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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.)
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
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.
MARCH 19, 2005
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.
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.
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.
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.
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.
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
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.
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
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.
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.
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!
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.
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.
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.
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.
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!
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.
CASSIE >> Thank you.
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.
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.
ED >> Thank you! I can buy what I want. Do what I want when I want and this is what we're fighting for.
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
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.
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.
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 --
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.
CASSIE >> Thank you so much.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
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.
>> ( 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.
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!
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.
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.
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.
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.
SPITFIRE >> Never surrender. Trouble. Make more.
SPITFIRE >> Let’s burn down the nursing homes.
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.
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.
I was strong.
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.
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?
It was a great time for me.
What would you say those folks in Tennessee who are in nursing homes?
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.
>> 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?
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?
And you went to and from work among other things?
Did you get a master's degree also?
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.
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.
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!
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 >> 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.
[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.
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.
CASSIE >> Thank you.
[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!
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!
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.
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
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.
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 lot of things that are going on, and there are many things that we have initiated that have not broadened like we want them to be but at least they've been initiated. And I think you're familiar with those. Cash and Counseling, Independence Plus, Systems Change Grants, the Aging and Disability Resource Centers, the Respite Care for adults and children, and many others I won't take the time to explain now.
But I'm here to listen to all that you have to say. And what I'm impressed with, also with the drug overloads that Andy mentioned, but I am so impressed with the abuse and the brutality. I just don't understand that. I mean, that's a human factor. I mean, whether you're disabled or non-disabled, why is that going on? And I can tell you that I won't leave it there. I'm going to try to find out why. Why is all this going on?
And I will carry your messages back. I will tell you that I will do everything I can to impact change and make a difference, but we must remain patient and vigilant. Together I think we can overcome. Thank you.
JIM WARD >> Hello. I'm Jim Ward, President of ADA Watch and National Coalition for Disability Rights. I'm grateful to have this opportunity both as a person with a disability and to represent my board members and my organization. What has been most moving, I think, today for me, even though many of the stories I have heard before, is the magnitude of the abuse and also the clear connection.
It's not a mystery to the folks speaking today between who pays the bills and how people are treated. Who does the hiring? Who does the firing? What we have the power to hire and fire our own care takers, we will not be abused an mistreated. We will not stand for that. So it's really a simple explanation.
JIM >> And that is where does the money go? Does it go to nursing home institutions. Does it go to the huge lobbyists that control Washington? Or to the people? It's simple as that.
It was 40 years ago today that Robert Kennedy went to Willowbrook and declared it was a snake pit unfit for animals to live in. It was more than 30 years today -- well, not today, but Geraldo Rivera televised Willowbrook and that led to the movement for protection and advocacy laws. It was 16 years ago when the ADA was passed with the vision of equality and justice for all. It was more than six years ago or seven years ago that Olmstead and the integration mandate was ruled by the Supreme Court.
This has been a long battle, a long struggle and continues to be. For something is basic and simple as where do we live, where do we call home? And is that home a safe haven free from abuse and neglect? Is it a place where we as individuals can choose what we want to eat and when we're going to bathe and when we're going to stay home or go out? Basic fundamental freedoms in life. It is not complicated. It's about where the money goes.
We're happy as an organization to partner with ADAPT who is part of our coalition to end the institution bias in America. To end the control of the money in America by the nursing home industry, by the institutions and give it back to the people and truly be an America with freedom and justice for all.
CAROL NOVAK >> Good afternoon. I'm Carol Novak and I'm here representing the National Council on Disability. I also have a son 30 years old next month who has severe cerebral palsy and living in his own wheelchair accessible villa and that has become a passion of mine, making affordable accessible housing available to people across the country.
The recent reports -- I saw there still were – after lunch there were still a couple of copies of NCD's most recent reports. We have a very strong commitment at the National Council on Disability to empowering people and enabling people to have the supports they need to live the lives they choose and our most recent report is called long-term services and supports.
