disabled people who are not free. Diane, then
we have some speakers who have to leave. We
might call some speakers if the panel is not
back. We have a panel of distinguished federal
agency and is disability right organizations.
>> Thank you. I'm going to sing a song that
was written by two Tennessee people, one Dwight
wild was a song writer years ago and since has
become a minister. He would have been here
today he's excited about this today, but he had
heart issues that come up this week and his
doctors said no.
The other co-author of this song, the one
who did the lyrics is Lynell. She died waiting
for Tennessee to give her the independence she
so long for. I want to dedicate that to Lynell.
I have to do this without any accompanist. I
would like for those who know it already to help
me out. It's okay to sing along. Its better
when more than one person sings it.
Something unforeseen is going on. We are
so cold, weak are getting strong. And crying
for what we know is right. Accuse because we
have the guts to fight. Through years of
neglect, in darkened rooms, our siblings of the
past were sealed away in tombs. Free our
brother, free our sisters to. From our people
now. It's all up to you. Free our parents.
Free our children too. Free Our People now,
it's what you have got to do. Prisoners of
profit and of greed, rationed out their basic
human needs. Overlooked because of fear and
shame tossed across from ignorance and blame.
The industry of care has emptied grace to
fill, how many the gifted people are caged
against their will. Free our brothers, free our
sisters too. Free Our People now. It's what
you have got to do. Free our parent, free our
children too. Free Our People now, it's up to
all of you.
What's a human life to you and me? Isn't
it a right that all be free? Not just those who
run the minute mile. And not just those who
wear a Colgate smile. Free our brothers, free
free our sisters too. Free Our People now, it's
what you got to do. Free our parent, free our
children too. Free Our People now, it's up to
all of you.
One more time on the chorus. Free our
brothers, free our sisters too. Free Our People
now, it's what you have got to do. Free our
parent, free our children too. Free Our People
now, it's up to all of you.
[ APPLAUSE ]
>> Before we introduce the panel [Inaudible]
but first we're going to have first testified
because voice from Tennessee. Can you come up
>> All right Johnny's going to perform for us
and Floyd Stewart is going to testify from
Tennessee before that happens because he's going
to have to leave shortly.
>> Thanks. First of all I would like to thank
everybody for this opportunity. What we're
doing here is so important. It means the last
of individuals with disabilities. Like I said,
my name is Floyd Stewart. My disabling
condition is a result of an automobile accident
that broke my neck between the fifth and sixth
cervical vertebrae, 1984. After my accident and
a year in rehab, enrolled in the Tennessee state
university as a freshman. Because there was no
attending care program, I could not keep up the
rigorous routine of student life or preserve my
I was forced -- I'm sorry, I was forceed
to attend school while living in a nursing home.
I left the nursing home each day and aattended
classs each day and returned to the nursing home
I tried to maintain my dignity while
there. That brought to mind something I read in
ADAPT publication. It is hard to have dignity
when you are continually bombarded with somebody
elses body waste. I graduated in 1989. I
returned to Nashville and spent two additional
years in a different nursing home. I joined a
program called VISTA -- volunteer service to
America. It was under the peace corp.
Advocacy organization dedicated to the
fight of people with mental retardation and
disabling conditions. I began working in 1992
at the center of Independent Living where I'm
still employed today.
I'm working my way out of an institution
-- out of institutional detention was the
hardest thing I ever had to do short of working
my way back from a spinal cord injury.
Unfortunately,s there were no alternatives to a
nursing home placement. Even though there are
cheaper solutions and numerous other
cost-effective alternatives. In my opinion,
every taxpayer in the America should question
this practice of data as shown that by age 65,
one in every 4 Americans will have some level of
Illness or injury can enter one's life and
affect our ability to live independently in our
own homes instantly. Anyone in the sound of my
voice can be sent to a nursing home within a few
hours of this event.
Today, I am a happy grandfather of three.
I own my own home and a lift equipped van. I
have a live in personal assistance. I am
employed part time. I use personal assistance.
I get help to maintain my needs. To maintain my
freedom I work two jobs. I have been worked to
work for the center of Independent Living of
Tennessee for the last 14 years.
We are dedicated to the vision of
independence and equality for every serviceman.
In 2003, I founded and am now functioning as the
executive director of a nonprofit organization
which builds affordable accessible houses for
individuals who are 80% of medium income and
below and individuals with disabilities.
I'm proud to say that I'm a working
taxpayer and a positive contributor to society
as well as an employer, as opposed to being
incarcerated for the (indiscernible)
Let me tell you about my first month in a
nursing home. Because of my condition I have a
catheter. Nurses and their personal care people
only spend about 40 minutes a day with each
patient. A nurse came into my room to replace
my catheter. She was in such a big hurry she
didn't insert the catheter all the way. When
she blew up the bladder and it cut off my
circulation. My blood pressure went up. I
started to have chills and pain.
I called another nurse in. She decided to
remove the catheter. When she did that I start
to lose blood at a phenomenal rate. They had to
rush me to the hospital. When I got there,
apply blood pressure had dropped to 50/0. I
almost died. That was just one of the many
problems I had.
When I moved from that nursing home to
another one to go to college, I had the same
thing happen. A nurse inserted a catheter in my
bladder. When I was time for the catheter to be
changed, she couldn't deflate the bulb.
She pulled it out and it broke the bulb
out in my bladder. Once again, I had to be
rushed to the hospital bleeding, almost dead.
So I moved out of the nursing home in 1992 when
I got my job. Prior to that, I was in the
hospital every three or four months for
When you live in a nursing home, each and
every time somebody comes in with a cold or the
sniffles or whatever, it goes through the whole
floor. Everybody in there catches it.
I stayed in and out of the hospital. When
I moved out of the nursing home, it was ten
years before I ever made another trip to the
hospital. It's been proven that the average
person that moves into a nursing home only lives
about two and a half years. It's a quality of
life issue also.
So I hope that all the people in the sound
of my voice is not just in this room, loom at
alternative programs because, like I said, it's
a taxpayer issue. When I lived in a nursing
home, it cost taxpayers 50 to $60,000 a year to
keep me there.
Now that I'm out, I get a $12,000 subsidy
from the state of Tennessee. That's the only
subsidy that I get. It's a taxpayer issue.
Let's go back -- let's leave this room and
go back to our senators, our congressmen, our
representatives, our governors and mayors and
impress upon them the importance of individuals
with disabilities having an American dream just
like everyone else. Thank you.
>> Thank you.
[ APPLAUSE ]
>> Thank you Floyd. I'm glad I know you. Good
luck and be careful. Johnny...
>> Some people might know this one. I hope you
like it if it's the first time you heard it.
All the people die in nursing homes.
People are going to die in a nursing home. Oh,
It's your life to choose how you live.
Oh, oh. It's for you to decide how to live.
Take down the walls, take down the walls to the
nursing home. Oh, oh.
Take off your white coat. Sit yourself
down. Can't you see the nurse coming down at
you now. Coming down your road, coming down
your street, coming for your kids. They're
going to get your kids if you don't act now.
This song is for your life to decide what
you're going to do next. Oh. Take down the
walls, take down the walls of the nursing home.
This song is for all the people who fought
and died against the beast. Oh, oh.
(Indiscernible) take down the wall, take down
the walls of the nursing home. Oh, oh.
Compromise, go back and look at what you each
and every done. Stop feeling guilty,
I just sleep at night. Take down the
walls. The cabinets...take down the walls.
Take down the walls. Who am I to decide what
goes on in our lives. Take down the walls, take
down the walls of the nursing home. Oh, oh. I
tell you...oh, oh. Oh, oh.
We are people. We are people. We're people.
We are people. We are people!
We are people!
We are people!
>> Okay. We have several distinguished
disability rights groups and federal agencies
here with us and we want them to let us know
what got them here and what their going to do
with the information of our lives. We're going
to start with John Lancaster from NICL.
>> Thanks. I'm John with the National Council
on Independent Living. We're here because we
totally support ADAPT and what you're about in
terms of freeing people and getting them out of
nursing homes and into the community and living
productively and on their own with their friends
So we're here to totally support this effort
and to learn as much as we can from all of you
to help us do our work back in Washington and
the various states as we try to get a better
policy in this country that will support people
getting out of nursing homes and state
institutions and being able to live productively
and independently in the community.
