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(This text is was originally provided in a rough draft format from the Frazier Reporting Communication Access Realtime Translation, CART, transcript. CART is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. Therefore, the transcript was then corrected using video and audio tapes of the proceedings.)
Cassie James Holdsworth, Moderator Introduction
to Part II.
6 Panelists
Panelist - John Lancaster, National Council On
Independent Living- NCIL. 2
| 3
|
Panelist - Andy Imparato, American Assoc. Of People With
Disabilities- AAPD & Ticket To Work And Incentives Advisory Panel – Social
Security. 2
| 3
|
Panelist - Gwen Gillenwater, AAPD & Medicaid
Commission. 2
| 3
|
Panelist - Dr. Margaret Giannini, Us Dept Of Health
And Human Services. 2
| 3
|
Panelist - Jim Ward, Ada Watch & National Coalition For
Disability Rights- NCDR. 2
| 3
|
Panelist - Carol Novak, National Council On Disability- NCD.
2
| 3
| 4
|
Johnny Crescendo - Josie
LaTonya Reeves, CO
Randy Alexander, TN
Michael Taylor, TN (Renee Ford Reads)
Ed Hahn, PA
John Gladstone, PA
Barbara Heinz, TX
Daine Scotin, GA
Greg Sutton, GA
Dawn Green, WI
Kurt Breslaw, CO
James "JT" Templeton, TX
Mike Clark, KS
Daniel Remick, WI
Johnny Crescendo - Inglis House
Teresa Grove, IL
Larry Ruiz, CO
Steve Schaefer, IL
Jamie Ziegler, IL
Jean Searle, PA
Norman Bathea, IL
Spitfire, PA
Frank McColm, CO Video
Break, Part II
Diane Coleman – Free Our People
Floyd Stewart Jr, TN
Johnny Crescendo - Tear Down The Walls
Samuel Mitchell, GA
Shelly Perrin, NY
Rick Viatar, CO
Lucy Crouch, KS
Gatha Logan, TN- Also Read For Todd Gatewood Oh
Cathy Garber, UT
Dorothy Ruffin, PA
Carrie Fowler, GA
Angela Miller, DC
Jimmy Griego, NM
Gwendolyn Evans, GA
Lorri Maubry, TN
Carol Jones, GA
Mike McCarty, CO
Glen Barnhill, TN
Linda Merkle, MD
Kenny Hauser, NJ
Robert Besill, NJ
Karen Burrison, PA
Danny Saenz, TX
Sarah Wyndell, VT
Anita Boyce, GA
Maria Vasquez, TX
Steve Clark, PA
Laura Borst, TX
Sylvia Matthews, MD
Gene Spinning, NY
Dan Smith, UT
Peggy Doughtery, PA
At the end of this transcript is a list of acronyms used in this testimony.
- Return to the Index of Speakers.
MARCH 19, 2005
NASHVILLE, TENNESSEE
CASSIE JAMES HOLDSWORTH >>
We're going to get started, so you can cut the music off. That will be great.
We're here today to hear about the real lives of the real people that have lived in institutions, and we have very distinguished guests from disability rights organization and federal agencies.
People are going to tell you who they are and what they're going to do. We'll hear real stories about living in institutions. You are the survivors. You are the people that drive the work they do and today is about hearing from you, what it was like to live in an institution, what it was like to get out of the institution and what it's like today to be free.
And I would like to start the day with our distinguished panel. We can start with John Lancaster. If you could introduce yourselves.
-Return to the Index of Speakers.
JOHN LANCASTER, NCIL >>
Thank you, Cassie. Oh, great! I don't want to sit here and talk to you, but – with my back to you, so if you don't mind I'll turn around here.
Thank you, Cassie. My name is John Lancaster, and I'm the Executive Director of the National Council on Independent Living [NCIL] and it's an honor and pleasure for me to be here with you today, to be part of this panel and to hear the stories about folks who have been able to overcome some adverse situations and get themselves out of nursing homes and into the out of state institutions and into the community.
I just want to quickly let you know that NCIL – I know some of you are members. We wish the rest of you to join, too. NCIL is lockstep with ADAPT on these issues. We are there to work with you on them. We're going to take these stories. We're going to use them in Washington. We're going to keep doing what we need to do there to try and effectuate the changes we know we all need. And we're also going to start trying to do that state by state.
So I'm excited about being here today to hear your stories. I want to let you-all know that our annual conference is coming up in Washington, D.C. and as you know, with it we have a big March and rally up to capitol hill and we descend on our representatives and senators during the course of that conference and we hope you all attend. This year the annual conference is May 22nd through the 25th, and the theme is ending the institutional bias.
So I'm thrilled to be here and thank you very much for having me, and I look forward to an exciting day. Thank you.
[Applause]
-Return to the Index of Speakers.
ANDY IMPARATO, AAPD & TICKET TO WORK AND WORK INCENTIVES ADVISORY PANEL - SOCIAL SECURITY >>
Good morning everybody. I'm Andy Imparato. I'm the President of the American Association of People with Disabilities [AAPD] and I'm here representing the Ticket to Work and Work Incentives Advisory Panel for the Social Security Administration. We've created a committee that's looking for Supplemental Security Income and Social Security Disability Insurance and looking at how we can transform all four of those programs so that they invest in people, they support people and take control of their own lives. So they don't force people into institutions, they don't force people to stay in poverty and stay out of the workforce.
So I look forward to hearing from the folks that have personal experience in institutions and we're looking for good ideas from ADAPT. I know ending the institutional bias in the Medicaid program is a key starting point, but there's other things that need to change for us to invest in people and support them in owning their own homes, in working and acquiring assets. There's a lot of problems with federal policy beyond Medicaid and that's what we're working on on the panel.
I'm looking forward to today. And like John I want to say that we work very closely with NCIL and ADAPT and we see ADAPT as a core partner with political empowerment for all people with disabilities. Thanks a lot for having me.
[Applause]
- Return to the Index of Speakers.
GWEN GILLENWATER, AAPD & MEDICAID COMMISSION >>
I'm going to stand up because I'm short. I'm Gwen Gillenwater. I'm the Senior Director for the American Association for People with Disabilities and even though Andy is my boss, I'm here representing AAPD today. I've got about 20 years of experience in independent living before joining AAPD, so I think I see this from several different sides.
As you know, AAPD is a membership organization. To use John's example, we hope all of you will join if you're not a member of AAPD.
I am particularly interested in health care and Medicaid. I am now serving as a voting member of the Medicaid Commission, having being appointed. We are looking at long-term care. I just finished a meeting in Atlanta, Mark Johnson and a few folks were there, looking specifically at long-term care. And we're going to do the same again in Dallas in May, although it was by hook or crook, I was able to get MiCASSA on the agenda and Bob Kafka will present at the next meeting.
I will say that I got a listing in my hand of all the organizations and groups who have made recommendations to the Medicaid commission on long-term care. They include things like Heritage Foundation and the CATO Institute, George Washington University, a number of academics, the National Governor's Association, a number of organizations, like the National Conference of State Legislatures.
The only disability group in this list right now who submitted recommendations is ADAPT. And I applaud you all for that. Others of us will be doing it, but you have set the standard. You're doing great work. We encourage you to continue that, and the stories I'll listened to today are stories I will take with me in my future dealings with Medicaid Commission and share that with them.
The other thing I want to point out to you, one of the programs, commitments that we at AAPD has concerns voting. And I want to encourage all of you-all, Tennessee is a part of one of the state projects we're working with at AAPD. Carol Westlake and others here in Tennessee are very active in that. I want to encourage you in your own states to be begin to look at that very seriously. It's imperative that we vote and even more important that we participate fully as coworkers, as candidates.
I think we should nominate Stephanie for the Congress.
[Applause]
- Return to the Index of Speakers.
I'm afraid Bob is too radical, but I'll work with Stephanie, okay? (jokingly).
So I look forward to today -- but I look forward to what we hear today and look forward to participating with you-all as we go forward. Thanks.
[Applause]
DR. MARGARET GIANNINI, US DEPT OF HEALTH AND HUMAN SERVICES>>
Good morning. I'm coming to you from a different perspective. I'm Dr. Margaret Giannini. I'm a physician. I'm -- I hate to admit it, but I've devoted 58 years of my life to disabilities and I serve as the director of the office on disabilities for President Bush and Secretary Leavitt, having being in this office. Which I think is a tremendous drive for all of us concerned with disabilities because it's the first office of its kind that comes from that kind of authority.
I’m happy to be here and anxious to hear all your testimonies and I just want to say a few things from our perspective that maybe you're not aware of, of what we're trying to do, what we know, what we feel, what we want you to do for persons with disabilities.
I want you to know that we are supportive of the inclusive community based services and that Medicaid funds need to be available for persons with disabilities to support them in the most appropriate and preferred setting. To further support that concept, you are all well aware that the President -- and the President's budget there's $1.75 billion for Money Follow the Person
-- [Applause]
- Return to the Index of Speakers.
January 1st, 2007 and will continue through 2011. The key to that that we must be responsive to on the federal level side is that at the stroke of 12:01 of January 1st, 2007, that the money will actually flow at that time to the persons with disabilities it should be for the rest of your life!
In addition to that, I think many of you are aware of the President's Executive Order of the New Freedom Initiative that was built on the Americans with Disabilities Act. So basically that definition of the New Freedom Initiative is very simple. Tear down all barriers for persons with disabilities. And what does that mean? That means to tear down barriers in the domains of employment, housing, transportation, assistive technology, integrated community services, homeownership, and I took the audacity, to trump the President and I added health. Without health I don't think any of those domains mean anything. Shortly after that I think we all know that he executed the executive order that we must be responsive to the Olmstead decision.
Now, in the Freedom Initiative, there’s a mandate which I would like you to know, that mandates that all federal departments must be -- not a choice – they must be responsive to freedom initiative in terms of how they spend their money. And that's my job, because I'm in charge of the Freedom Initiative, is to make sure those federal partners do that and I want you to know that really is quite successful, that for the first time federal departments have broken down and they're talking and planning with each other. It's not going to be a miracle overnight, but it's working. And all this week we want self-determination and independence and to have long-term community based services.
I know that there are issues about home community based services with waiting lists and we're sensitive to that and we're going to try to quickly resolve that with the states.