It's not about care. It's about services and supports and combination because if all you have is personal assistance you don't have any place to live. You still don't have a life in the community. I think that everybody has started to recognize this in this disability arena and I'm hearing it more in the policy arena as well. We have another report that I consider to be the most readable government report ever written called Livable Communities for adults with disabilities and it's a wonderful report that looks at what communities are doing around the country to provide the supports, to enable their citizens with disabilities of any age, to live in the community and continue to participate to give, to share, and to relate to others in their family and the community.
Another issue that I think we all need to – I think -- I've already talked to Mark Johnson a little this morning about this, but not only do we need to make sure that the money is not tied to this institutional bias anymore, but we also need to think about the direct care workforce. My son has eligibility for 24-hour personal assistant services. But trying to find the right people to work for what is being paid has become a real concern of mine. And I really think we need to work hard at not only removing the institutional bias but creating the profession of personal care assistants.
CASSIE >> Thank you
CASSIE >> back to the panel. Sparky, Michele McCandless, Shelly Perrin.
SAMUEL MITCHELL, GA >> Good evening. I'm here testifying today because the shame of the institutional bias and the shame of illegal activities in America concerning nursing homes must be laid out to the public. I was an ordained minister and also a truck driver who became disabled. I had a ministry to nursing homes. I went in nursing homes and preached. I thought I knew a little bit about nursing homes. After becoming disabled, a year later I suffered a stroke. That's when I entered a nursing home. And I found out just how much I didn't know about nursing homes.
The way that I entered the nursing home wasn't legal in the first place. I suffered a stroke. I was taken to one of the hospitals in Atlanta. I'm not going to name it. And I signed a power of attorney for my sons to speak for me because at the time I could not speak. I was there for approximately a week and a half. I was told by the social services director that I was being sent to a rehab center a little below Macon, Georgia, which is maybe an hour and a half from Atlanta.
Well I was sent to Midway Nursing Home, 340 miles down the road.
Being a truck driver, I knew when I hit I-16 that I wasn't going anywhere near Macon. I didn't sign to go into the nursing home. I didn't give my permission. It was two and a half weeks before my kids could find out where I was.
I couldn't call them because I had no money and I was not allowed to make long-distance calls on the nursing facility's phone. I saw abuse. I saw patients neglected. I saw residents treated in undignified ways. And I suffered the same thing it took three months for my children to get my transferred back to a nursing home near the Atlanta area.
This nursing home was better only because it was closer to home. This nursing home was on the news three times in 2003 for the deaths of three different residents which was under suspicion. And there are three suits that are still pending against that nursing home.
Nursing homes -- it's sort of funny because I remember crying and beating on the door of the social services department in the nursing home that I was in, so that I could get therapy. Because routinely, the way nursing homes get out of giving you therapy because they have to pay for it is to talk to the therapist and tell him we're not approving it, and so the therapist tells you, “well, you've gone as far as you can go.”
Of course, they told me I could never get use of my left arm again. I can swing it up that high. (Over his head)
AUDIENCE >> yea!
SAMUEL >> I learned to walk just about on my own simply grabbing my wheelchair and having two or three nurses and four or five CNAs running down the hall behind me saying, “Mr. Mitchell, Mr. Mitchell, you can't do that, you can't do that.”
SAMUEL >> My answer to them was “I can do it. I am doing it. I'm going to continue to do it.”
SAMUEL >> The prevailing atmosphere in nursing homes is that we now own you. We own you and everything about you. You become a non-person. Your rights, human rights and civil rights are routinely violated. And the nursing home I was in, there was a practice to come into the room and go through every drawer, every belonging you had. And anything in there they considered, well, you shouldn't have, they took. Dignity, there was no dignity. I can remember sitting using the rest room and having a CNA come in the door and start washing something out and I told her “you can't be in here.” She said, “I'm going to only be a minute, don't worry, Mr. Mitchell.” I would say “get out.” “I'm only going to be here a minute.” “Get out!” I don't know anybody that wants prying eyes on them while they're sitting on the throne in all their glory.