So it's a great honor to be here, to be
working with you folks in ADAPT today. I'm
proud to say that we're affiliated with you in
supporting this effort. I wanted to plug our
annual conference coming up May 22-25. We would
love to have you all attend. The focus is
ending the institutional bias. So people,
please come to Washington and make your voices
heard. Thank you.
>> I'm Andy and I'm the president of the people
with disabilities based in Washington with John
just a couple blocks. I'm here today just as a
person with a bipolar disorder. One of the
things we heard from a strong theme of the 23
witnesses we have heard from so far today is
there's a lot of forced medication going on in
nursing homes and other institutions.
I would say about 80% of the witnesses we
have heard talk about that. That's something we
need to see as liability attached to it. I
appreciate you saying that issue strongly and
clearly. My official role as a member of the
ticket to work and advisory panel which is a
bipartisan panel. Medicaid, medicare,
supplemental income and Social Security income.
We have created a beneficiary committee.
They need to elevate this beneficiary and to
fix the program. We wants to hear directly from
beneficiaries. It's helping me and this
transcript is going to be shared with all the
members of the staff. We also have a
transformation committee and the role of that
committee that I'm chairing is to come up with a
new way to provide support for people who do not
require them to be in institutions, that do not
require them to be outside the work force.
So we're looking forward with ADAPT to these
stories. The strong message that I have heard
today is far is there's an on going human rights
violation going on all over this country and a
lot of people say, what's wrong with nursing
homes? All we need is nursing home reform. To
me, that's not true. I would answer to the
folks that argue that is tell me who have had
third degree burns that all we need is nursing
Tell people that have been raped in
institutions is that all we need nursing home
reform. Tell the people who have been in prison
without commiting a crime, tell them all we need
is some reform. Thank you.
>> I'm the senior policy director at AAPD. I
was in independent living as a director of
Independent Living and then on the staff of NICL
at one point I was in Independent Living for
about 20 years.
I'm also serving right now on the Medicaid
commission which is looking at reform for
Medicaid. This directly does impact as probably
most of you know about 50% of the cost of
long-term care comes from Medicaid.
Independent Living tell you picking up on
something bob mentioned earlier, I know we get
discouraged and feel like we're up
insurmountable barriers sometimes, I got to
chart that the commission met just this week in
Atlanta and we're now focusing on long-term
care. How many community based services is 7%
in long-term care. In 2004 the last figures we
have, it was 36%. Now that's some progress,
folks. It's not as if we're not making any
progress in this area at all.
On the Medicaid commission, I try to
represent to the best of my ability, people with
disabilities. Even though my disabilities are
hidden, I fully understand. I had a very short
stay myself back in my 20s in an institution.
I know what it is. I know the feeling of
helplessness, hopelessness, loss of power over
your own life. So these stories hit me very
personally as well. I can tell you, Independent
Living do everything in my power on this
commission and in the work with AADP that we do
have choices that there are other things other
than institutions for folks like us. I
appreciate being here. ADAPT has been a real
leader in this. ADAPT is the only disability
organization to date that has turned in a
proposal to the Medicaid commission for an
alternative. I hope they lead the way for other
organizations to follow. Thank you.
>> We are people.
>> Good afternoon I'm Dr. Margaret. I'm a
physician director of the office of disabilities
for President Bush. This was created because of
the president's executive order, the New Freedom
Initiative, which I think many of you are
familiar with. It crosses many domains that
we're all interested in and that have to have
reform. Education, assistantive technology,
transportation, community integrated services
with the addition of health.
I think that one of the messages that I
would like to give to you is that we are
interested and we do want to make change in
health and human services and I think that some
of the things that you already heard are a
result that's happening at HHS. That commission
was created in health and human services.
We have an administrate who is
definitelyly supportive for all the needs for
people with disabilities. I think many of you
have probably been to see Mark along with Gwyn.
What I would like to say to you is there are a
lot of things going on and many things we have
initiated that have not broaden as far as we
want them to be, but at least they've been
initiated. Independence plus, assistant change
grant, the disabilities centers of aging, the
care for adults and children and many others
that I won't take the time to explain to you
I'm here to listen to all that you have to
say and what I'm impressed with, also with the
drug overload that Andy mentioned, but I'm
impressed with the abuse and brutality. I just
don't understand that. That's a human factor.
Whether you're disabled or nondisabled. Why is
this going on? I can tell you, that I won't
leave it there. I'm going to try to find out
why. Why is all this going on? And I will
carry your messages back to impact change. We
must remain persistant, I think together we can
overcome. Thank you.
>> Good afternoon, I'm Jim ward president for
disability rights. Thankful to have this right.
First as a person with a disability and to
represent my organization. What has been most
moving today for me, even though many stories I
have heard before, is the magnitude of the abuse
and also the clear connection. Who pay it is
bill and is how people are treated? Who does
the hiring, who does the firing?
We have the power to hire and fire our own
caretakers, we will not be abused, we will not
be mistreated. We will not stand for that.
It's really a simple explanation, where does the
money? Does it go to the nursing home or to the
huge lobbyist who can control Washington or does
it go to the people? It's A-as simple as that.
It was 40 years ago that Kennedy went to willow
brook and declared it was not fit for animals to
live in, it was 30 years ago where it was
televised of willow brook and that went to the
movement of advocacy laws.
It was 16 years ago when the ADA was passed
with a vision equality and justice for all. It
was 7 years ago and Olmstead and the mandate was
ruled by the court. This has been a long battle
and struggle and continues to be. For something
as basic and simple as where do we live? Where
do we call home? Is that home a safe haven free
from abuse and neglect?
Is it a place where we as individuals can
choose when we're going to eat, when we go out?
Basic fundamental freedoms in life. It is not
complicated. It's about where the money goes.
So we're happy as an organization to partner
with the deaf, who is part of our coalition, to
end the institutional bias in America, to end
the control of the money in America by the
nursing home industry, by the institutions and
give it back to the people and truly be an
America with freedom and justice for all. Thank
>> I'm Carol Novack. I'm here relating the
National Council on Disability. I also V-has a
son who is 36 next month, he's in a wheelchair.
That is the company passion of mine is to figure
out how to make affordable accessible housing
for people across the country.
The recent reports, I thought there still
a couple copies of the most recent report. We
have a -- to empowering people, enabling people
to have the support they need to live the life
they choose and our most recent report is called
long-term services and support.
It's not about care, it's about services
and support in combination because you have
personal assistance but not a place to live, you
don't have a place in the community. I think
that everybody is start together regulars this.
I have another report I consider to be the most
readable government report ever written. It's a
wonderful report that works at what communities
are doing around the country to provide the
support, to enable their citizens with
disabilities of any age to live in a community
and continue to participate to give, to share
and to relate to others and their families in
Another issue that I think we all need --
I've already talked to Mark Johnson about this
-- but not only do we need to make sure that the
money is not tied to this institutional bias
anymore, but we need to think about the direct
care work force.
My son has eligibility for 24 personal
assistance services in Florida. But try to
right people to fill this, has been a real
concern of mine. I think we need to work hard
at, not only removing institutional bias, but
creating the profession of personal care
assistance. Thank you.
>> Good evening. I'm here testifying today
because the shame of the institutional bias and
the shame of illegal activities in America,
certainly nursing homes, must be laid out to the
I was a minister and also a truck driver
who became disabled. I have a ministry to
nursing homes. I went to nursing homes and
preached. I thought I knew a little bit about
After becoming disabled a year later I
suffered a stroke, that's when I entered a
nursing home and found out how much I didn't
know about nursing homes.
The way that I entered the nursing home
was illegal in the first place. I suffered a
stroke, I was taken to one of the major
hospitals in Atlanta. I signed a power of
attorney for my sons to speak for me because at
the time I could not speak.
I was there for approximately a week and a
half. I was told my the social services
director that I was being sent to a rehab
center, Macon, Georgia which is an hour and a
half from Atlanta. I was sent to a nursing home
340 miles down the road.
Being a truck driver, I knew when I hit
I-16, I wasn't going anywhere near Macon. I
didn't sign to go into the nursing home. I
didn't give my permission. It was two and a
half weeks that my kids could find out where I
I couldn't call them because I had no
money, and I was not allowed to make long
distance calls on the nursing facility's phone.