As you know that's really a states responsibility. I know that some of you are concerned about the performance of asset transfer funds, which we are also sensitive to and reforms of case management and targeted care management services. But let me tell you what we've tried to do, just to remind you that we're not sitting idle. We've done some things with the council.
We've done things with Independence Plus. We've done things with Real Choices. We've done some things with Money Follow the Person. We've done feasibility studies for respite care for adults and children. We've done alternatives for children and we've done rebound and disability resource. So those are some of the things that are going on and trying to enhance.
Is it enough? No, it's not enough. But I want you to know, to look forward to the fact that even though it seems like we're taking baby steps, we are really getting better by the mere fact that Gwen is on the Medicaid Commission. That means something. You have a voice there. And there are many others that have voices there for you. So that's a step forward. I'm here today and I promise you I will take back to Washington -- I will take it to the top policy decision makers and I will try to see whether we can make change and make a difference.
As you know, in Washington, it doesn't happen overnight. So I beg you to be patient, to be persistent, and to be vigilant. So thank you for inviting me.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Before you go, I would like the comments to be outside. If you have to make comments when somebody is speaking, a panelist or speaker, go outside and do it. It's not fair that people came here to listen.
JIM WARD, ADA WATCH & NATIONAL COALITION FOR DISABILITY RIGHTS >>
Good morning. My name is Jim Ward and I'm president of ADA Watch and National Coalition for Disability Rights. We're a social justice organization united to protect the civil and human rights of all people with disabilities.
I can't pretend to be an unbiased listener today. I'm here with a shared commitment of my organization to partner with ADAPT and the other organizations here to end the institutional bias that currently controls our healthcare delivery and funding in America.
I stand here in unit to give you -- to support the basic rights of people to choose where they live, for all American citizens to have a right to live near their family and friends in the home of their choosing, getting the support and care that they need.
40 years ago, Robert Kennedy visited Willowbrook, an abusive institution in Staten island, New York, and he commented after seeing the horrific conditions that it was a snake pit, that it was not suitable for humans or even animals to live in. That was 40 years ago. 30 years ago, Geraldo Rivera, a rookie reporter, was assigned to investigate Willowbrook and was in a back ward with a doctor that was fed up there. He found horrendous pictures of children and adults living naked in feces without food.
And what came from that at Willowbrook led to the beginning of disability rights laws and protection and advocacy laws, to intervene in institutions and get people out of institutions and live in the community.
The institutionalization movement started then and was pushed along then, but the movement from big institutions to smaller institutions is not enough. The movement from big institutions to nursing homes to ICFs, community care centers is not enough and doesn't truly provide a home in the community. They are still isolated. They are often neglectful and they do not provide the basic choices needed
[Applause]
- Return to the Index of Speakers.
JIM >> With all the talk in Washington about family values, where is the money? Where is the money that allows American citizens, all American citizens, people with disabilities included, to live in the community, to live in the homes of their choices, to live with their families and friends, to choose what silverware they use, to choose the plates they eat off and what music they listen to and what TV channels they watch, we watch. Basic choices follow community care, community services, funding that supports attendant care, the ability to live in the homes of our choices. Nothing can be more basic than that in America.
Our system is currently being driven, the institutional bias in America is driven by the nursing home lobby, the lobbyists in Washington the high paid corporate professionals, the driving policy in America and preventing the support of basic community services that we need.
So I'm here again representing ADA Watch and National Coalition for Disability Rights. I'm not an objective listener. I will take your stories, we will take your stories and life experiences and inform our reports, our meetings with policy makers in Washington at the state level, we'll take your stories to give further credence and really put a human face on the work we're doing in Washington. Too often the work is detached from the very real life experiences.
Are we asking for too much? Is it too much to ask for the right to live where your choose? Is it too much to ask for the right to live near your family and not be isolated? Is it too much to have basic human dignity and work that comes from choosing where you live and where you call home? That's why we're here today. That's why your stories are important.
We will again listen and take those stories back to Washington to illustrate the desperate dire need to pass the funding, the basic community services and community care, so that we can all call home, our home.
Thank you.
[Applause]
- Return to the Index of Speakers.
CAROL NOVAK, NCD >>
Good morning. I'm Carol Novak and I'm here representing the National Council on Disability [NCD]. Before I go into that, though, I would just like to know that I doubt that I would be here today or on National Council today if it weren't for my friends Mark Johnson, Pat Puckett and Kate Gainer from Georgia.
I don't see Pat and Kate yet, but I talked to Mark, so I'm looking forward to seeing them. My son Jonathan will be 30 years old next month. He lives in his own wheelchair accessible villa with 24-hour care in Florida.
That is what I'm working for, to ensure that every person who has a disability has that same opportunity. It also gives me a great deal of peace of mind because he is an only child and I don't want him to end up in one of these institutional placements when I die.
So I feel very fortunate and I'm hoping that the experience that we've gave in bringing Jonathan into his own home that he can afford on SSI with the appropriate support we can transfer to policy makers so that we can make that possible for more people.
The National Council on Disability is working very hard in this arena. We have produced a couple of, I think, ground breaking reports. The most recent one was released in December of '05 and called Long-term Services and Supports. We don't call it long-term care because care sounds like a nursing home to a lot of people.
It also addresses the need for the common -- it isn't just personal assistant services that make life in the community possible for people with disabilities. It's also affordable, accessible housing, affordable, accessible transportation, employment support, assistive technology. It's a combination of supports and services that when they are combined, make real lives for real people. And that is what our report addresses.
A year earlier in December of '04 we released another ground breaking report called “Livable Communities” for adults with disabilities. We are collaborating with the American Planning Association to make this concept, this vision of livable communities a reality. We need to be working with the implementers and in this case it's the American Planning Association. They are already done an audio conference training program for members around the country.
We have a second, what we called “Livable Communities Part 2” report coming out very soon. We have just gotten the final draft from the researchers. So the national council on disability is very supportive and our partner in your efforts to move the institutional bias and create lives and communities for real people. And we look forward to getting the transcript. We've already requested that from Bob Kafka. Everyone on the council, the staff and members will be able to benefit from the experiences that we're going to hear about. Thank you for having me.
[Applause]
- Return to the Index of Speakers.
CASSIE JAMES>> Thank you-all for being here today and I want to make sure that everybody gets to live in the community. Now, Bob Kafka is going to come up and tell you what drives ADAPT to be here.
And I want to call -- before Bob gets on, Johnny Crescendo is going to do a story about Josie, sing a song after Bob has a word.
And Tonya, if you could get ready to come up, Elizabeth Richter and Ed Hahn.
BOB KAFKA >> You'll see on your program, Lois Curtis was going to be the first speaker. Yesterday she came down with bronchitis and had to check into the hospital. She's fine, but she was not able to make it, so just want everybody to know that she's doing okay. If you don't know, Lois Curtis was one of the plaintiffs in the historic Supreme Court Olmstead decision that basically put into legal words that we have a right to live in the most integrated setting.
Let's hear it for Lois!
[Applause]
- Return to the Index of Speakers.
BOB >>
I'm not going to say much. We've been fighting this struggle since the passage of the ADA.
We've made amazing gains and there's a lot of gloom and doom out there, but thousands, hundreds of thousands of people have fought their way out and we'll hear many of those stories today, but just know it's hard to touch it. When you're out on the street doing what we've been doing for years to really see that the statistics -- we've actually moved over 25% of the federal dollars -- when we started this, it was something like 13% going to community services and 87 going to institutions. Currently there is something like over 36% going to community and 64% to institutions. Is that where we want it to be? No. But we've come a long way and we can give ourselves a hand for the struggle and battle.
[Applause]
BOB >> I just want to say something. As we were driving here, I turned on the TV and this gentleman was saying something that I think epitomized what we're about. He said “passionately believing in something that doesn't exist -- yet” and if there's something that ever really I think sends the message without a doubt is that we certainly are passionate.
We certainly know that what the institutional bias is not done yet and it still exists, but we know in our lifetime we are going to free our people and going to live in the community and this will be a note in history and you should know that you made it possible and the people here are an illustration of that freedom. Thank you.
[Applause]
- Return to the Index of Speakers.
JOHNNY CRESCENDO >>
It's an honor to be here today with all these distinguished people and testify and I've been there and know exactly what it is. This is a song about Josie Evans. I wrote this many years ago after meeting a person I named Josie (it’s not her real name) in England.
[THE BALLAD OF JOSIE EVANS]
Josie was a wheelchair user
She spent 11 years inside
A short stay institution
Where she was banged up without trail.
11 years the white coats met and
Talked and analyzed
Dispensed the drugs politely
Until one day Josie died.
Not me said the social worker
I was Josie’s friend
She was our best customer
I was with her ‘till the end
Our boss said no resources
Were available at the time
I’m just an employee
Can’t put my job on the line
Not me said the director
I can’t be held to blame
It’s the politicians who make decisions
I’m just a pawn in their game
I agree most strongly
That Miss Evans was done wrong
But the council wanted cuts
And I had to sing their song
And the finger of guilt
Draws a circle in the sand
And who’ll take the blame
For the desperate and the damned ?
And which people vote
For injustice in the land ?
Is it you or your mother is it you ?
Well the leader of the council
Wrung his hands and shook his fist.
“You gotta blame the government
For a scandal such as this
Blame Thatcher, Blame John Major,
Blame the ones who put them in”
Then he went to wash his hands
Declaring he was clean of sin
I give to charity everyday
Said John Major at the table
It’s the very least that I can do
To help the poor disabled
Efficiency is what we need
Poor management’s to blame
Would you like a small donation
To the memory of what’s her name
And the finger of guilt
Draws a circle in the sand
And who’ll take the blame
For the desperate and the damned ?
And which people vote
For injustice in the land ?
Is it you or your father is it you ?
Josie left a letter
Which I found amongst her things
It said I am ! and I survive
And my heart still has wings
They can take away my freedom
They can drug me with their lies
But they don’t have my permission
And I hang on to my pride.
[Applause]
LATONYA REEVES, CO >>
My name is LaTonya Reeves and I'm originally from Tennessee. When I was younger I was put in a nursing home that was supposed to be a Rehab center. I spent a year and a half there. The abuse I received was one day I had an accident and the aide made me wash my face in it. The second one was there was therapist there and she was a therapist from hell. She put me in the bathtub and turned cold water on me and on my face and made me stay there for two hours and said if you don't stop screaming I'll drown you. So I let relatives know about this and I got taken home for Christmas and never brought back.