SAMUEL >> The food, oh, God, we had two pieces of meat and they called it be so many different names. It was a chicken patty and a beef patty. Sounded good when you looked at the menu until you got in the room, dining room and found out it was that same old piece of meat.
Nursing homes are degrading. They're degrading to the residents. To put it the way that the social worker put it to me when I was fighting with her about my therapy and she was telling me why I couldn't get therapy, she said, “Mr. Mitchell, I'm going to be frank with you. This is just between me and you. This is a place where people come to die. They just come here to wait and die.” I didn't come there to wait and die.
AUDIENCE >> Yeah, that's right!
SAMUEL >> And that's the way they treat you. You're just there waiting to die. So you don't get a lot of consideration. They don't consider your civil rights. They don't consider your human rights simply because you're there waiting to die.
The day I got out of the nursing home and it was really funny because I applied for a waiver, and the nursing home answered the medical inquiries from the waiver with ‘not medically qualified to be in a nursing home.’ And I was wondering, “what have I been doing in here for two years? How did I get in here if I wasn't medically qualified to be in here and why have you been fighting to keep me from going anywhere for two years?”
Of course, the waiver found out six months after that because I moved out on my own anyway, that the nursing home had -- and the way they put it in the letter, we found we have found erroneous information from the nursing home. And I'll name that nursing home. Sun Bridge of Riverdale. You can check the records. To put people in nursing homes in the first place is not right.
We take our most dangerous, horrific humans and we separate them from society. We place them in isolation and we keep them there. What crimes have the disabled committed that they should be done the same way? That they should receive this type of treatment? Because they are separated. They are isolated.
You know, when I was at Sunbridge, I made it my business to get the GA state rules governing nursing homes. I also made it my business to get the GA state rights of residents of nursing homes. After about a month I knew more about it than they did. So I became a routine thorn in their flesh. Nursing homes are not fit. Maybe they were meant to be and maybe the idea behind them was meant to be something good, but what they are is not what they were meant to be. And until we can come up with something better, people do not need to be exposed to that type of treatment.
If you ask any resident in a nursing home – and you've heard it said over and over again – “I felt like a prisoner.” Everybody is not lying. A prisoner is exactly what you're treated like. The state gives you the right to affiliate with whom you wish to inside or outside of the facility. That's the right given you by the state. But if someone calls to speak to you, they are going to be given the third degree by whoever answers the phone. And you're going to be given the third degree when you leave with that person just going to get a hamburger. You're going to have to tell them where you're going, the address of the place you're going, the phone number for the place you're going, when you're going to get back.
Wait a minute! The word is resident, not prisoner.
SAMUEL >> Free our people! Free our people! It's time.
AUDIENCE >> Free our people! Free our people! Free our people!
SAMUEL >> It's time to free our people. I'm going to leave it at that. It's time to free our people.
[Applause] Yes. Now!
CASSIE >> Sparky, Michele, Shelly, and then Rick Viatar and Lucy Crouch Come on Sparky from Texas.
>> I'm coming!
I was in a state school from 1970 to 1981. If you didn’t feel like eating they would make you eat by forcing you to eat. And if you didn’t do what they told you they would either tie you down in bed or they would hit you over your head with their keys. In 1981 I left to a nursing home and you do what they told or they would tie you in bed also. I got out in 1993 and now I live in my own duplex.
Thank you. I have a terrible time with spelling a story.
I, before I ... before I got out of the State School, nobody told my mom and dad about -- or me about attendant care... It was 1990 when me and my dad just happened to find out about attendant care. And now I live on my own. All I've got to say about that is free our people!