I saw abuse, I saw patients neglected, I
saw residents treated with an undignified, and I
suffered the same thing.
It took three months for my children to
get me transferred back to a nursing home near
the Atlanta area. This nursing home was better
only because it was closer to home.
This nursing home was on the news three
times in 2003 for the deaths of three different
residents, which was under suspicion. There are
three suits that are still pending against that
Nursing homes -- it's so funny because I
remember crying and beating on the door of the
social services department in the nursing home
that I was in, so that I could get therapy.
Because routinely the way nursing homes
get out of giving you therapy because they have
to pay for it, is to talk to the therapist and
tell him we're not approving it and so the
therapist tells you, well you have gone as far
as you can go.
Of course, they told me I would never get
use of my left arm again. I can get it up that
high. I learned to walk just about on my own
simply grabbing my wheelchair and having two or
three nurse and is four or five CMAs going
behind me. You can't do that, you can't do
My answer to them was I can do it, I am
doing it and I'm going to continue to do it.
The atmosphere in nursing homes is that we now
own you. We own you and everything about you.
You become a nonperson. Your human right
and civil rights are routinely violated. There
was a practice to come into the room and go
through every drawer and every belonging you had
and everything you had in there that they
considered you shouldn't have, they took.
Dignity, there was no dignity. I can
remember sitting -- using the rest room and
having a CMA coming into the room and start
washing something out and I told her you can't
be in here. She said I'll only be here a
minute. I said, get out. I'm only going to be
here a minute. Get out!
I don't know anybody who wants prying
while they're sitting there in all their glory.
The food, oh God, we had two different pieces of
meat and they called it by different names. A
chicken patty and beef patty. Sounded good when
you looked at the menu until you got a look at
Nursing homes are degrading. They're
degrading to the residents. To put it the way
that the social worker put it to me when I was
fighting with her about my therapy and she was
telling me why I couldn't get therapy. She
said, Mr. Mitchell, I'm going to be franc with
you. This is a place where people come to die.
They just come here to wait and die.
I didn't come there to wait and die. And
that's the way they treat you. You are just
there waiting to die. So you don't get a lot of
consideration. They don't consider your civil
rights. They don't consider your human rights
simply because you're there waiting to die.
The day I got out of the nursing home and
it was really funny because I applied for a
waiver and the nursing home answered the medical
inquires from the waiver with not medically
qualified to be in a nursing home.
And I was wondering, what have I been
doing in here for two years? How did I get in
here if it wasn't medically qualified to be in
here and why have you been fighting me from
going anywhere from two years?
Of course, the waiver found out six months
after that because I moved out on my own anyway
that the nursing home had -- the way they put it
in the letter, we found we have received
erroneous information from the nursing home.
I'll name that nursing home sun bridge of
River dale. You can check the records. To put
people in nursing homes in the first place is
We take our most dangerous, horrific
criminals, we separate them from society, we
place them in isolation and we keep them there.
What crimes have the disabled committed that
they should be done the same way? That they
should receive this type of treatment? Because
they are separated, they are isolated.
When I was in sun bridge I made it my
business to get the state rules governoring
rules. I wanted to get the rights of residents
of nursing homes. After about a month I knew
more about it than they did.
So I became a routine thorn in their
flesh. Nursing homes are not fit. Maybe they
were meant to be and maybe the idea behind them
was meant to be something good, but what they
are is not what they were meant to be. And
until we can come up with something better,
people do not need to be exposed to that type to
If you ask any resident if a nursing home
and you each and every heard it said over ask
over again, I felt like a prisoner. Everybody
is not lying. A prisoner is exactly what you
are treated like.
The state gives you the right to affiliate
with whom you wish to inside or outside of the
facility. That's a right given you by the
state. But if someone calls to speak to you,
they are going to be given the third degree by
whoever answers the phone.
And you are going to be given the third
degree when you leave with that person just
going to get a hamburger. You are going to have
to tell them where you're going, the address of
place you're going, the phone number of the
place you're going, when you're going to get
back -- wait a minute.
The word is resident, not prisoner.
>> Yes! We are people!
>> It's time to Free Our People. I'm going to
leave it at that. It's time to Free Our People.
>> Thank you, Sam. You were really great.
>> Thank you.
>> Michelle, Shelly and then Rick and Lucy from
>> My name is Albert. I've been in a state
school. They were making me by forcing me to
eat and they didn't do what they said.
(Indiscernible) 1981 I left and went to a
nursing home. They didn't do what they told me.
You were tied in bed also. 1993, now I live in
my own duplex.
>> I have a terrible time with telling the
story. Before I got out of state school nobody
told my mom and dad or me about attendant care.
It was 1990 when me and my dad happened to
find out about attendant services. Now I live
on my own. All I have to say about that is Free
>> Michelle from Pennsylvania, Rick, Lucy and a
gentleman from people first from Tennessee will
come and tell stories after those guys go.
After he gets down.
>> Hello my name is Michelle. I was in a
nursing home in December 2004. I had to get
major surgery in my leg after a vehicle hit me
and dragged me about two blocks. They told me
this place was supposed to be a rehab or a step
down unit that receives rehab monies. But in my
eyes, it was a nursing home. It is a nursing
home that receives rehab money and what they're
telling people is it's a rehab.
It doesn't give rehab work, it gives the
same type of food, which I call dog food. It's
processed food that everybody gets. They pop it
in a microwave. It's not real food.
They usually got mad at me because I
figured out a way to get in my chair. Once I
got a chair and got down to the cafeteria, they
would get mad at me because I would sneak into
other people's rooms and tell them they have
In this particular place where I stayed,
they were very angry at me because I knew my
rights. I wouldn't sign any papers. I told
them that I had a right here, it's called civil
rights. Just like you're a person, I'm a person
If I sign any documents that limits my
rights. They got angry at me because I told
other people they had rights. They have a right
to turn down things.
They didn't like the fact that I started
telling people they had rights. They wanted me
to take pills, sign behavior papers and sign
other documents. Signing papers, we'll give you
help. I wouldn't sign papers. They said there
were meetings I didn't have to attend.
Everything would be okay. When I looked at
these documents, I found out that in these
documents I was behaving badly.
When my friend would leave, the nurses
would get back at me by giving me cold showers
and putting me to bed early. Once they put me
in bed, I'm stuck. I couldn't get around. That
was my punishment.
I wouldn't eat anything all day unless
they brought me something. I lost about 100
pounds. They washed my hair with this, do not
wet shampoo, which they put in my hair. I used
to have long blonde beautiful hair. Now you can
see it's pretty short.
It was real short at one time. Now it's
slowly growing back. It was ripped down. I
went back and forth to the hospitals. When I
got to the hospital, the nurse said she had to
cut it because it was sticking. They had washed
it but left the rubber bands in my hair, so they
had to cut it real short.
I was crying because I used to give other
people that didn't have hair, I used to cut my
hair down and give them some of my hair because
they weren't able to grow it at all.
I'm used to helping other people that this
time I needed help. It's hard for me to ask.
They told me that this is a good place.
They said she's only been there for two years.
They're not supposed to be death camps. When
you take them out of these beds, do not let more
people be in these death camps. They need to be
What they're calling rehab, rehab is too
much. They're using rehappen money to refill
these beds. Don't allow them to do it. If you
really want to read what I put down here and I'm
sorry with my disability I could not read this.
>> You were wonderful Michelle. We love you.
[ APPLAUSE ]
>> [Inaudible] I have been in the community for
12 years. Force my parents -- in an institution
at age 7 remained until age 13 (interpreter)
while in the institution many residents being
emotionally and physically abused. One inside
definite I personally suffered was a staff
member hit me in the head with new shoes that I
received from my mother. My shoes kept coming
off. The staff hit me on the head after they
picked up my shoes from the floor. My time
spent there was like being in jail. My only
parents had to call at an institution to get
permission to visit me. My mother became fed up
and would show up unexpectedly.
My mother would come up on weekdays and
found out I was not getting physical therapy
that I was supposed to receive. One time staff
put me in a wheelchair that didn't belong to me.
The chair was full of urine and got me all wet.
They have the nerve to accuse me of weting
myself when I got older, I was moved to another
ward and became very sick. They quarantineed me
in a single room and didn't notify my parents of
my illness. I thought my parents forgot about
me when they didn't come to see me during my
For a time I hated my mother because I
didn't understand that they were forced to put
me there. The state forced to put Shelly in
this institution. When I was 13, my mom and
sister had a meeting with institution
administrators and were able to volunteerly
remove from the from the institution after she
was given a hard time. My mother took me
against facility opposition.