[Applause]
- Return to the Index of Speakers.
LATONYA >> Meanwhile I was trying to get services in Tennessee, which I couldn't, so I went on my first ADAPT Action in Baltimore and met Wade Blank at Atlantis Community and he told me about Atlantis/ADAPT and I moved there, but I've been there for going on 16 years living in my own apartment and also my job there is to free our people from nursing homes!
[Applause]
- Return to the Index of Speakers.
CASSIE: Here is a certificate from ADAPT. Thank you. Randy.
RANDY ALEXANDER, TN >>
Hi. My name is Randy Alexander. I stayed a little over a year in a half in Hot Springs Rehab Center, the state institution in Hot Springs, Arkansas. I ended up going there unfortunately because of rehab, but left there after another year because I was continually told there wasn't the services I needed to live in an apartment.
I couldn't get the hours I wanted. I couldn't get simply somebody to help me transfer in and out of bed, so I had to stay there. And during that time all my decisions were basically taken away from that point in time because there wasn't the option for me to have freedom to choose what I wanted. Once I was there, I didn't have the choice. I didn't have freedoms. I came in late, not much late -- some of you know me, I had a few beers. Friends of mine came to town and we went and did what we did before, go to a band and have a couple of beer. But because of that I was told that unless I wanted to go to the state nursing home 30 miles out of town that I had to go see a psychologist and I had to go on psych meds. Not saying that didn't help me out in the long run but it wasn't my choice. It wasn't about what I wanted at all. It was about them making sure they could help control me. It wasn't about what I thought might be good for me. It was what I had to do in order to stay -- just to survive.
I also, you know, can't remember how many times that people walked by in the middle of the night and flipped the light on because they were mad at me. I can't remember how many times that the night shift was a little extra clumsy and things got pulled out or I was left hanging half out of bed. And I can't tell you I never realized that what I didn't learn in there was that maybe if I didn't complain to the management about the mistreatment I wouldn't have been mistreated. But, see, it doesn't matter.
Because since I didn't hire that person and that person knew that I couldn't fire them, they had control over the situation. It wasn't about anything I wanted or anything I needed because they had the power to do whatever they wanted because I had no choice in the matter. And as long as we continue to have a system of segregation and where people have no power and they have a loss of power, and they have no control over who they hire and fire and have in their lives, abuse and neglect will continue.
Thank you.
- Return to the Index of Speakers.
CASSIE >> Thank you.
[Applause]
MICHAEL TAYLOR (Read by RENEE FORD) TN >>
I'm Renee Ford from Memphis and I'm reading Michael Taylor's statement. He desperately wanted to be here but the nursing home would not let him out. He says, I first went into the nursing home about a year ago. I was in a car wreck that paralyzed me from the waist down and a little over a year ago, after I got out of the hospital a little home health services were set up for me but I had to go back in the hospital for extended wound care and the next time they were going to discharge me it was decided that the best care would be given to me in this nursing home place. I soon found out that this place was more like a prison. They controlled everything: when I woke up, what I ate, where I went during my days here and when I went to bed. They also got control over any money I could get. Before my accident, when I was on my own, I usually ended up with several hundred dollars after all my bills were paid every month. Here they gave me a measly $30 every month and think didn't need more because they took care of all my needs. That's BS. For example, I can't always use their telephone so I have to have my own cell phone. If I didn't have a little extra help from somebody else I wouldn't even be able to make a simple phone call. A couple months ago they were trying to drug me up to control what they thought was improper emotions. I refused to take the meds and they put a label on me as a trouble maker. I call them drug pushers. I so wanted to be here myself to give this testimony, but the way this messed-up system works I don't have the freedom to go out of town for these things. Hell, I can't get away for one night let alone five. They say when Medicaid finds out I'm going they could have me labeled as needing skilled care
-- oh, I'm sorry. They say that when Medicaid finds out I was gone, because they have me labeled as needing skilled care, they will cut off my services. Skilled care, right, I hardly get any more care at this level than I did when I was in regular care. They just get more money and that's what it's all about, money. They don't give a damn about me and I want out of this explicative place.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Where is Michael Taylor from?
RENEE >> Memphis.
CASSIE >> Ed from Pennsylvania with his story.
ED HAHN, PA >> 
Good morning everybody my name is Ed Hahn. I'm from Erie, Pennsylvania, and I graduated from college and then I decided I wanted to live in the big city, so I move to Philadelphia and I moved into what was called the wheelchair community so they made it sound really good and then when I got there I realized it was a nursing home. I could only take two showers a week. They only gave me $30 a month and they changed my medication and I slept all the time. And I was like a ZOMBIE. And then my grandfather died, and even though I had come from Philadelphia to Erie by myself in a manual wheelchair -- it’s a 12-hour bus ride -- they wouldn't let me ride home on a train for two hours to go to his funeral. And that was the beginning of the end.
I called information and got the number for a place in Erie and I moved into an ICF for -- they told me I was going to be there two years and I was there six months and I've been on my own for about a year and a half.
[Applause]
- Return to the Index of Speakers.
ED >> Thank you! I can buy what I want. Do what I want when I want and this is what we're fighting for.
Thank you.
John Gladstone from Pennsylvania, Barbara Heinz from Texas, and Greg Sutton from Georgia, and Dawn Green from Wisconsin.
JOHN GLADSTONE, PA >>
Good morning, my family. I'm John Gladstone from Philadelphia. I was in Inglis House for 14 years and I seen-- my friends die – I seen a friend of mine just throw himself, he threw himself away in a garbage can. He was that disgusted and I've seen people kill themselves. They don't want to kill themselves but they don’t want live that way. And believe me I almost did a couple of times. But I held on there by faith. But I'm a strong believer. We have to end these nursing homes and we have to close these nursing homes. And I don't care -- they say it can't be done. I say it can. If we take it one nursing home at a time.
Everybody goes to, every state pick out a nursing home and just say I’m going to close that nursing home. It won't happen over night. There will be lots of discouragement, but they can be closed. They can be shut down. They're warehouses. They’re prisons. They're murderers. They're murderers. They're murderers. They're murderers. And I'm not going to -- and I'm going to fight as long as I can with every breath of my body if I have to die doing it to close these nursing homes down and give jobs….
Now I have nothing against the people who have to work in nursing homes. I realize you have to have a job, but attendant care is the way for the future. We’re going to give our attendants a decent wage. We’re going to make them benefits. They don't have to work in nursing homes under certain conditions, under these politicians who are taking money from those HMOs. And these politicians, even my friend Bill Clinton, he took money from HMOs in Arkansas. We have to stop. We have to stop these nursing homes. We got to put them out of business right now.
CASSIE >> Well John, I know if anybody can it will be you.
JOHN >> It will be me because I’m going to hang in there. I don’t care. I know we have opposition, but I'm ready to fight anybody any time
[Applause]
- Return to the Index of Speakers.
BARBARA HEINZ, TX >>
Hello, my name is Barbara Heinz. I'm from Beaumont, Texas. I lived in a nursing home in Houston for 11 years, 8 months, 28 days. I don't know the minutes and seconds, but while there, I saw some bad things. People would steal from us, beat on us, tell us we're nothing. When they found out I wanted out, they try and brainwash you into thinking you can't do nothing for yourself, but I got out. Since I've been out I have been on a board of directors for CBFL and I am happily married. So I'm not letting nothing hold me back.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Thank you so much. Dianne -- Dawn Green from Wisconsin, Greg Sutton from Georgia.
DAINE SCOTIN, GA >> 
Good morning. My name is Diane Scotin. I'm from Will Robbins, Georgia and at the age of 13 I was placed in Gracewoods State School and Hospital in Augusta Georgia, which was at a time that I did not know -- I was very young and it was a mental institution and there was a lot of people there that had a lot of mental problems and my problem is cerebral palsy, and so therefore I didn't understand how this mental disability person is supposed to react and act. So when they found out that I wasn't really mentally ill, they kept me drugged up for about four years on Mellaril, Valium and a few other real powerful drugs that had me hallucinating and stuff like that. And at the age when I was 17 years old -- I stayed there from '63 to '70 and at the age of 17 years old I had a terrible experience. I had to fight before then just to keep the others from hurting me and the employees from hurting me and this one incident when I was 17 years old, they… She came to me because I was not taking my medicine and I didn't stay doped up or however you want to say it. They kept me in a lock-up for, a room that was eight by eight and I had to use the rest room down a drain, both urine and the bowel, it had to go down a drain. I had no clothes on. It was freezing cold, sleeping on a cement floor. And this one incident she came in and said, “are you ready to take your medication now?” I said, “no, I'm not going to take it.” And she says, “well, here is your water. You take a bath.” And she threw a rag and actually it gave me third degree burns on my chest. And everybody has a -- everybody has a breaking point, and I guess at that time that was my breaking point because …
Audience Member>> yeah!
DIANE >> when she hit me with that rag across my chest and I pulled that rag away from me and blood started coming down my chest and I didn’t know what was going to happen. Something snapped and when it snapped I took that boiling water that she had sitting right there in front of me and I flipped it. And she had a nylon uniform on and it stuck and gave her third degree burns also.
[Applause]
- Return to the Index of Speakers.
DIANE >> and when I was healing, I had to go to the hospital out there at Gracewood and they told me -- the lady that took me there, she says, “you wait right here and I'll be back. I've got to go to another building and pick up people and bring them to the hospital. And you stay right here until I get back.” I thought, “God, this is my only chance. You know, this is my only chance.” I broke away from the hospital. I went to Dr. Persley. He was the superintendent at Gracewood State School and Hospital at that time and he was having an important meeting in his office. And when I got there, the lady said, “you can't go in there and see him.” I said, “oh yes, but you don’t understand they're fixing to take me back to lock-up and I have to talk to him.” She said, “no, you can't go in there.” I said “watch me!” and I opened the door and busted in there. I said “you ain't got to believe me, but this is what's going on.” Because they took the employee's word over the residents. And I told him I had to fight and I kept putting people ahead of me when they were giving medicine. And I showed him the burn. I took my uniform. We had uniforms and I unsnapped it and I said “I'm not trying to be indecent, but this is what happened to me 7 weeks ago” and I says, “and if something ain't done about it,” I says, “I'm going to be just as crazy as the rest of them in here.” Which I didn't know anything about the American Disabled Association until I got involved in 19-- I mean 2001 with Disability Connection in Macon Georgia. And I'm fighting for the people that has been in institutions that might end up in one. Don't give up.