CASSIE >> Sparky, once you get down, Michele McCandless from Philadelphia, Pennsylvania, Rick Viatar, Lucy Crouch and a gentleman from "People First" from Tennessee could come and tell Tad's story after those guys get here.
MICHELLE McCANDLESS, PA >> Hello, my name is Michele McCandless. I got put in Willowcrest Nursing Home in December 2004. I had to get major surgery in my legs after a vehicle hit me and drug me about two blocks. They told me that this place was supposed to be a rehab or what they use now is a step-down unit that receives rehab moneys, but in my eyes, it is still known as a nursing home because it receives -- it is a nursing home. It receives rehab moneys, and what they're telling people is it's rehab. It doesn't give rehab work.
It still gives the same type of food, which I call dog food. It's processed food that everybody gets. All they do is pop it in a microwave. It's not real food.
They usually got mad at me because I figured out a way to get in my chair. Once I got a chair and got down to the cafeteria. They would get mad at me because I would sneak into other people's rooms and tell them they had rights…
AUDIENCE >> All right, now!
MICHELLE >> and to refer them to places like Liberty. And this particular place called Willowcrest where I stayed, they were very angry at me because I knew my rights. I wouldn't sign any papers. I told them that I had a right here. It's called civil rights just like you're a person, I'm a person, too. If I sign any documents that leaves my rights.
They got angry at me because I started telling people they also had rights. They have a right to turn down things. They didn't like the fact that I started telling people that I have rights. They called upon Liberty or ADAPT and asked them to come in and be their advocates.
They wanted me to take pills, sign behavior papers and sign other documents. “Sign these papers, we'll give you help.” And I wouldn't sign papers. They said that there were meetings, that I didn't have to attend and everything would be okay. When I got to looking at these documents, I found out that these documents said I was behaving badly.
When the nurses -- when the nurses would -- when my friends would leave, I found out that the nurses got back at me by giving me cold showers, putting me in bed early, because the only way I could get around is if I was in my chair. Once they put me in bed, I was stuck. I couldn't get around. That was my punishment.
I wouldn't eat anything all day unless they brought me something. I lost about 100 pounds. They washed my hair with this do-not-wet shampoo which they kept in my hair. My hair -- I used to have long blond beautiful hair. Now, now you can see it's pretty cut. It was real short at one time. Now it's slowly growing back. It was real damaged.
I had to go back and forth to the hospital. When I got to -- I think it was graduate hospital, the nurse said she had to cut it because it was sticking -- because they had left -- they had washed it but left all the rubber bands in my hair. So they had to cut it real short and I was crying because I used to give other people that didn't have hair, I used to cut my hair down and give them some of my hair because they weren't able to grow it at all. I'm so used to doing and helping other people that this time I needed help and it's hard for me to ask.
CASSIE >> It's all right, baby! Go ahead! It's all right, honey.
MICHELLE >> But in a place like that, it’s time please don't let people keep people in there. It's too hard being… I used to see a lady in a Jerry chair. They told me that this is a good place for them to be. They said she had only been in there for two years. These people are not homes for these people. They're not supposed to be death camps.
I don't know how else to keep them, but please, when you take them out of these beds, do not let more people be in these death camps.
They should be closed down, not refilled. And with these -- what they're calling step-down units and rehab, rehab, it's too much. They're using rehab moneys to refill these beds. Don't allow them do it. If you really want to read what I put down here – and I'm sorry with my other disability that I've acquired, I could not read this.
CASSIE >> here you go, Michelle. You were wonderful.
CASSIE >> Shelly from Rochester, New York. And also, people who are Color Leaders, there's a meeting -- wait, I forget the name of the room. It's a Color meeting at 2:00.
DORRIE BUDD READS FOR SHELLY >> in an institution at age 7, where I remained until age 13. While in the institution, I -- many residents being emotionally and physically abused. One incident I personally suffered was that a staff member hit me in the head with new shoes that I had recently received from my mother. My shoes kept coming off. The staff hit me on the head after they had picked up my shoes from the floor.