I got all new clothes and was able to attend
public high school for the first time in my
life. While in public school I received As and
Bs and grew socially. It was great that I was
able to make friends and attend school parties.
I became involved in disability advocacy
in 1993 when I receive service coordination from
the center of disability rights. I learned how
to organize meetings and demonstrations for
disability equality causes. I'm especially
grateful to -- the director for changing my
life. And the director of advocacy for
realizing my disabilities for becoming a
disability advocate at a local and national
level. Free Our People.
>> Thank you Shelly.
>> Thank you.
[ APPLAUSE ]
>> My name a Rick I'm from Louisiana and we
know what happens to people in nursing homes in
Louisiana. They let the flood gatess open and
they're there. The minute the dam, the minute
the walls broke the nursing home personnel
people just left the people in their beds.
There are 3 or 400 of them that drowned. They
didn't have to, you know? While I was in the
nursing home in Louisiana I was active with
other older people. I was a young guy. I was
35 years old when I when to the nursing home.
The older people would be scream and holler and
they would put them in the bathroom and close
the bedroom door so no one could hear them. I
After they shut one nursing home down in
Louisiana, the next nursing home couldn't do
enough for me. They bring food to my home. I
had cable TV, they didn't want to get shut down.
But the thing is, the senator owned part of the
As I was going to physical therapy, I
didn't want to end up going back to the nursing
home so there was a lady in New Orleans that
told me about this home community based services
in Denver. That sounded pretty good. That's
how I ended up in Denver. I'm thankful for
ADAPT for giving me a political voice. It's not
as long winded as everyone else. I'm not a man
of many words.
>> Good job, Rick.
>> I'm Lucy I was in a training center and they
viewed themselves as a state hospital. They
stole our candy and med box out of the med room
and they abused the clients and throw down and
left the client in a bathtub for 30 minutes and
go down the hallway and take care of another
client. They come back and this other client
died in the bathtub.
Another one had sex with a client and a
staff go down the hallway and tape the client's
clothes and their radios and their stuff like
that and try to throw it in the trash and take
the client, drag them down the hallway and beat
the shit out of them -- excuse my language.
That's what they did to the clients.
They smack the clients around and stuff.
I lived out there in an institution. I've been
in an institution since I was 13. I've been
there in Norton and foster homes and other state
It's not right what they're doing in the
community. Now I'm living in a community in
person so I work at skills and I'm going on five
years December the 17th and been on guardian for
>> We are people. Thanks a lot.
>> I'm going to read a letter written by
self-advocate becoming empowered. He's a board
member. Hello my name is Ty and I'm from Ohio.
I'm a board member. I wish I could be there
today to deliver this talk to you in person.
To give you a brief history of myself. I
was in an institution for 11 years. It wasn't
pleasant. I had to wait to use the bathroom
because there wasn't enough staff to help you.
By the way, TY, he's the person in the
wheelchair. He's a quadrapilegic. There wasn't
enough staff to help you. Dinner time was the
worst time. You were herded like cattle and
waiting to be fed. If you need to be fed like
Then after you ate, you would still be
hungry because the staff didn't have to give you
more food because they had to get back to the
floor to help people who were in their rooms.
No one should have to live like this. It
should be their right to live in the community.
We need to give our brothers and sisters out of
those places and into the community.
These institutions are unacceptable for
people to live or better yet, make them leave
their nice home and make them in-- no. Make
them leave their nice homes and make them live a
couple days in a nursing home so they can see
how it is for themselves. I thank you. TY from
This is a little something I wrote. I
wrote this for MiCASSA. The Medicaid Community
Attendant Services and Support Act. I am
hopefully and you will look at this as
discrimination. Denial of these services.
This is a bipartisan act. Medicaid reform
to end the institutionalization based long-term
services and to give people of disabilities as
all Americans of real -- what did I say?
>> A real choice to live and receive services
and support in their community. You all can
find this at www.adapt.org/MiCASSA -- on may the
3rd of 2000 was a kick off date from a democrat
from Iowa and a senator, republican from
Pennsylvania. Free Our People. I would like to
further personalize this statement and give it a
little more meaning. Free my people. Give my
people. I don't want to be locked up somewhere
in this democratic nation that we call America.
Land of the free, home of the brave. Ideas
being taught in an institution that no resident
can care facility.
There was institutionalization of highly
functioning disabled and elderly people. But I
am free now. I'm free! . I left that place.
For a lot of Americans -- I'm having a hard time
A lot of Americans with disabilities the
previous statement land of the free, home of the
brave, is irrelevant. Why? I'll tell you why.
They're not free. They don't know what real
I'm sure they have fantasized about it and
had dreams about what it would be like and
positive they have seen working harder and
retiring to the humble abode. Or they may
listen to a song on the radio that speaks of the
ideas that they have of freedom.
For instance, Georgia on my mind. By the
great ray Charles. When he describes what he
loves about Georgia and the place that's dear to
his soul, he speaks about a sweet old song that
keeps Georgia on his mind.
They'll say to themselves that there isn't
a sweet song in the world about being locked up
in a god awful stinking nursing home!
Who is to live for the rest of their days,
not getting the care that they need or want. Is
it the families and friends who foresake them?
The very people who foresake them and persuade
them to turn over all their assets, virtually,
giving away their livelihood that they have
taken care of during their childhood.
They will put these people in a nursing
home that smells like urine and they hear people
all throughout night crying for freedom, crying
to get out, and other reasons they cannot even
comprehend. But not yet.
We're not there yet. This is a cry of
people in need. They are people of disability
who are disabled because they have survived the
wild's of this earth. They have paid their dues
and this is how we treat them. With no respect.
We institutionalize them.
Some of your may be knocking on the door
yourself. You maybe on the way to an
institution. But if it was up to me, all these
institutions will be closed and you won't have
to worry about that.
One thing I would like to say in closing
my prayer for the people of disabilities. It
was written by Kurt Franklin and goes something
like this: I'll pray for you, you pray for me.
I love you, I need you to survive.
I won't hurt you with words from my mouth,
I love you. I need you to survive. It is his
will that every need be supplied. You are
important to me. I need you to survive. You
are important to me. I need you to survive.
There's another one that goes like this.
Oh freedom, oh freedom, oh freedom over me and
before I be a slave, I be buried in my grave and
go home to my Lord and be free, free, free! We
>> Thank you. Kathy from Utah?
>> I don't want a lot of feedback in the mike
so if there is, tell me please. My name a
Kathy. I've lived in Salt Lake City for the
last ten years. It's very interesting that some
federal officials are on some committees
appointed. Today's testimony, real people, real
change and I hope that this is the next step to
not just really empty promises, but real action
for people the disabilities who have
successfully broken free of the
institutionalization that they've suffered from
many, many years.
I've been back there all morning listening
to horrific stories of individuals that have
been in the nursing home for years, and so I was
lucky in that I was only subjected to living in
an institution for a period of six weeks.
My primary diagnosis is cerebral palsy. I
had to understood go numerous surgeries to make
me quote, normal, whatever normal means. When I
was 21, I had to undergo a total hip replacement
and I wasn't well enough to go home to take care
of myself but too well to stay in the hospital.
So being 21 and naive, what I come to
realize now as dumb, I agreed to go into a
nursing home, a skilled nursing facility to
receive therapy in order to be able to regain my
independence, in order to continued my
education. At the time I was a junior in
college working on my first bachelor's degree in
rehabilitation services from a university in
The only way I'd still be in the nursing
home today, but the only way I was able to get
out was I was able to befriend a nurse that
worked the night shift and I was the youngest
person in the nursing home at that time.
And she agreed to quit her job and allowed
me to move into her house so I could continue my
rehabilitation and with her assistance, I was
able to become more independent. Within about a
month I didn't need 24-care any longer and I was
able to continue my education. From that point
on, I've been -- since leaving the nursing home
in 1997, I've been able to complete two
bachelor's degrees. No I'm not a gluten for
punishment. It just took me a while to figure
out what I wanted to do when I grew up.
I've just recently been accepted to
graduate school with above a 3.5 GPA.