Just keep fighting. Don't let them run over you. This lady came around and she would give you what she called a knock-out shot. And when she grabbed my arm -- when she went to give me a shot, I grabbed her arm and snatched the needle out of her arm and jabbed it in her arm and pushed the button and I pushed the needle down in there. I said “let me see how you feel in about 30 minutes.” And I just, I just you know --
[Applause]
- Return to the Index of Speakers.
DIANE >> I was tired and fed up. And about six weeks later, Dr. Persley came in about three weeks and he had a camera with a man and he fired her right there on the spot. He said let her have her keys and she'll never work into another facility where she has to take care of anybody. Because she would literally cut the residents. She would stab ‘em, stab them and say it was self-inflicted on ourselves.
And one more point I want to make to everybody, if I may, and that is no matter what somebody says, you cannot do. If you want something bad enough, you go for it. No matter what the cost of it is, you fight. Fight for what you want. You fight to live on your own.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Thank you so much.
[Applause]
GREG SUTTON, GA >>
Hey, everybody. My name is … I come from Georgia. I've been in a nursing home for three years. I'm a 24-year-old and ever since I been in there, one of the PAs got mad at me and fell on the floor and she turned around and tried to hit me. I said you ain't going to treat me like this, I said if you lay a hand on me I'll lay a hand back on you. I'm not going to take that abuse. And it was rough. I feel like I was in a prison being in a nursing home and now I feel like I'm a free man, more or less, free. Nobody don't need to be in there because it's not fun and I'm thankful for everything since I got out. Got to sign in; sign out. I feel like I've got my own place and I'll do what I want to do. When I was in a nursing home you can't do nothing. You can't get out and do what you want to do. One time my roommate was in the room with me. All of a sudden the PA came in and tried get him out of the bed and he fell on the floor and the PA just walked out of the room. All I did was to just come over there and pick him up and put him on the bed. The way I feel, I don't want anybody to treat me like that. And now I'm 29 year old and they treated me bad and abused me and one day they told me take this medicine. And the medicine was not mine. I said “you got the wrong man. My name isn’t Greg,” but she gave it to me and I threw it down and she said you pick that up. I said I ain't going to pick that up. And now I'm a free man and I just feel good living on my own. I just got out. It was November 22nd of 2004 I gout of the nursing home and thank God I'm free. We're all free.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Mike Clark, Daniel from Kansas, Daniel Remick from Wisconsin and Teresa Grove from Illinois and Norman Lester, and Lewis.
DAWN GREEN, WI >> My name is Dawn Green from Milwaukee, Wisconsin, and my stay in a nursing home wasn't that long, but I had a rehab situation that was a rehab situation from hell. I had rotary cuff surgery done on my right shoulder and this was my good arm. I had a CVA when I was nine, so my left arm is paralyzed. This is my good arm, my only arm, and I was -- I had surgery on September 28th and I was discharged into a nursing home on October 3rd and they kept me in – I term the nursing home a joint. I called it the joint because it was that awful. I called it the joint because it was like a prison cell. The care there was awful and, I mean, I had to wait anywhere from half an hour to two hours to go to the bathroom, to put my light on and had to wait anywhere from a half hour to two hours to get on to the commode, and the reason why I was discharged into the nursing home is because I couldn't wipe my butt or take care of myself in my home. If I had care in my home with Medicaid or Medicare, I would have been able to go home for the eight weeks and then done outpatient therapy from home, you know from the hospital have my therapy at home. And then I wound up -- I was supposed to be transferred back from the hospital for my intensive rehab therapy and it didn't happen. I wound up having to stay in the joint for my intensive rehab therapy. So I wound up spending almost three months in the joint. It was ridiculous. Having to wait on care and wait, I couldn't feed myself, so I would go in the dining room to get fed and having to wait for somebody to feed me. My meals were cold. That was ridiculous, too. And, as far as therapy was concerned, that's not therapy. That’s no therapy. They don't give therapy in the nursing homes as far as we're concerned. It's not therapy. It's like duty stuff. They don't have the equipment that they have in the hospitals and the rehab situation. They don't have the kind of equipment that younger folks need. And I'm sorry, but it's just not right. So then they -- by me staying in the joint, they used up all of my therapy time. I mean damn near all my therapy time. So now when I got discharged I only had like 20 outpatient therapy units to use for outpatient therapy, you know, when I get out. So it's not fair. And now I need therapy to get my arm stronger and it's not fair. And it's not just. So I don't know -- and like the other folks said, they drugged me up. They kept me drugged most of the time. I felt like I was sleeping more than I was awake.
CASSIE >> How about now?
DAWN >> Life is great. It’s nice to be home. Home is where -- home is where you should be. I have my own apartment and I'm independent with help from aides. I have help in the morning and help in the evening, so life is good. good.
CASSIE >> Thanks a lot.
[Applause]
- Return to the Index of Speakers.
KURT BRESLAW, CO >>
I’m from Colorado and spent seventeen years in a nursing home. It was Coastline Convalescent Center. I call it Coastline Concentration Camp. I was 19 and my roommate was 99. They said I would be there all my life. I don’t think so. Now I’m out and I’m going to stay out. Everybody I know is out. I swear, you don’t live in a nursing home; you only exist in a nursing home. I will stay free.
CASSIE >> Thanks a lot. Free our people.
- Return to the Index of Speakers.
JAMES JT TEMPLETON, TX >>
Good morning. I'm JT from Texas.
[Applause]
JT TEMPLETON >> I lived in for 30 years. In a State School. I got out because,
NOLA NASH (interpreting for JT) >> A lawsuit. because of a lawsuit!
JT >> Lelz lawsuit with Advocacy Incorporated. And I live free now. I live in my own house.
CATHY CRANSTON (interpreting for JT) >> After I got out, I live in my own house I work for ADAPT of Texas and I want to free our people. Thank you.
[Applause]
CASSIE >> Thank you JT and here is your certificate for testifying today. Next is Mike Clark. Is he around here? And, or going to have a song from Johnny Crescendo. Johnny, are you ready to go? Then it's Daniel Remick or Teresa Grove.
CASSIE >> Thank you.
- Return to the Index of Speakers.
MIKE CLARK >> My name is Mike Clark and…
CASSIE >> Please move the mike closer.
MIKE CLARK >> As well as my girlfriend for 10 years. I'm not good at this kind of thing, but I'm going to try to read what I got here. I was hit by a train. In September of 2001 and I was hospitalized for two months for my amputation and my rehab. And my rehab hospital discharged me into a nursing home in Topeka. I was on -- I was very highly dosed with morphine and other medications. And because I can't comply with all their -- with all their rules, the nursing home cut me off all my medication and I went in bad withdrawal. I was sober until I left the nursing home but then I was back on the streets again. No one ever told me about any other resources in the community or HCBS waiver program and stuff. As a result, my health continued to go downhill and eventually I had kidney failure. And a friend found me and picked me up off the ground and took me into the hospital where I had something in my chest for dialysis. And she's going to have to finish for me.
CHARLENE TAYLOR (reading for Mike) >> this time the hospital said to put him in a nursing home.
Audience >> can't hear you.
- Return to the Index of Speakers.
CHARLENE (reading for Mike) >> this time the hospital sent me to another nursing home. The CAN had broke the shunt. She was transferring me to the wheelchair but she never reported it. I reported it. The CNA told the administrator that my friend broke it. I had to undergo surgery to a shunt replaced. She was never punished for what she did. The staff of the nursing facility lied about my medication. They said I was taking pain medication when I really wasn't. I went nine days without a shower. The nursing staff said I had 10% use of my right arm and yet scheduled no physical therapy. One nurse gave me a JMCRD test and she was reading instructions for the first time. Another nurse read my physicians notes wrong and redressed a surgical wound causing skin growth worn off this scar. My friend got me out of the nursing home and used her own money to get an apartment on January 8th, 2003. Overall I am safer and healthier living on my own. I can choose the caregivers who know how to do the job right. I get to plan my own meals and choose -- I get to plan and choose my own meals and stay happier and healthier. I use -- move around and it helps me communicate. This freedom makes me exercise and do things for myself that I can't do in a nursing home. As I look back, I can remember the only people who told me about my options of living outside the nursing home was my friends and advocate from independent living resource center. Without the option to live at home I might be dead or worse.
CASSIE >> Daniel and then Johnny Crescendo with a special treat.
DANIEL REMICK, WI >>
My name is Daniel Remick. I am 58 years old. I was institutionalized at the age of 8 and a half. My rights were taken away from me because of my disability. My mom and dad were told that I would never be able to live on my own because I did not have capability to do normal activity. Which it was a lie. At the institution that I was in I was over drugged so much that I almost died. And not only that but I was beaten up by other residents and I was sexual assaulted by an aide there, which that person who worked there knew that he was breaking the law, but he didn't care. Every one of us was treated as a prisoner and I even told my social worker that “this is not a school. This is a prison.” And when I said that to him he got very angry at me and he said “don't you ever say that.” I said “why? Don't you want to know the truth?” Every one of us that has a disability and right to -- choose, but the only thing is you’re not a social worker. You're just another enemy that wants to destroy me, but that's not going to work. No one is going to tell me that I belong in a nursing home. No one is going to tell me that I belong in a nursing home. No one.
[Applause]
- Return to the Index of Speakers.
DANIEL >> That I can't work. That's why I am a member of ADAPT and believe me as long as I live all of my brothers and sisters who are disabled will have the freedom like anybody else. Free our people.
[Applause]
- Return to the Index of Speakers.
JOHNNY >> When I was eleven years old I bought my first LP. For the young people here, that's like a blackberry, but it's like this big and you played it on something about as big as a fridge. The first album recording artist was a guy called Johnny Cash, and the album was called -- just out called Johnny Cash. He used to go to all the prisons and do a lot of work in prison reform. So I thought since I was coming to Nashville I would kind of adapt one of his songs. And surprisingly, I think probably 60% of the words are still Johnny's, Johnny Cash that is. So on the album he plays it live and you'll understand why, but it's like heavy line and people start cheering because it's all about hating jail. And this is called Inglis House, which is where John Gladstone came from, from Philadelphia. It could be anywhere. So where you hate the most, stick that word in. I just wrote it.