My time spent there was just like being in jail. My own parents had to call the institution to get permission to visit me. My mother became fed up and would show up unexpectedly. My mother would come up on weekdays and learn I wasn't getting physical therapy that I was supposed to receive. One time staff put me in a wheelchair that didn't belong to me. The chair was soaked with urine and got me all wet. They had the nerve to accuse me of wetting myself.
When I got older, I was moved to another ward and became very sick. They quarantined me in a single room and did not even notify my parents of my illness. I thought my parents forget about me when they didn't come to see me during my illness. For a time I hated my mother because I didn't understand that they were forcing -- forced to put me there. [Aside from reader: The state forced the parents to put Shelly in this institution.]
When I was 14, my mom had meeting with administrators and was able to involuntarily remove me from the facility after she was given a very hard time. My mother, after the meeting, took me against facility opposition.
I got all new clothes and was able to attend public high school for the first time in my life. While in public school I received all As and B's and grew socially. It was great that I was able to make friends and attend school parties.
I became involved in disability advocacy in 1993 when I received service coordination from the center for disability rights. I learned how to organize meetings and demonstrations for disability equality causes.
DORRIE >> I am especially grateful to -- who are you grateful to? Wait, she can't get it out.
SHELLY >> Bruce Darling, the -- Director for changing my life, and Christopher Hildebrand, Director of Advocacy for realizing my capabilities to become a disability advocate on a local and national level. Free Our People!
CASSIE >> Lucy Couch, Rick Viatar, telling [inaudible] stories.
RICK VIATAR, CO >> Hi, may name is Rick Viatar, and I'm from Louisiana. And we know what happened to people in nursing homes in Louisiana. They let the flood gates open and they’re there. They drown half of them. That’s exactly what happened. The minute the dam -- the walls broke, all the nursing home personnel people just left people in their bed. There was 3 or 400 of them that drowned, and they didn't have to. And while I was in the nursing home in Louisiana, I was very active – I was activist for other older people, because I was a young guy.
I was 35 years old when I went to the nursing home, and so all the older people were screaming and hollering. They would put me in the bathroom and close the door and bedroom door so nobody would hear them. I told people.
And after I shut one nursing home down called Azalea Nursing Home in New Iberia Louisiana, the next one couldn't do enough. They would bring food to my room. I had cable TV and telephone. They didn't want that to be done. But the thing is, the Governor -- not Governor, the Senator owned part of the facility. So then I was -- as I was going through physical therapy, I didn't want to end up going back to the nursing home. So there was a lady in New Orleans that told me about this home community based services in Denver. I said, wait, that sounds pretty good. So that's how I ended up in Denver and I'm very thankful to ADAPT for giving me a political voice.
AUDIENCE >> yea!
RICK >> That’s not as long winded as everybody else. I'm just not a man of many words.
CASSIE >> Lucy.
LUCY CROUCH, KS >> I'm Lucy Crouch. I was living at Parson’s State Hospital and Training Center. They abused us at the state hospital. They stole our cigarettes and stoled our pop, and stoled our candy, and they stoled our med box out of the -- out of the med room and they abused the clients. They left the client in the bathtub for 30 minutes and they go down the hallway and take care of another client and then come back. And this client died in the bathtub. And they had staff go down to the hallway and have sex with the clients. And a staff would go down the hallway and take the clients' clothes and their radios and stuff like that and try to throw it in the trash. And abuse the clients and take the clients, drag them down the hallway and beat the SHIT out of them. Excuse my language, but that's what they did to the clients out there.
And they did a lot of other crimes like taking staff and the clients in the hallways and smack them around and stuff. I lived out there in '76 and '95 in a state hospital institutions.
I've been in institutions since I was 13. I've been there in Norton, Winfield, Topeka, Larned, Osawatimie and group homes and foster homes and all these other state institutions. So it's not right what they're doing in the community and I don't want it done.