[ APPLAUSE ]
For the individuals in the audience, please
don't throw stones, but we need social workers
that really get it and understand what it means
to be institutionalized and so I'm hoping to
complete my graduate degree and eventually
receive my MSW and work on public policy change
as it relates to people with disabilities.
[ APPLAUSE ]
I know time is getting short and many people
still need to testify, but I was really excited
to see that there are individuals from the
ticket to work program and I'm sorry I took
notes, but at this time I can't look down and
catch you by your first name, but this is all a
continuum because I have an education and the
drive to succeed, we have to have the services
in the community in order to do that.
I'm not able to go to work full-time and
maintain my independence and be able to be
employed and get the services I need because I'm
immediately knocked off Medicaid and I'm not
going into social work to make big bucks,
And another thought in closing as well, is
that I recently became engaged to be married.
But we're probably going to ends up having the
longest engagement in history and I think he's
absolutely insane, because the minute he marries
me, I lose all of my benefits and it becomes his
soul responsibility to meet my needs
financially, unless I become independently
wealthy and able to make a lot of money as a
social worker, so there needs to be vast changes
when it comes to human services for people with
I hope the panelists realize that they
have the privilege of spending the full day with
us listening to our stories. And you're
watching among heros in this room and thank you
so much for your willingness to come and listen
to us and I hope it's not falling on deaf ears.
I hope that by the time I'm 85 that the
next generation doesn't have to struggle with
the same things we've all struggled with with in
this room. Thank you very much for your time.
[ APPLAUSE ]
Hopefully I won't fall off the ramp now.
>> Good afternoon. My name is [Inaudible].
I'm from Philadelphia. I survived a nursing
home. That's how I got here by being a
survivor. I would like to say we as disabled
individuals need to try to come up with a
The vocabulary we use now is for
prisoners. I don't think we're prisoners. I
call nursing homes warehouses for people.
Nursing home to me is a place for spare parts
for the doctors needs for their studies of human
When I was in the nursing home, they used
to get me up. It was from 2:30 to about 5:00.
I asked them one day, why? They said, oh,
(indiscernible) I said okay. Put me on the
payroll because I didn't have no place to go.
Get up and get a bath and get out of the way.
I had a stroke and two aneurysms. When
the stroke and aneurysms happen to be
(indiscernible) I thank God that we got home
before I really never never late.
The nursing home people call an
institution. It's like a prison and people need
to get out of there. One speaker said, they
need to close down all of them. They claim
we're not normal. What the hell is normal?
I don't want to ever be normal. I want to
be me. They said, if it was a disability
everybody could be in the race. So I think
that's pretty all right for us. Everybody can
be in the race for disability. If they're
ignorant and the last thing I'm going to say is
Free Our People. They are normal. They are
people that have since turned against them. We
need to change. Instead of people in the
nursing home, give them choices. Tell them they
can stay home and get somebody to take care of
Nursing homes don't need our money. They
got more money than they know what to do with.
And the people that are putting people and
putting your loved ones. I mean, ones that you
have raised at this point and then they think
that they need a spare part. I don't think so.
All I can say is Free Our People from that
kind of abuse. That is abuse. The only thing
that put us there is some kind of catastrophic
injury. Immediately people think you're nuts.
You didn't need to be nuts.
I am a 60 year-old woman. I can tell you
about being nuts. I raised four children who
have since moved to the west coast. If I'm
nuts, then they nuts. That's four nuts coming
up. Get busy for them because I raised them.
They are people. That's all I got to say.
[ APPLAUSE ]
We are people.
>> Thank you. Angela Miller. (Calling order)
>> I'll try to help you.
>> You know you're not going to be nice like
some people? Right.
>> You hope -- you object to institutions?
>> He said we might be patient.
>> That made you very angry when somebody said
be patient. Don't you realize people are
>> It's my feeling that -- somebody high up is
taking a pay off? To keep the nursing home
going? You've been in three different nursing
homes. When he fell in love with a lady who was
in a home -- you have no idea what goes on and
how long we should put up with it. I am 76.
>> It's not time to be patient, but time to
fight with all our might. Thank you.
>> I don't know quite how to put this, I was
put in a nursing home ten years ago. My family
members put me there supposedly because once my
mom passed away until I was 6 weeks from
graduating high school, they told me, we're not
going to leave you there. We're not going to do
that. Six weeks ask that's all.
So reluctantly, leaving my sister who was
8 years old at the time, I left and I said, I'm
coming home in six weeks baby doll. I'm coming
home. She begged me not to go. I couldn't
stand the look on her face.
When I moved into shady acres which is the
nursing home I was in, at first everyone put on
this act. Like they knew when the people were
there to check them out. All of you know what
I'm talking about. All of you who have been
there no exactly what I'm talking about.
Because when they're here to check them
out, it's yes, ma'am, no ma'am. But watch them
leave and then their attitude is, what do you
want now? !
I spent the last ten years of my life. I
was in that place with my grandfather who
reluctantly I'm sad to say, died in a God
foresakeen nursing home. I couldn't stand to
see him go like that because he was too good of
a man and Christian.
By the time he was in that place, he
didn't remember me enough to call me his
granddaughter. But I tell you this, I know my
grandfather enough to know that he wouldn't have
put anybody who put him in there in that place
because I know my grandfather knew what that
place was like.
I tell you this much, they can close every
one of them down and start over again because
what they were meant to be is not what it is.
I can tell you this, if it wasn't for God
and the Christian people that worked with
disability connections and all these companies
that helped us out of here -- if you can forgive
my language because I'm a Christian myself, but
this is the only place I can say it, we would be
in hell all over again because we wouldn't be
heard at all. Thank God for the people who are
kind enough to find us places to live. To find
people to work with us and to find a way for us
to live and live a life.
If it wasn't for them, we would all
probably be dead.
>> Thank you. The distinguished panist had
asked time to respond to some of speeches. Some
will be here all day, some will leave shortly.
I want to give the panelist some time to make a
comment on things they have heard.
>> Thank you Casey. Again, I want to thank you
for the opportunity to listen to you all and
hear your stories to get a better sense of some
of the issues that we need to be presenting to
policy makers, not only in Washington, but in
states around the country.
I am struck about by some of the common
themes that I had heard about, but I guess I did
not realize how prevalent they were. Not the
least of which is abuse. I am just blown away
by the fact that virtually every speaker up
there talked about abuse in one form or another.
Whether it was involuntary drugs or sexual
abuse or violent or leaving someone in bed
without access to their wheelchair or toilet or
anything else. I find that remarkable and
probably the most compelling argument for why we
need to get people out of nursing homes and into
the community and into homes of their own.
The settings by their very nature do not
bring out the best in people. Whether they're
the people who are forced to live there or
whether they're the people providing the
That is simply not an environment to be
doing that sort of thing in. It's just a
tremendous argument for closing them down.
I would have liked to have heard from you
all and please keep this in mind when you're
talking to policy makers, but what it was that
helped get you out other than your own
self-determination, which I am clear was strong
in all cases that we heard today.
But what other things did you access? I
heard some people mention what is important to
me in my organization, assistant rooms for
Independent Living. Did somebody hear your
determination and hear what you talked about. I
heard some of you flat out bowled it.
But I would like to hear more about how
you made the transition? How you got out. We
need to document those stories as well. I would
like to hear more about what it is that had you
not even being asked in my cases, just put, in a
We think we know the answers, but is that
always the case? Was there something that could
have been done up front that wasn't being done
that was beyond some Medicaid regulation or
whatever that could have prevented folks from
ending up there in the first place?
So as you tell your stories and as you
tell them later on, please don't forget those
things. Those are important things because with
those models, people can start to structure laws
and other things that will help prevent
One thing came through loud and clear and
that was your ultimate choice, not to be there.
And thank you for that. I was struck by the
remarks of Kathy from Utah, but she said and I
am clear that that is true today that I am in
the presence and walk among heros.
Thank you for your contribution to
Independent Living. Thank you for what you're
doing and you have my commitment and the
commitment of the National Council on
Independent Living, NICL to continue to support
your efforts and to work as hard as we can to
put an end to the institutional bias in this
country. Thank you very much.