The very first live public performance of this song.
[INGLIS HOUSE]
INGLIS HOUSE YOU BEEN LIVIN HELL TO ME
I’VE BEEN BANGED UP SINCE 1963
I’VE SEEN THEM COME AND GO AND I’VE SEEN THEM DIE
AND LONG AGO I STOPPED ASKING WHY
INGLIS HOUSE YOU ABUSED ME MY WHOLE LIFE
YOU TOOK AWAY MY CHOICE AND MOST OF MY RIGHTS
I CAN STILL HEAR THE PATIENTS SCREAMS AT NIGHT
AND THE TEAR IN THE MORNING IN THEIR EYES.
INGLIS HOUSE YOU DECIDED WHEN I WENT TO BED
With the drugs for your convenience in my head
YOU DECIDE WHAT I EAT AND WHEN I’LL DIE
WHEN THE MONEY GOES YOU’LL SAY ITS ASSISTED SUICIDE
INGLIS HOUSE MAY YOU ROT AND BURN IN HELL
MAY YOUR WALLS FALL AND MAY I LIVE TO TELL
THE STORY OF THE ONE’S WHO STILL REMAIN
SO THE WHOLE DAMN WORLD CAN FEEL YOUR PAIN.
INGLIS HOUSE I HATE EVERY INCH OF YOU
YOU JAILED ME AND YOU SCARRED ME THROUGH AND THROUGH
YOU TOOK MY LIFE AWAY FOR THE DOLLAR AND DIME
BUT MOST OF ALL YOU TOOK AWAY MOST OF MY TIME.
INGLIS HOUSE I’M COMING BACK TO TEAR DOWN YOUR WALLS
TO GET MY FRIENDS OUT FROM YOUR BLOODSTAINED WALLS
THE CASH COWS ARE STAMPEDING OVER YOU
INGLIS HOUSE I HATE EVERY INCH OF YOU.
Thank you
[Applause]
- Return to the Index of Speakers.
TERESA GROVE, IL >>
My name is Teresa Grove and I'm from Illinois.
AUDIENCE >> We can't hear you. Bring it closer.
TERESA >> My name is Teresa Grove and I’m from Illinois. I am emotionally and mentally disabled. I've been in an institution since I was 14 years old. I have been in an institution at least 43 times over my lifetime. I have been locked in seclusion rooms with nothing but a hospital gown for over eight hours at a time with time added just by the staff writing that I was inappropriate even if I was quiet, alone in a bear concrete room. I've been in restraints for crying or showing symptoms of my illness. For over six hours at a time because all it took was for the staff to say I was doing something wrong when I was laying there quiet. We call that the power of the pen. We were afraid of the power of the pen. Also I had therapists that gave my hard earned trust and use his sick fantasies in order -- for his self that he claimed was in my best interest. I was initiated in an institution by all the girls with a broom handle. I was told by a staff person and a security guard that I was with whining and I should be quiet and grow up. I learned that if I wanted out of these places I should stay in my room and only come out briefly. Once in the community I found a lot of support living independently by going to PSR, which is psychosocial rehabilitation and being in DPD, which is behavioral therapy. Along with ACT, assertive community treatment, I live in the community, but I live under an ongoing threat of one more admission anywhere, and I will be placed forever in a nursing home. Thank you.
[Applause]
- Return to the Index of Speakers.
CASSIE >> Louise, Norman from Illinois Bathea, and I also have an announcement. Because we're moving faster than we anticipated, we will be taking lunch from 12 to 12:45. If we could be patient for a moment. For some of us it takes a little while to get started.
LARRY RUIZ, CO >>
My name is Larry Ruiz and I would like to tell you about my life after two years old, and I lived on my own for 31 years. I was institutionalized until the age of 21. I was left at Ridge (check??) as a baby. I was then diagnosed with cerebral palsy. My mind is completely intact. I had physical impairments. I lived at Ridge (check??) until I was 18. In 1972 I was sent to live in the nursing home in Lakewood called Heritage House. I lived there on a youth wing with other children and adults. I lived at Heritage House for 3 years during which a lot of things happened to change my life.
Most of the people in the youth wing also grew up in institutions and we did not realized that we were living in substandard conditions. We were treated poorly and all of our state benefits went straight to the nursing home. We were given an allowance of $25 per month. We had an activities director named Wade Blank. He helped us form a residents council. Wade discovered that there were a lot of things to do for entertainment. We saw shows such as Elvis and Grateful Dead and our eyes were opened to the outside world and we began to grow restless. Wade had a vision of us being able to live on our own. He helped us realize this possibility. Once nursing home caught wind of our ideas of independence things began to get ugly. We were treated worse. We were even threatened by the administrator with a middle of the night eviction. Wade was fired and a restraining order was taken out against him. He used this time to look for an alternative for us. He found us apartments in the Las Casitas housing projects and then he came back to Heritage House the last time to break us out. It was June 1975 and the Atlantis Community was born. We named our little community after the lost city. I had surgery on my spine before leaving the nursing home. I was still in that body cast when I moved. I was in that body cast a total of 9 months. I never felt so free as I did the day I got my body cast off and I was living in my own apartment. Atlantis was only the second independent living center in the country. The first one being in Berkeley California. We went on to demand accessible public transportation. We did this by going to Colfax and Broadway, one of Denver’s busiest intersections and throwing ourselves into the street to block the buses. We also entered a class action lawsuit against Heritage House. It took ten years, but 22 people received $22 million in a settlement. With this money, several people were able to build homes. I bought my own home and lived there for ten years. Atlantis continued to grow and continued civil disobedience across the country. I myself had been arrested about 57 times.
[Applause]
- Return to the Index of Speakers.
>> ( horn blowing.).
LARRY >> In 1993 Wade Blank died along with his 9 year old son when his son got caught in the surf off of Baja Mexico. I now live in a beautiful apartment in Arvada Colorado. There was a healthcare agency PASCO that sends aides to my home to help with activities of daily living.
CASSIE >> Great story. Thank you Larry. Could I have Jamie Ziegler and Steve Schaefer, please and Samuel Mitchell.
STEVE SCHAEFER, IL >> Hello, everybody. Can you hear me? My name is Steve Schaefer. I was asked to spend a moment today telling you how the institutionalization of my close friend affected my life. Remembering the this experience and especially telling the story to others is extremely emotional for me. I don't know if I can get through the testimony without shedding a few tears and staying focused. And I do know that I can't properly relay the story in the few minutes available today. So I may be putting some of it in writing. In 2004 I spent most of my evenings visiting my close friend Jamie at the nursing home where she lived. She was not one of the elderly but so sick with heart and lung diseases that she was given only one real option, to move into a nursing home where she could get help with paying for oxygen, medicine and therapy. Without insurance and not qualifying otherwise for assistance she needed to live there in order to stay alive. There was no choice. During these visits I witnessed care that fluctuated from exceptional to abusive. I also listened regularly to Jamie's pleadings to help her get out of that environment. I had to become steadfast and to constantly tell her no. In a short time I watched her change from a spirited courageous intellectual to a compliant forgetful and timid woman. Finally after a six-month period, required period of wait she qualified for social security disability. As a disabled adult she now qualified for medical assistance in her home. Telling Jamie no on a daily basis became routine but I kept thinking we must be missing something. There must be a way for her to come home and get the help she needs. There wasn't. I could keep emotions in check during visits, yet sometimes when friends would question when I left her in the nursing home there was really no way to explain the lack of options and it left me feeling empty and ashamed. I felt like I should be able to keep her spirit alive, but I just watched her whither away. Finally, with the help from IMPACT of Alton, we were able to move her back into the community and now she's home. I help her remember to take her medicine and eat. She needs help with many little things you and I take for granted and almost everything wears her out, but she's happier today. I'm not worried about her slipping in her roommate's urine on the way to the bathroom at night. I had to learn about diseases I'd never heard of before and become handy with respiratory equipment. With the consistent help from IMPACT we have seen her health improve and most of all her spirit return. I feel a lot better today knowing that I've been a part of this resurrection. It just keeps getting better.
[Applause]
- Return to the Index of Speakers.
JAMIE ZIEGLER, IL >>
My name is Jamie Ziegler and I have something written, but I'm not going to read it because I'm just not going to read it. This is part of my story. Yeah, I see some eyeballs rolling out there. And this is another part. Actually, you know what, I have a little bit of a different story and I want to ask if I can do this without crying. I need to ask people's forgiveness. Because I was the nursing home administrator before I got sick.
AUDIENCE MEMBER >> boo!
JAMIE >> Please don't throw rocks. I had to live there for a whole year. And I wasn't the administrator of the one I lived in, but anyhow, yeah. Isn’t that horrible? I moved in in May of 2004 because I had a really difficult time. I couldn't walk and breathe and my lungs were getting worse and it was affecting my heart and I had to quit work in January and after a while I ran out of money and I didn't have insurance anymore. There really weren't any options for me. I was from Illinois and the laws are set up in a way where if you don't really have dependents and single adult without insurance and you need medical help your only option is going to the nursing home if you're not already declared disabled, and that was my case. So I moved into the nursing home where I had several friends working and I thought it would be okay, because I knew folks working there. Within a short time things changed. I was not okay. And the reason I hold these things is the bra represents the loss of my spirit in a very short couple of months period. When I first moved in I was there on a Friday working on a computer and on Monday I was living there. And I checked on second shift and went to the dining room and some nurse was assigned to me and we didn't know each other and she put a bib around my neck and cut my meat. And when she started to open my milk and I snapped out of my daze and I said, I can do that myself, bitch! And I immediately thought, oh, my gosh, I'll be on psych meds by morning. I worked there for a long time. So anyway, when I first went there, I found that as a
resident you have no locks. You know your bedroom has no lock, your bathroom has no lock. You have no privacy whatsoever and very, very, very few people knock on the door. And then, when I very first came, I still had modesty and dignity and it bothered me people walked in all the time.