Now I'm living in a community in Parsons and I work at SKILS and I’m a janitor and I've been there going on five years in September the 17th and I've been my own guardian for years.
LUCY >> Free Our People! Thanks a lot.
CASSIE >> Arthur from Tennessee? Oh, let me move out of the way.
CASSIE >> I’m sorry.
GATHA >> Don't feel bad, everybody... but I go by "G-man", and that's "G-man". That's G for good man. I know there's not many in this nation, but I'm one
GATHA >> I'm going to read a letter written by Todd Gatewood of Self-Advocates Becoming Empowered. He's a board member. [He reads;] Hello my name is Todd Gatewood. I am from Ohio. I am an SABE board member. I wish I could be there to deliver this talk to you in person. To give you a brief history of myself (I'm swallowing this gum. there we go.)
GATHA continues reading for Todd >> I've lived in them facilities for 17 years. It wasn't pleasant being cooped up two in a room, having to use the bathroom because there wasn't enough staff to help people. (And by the way, Todd Gatewood, he's a person in a wheelchair. He's a quadriplegic; I guess that’s the term for it. And he uses a voice box, a speaking box.) OK, having to wait use a bathroom because there wasn't enough staff to help you.
Dinner time seemed to be the worst time. Being herded in like cattle into a dining room and having to wait to be fed. If you needed to be fed like he did. Then after you ate you would be still, you will still be hungry, but the staff didn't have to give you more food because they have to get back to the floor to help people who were in their rooms. No one should have to live like this (-- hold on, hold on he needs to raise his font – I think he has a eight or nine font and my eyesight is bad.)
This should be their right to live in the community. We need to get our brothers and sisters out of those places and into the community.
GATHA continues reading >> We need to tell the policy makers these places are unacceptable for people to live, or better yet, make them leave their nice home and make them instead -- hold on, hold on -- make them leave their nice homes and make them live a couple of days in a nursing home so they can see how it is for themselves. I thank you.
AUDIENCE >> amen!
CASSIE >> Todd Gatewood from Ohio.
GATHA >> Next this is a little something I wrote -- let me take
off this hat. It's hot. I wrote this for the MiCASSA -- do y'all no MiCASSA means? The Medicaid Community Attendant Services and Supports Act. A denial of these services, I am hopeful you will look at this as discrimination. Denial of these services. This is a bipartisan act Medicaid reform bill to end institutionalization based on long-term services and give people of disabilities and older Americans a real -- what did I say?
AUDIENCE >> real!
GATHA >> I didn't hear you. What did I say?
AUDIENCE >> A real!
GATHA >> A real choice to live and receive services and supports in their community. You-all can find this www.adapt.org/MiCASSA/kickoff.HTML On May the 3rd of 2000 was the initial kickoff day led by Senator Tom Harkin, Democrat, Iowa, and Senator Arlen Specter, Republican, Pennsylvania. Free Our People! I would like you -- I would further like to personalize this statement and give it a little more meaning. Free my people! Yes, my people! I would very well be locked up somewhere in this democratic nation that we call America, land of the free and home of the brave. I did spend time in an institution. The name of it was a residential care facility. There were -- there was an institutionalization of high functioning disabled and elderly people, but I am free now. I'm free! I left that place and -- what else? Okay... for a lot of Americans.
GATHA >> See, I'm having a hard time reading, I need a podium. Put my hat back on? Y'all like the hat? Okay. I'll put the hat back on. [Laughs] I like the hat. I have to accommodate. Yeah. All right. Okay.
AUDIENCE >> free our people!