>> I'm Andy and will be here until the end of
the day. So I won't say too much. I want to
thank ADAPT for putting this on today. I want
to thank ADAPT and the people sharing their
often times painful stories. We're going to use
this to change policies so that this doesn't
>> I do appreciate the stories that we're
hearing today. It's important for us to take
back to groups, especially in the nation's
capital to be able to inform them about real
people, real lives.
However we have to say as a community, we
also have to be as knowledgable in the process
that takes place in our country. We talk about
nursing homes and the force that they play.
The truth of the matter is, one of the
strongest lobbying groups we come up against is
the nursing home lobbyists. You're not going to
get rid of them, but what you can do is not
elect people who listen to them. That's where
the difference is made.
I'm sorry. As long as there's nursing
homes, there's going to be home trying to make
the money and supporting it. The laws are made
by people we elect. If we can't get our stories
out every chance we get when people are running
for office, when consumers are available to go
and testify at some of the hearings they have or
whatever events they may be sponsoring, that's
when we can become part of the solution.
So please do and go and speak, not just
when we're all together, because it's a little
bit like singing to the choir, but go and speak
before your state legislature, before your
national ones. Take every advantage you can of
those opportunities, please.
>> I too, am very pleased to have been here
today and learned so much about what the horrors
have been and what many of you have lived
through. I think that you all know that all of
us here on the panel are here today because we
want to help and we want to try to make things
right so that you can live within your community
and be independent and have self-determination.
We have many roles to play, the various
members on this panel. We come from different
directions. I come from the federal government
which means I can impact, hopefully, the federal
legislation, the federal regulations, the way
people think, the way people make decisions and
raise their consciousness of what is really
going on and where the equities are not present.
So I'm delighted to have been here today.
I promise you Independent Living carry back all
these stories, Independent Living do my very
best to correct them and make things right. We
don't need just a band aid kind of things that
But we need statutory change. We need so
that it's the law that whatever you need is
statutory and no matter whatever chair in the
federal government, that won't change unless
it's another statutory law. But that takes a
long time. Thank you for your stories. I'm
happy to stay as long as I can. I will stay as
long as I can. Thank you.
>> I'm going to stick around to the end. So
I'll be brief. I want to echo some of the
comments about how the institution, be it a
nursing home, be it ICF, it leads to neglect and
dehumanization. It is by imprisoning both the
clients or whatever or patients, imprisoning us
people in these institutions paired with under
paid and over worked employees that bring out as
John said, the worst characteristics of human
This is this desensitization of where
money is going. At the power level in
Washington there's choices being made about
bringing money closer to the people, enabling
people or giving that money to the nursing home
or giving it to the institution.
The institutional bias that's empowered by
the nursing home lobby in HMO lobby combined
with the shameful budget cuts that are going on
in Washington to support tax cuts for the
wealthiest Americans is outrageous. For America
to stand up as an example to the rest of the
world, we need to continue to identify the
dehumanization, the abuse, the human rights
violations that are going on in our own
communities on a daily basis before we can
preach about how to run other countries and how
to be leaders around the world, we need to take
care of America here at home and take care of
So these stories that we're hearing today,
they're not new, but there's something about
spending the day and hearing the stories of our
brothers and sisters that call for nothing
different than any other American and that is a
desire to be near family and feel important and
power of the choices in our daily life.
I commit to using the resources of ADA
watch and the national coalition of disability
rights to advance the stories being told today
to advance getting rid of the institutional bias
in America and doing what we can to Free Our
People. Thank you.
>> Again, I'm carol, I'm here representing the
National Council on Disability. I'm also the
parents of a man who has cerebral palsy and just
moved to his own villa. So I'm a passionate
advocate for community based long-term services.
Long-term services include accessible affordable
housing, transportation, personal assistance.
Whatever people need to have a real life in the
Our most recent report from the National
Council on Disability deals with this new
concept, this revolutionary kept of long-term
services and support which empower and enable
people through accommodation and support to make
their life, meaningful, whole safe and
I have been extremely moved and impressed
by the talent, the courage, the wisdom I have
seen exhibited among the people who have
provided testimony today and it is my honor and
privilege to be here. Thank you for inviting
>> I have a few words I'll read it first then
I'll talk a little bit after wards. He was a
deaf organizer in Tennessee. My name an Angela
miller from Washington, DC and I wanted to thank
you for allowing me to speak to you. I am a
member of ADAPT and we continue fighting for
people with disabilities that should not be
Now days it seems that people who can't
get up in the morning does not need help getting
dressed or eating can leave and drive to work
with the wife, one and a half children and a dog
-- what a good picture that is --
We are here to testify that we are
disabled, but we are not dead yet. Everyone's
situation is very different. For about ten
years I have been fighting to never hear another
-- I'm sorry, of never hearing someone trying to
keep me or making me to say in a nursing home.
I got out into the community and I tried
to get back to work with the assistance after
ADAPT the capital ADAPT and university legal
services I had talked with them and they helped
me to go forward and talked with a lot of money
making people who I really need to be friends
with and to help me get out of a nursing home.
Basically, I did not need to be there
anymore anyway. It seems that a lot of the
nurses and the doctors that I saw while I was
there, basically, they told me I could never
walk again and I could never do anything for
Now at times I do have a walker, but I
basically, can't go a long distance without
falling. So basically, to keep from having to
have a nurse, basically 24/7, I very much try to
be so independent.
So for now the doctors have prescribed me
for a wheelchair, so I use that basically when I
go long distance. I found out about a for
example called ADAPT that really helps and
assists you when you really need and really want
and you already know that you do not need to be
in a nursing home.
I thought about mainly getting out to be
with my children. Now after I did get out, I
still have visitation with my children, but I
think about it. I can't get up and run anymore
like I used to, but at least I can sit and be
with them thanks to ADAPT.
Then I look back when I couldn't find an
apartment for myself. When I basically, tried
to leave the nursing home. As I mentioned with
the assistance of the ADAPT -- capital ADAPT, I
also looked into the Washington post trying to
find a nice apartment in Washington, DC that was
eligible for persons with disabilities.
So I did find one and I've been living
there for about three years now. Now I'm really
happy and appreciative that I did meet the
people to help me. And now it's time for me to
tell other people that they can get out of those
They can get their Independent Living that
they really, really want and really need. I
like to thank you for allowing me, again, to
speak and basically, the young lady that was up
here speaking, she said she was engaged to be
married saying mostly all of the ladies and
gentlemen here maybe they can find me a man,
>> (Calling out order)
>> Good evening ladies and gentlemen, my name a
Jimmy from New Mexico. I was really beaten on
March 12th of 2001. I lost my eyesight. I was
hospitalized for three years on and off. After
that I was released from the hospital. I had no
insurance and I when to the a nursing home for
20 months. I can relate what what everybody is
saying that these things do happen. I complain
a lot, but I know what everybody up here what
they're saying is true.
The misuse of the people, they ignore you
and take away your dignity. You basically have
no freedom whatsoever. You are just missing the
stripes across your clothes. You are in prison.
I would like the thank the center for
Independent Living to feed me. My family didn't
know how to get me help. I used to be able to
work. So I got that coming.
So now I get my own money, pay my own
rent, I take care of myself, which is cool.
Assistance does work. Just keep it up. I know
it works for a fact. I'm a three semester
college student now. I take care of myself and
spend money on my own. I'm not a burden on
either taxpayers or my family.
That's all I have to say, thank you.
[ APPLAUSE ]
Oh, yeah, I'm not a saint or anything like that.
I have to repeat something that my priest told
me. He told me Jimmy, these things are just
steppingstones to life in eternity. So all of
us here, we have it made in the end here. All
these struggles are for a reason, I guess.
>> Way to go. Thank you so much. Good job!
>> My name a Laurie. I'm 40 years old. I need
some help because my cerebral palsy. I was in a
state institution for six weeks. They tried to
put on bad food. I was not allowed to go on
without a nurse because of my speech problem.
Some people think I should be in group
home and my nursing aid and see it dropping
because I -- I told any caseworker, I will no go
to group home where I never see my friends. I'm
happy doing my volunteer work and being with my
I am one of the leaders. Thank you for
listening to me.
>> Thank you. I would like to call up Carol
from Texas and Carol Jones from Georgia.
>> Thank you so much. (Calling more of the
>> I'm Carol Jones from Georgia. I am a member
of Georgia ADAPT and people from Georgia. I
refer worked in nursing homes for over 35 years.