And I didn't have the ability to – I couldn’t stand here and talk, and I didn't have the ability to open I couldn't stand here and talk. I couldn't breathe. I could maybe go ten steps. I don't need oxygen all the time. I'm not in a wheelchair all the time. But I would go to the bathroom and take off my bra and tie it on the doorknob and then tie it on the toilet paper and make my own lock and it would slow people down. It had elasticity, and they'd try to come up. And I would yell at them. It didn't take long before -- like everyone else in the nursing home, I just stopped wearing a bra and if you really look around the nursing home, a bra is not a normal piece of clothing.
Don't use them. So I didn't wear one either. It was just extra hassle. So then I didn't have a way to lock the bathroom. By that time I didn't notice it and I didn't care. In a couple more months I stopped going into the bathroom to change. I just got dressed by my bed side. And then I really didn't see this until I got out a year later and Steve was working with me on telling our story, which we do all over the place on the other side. But in that time period, when I stopped wearing a bra and stopped going to the bathroom to get dressed, pretty soon I stopped pulling the curtain. And by the time I didn't even shut the door. So I would just be getting dressed by the bed side with the door open and the curtain open to the community and I didn't even notice it. It didn't take long at all to just lose my modesty and dignity.
The other thing I like to show -- we actually have a 90 minute program called On the Other Side, which she won't let us do the whole thing today. This looks like. A brush. It is the B-hall brush. No one is very surprised in this group. This brush was kept on the linen call on the B-hall where I lived and the nurse's aides would get people up in the morning and help them into the wheelchairs and stop and brush their hair and go on to the dining room. Every single person on my hall that couldn't say please don't brush my hair with that brush had their hair brushed with this brush. It was pretty common. We would steal them and they would just get another one. We have a whole pile of them.
Things were just not good. I had a day where one of the house keepers kind of lost her temper and was screaming and yelling at me and that was hard to bear. I -- he would tell me to go tell someone. I never would. I didn't want to rock the boat. I was afraid they would make my life even more miserable than it had become and I didn't want them to put me out because I needed the oxygen and the medicine and the therapy and I didn't see an alternative. So I never told anybody even when they would be yelling and screaming at me or giving the wrong medicine, which was almost daily. Everything was just crazy.
One of the stories we tell in our program -- and it's short and I want to tell about the first day I was there. Since I had been so sick in the community when I moved in, of course, I got oxygen and that made my life better immediately. My first night wasn't bad because I slept well with oxygen and everything. I had a wheelchair but the therapist told me not to use it except as a walker so I wouldn't become wheelchair dependent and just go as far as I could and sit down and rest and then do it again. I felt so good when I woke up, so I went out of my room. I was at the end of the B-hall. It’s one of those wagon wheel facilities. I'm looking at the nurse's deck and feeling great, I can walk all that distance, no problem. So I walk about five steps and I'm like... I couldn't move forward, so I sat in the wheelchair and nobody was watching, so I wheeled myself the whole rest of the way to the nurse's desk and then all the way down the corner and to therapy. Then I was assigned this little gal named Katie. If you don't have Medicare, you don't get skilled therapy. Medicare you get skilled therapy. That's someone with six years college training. If you're like me you have someone with two extra days of nurse's aide training and nurses add training is - a six-week half day program. So Katie was my nurse's aid aide and she said you're going to walk two miles today. And I said, there ain't no way I'm walking two miles. I can't even hardly stand up and breathe. She said, well, the doctor said he wants you to walk two miles a day but you can take frequent stops and I'll walk with you and it will be okay and you can push the wheelchair. I said, Katie, I don't see that's possible. She said it will be okay. We’ll take our time we'll be at a goal. We'll walk slowly and make two miles your goal. Well, there was no way. So for a couple three days me and Katie sat off every morning and to walk two miles. And I would get ten, 12 steps and then I’d have to sit. Well, the third day I went to therapy and I said, Katie, I want to see my chart. So she brings me my chart down and we're flipping through it and I looked at the physician's order and I said, Katie, this says walk for two minutes daily, not two miles. And she's like, oh, yeah, it does. Yeah everything was like that. Everything was like that.
But Steve would come and I would say please take me home, please take me home. And finally we got involved in the community independent living program at IMPACT of Alton Illinois and they started getting the medical wheels moving.
It took a couple months to convince my physicians I could live in the community and once everyone signed off on it I got to go home. And it was so different and so wonderful. And there's a list I got on the web, but every one else said it, too. Home is so different. I don't leave in fear. I have myself back. I get my medicine when I need it. That alarm goes off after 12:00 med. I know the contents of the foods I'm eating. My meals are hot and on time. My laundry doesn't get lost. My roommate doesn’t wake me at 4:00 a.m. I don't have to walk through the smoking room with my oxygen to get to the patio. People don't scream all night and I don’t have naked people wandering around my bedroom. I have internet access. My friends are comfortable visiting and I can use the phone anytime I want. I have room to unpack and spread out my things. I can talk to my own doctor when I have a concern or question. I trust my caregiver 100%. No one walks in without knocking. This goes on and on and on. But most of all it's home and I'm so glad I'm there!
[Applause]
- Return to the Index of Speakers.
CASSIE >> Samuel Mitchell, Sparky, Jeannie Searle, and "Spitfire", would you like to... will I ever learn to... go ahead, Jean.
JEAN SEARLE, PA >>
Hello my name is Jean Searle and I'm from Philadelphia home of the Philadelphia Eagles. The reason why I want to give testimony today I don't like the institution. I used to live in an institution. I lived -- the first one that I went to I was 12 years old and they told me that I wouldn't have to be here for very long, that, you know, they wanted me to be and nowhere else for me to be at that time. And I had been there for seven and a half years and then I moved to another institution for three and a half years.
The institution I didn't like because they made you do stuff that I really didn't want to do, and the one thing that popped out in my mind is that every Saturday they had what you call a total GI. And total GI is like you had to clean your room -- you had to strip your room top to bottom. You would take all your clothes out, all your bedding, your -- everything, your personal possessions you had to take out of your room. You had to scrub your wall from top to bottom. You had to put everything out in the hall. You have your wall, your base board -- your everything that was a part of your room -- you have to do. And if you found one spec of dirt or one spec of dust or anything you had to do it all over again.
So that meant you – no I -- had no time to go to breakfast with the other crew. You missed breakfast. You had to wait until lunchtime until you could have a meal or something. And I really didn't want to do that. If you did anything wrong or if you were punished, you got punishment and they would put you in the corner just by yourself faced to the wall, not with anybody else, not talking to anybody. They either put you here behind your back or just tell you hold it here behind your back. You couldn't move or do anything like that. And that's why I don't like the institution.
The other reason why I don't like the institution is because I don't believe people should be there. I believe people with disabilities should be in the community of their choice. I believe that if they want to be in community, they should have a right to choose where they want to be, how they want to live their life, what they want to do and stuff like that. And recently I moved out of the institution in 1984.
I've been out for 22 years and out of those 22 years my life has changed a lot. I work for a law firm in Philadelphia. It's called the Disability Law Project. I've been there for 12 years this year. I travel all over the state and tell my story about people in the institution, me being in the institution, why I don't like it there and why I think institutions should be closed. I'm with the DD, Developmental Disability, Council and I'm on Governor Rendell’s committee. I've been published in quite a few newspapers and I've been published in people's website and I'm getting ready to publish a book soon about me being in a institution and how my life has changed and why I think, you know people shouldn't be there and stuff like that.
And you were not allowed to date anybody in an institution, you had to be by yourself. You were not allowed to go off campus unless you had a notice from your doctor or case manager, but it had to be two weeks' notice before you were allowed to leave campus. Everything was on campus. The doctor, the hospital, everything was there, so you were not allowed to leave. You couldn't go out unless someone knew where you were going and they had an eye on you 24/7, and this is why I this people with disabilities should not be in institutions.
They should have the right to choose where they want to live and how they want to live their life, what they want to do with their lives, like I did. I fought for what I wanted. I went to every politician. I went to every person who I could think of to get me out. Did I like it there? No. Would anybody like it there? I don’t think so. And I had to choose to do this all over again, believe me, I will. I will choose to do this all over again, but I also choose to make my life a whole lot better, a whole lot simpler and make the right decisions for me because this is what I want it to be. I want to be with people who care about me and love me, who want to see good things happen for me.
Thank you.
CASSIE >> Thank you for contributing. "Spitfire" is going to go and then we're going to show a video of a gentleman who wanted to be here, Frank, about his story of getting out. Hopefully we can get out so everyone can get outside.
- Return to the Index of Speakers.
NORMAN BATHEA, IL >>
My name is Norman Bathea, and my experience in the nursing home... my experience in the nursing home wasn’t nothing nice. I was there for four and a half years. They steal repeatedly -- I was never over or under medicated, but I got therapy that I didn't get. And if it wasn't for gentlemans like Tom Wilson, Tim Sullivan, I wouldn't be here this afternoon. I'd like to say that they aren't what they seem to be in no nursing homes. I'm from Illinois and the name of the nursing home is the Renaissance at Midway. And they do all sorts of dirty things. Not only do they steal, they lie and they don't take their weight, and I would like to say that I am tired of it, for one. Something needs to be done about it. And if you can only do something about it, I would be greatly appreciated.
Thank you.
[Applause]
- Return to the Index of Speakers.
SPITFIRE, PA >>
Spitfire from Philadelphia. I’m back, I’m back. With a brand new kidney, and while I was at Einstein, I got to do my favorite activity. Making … liars… Put her at home and forget her.
I call nursing homes death camps. You see what I am wearing? No more T-4. I am Jewish, I qualify. What they did to me… They were…
I like suffer from PTSD. No I wasn’t in the Hanoi Hilton. I was in the hell hole in …lower Merridan... Am I allowed to say their name? Like it or not! What they did to me? Stage 4 besores, rape and torture sound familiar? I don’t call it oxygen stew for nothing.
But I live independently now. ..?? … I don’t mean ...? .. literally..?.. The needle will murder me. The needle was transferred from my veins when I was rescued by a friendly visitor with an ADAPT T-shirt. I love living on my own. I ..?.. I like empowering everyone(?) that’s all. I’m a food cook. I do my own ADLs. I know when to go to sleep. I’m not going to be raped at night. I know I won’t have bed sores. I have a wonderful attendant and, Nancy Salandra said I was at death’s door. Well Nancy, I block doors.