GATHA >> Free ‘em. A lot of Americans with disabilities, the previous statement, land of the free, home of the brave I mean it’s irrelevant. Why? I'll tell you why. They're not free. They don't know what real freedom is. I'm sure they have fantasized about it and have dreamed about what they think it would be like. I am positive they have seen their caregivers working harder when they try to get off work and retire to the humble abode or they may listen to songs on the radio that speak of their idea they have of freedom. For instance, like "Georgia on my Mind" by the late and great Ray Charles. When he describes what he loves about Georgia, a place that is dear to his soul, he sings about a sweet old soul that keeps Georgia on his mind.
Then I imagine they'll say to themselves that there isn't a sweet song anywhere written about being locked up in a God forsaken nursing home. Wait one minute, it’s not God who forsook them.
GATHA >> …to live the rest of their days not getting the care that they need or want. It is their family and friends who forsake them. The very people who they -- the very people will -- these very people will persuade them to turn over all their assets, virtually giving away their way of livelihood to the very ones that they painstakingly have taken care of through their childhood.
They will put these people in a nursing home that smells like urine and they hear people all through the night crying for freedom, crying to get out, and other reasons you cannot even comprehend. But not yet. We are not dead yet.
GATHA >> This is the cry of people in need. There are people of disabilities and they have survived the wilds of this earth. And this is how we treat them, with no respect. We institutionalize them. Some of you may be knocking on the door yourself. You may be on your way to an institution.
AUDIENCE >> all right!
GATHA >> But, by George, if it's up to me, all of these institutions would be closed and you won't have to worry about that.
AUDIENCE >> yea! [Applause]
GATHA >> One thing I would like to say in closing, my prayer for a people of disability. It’s a song written by Curt Franklin and it goes a little something like this.
I'll pray for you if you'll pray for me.
I love you.
I need you to survive.
I won't hurt you with words from my mouth.
I love you.
I need you to survive.
It is his will that every need be supplied.
You are important to me.
I need you to survive.
You are important to me.
I need you to survive.
And there is spiritually that goes like this.
Oh, freedom over me,
Before I be a slave,
I be buried in my grave.
And go home to my Lord
And be free!
That's what we want. We want freedom!
[Applause, Chanting FREE OUR PEOPLE]
CASSIE >> Hey MR G here you go. Cathy, Lorri Maubry, Dorothy Ruffin, Buddy Homiller.
CATHY GARBER, UT >> I don't want a lot of feedback in the mike, so if there is, tell me please. My name is Cathy Garber and I've lived in Salt Lake City for the past ten years. So it's very interesting that some federal officials are on the -- some committees appointed by Mike Leavitt. So today's theme of the testimonies is real voices, real people, real change, and I hope that this is the next step to not just really empty promises, but real action for people with disabilities who have successfully broken free of the institutionalization that they've suffered for many, many years.
When I -- I've been back there all morning listening to horrific stories of individuals who have been in the nursing home for years, and so I was lucky in that I was only subjected to living in an institution for a period of six weeks. My primary diagnosis and disability is cerebral palsy and I as a result of that I've had to undergo numerous surgeries to make me, quote, normal, whatever normal means.
And so when I was 21 I had to undergo a total hip replacement and I wasn't well enough to go home to take care of myself, but I was too well to stay in the hospital. And so being 21 and naive and what I've come to realize now is dumb, I agreed to go into a nursing home, a skilled nursing facility, to receive therapy in order to be able to regain my independence, in order to continue my education. At the time I was a junior in college working on my first bachelor's degree in rehabilitation services from a university in Kansas. And the only way I'd still probably be in the nursing home today, but the only way I was able to get out was I was able to befriend a nurse that worked the night shift and I was the youngest person in the nursing home at that time and she agreed to quit her job and allowed me to move into her house so I could continue my rehabilitation. And with her assistance I was able to become more independent.
Within about a month and I didn't need 24-hour care any longer and I was able to continue my education. And from that point on I've been able -- since leaving the nursing home in 1997, I've been able to complete two bachelor's degrees. No, I'm not a glutton for punishment. It just took me a while to figure out what I wanted to do once I grew up. And I've recently been accepted to graduate school with a 3.5 GPA.