I don't want to go into the details or graphics
of what I have seen, but I can say, I still
remember what I've seen.
I started my career with training at bell
view in New York, so you can imagine the fun
that I experienced learning to be a caregiver.
I have worked in the community and I see
how better off my friends with disabilities are
in the community. I'm a taxpayer and I work
hard for every dime that I make. I don't want
my dollars spent on institution and is putting
people in nursing homes.
It's my money. It's disgusting. I've had
many people in the community thank me, say how
happy they are to be in the community. I have
never in 35 years had anyone say, gee, I wish I
was in an institution.
>> Thanks Carol.
>> Hi everyone. Thank you for the opportunity
to be here with you wonderful folks. I'm Eric
from Philadelphia the city of brotherly love.
In 1983, nobody understood my disability.
Why I don't know. But they didn't and I was
difficult because I have a big mouth and they
call me hard to manage.
So they said I was mental. Okay so I was
in a mental ward. Before my disability started
I was in training to be a physician. I was an
intern. I knew someone on the ward was having
medical problems because I was trained in
emergency room medicine and cardiology.
I was calling the staff and saying this
person is having a problem. He needs medical
attention right now. Because I was mental, they
wouldn't listen to me. I tried to crawl out of
the bed to go help the person. They put me in
The person died. And right now I forget
why, but he had a heart attack or something and
died. They thought because he was a mental
patient that he was just being mental.
In July 1st, 1980, I started my intership
in Cleveland, Ohio. I was going to emergency
room medicine and on to cardiology. April 28,
1981 after signing off rounds we were in the
little conference room.
The staff later after I was resuscitateed,
said they are supposed to help the patients, not
ourselves. At the time they didn't understand
my condition. The other doctors and staff were
It hurt. When I was in school, there was
a comradery. They were saying you're mental,
your going to long-term incarceration in a
mental institute, I had three choices, picked
I don't know why. I forget why. I chose
it and came to Philadelphia and I was scared to
death but in the long run, it became the best
thing I ever did in my life because I've learned
so much in Philadelphia.
I was incarcerated in a mental institution
for four years. After I got out I met my lover,
Jimmy. I met Casey who should be a saint and a
lot of other people in this room. They are
wonderful, wonderful people.
Through them I learned if I can't practice
medicine in house, I will practice it on the
street. By closing down nursing homes. Nobody
should be incarcerated and nobody should hurt.
That's a people thing.
No matter what we're called whether we
have a mental disability or physical disability,
there's not an above or below. We need all the
differences because if we were all the same, we
would die out.
I can't remember, but there was somebody
that said, we need differences otherwise -- it
was in genetics, I think. In 2003 I had a
stroke and it took away my knowledge.
I know what I want to say and a can't get
it come out. You are seeing an example of that
now. But that's okay too. I learned in ADAPT
that there's a place for all of us. Before 2003
I I was a leader in ADAPT, now I'm not, but I'm
Thank you for everyone for being here, too
and learning from all of us.
>> I'm mike from Colorado. Before I was in a
nursing home I was a truck driver, 48 states
making about $45 to $50,000 a year. Next day,
I'm disabled. I ended up in a hospital. Spent
four weeks in a hospital.
Went to one nursing home called the O'Hare
rehab in Denver which is now a delivery house
which Atlantis has an apartment building.
I was there for 7 years. I did a whole
bunch of things there. I was very active, but
there was those invisible bars at the door.
Just like you can only go so far until someone
sees you leaving and so they come out and tell
you to come back.
Some places in there they had things
around your ankles, the alarm would go off when
you opened the door. But I got out. I started
March of 2002 and I called the center for
disabilities. I called in the middle of April
and May and then June I find finally got out.
Now I'm almost four years out of there and
I'm a volunteer lobbyist down at the capital.
I'm on the board of a Colorado Disability
Coalition. I'm on the board of Adult Care
I was asked to put in an application for
the DD council and the state independent
council. So we have to wait to see what the
governor says. Free Our People! Let's hear it!
Free Our People! Thank you.
>> I would like to start out by thanking y'all
for giving me an opportunity to share some of my
experiences and discuss with the hopes that the
things that I'm saying that these things are
true and that maybe in some way we can make a
positive change with the current system we have
for people in the future.
On January 30 of 1994 after I got shot in
the side of my head and as a result I'm a
complete quadrapilegic. When I woke up the next
morning from my comma, I was told I would never
Before that they told my family that I
might be a vegetable. They wanted to turn off
the life support. My family refused to let that
I experienced abuse, neglect and just poor
treatment in just about every facility I've been
in. During my lack of having health coverage,
insurance from January 30th to the middle of
that April because there wasn't a rehab facility
in the country that would take me because I
didn't have money.
So around middle April, I was forced to go
into an NHC of Columbia, Tennessee nursing home.
I stayed there for our our five months.
While I was there, there were more times
than I can count that even after notifying the
staff that I urinated on myself I was left to
sit in my wheelchair sometimes four to six hours
and I assure you if you have not experienced
that personally, you cannot possibly imagine the
humiliation, the lack of dignity you feel you
have, just the despair, the hopelessness, you
You tell the charge nurse, other people in
authority there what's going on and nothing
changes. You don't know what to do. You are
over a two hour drive away from your friends or
It's literally hell on earth. I remember
very clearly to this day one morning my physical
therapist came in with her assistant. When they
walked into my room the physical therapist said
very loudly, just look at him laying over there
in his bed.
My body was contorted. I had no control
over that. I just can't explain what that type
of environment does to your soul. You don't
know if you want to kill somebody or if you just
wish you were dead, or in some days, it makes
you that much madder so you try to live another
day so hopefully you can do some form of
retribution to the people. After I left to that
facility I was sent to another facility, the one
that burnt. It burnt and a quite a few people
died because they didn't have a fire system
installed in the building.
All on the third floor of that facility --
it was during the ice storm we had that winter.
I lost so much weight in that facility during
that period of time.
My right lung collapsed tries. I had
pneumonia. I had to be rushed to Baptist
hospital. After my second trip to Baptist
hospital, I pleaded with my pulmunologist to
help me because I didn't know what to do to try
to change the way things were going with the way
I was being treated in that facility.
I was having an extremely hard time
eating. I think mainly probably because of my
severe depression. Anyway after Dr. Bollman got
with the administrator of that facility, my
situation at that facility did turn around 180
It was almost sickening after that of how
to staff could not do enough for me and I found
that disgusting. All I wanted was to be treated
fairly. That's all I've ever asked from anyone.
I've always tried to treat others that
way. Anyway, at some point after that I went to
the national memorial hospital, I think it was.
I didn't have a very good time over there
either, but shortly thereafter I went to another
place. That place was a real winner too.
I stayed for the next three years. There
were many times that after I had started having
respiratory difficulties when I'm laying in the
bed. When I'm sitting in my chair I do pretty
good for about the whole day. But when I'm
laying down is when I have the majority of my
respiratory trouble. When I'm in a bed I'm
totally dependent on someone to come help me.
I can't get back up to seek help. I don't
have enough use of either of my arms to help
myself. But there were too many times to count
that my nurses would come in and answer my call
light, any CMA had been in my room four times on
countless occasions and realized I was in
respiratory distress and go back in and tell the
A lot of the CMA's I had, I had good
relationships with them. I know that these
people went back and told the nurse. Told the
nurses I needed help. Yet the nurse would not
come and sometimes -- usually it was at night
when I was in bed.
But I could here the med cart usually
right down the hall from my door and half the
time it was simply a matter of the nurse's doing
your med pass and she was not going to come to
She made it up to my room passing her
meds. I was almost flat on my back gasping for
air, scared to death not knowing if I'm going to
have a stroke, die or if I did wake up back am I
going to be a vegetable.
My life was filled with constant fear. It
got to the point where I was scared to death to
get out of this wheelchair and lay down in a
bed. That's no life good for anyone.
That's the main thing that happened.
That's the thing that upsets me worse than
anything. When I would go out in the halls --
I was in the hall one day a guy asking for
a drink of water and I have only limited use of
my left-hand. He wanted a drink of water, but I
wasn't capable of helping this person. We were
beside the nurses area.