[Applause]
- Return to the Index of Speakers.
SPITFIRE >> Never surrender. Trouble. Make more.
[laughs, cheers]
SPITFIRE >> Let’s burn down the nursing homes.
CASSIE >> Thank you Spitfire. And now we’re going to show the Frank McColm [from CO] video.
[Applause]
- Return to the Index of Speakers.
VIDEO
The disabled weren't being exterminated but were suffering other repression. Thousands were suffering in institutions, kept there sometimes for decades. Some of these people now live among us. Most people in this inner city neighborhood have seen an old man in a wheelchair pushing his way up and down busy and sometimes dangerous streets.
I'm okay.
you're okay? He's always out on the street.
I know. I know. When the old man speaks, he's nearly impossible to understand, so no one knows much about him.
Lives alone surviving on government assistance and the help of an attendant from a local agency. Shortly after he was born 74 years ago, an illness caused brain damage. He is intellectually competent but his muscle control and movements are spastic.
Frank has cerebral palsy. Frank says he wishes he could walk. Most of Frank's keep sakes are in a cardboard box in the closet. He keeps a picture of his father now dead. It was his father who committed him to an institution where he remained for 40 years.
When I met Frank he was eight years old and we lived -- Anna remembers Frank's stepmother. His father had little understanding or tolerance for his son's outbursts.
His father thought he should be checked out at the doctor and see what we could do. The doctor suggested that they put him in a home. Frank's alienation and displays of anger were labeled as mental incompetence and three days after Christmas in 1935, Frank McComb, Jr. was committed to the Colorado home for mental defectives known as Ridge. Official reasons for his commitment was that he was irresponsible and needed to be watched.
He was walking good when we put him in ridge, but they just kind of let him go.
Kind of acted like he didn't want to walk and he got to where pretty soon he couldn't walk.
Anna is a social worker at ridge and knew Frank well. She revisited a long closed dormitory where he once lived.
Frank to me was not intellectually deficient. Physically handicapped, educationally deprived, environmentally deprived perhaps. The general attitude was that people like Frank needed to be basically put away. Frank really...
Frank had no education and knowing that life was limited by the rules and routine of the institution. He knew punishment for breaking those rules could be harsh. In the decades following his commitment institutions began to change and after 40 years at Ridge social workers there encouraged Frank to leave. His father opposed the move, but Frank left anyway to live independently in a world that always excluded him.
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I was strong.
Smoking.
We always kind of look out after him. I think everybody does, the whole neighborhood, you know. Once in a while -- this is a car wash and we just kind of look out for him so he doesn't get run over.
I have 2:00. Where you got to be?
He doesn't like to be helped.
If he needs help, he'll give us a holler.
See you tomorrow.
Even though Frank wanted to move to the community, it was a very difficult decision for him, because I think there was that fear, fear of the unknown and the fear that he would make a...
when she was a social worker at ridge, it was Anna Hill's job to help find Frank a place to live in the community. It's been years since she saw him and today she's come to visit.
Do I look that different? Do I look that different? It's good to see you.
- Return to the Index of Speakers.
Frank panicked as he thought Anna might had come to take him back to the institution.
Oh, no, I wouldn't take you back to ridge. I just came to visit. No, I wouldn't do that.
He thinks I'm going to take him back to Ridge. That's what he's saying. He thinks I'm taking him back to ridge.
I'm not a social worker anymore. I just think of you as a friend if you ever see me.
Frank thought she had come to take him, but he relaxed and they began to talk.
You're on your own. And that's really important for you, isn't it? Your father felt that you should stay for good, but you told him, oh, no. We were really kind of afraid, too, because we didn't know for sure, you know, how things were going to be out there. We thought maybe he might get hit by a car. Maybe somebody would take advantage, but you had to make the decision - by yourself.
It was like hell there. They beat me.
What would you say to a younger person who faces the prospect of living in a nursing home and then live independently? What advice would you give them.
What was it like the first few weeks after you left Ridge and got involved with Atlantis? Was that a good time for you?
- Return to the Index of Speakers.
It was a great time for me.
What would you say those folks in Tennessee who are in nursing homes?
Move out.
I went to the nursing home when I was 14 years old. I remained there for 43 years. They tied me in bed in straitjackets and hit me on the head with soap with a sock so it didn't leave marks. I have lived in my own apartment with attendants helping me for over 20 years. I would rather be dead than back in a nursing home.
- Return to the Index of Speakers.
>> We're talking to Willie Robinson. Where are you from originally?
Originally from Memphis, Tennessee.
And tell me when and how you became disabled.
I became a quadriplegic in 1971 when I was in college. I was in an automobile accident and I was passing in a car and fractured my skull. I was a quadriplegic after that accident, but I was able to finish college and able to go on to work. I went to work and I was able to live alone until I got married in '87, 1987.
And did you have your own vehicle?
yes
Tell me about it. Tell me what kind of vehicle did you have. Did you drive?
I had a van and it had a wheelchair lift.
And you drove it yourself?
yes.
And you went to and from work among other things?
Right.
Did you get a master's degree also?
Yes.
And where did you work?
I worked for Shelby street and college.
And then tell us about your second disability. In October I had a stroke. The stroke is what disabled my arms, I lost complete use of my arms. And what happened after your stroke?
I went into a nursing home. I lived in the nursing home for about five years. And while I was in the nursing home I was visiting the Center for Independent Living. And I learned about the services here.
How hard was it to make the decision to move from Memphis to Denver? You didn't know anyone here, did you?
No. It was a difficult decision, make the decision to move all the way out here, not knowing anyone. But I felt like this was a better choice for my services than to live in a nursing home.
What was life like in the nursing home you were at?
You weren't aware of what's going to happen to you day by day. Sometimes people will come in and say nobody is getting up today, and sometimes they would come in and get you up half the day, so you never knew what your day was going to be like from day to day.
What about choices whether you wanted to get up and go to bed, what you want to eat? Did you have that in a nursing home?
No, we didn't have those choices.
How important is it for you to have choices?
It's very important, very important to have choices.
Did people cook Memphis barbecue? What do you miss most about Memphis?
Well, I miss my relatives. I miss my friends. Of course, I miss barbecue.
The working with MiCASSA to see that benefits are available to people all over the country, not just in places like Colorado or Minnesota. What do you think about that.
I think that's good. I think that would be good that a person could have choices all throughout the United States.
- Return to the Index of Speakers.
CASSIE >> Well, everybody thanks so much for listening. And many are in. We're going to start again at 12:45 hopefully, and hopefully everyone can get down the elevators. We'll have a singer in the afternoon and – Samuel Mitchell is going to start the day at 1:00 and he's a great speaker and Samuel, Sparky, Michelle, and Bertha, from Tennessee telling their stories. Please be back at 1:00.
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CASSIE >> [We’re going to be having a meeting] for new people, it's going to be it's going to happen again. If you haven't been to the New People's Meeting and you're new, it's important to go. Welcome back. We're here in Nashville Tennessee. And we're hearing from people who have lived in institutions, they get us in towns like Nashville. We're listening to people who have lived in institutions and have human rights violations and are happy to be free. And here today to explain why we're in Nashville is Bob Kafka.
BOB >> I'm national organizer for ADAPT. The room here is packed in Nashville and we have a really good panel of people, that people are testifying for. Why are we in Tennessee? It won't surprise people to hear that our national policy that makes institutions an entitlement and community option has caused, not only a disgrace around the country, but in every state in the union. In the state we are in, Tennessee, 99.4% of all Aged and Disabled dollars go to nursing homes leaving 6.6% going for all home and community based services. That's $106 to the nursing homes for every $1 dollar spent in the community. That is a shame on Tennessee, but it's also a shame on our national policy -- that really has changed very little since 1965.
ADAPT is sponsoring this testimony to document what we all know and talk about, but to put down on paper, some of the really heroic stories of people who spent a lot of the years of their lives locked away and then fought their way out. But unfortunately there are still literally millions of people, children, young adults and older people. But it doesn't only affect those individuals. It affects their families and communities as well. It is a national disgrace.
You know, 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 fighting for what doesn't exist -- yet.” And I think the key word in that statement is "yet". We have a vision, a vision that all institutions are closed and all people can live at home with support both public and private with families and support and really talk about family values that is there. If you don't have that vision, if you 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 certainly 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 with the waiver here and waiver there. So we are here to document that, hearing real people, real stories, not statistics, not academic studies, not sitting in conferences just to hear speechifiers, but hear real people's stories, and to us that's what this is all about. It's about each individual.
In ADAPT we call them liberations. We celebrate everyone getting out and we hope that those of you that have just joined us around the country, you know, can really take to heart what is said and work to get other people out in your community because the best thing that can come out of both while we're here in Tennessee and what we can do in your local community is to get one individual out. If all 150 people, 200 people that may be listening gets one person out, you will make a significant difference in the lives of 200 people, and that would be well worth everything that brought us all here together.
So I'm going to turn it back to Cassie. And thank you. And free our people!
[Applause]
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CASSIE >> we have Diane has agreed to sing a song for us that many of us treasure about freedom and some of the history of what happens to disabled people who aren’t free. And then we have some speakers who have to leave. We might hold some speakers if the panel is not back. We also have a panel of distinguished people.
Diane Coleman.
DIANE COLEMAN >>
I'm going to sing a song that was written by two Tennesseans. One of them Dwight Lyles was a song writer long ago and he's since been a minister. He would be here today. He's excited that his song is part of the day, but he had a heart issue come up this week and his doctor said no, no, no. The other co-author of this song, the one who did the lyrics is Wynelle Carson. She was a member of ADAPT of TN who died almost 10 years ago now waiting for Tennessee to have a personal assistance program that would have given her the independence she so longed for.
So I would like to dedicate this to Wynelle.
I will have to do this without having an accompanists, because that's what Dwight would have done. I would like you to help me out especially on the chorus. It's okay to sing along because that makes it sound better than one person sings it.
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[FREE OUR PEOPLE By Wynelle Carson and Dwight Liles © 1993 used with permission]
Something unforeseen is going on.
We the so-called weak are getting strong.
And crying out for what we know is right.
Accused because we have the guts to fight.
Through years of neglect
In dark and hidden rooms,
Our siblings of the past
Were sealed away in tombs.
Free our brothers.
Free our sisters, too.
Free our people now.
It's up to all of you.
Free our parents.
Free our children, too.
Free our people now.
It's what you've got to do.
Prisoners of profit and of greed,
Rationed of their basic human needs.
Overlooked because of fear and shame.
Tossed back and forth in ignorance and blame.
The industry of care
Has empty graves to fill.
How many gifted people
Are caged against their will?
Free our brothers.
Free our sisters, too.
Free our people now.
It's up to all of you.
Free our parents.
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 our sisters, too.
Free our people now.
It's what you've got to do.
Free our parents.
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've got to do.
Free our parents.
Free our children, too.
Free our people now.
It's up to all of you.
[Applause]
- Return to the Index of Speakers.
CASSIE >> before we introduce the panel, I would have Johnny Crescendo also do a song, but first we'll have Floyd testify because Floyd is from Tennessee and you don't want to miss him. So Floyd could you come up? And Johnny will then share a song. Oh, wait, Johnny Crescendo is going to perform for us, and Floyd Stewart is going to testify from Tennessee before that happens because he has to leave shortly.
FLOYD STEWART JR, CO >>
Thanks. First of all, I would like to thank everybody for this opportunity, what we're doing here is so important. It saves the lives of individuals with disabilities and like I said, my name is Floyd Stewart. My disabling condition, quadriplegic, is a result of an automobile accident that broke my neck between the fifth and sixth cervical vertebrae January 15th, 1984.
After my accident and a year in rehab I enrolled in middle Tennessee state university located in Murfreesboro, Tennessee, as a freshman. Because there were no attending care programs available, I could not keep up the rigorous routine of student life or preserve my health. I was forced -- I'm sorry. I was forced to attend school while living in a nursing home. I left the nursing home each day and attended classes and returned nightly to study. Someone once spoke to me of maintaining my dignity while there, which brought to mind something have read in an ADAPT publication “it's hard to have dignity when you're continually bombarded with the stench of someone else's body waste 24/7.”
I graduated December 16th, 1989. I returned to Nashville and spent two additional years in a different nursing home. I joined a program called VISTA, the acronym for the Volunteers In Service to America, and it was under what we used to know as the Peace Corps. I was assigned to people first of Tennessee an advocacy organization dedicated to the fight for equal rights of individuals with mental retardation as a disabling condition.
I began working full time September 2nd of 1992 at the center for independent living where I'm still employed today. Working my way out of an institution, an institution of detention, was the hardest thing I have ever had to do short of working my way back from a spinal cord injury.
Unfortunately there were no real alternatives to the nursing home placement, even though there are much cheaper solutions and numerous other cost-effective alternatives. In my humble opinion, every taxpayer in America should question this practice.
Data has shown that by age 65, one in every four Americans will have some level of disability. Catastrophic 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 could be catapulted into a nursing home in a just a few hours of this event.
Today I am a happy grandfather of three. I own my own fully accessible home and a lift-equipped van. I have a live-in personal assistant I employ part time. I use personal assistance to assist me in my activities of daily living, like housework, house keeping and various other needs. To maintain my freedom I work two jobs. I have been blessed to work for the Center for Independent Living of Middle Tennessee for the last 14 years. We are dedicated to the vision of independence and equality for every citizen. In 2003 I founded and am now functioning as the Executive Director of a non-profit organization which builds affordable accessible houses for individuals that are 80% of median income and individuals with disabilities.
I'm proud to say that I am a working taxpayer and a positive contributor to society as well as an employee as opposed to being incarcerated for the simple crime of acquiring a disability.
Now, let me tell you a little bit about my first month in a nursing home. Because of my condition, I have an indwelling catheter. Now, it's been shown that when you live in a nursing home, 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. She blew up the bulb in my bladder; it was not in my bladder. It was in my urethra and 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 started to lose blood, at just a phenomenal rate. They took me to the hospital and my blood pressure had dropped to 50 over 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 it was time for the catheter to be changed she couldn't deflate the bulb. So her solution to the problem was just pull it out. And it broke the bulb off in my bladder. Once again I had to be rushed to the hospital, bleeding, almost dead.
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 something. When you live in a nursing home every time somebody comes in with a cold or 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 back to the hospital. So 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 and not just in this room look at alternative programs because like I said, it's a taxpayer issue. When I lived in a nursing home, it cost taxpayers 50 to $65,000 a year to keep me there. Now that I'm out, I get $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 impress upon them that individuals with disabilities, they have an American dream just like everybody else.
Thank you.
- Return to the Index of Speakers.
CASSIE >> Thank you.
[Applause]
JOHNNY CRESCENDO >> Some people in the room might know this one. Not the first time you heard it. Won't be the last.
[TEAR DOWN THE WALLS]
WO- WO A OH
This songs for all the people who’ve died in a nursing home
WO- OH A OH
This songs for all the people who are gonna die in a nursing home
Tear down the walls, tear down the walls
Tear down the walls of the nursing home
This songs for the right to choose how we live
This songs for the right to decide where we live
Tear down the walls tear down the walls
Tear down the walls of the nursing home
Take off your white coat
Strip yourself and bow
Can’t you see the justice coming at you now
It’s coming down your road
Its coming down your street
It’s coming for your kids
They’re gonna hate you if you don’t act now
This songs for the right to choose your partner in sex
This songs for the right to decide what you’re gonna do next
Tear down the walls tear down the walls
Tear down the walls of the nursing home
This songs for all the people who’ve fought and died against the beast
This song’s for our strength and pride which will increase
Tear down the walls tear down the walls
Tear down the walls of the nursing home
Stop talking compromise there’s a war going on
Stop acting so surprised you know what you’ve done
Stop feeling guilty you gotta act upon
What you know is justice
What you know is right
If you really agree with us
How do you sleep at night ?
Tear down the walls for the drugs and damage
Tear down the walls for the abuse and cabbage
Tear down the walls for our children’s lives
Tear down the walls for the right to decide
What goes on in our lives
Tear down the walls
Tear down the walls
Tear down the walls
Of the nursing home
whoa, whoa, whoa.
whoa, whoa, whoa.
free our people!
free our people!
free our people!
free our people!
free our people!
free our people!
free our people!
free our people!
- Return to the Index of Speakers.
CASSIE >> 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 they're going to do with the information, the stories of our life being locked up in those nursing homes and we're going to start with John Lancaster from NCIL.
JOHN LANCASTER >> Thanks Cassie. As Cassie said, I'm John Lancaster with the National Council on Independent Living and we're here because we totally support ADAPT and what you're about in terms of freeing people, getting them out.
AUDIENCE >> yeah!
[Applause]
- Return to the Index of Speakers.
JOHN >> …in the community and living productively and on their own with their friends and families. So that's -- 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 effectuate some much more positive policies 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 want to applaud our annual conference coming up in May. May 22nd through the 25th. We'd love to have you-all attend. The whole focus of the conference this year is ending the institution bias. Come to Washington and make your voices heard.
ANDY IMPARATO >> I'm the President of the American Association of People with Disabilities based in Washington with John just a couple blocks from NCIL. And I'm here today first as a person with a psychiatric disability. I have bipolar manic depression and one of the things we heard as a strong theme, some we heard from so far today is that there's a lot of forced medication going on in nursing homes and other institutions. I'd say about at least 80% of the witnesses we've heard from talked about that. And that's something that I think we need to frame as a human rights violation that has liability attached to it. And that's something we need to work on in Washington. So I appreciate you-all raising that issue strongly and clearly.
My official role today is that as a member of the Ticket to Work and Advisory Panel, which is a bipartisan panel, is looking at people with disabilities and money, Medicare, supplemental income and social security disability. We've created a committee. The role is to elevate beneficiaries. We hear a lot from professionals that have a financial stake in keeping the institutions the way they are. So this event is helping -- this transcript will be shared with all the members of the panel and staff.
We also have a transformation committee. And the role of that committee, which I'm sharing is to come up with a new way to provide supports for people who do not require them to be in institutions, who do not require them to be in poverty, that do not require them to be outside the workforce. We're working with ADAPT to get systems changed in Washington.
And I just have to say that the strong message that I've heard today so far is that there is an ongoing human rights violation going on all over this country. And a lot of people say, well, what's wrong with nursing homes. All we need is nursing home reform. That's not true. And I what I would answer to the people that argue that, is that tell people who have had third degree burns, that all we need is nursing home reform. Tell people who have been raped in institutions is all we need is nursing home reform. Tell people who have psychology abuse and neglect, people in prison without committing crime. Tell them all we need is a little reform. Thank you.
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GWEN GILLENWATER >> I'm Gwen Gillenwater. I'm the Senior Policy Director at the American Association of People with Disabilities. I was in independent living as a director of a center for independent living and then on the staff of NCIL 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. And this directly does impact -- as most of you probably know, about 50% of the cost of long-term care comes from Medicaid. I will tell you, picking up on something Bob mentioned earlier, I know we get discouraged and feel like we're up against insurmountable barriers at time, I got a chart from the Medicaid Commission -- they met earlier this week in Atlanta and we're focusing on long-term care. If you look at this chart, I know it's hard for you to see back there, but home and community based services began in 1985. About that time it was 7% of total long-term care. In 2004, which is 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 twenties 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 and I will tell you I will do everything in my power on this Commission and in the work with ADAPT to see that we do have choices, that there are other things than institutions for folks like us.
I appreciate being here. I think 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 alternatives. I hope they will lead the way for other organizations to follow. Thank you
[Applause]
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DR MARGARET GIANNINI >> Good afternoon. I'm Dr. Margaret Giannini. I am a physician and Director of the Office for Disabilities for President Bush and Secretary Leavitt. This was created because of the President’s Order, the Freedom Initiative that I think you're familiar with that covers many domains we're all interested in and they have to have reform, employment, education, assistive technology, homeownership, transportation, and 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 Gwen already told you are a result of us happening at HHS. That Commission was created by Secretary Leavitt at Health and Human Services. We have an administrator of CMS now who is definitely very supportive of all the needs for persons with disabilities, Mark McClellan, I think you know his name as well.
[Laughter].
DR GIANNINI >> I think many of you have probably been to see him along with Gwen. At any rate, what I would like to say to you is that there are a