I was by the intersection area by the
hallways and I saw that fellow ask nurse after
nurse and they kept telling him, wait a minute
honey. I'll get you a drink in a minute. No
one ever got him a drink. I got so angry after
watching this for about 15 minutes, I went over
to the nurse's desk and I asked -- there were
three nurses sitting there ask I asked them if
one would get off your ass and get this man a
drink offer water.
He's been asking for water ever since I've
been here. Whenever I did see things like that,
I would try to advocate for my fellow patients.
Because it's not right. It's inhuman not to get
a man a drink of water if he's thirsty.
Another thing I found and this one needs
to be on the record folks. Whenever there's a
state inspection at the nursing homes, the
director of the place already knows about it and
the people are running around like the damn
building is on fire and man, I'm telling you
what, they want to make sure everything is in
their proper place.
If there's going to be a state inspection
folks, no one at that facility should know that
there was chaos time after time. It was a
complete joke if you are going to have an
inspection of the people running the place to
know the inspections are coming.
If things are the way they should be,
there should be no reason for people to be
storing around trying to get ready for an
inspection because things should be right to
I would like to tell about how I got out
of the nursing home. At some point, I believe
it was at the end of '98 or the beginning of
'99, I got pneumonia.
I happened to be sitting in my wheelchair
that day. I had been getting antibiotics for at
least two or three days for it. The staff knew
I was sick.
I had pushed by call light, I was having
respiratory problems. No one would come so I
called my dad's house. I knew he was in the
home, but I left a message on his answering
machine. I let him know that I had pneumonia
and that the staff knew about it and that if
anything happened to me -- in other words, for
him to take the tape out of the recorder when he
got through listening to the message, keep the
tape because if anything happened to me, he
would have proof that they had not come to help
My dad called the facility when he got
home that evening. After that I was sent to
Baptist hospital. After I was there for three
days, I realized I could not go back. Would not
go back to a nursing home.
I didn't know what I was going to do. But
I didn't care if I went out on the street and
lived half a day and dropped dead, I didn't want
to go back to one of those places.
I called my brother who lived in Florida
at that time and told him how things were really
going. I kept a lot of this information from my
family because I didn't want to worry them and
have them more concerned about me than they
My brother said held like to move up here
and take care of me. He did move and so for the
next four years my brother cared for me. The
sad thing is the only help we got for the first
three years, primarily, was nurses aid coming
out once a day to give me a pad.
I think it's ridiculous that my brother
couldn't receive more help over the three-year
period of time of a person in my condition in
the wheelchair 24/7. What had happened to the
money that had been paid to the nursing homes?
How come some of that money couldn't help us.
Anyway, my brother met a woman and about
the last year he cared for me, she lived with
us. But since then, I got private duty nursing,
I have my own apartment, and my nurses care for
I'm extremely grateful for that. When I
do have problems with my nurses now, I can
usually get them resolved in a reasonable amount
of time and finally able to live with a
reasonable amount of dignity.
I can go see a movie now if I want to. Go
out to a restaurant. Can protest off and on. I
really enjoyed that.
>> We are people.
>> I deeply feel that this system is broken.
We need to just dismantle and rebuild it from
the ground up and thank you very much.
>> Thank you so much.
[ APPLAUSE ]
>> Anybody who hasn't spoken, we're trying to
end this hopefully maybe by 5. I know that
people from New Jersey, people from Georgia and
Texas, Colorado, Philadelphia, Pennsylvania and
if you are in this room, please get in this
corner. We're going to just start off with
people coming up.
>> I was put in a nursing home after I suffered
a stroke at the age of 45 because my family
didn't know I could stay at home and get the
same help I was getting at the nursing home.
It would take my nurse a couple hours to
come and answer the bell. I would be like God
forbid I was having a heart attack, I probably
would have died.
The nursing home food was awful. It
tasted terrible. There were nights when guess
what you were having for dinner because you
couldn't tell what it was.
The one therapist that I had she was a
delightful person, but the rest of them were
only there for the money. They don't have time
to talk with you. Just do what I tell you and
Now that I'm out, I finally -- I moved out
in 2003. I've been out four years now and I
love being out. I have my own apartment and I
come and go as I please.
ADAPT has taught me so much. I know
realize what it is to be disabled and how it
feels when people would stare at me -- when
people were disabled and they were younger and I
stared at them and I thought they were weird
people. Now I know how it feels and it hurts to
have people staring at me because I'm disabled.
I'm not dead, I'm still human. I can
still eat and feed myself. I put my pants on
the same way as everyone else. One foot at that
time. My caregiver that I have now is dynamite
since I got out.
I have an aid that comes in and takes care
of me 8 hours a day 7 days a week. I love her
to death. She's more like my sister than a
I think it's time that we need to make it
better for the kids. They need to feel like
they're accomplishing something to. They need
to be given more money too because they work
hard. They're our backbone as far as I'm
She fixes my food for me but I tell her
how to cook it and she helps me do my laundry
and go to the grocery store and helps me take a
shower and helps me get dressed and all that
other stuff. She works hard.
>> Thanks Linda. I want to get everybody to
tell their story.
>> I live in Salt Lake City, Utah. One man was
wondering how people get into the nursing homes
in the first place. I can tell you that for me
it took trust and a doctor's signing.
First of all I couldn't take a shower or
anything like I could at home. On Friday I
asked when do I get my shower and she said you
have to wait until Monday.
By this time I had some heavy antibiotic
and other medication that gave me diary ya and I
was uncomfortable and I had to wait for five
days or six days to get another shower.
Then my doctors prescribe medication -- he
let them know that she had to check my room
everyday. There was one nurse who did it.
The food, we were talking before, one
woman had much like a stew, but I could not
identify one piece if it was a potato or meat.
I couldn't eat it.
I lost 30 pounds. That's a good thing.
But I got so sick. I had to be in the bed and
they didn't give me the antibiotic the doctor
prescribed. Not all the time. One day it was
so bad I was sick in the morning. They gave me
the medication on my empty stomach.
I left at 12. After I took the
medication, I threw up and I came back at 12 and
(indiscernible) several days I couldn't go back
to my bed after I was in the bathroom because
they didn't have enough linen to change my bed.
I was sitting in the chair for five hours.
I could not get back into the bed. The worst
thing I experienced, one night I woke up an
attendant had his hand under my covers. I woke
up and said what are you doing?
I check to see if you need to change in
the diaper. I said, I don't have a diaper, I
have a catheter. I send him out. What did his
hand doing under any cover?
Then I felt so sorry after this
experience, I felt so sorry for people who have
to be there for years and years. I tell you
those weeks were stolen from my life and I feel
sorry, again. I met ADAPT and now I fight for
these people and I never go to rehab in the
nursing home again. Thank you.
>> My name is Ken and I'm from New Jersey.
>> Thank you.
>> Hi, I'm here to tell you a small story.
December of 2001 and April of 2002 I put in a
nursing home. I went through the same thing,
the food and horrible conditions, I laid in my
human waste for hours and hours.
The thing for me was to watch for people
without the voice. The people that couldn't
speak for themselves. The ones that couldn't
communicate. They couldn't tell them they were
wet or thirsty.
To make a long story short I got mad and
under our yellow pages we have the government
pages. I contacted Gail and she took a deep
breath and said this is what you need to do. I
couldn't write fast enough. She was so full of
ideas. I had to keep calling her and calling
To make a long story short, I'm very
lucky, I'm out of that nursing home. Doesn't
look like I'm going back. I will never go back
regardless. When I first got there they thought
Here I am and thanks to all of y'all, I
can tell you one thing, the therapy in the
nursing home is not the same as therapy in your
own home. It's about these people. You are my
best therapy and thank you very much.
>> My name a Robert. I am a man with cerebral
palsy. I wanted to move on myself. My father
asked for help. They didn't help me. My father
called DDD. Now in my life I had lived in a
boarding home and three group homes.
I was burned with cigarette. One of my
fingers is dead because my wheelchair was
wheeled over it over and over. My nerves are
damaged on my body. My sister didn't call to
check on me, I will be dead today. I use the
power chair and I communicate on electronic
language path finder. Technology has opened my
life. I now live in a condominium by myself
with my dog.
I'm working as a volunteer to help other
people move out of those mental centers and I
have any freedom. Thank God. If you had a
child with a disability, would you put her in a
hell place. Bush, please help us get people out
of this institution and get institution out.
Robert from New Jersey.
>> Thank you so much. Give him a hand down.