CATHY >> And for the individuals in the audience, please don't throw stones, but we need social workers that really get it and understand what it means to be institutionalized. So I'm going to complete my bachelor's degree -- I mean, graduate degree and eventually receive my MSW and LCSW and work on public policy change as it relates to people with disabilities.
CATHY >> I know time is getting short and many people still need to testify, but I was really excited to see that there are individuals from the Ticket To Work program. And I'm sorry I took notes, but at this point I can't look down and catch you by your first name, but this is all a continuum because I have the education and the drive to succeed, we have to have the services in the community in order to do that.
And I'm not able to go to work full time and maintain my independence, and be able to be employed and get the services I need because I'm immediately knocked off Medicaid. And I'm not going into social work to make big bucks, obviously.
So -- and another thought in closing is, well, that I recently became engaged to be married…
CATHY >> But we're probably going to end up having the longest engagement in history. And I think he's absolutely insane because the minute he marries me I lose all of my benefits and it becomes his sole responsibility to meet my needs financially unless I become independently wealthy and able to make a lot of money as a social worker. So there needs to be vast changes when it comes to human services for people with disabilities. And I hope the panelists realize that they have the privilege of spending the full day with us listening to our stories.
AUDIENCE >> yea!
CATHY >> And you're walking among heroes in this room
CATHY >> And thank you so much for your willingness coming to listen to us. And I hope it's not falling on deaf ears and I hope that by the time I'm 85 that the next generation doesn't have to struggle with the same things that we've all struggled with in this room. And it becomes a standard and an expectation, not an unfulfilled wish and dream. Thank you very much for your time. Hopefully I won't fall off the ramp now.
CASSIE >> Angela Miller and Gwen.
DOROTHY RUFFIN, PA >> Good afternoon. My name is Dorothy Ruffin. I'm from Philadelphia. I survived a nursing home. That's how I got here, by being a survivor. And I would like to say we as disabled individuals need to come up with a different vocabulary.
The vocabulary we use now is for prisoners. I don't think we're prisoners. I just think we've been disabled and shuffled. I call nursing homes warehouses for people. If a hospital called up, “Need a left leg.”
“Oh, send somebody right over.”
“What about an arm?”
“Send somebody over to that.”
So a nursing home to me is a place for spare parts for the doctor's needs for advancing their studies of human nature.
When I was in the nursing home, they need to get me up at “dark time.” I say “dark time” was anywhere from 2:30 to about 5:00. I asked them one day, why? They said, “oh, because to eat with a tube Dorothy. So the next day they come they won't have to deal with you.” I said, “okay, keep getting me up. Put me on the payroll” because I didn't have no place to go but get up and get a bath and get out of the way.
I had a stroke and two aneurisms. When the stroke and aneurisms happened to me, I was taking care of a grand mom of mine that had a stroke. Thank God we got home before I really went into never-never land. It was terrible in the nursing home. People call that an institution. It's like a prison and people need to get out of there. Like I heard one person say they need to be closed down! That’s right all of them.
They claim we're not normal. What the hell is normal! I don't want to ever been normal. I want to be me.
DOROTHY >> I seen a guy with a shirt that said “if ignorance was a disability, everybody could be in the race.’ So I think that's pretty all right for us. Everybody can be in the race for disability if they are ignorant. And the last thing I'm going to say is Free our People, they are normal. They are people, real people that have since turned against them.
We need to change the conversation, like instead of sending people to nursing homes, give ‘em real choices. Tell them they can stay home and get somebody to take care of them. Nursing homes don't need our money. They got more money than they know what to do with. And the people that are putting people in nursing homes are your loved ones. I mean, the ones that you have raised to this point and then they think, oh, a nursing home is where you need to be. A spare part? I don't think so. All I can say is free our people from that kind of abuse. That is abuse.
The only thing that put us there is some kind of catastrophic injury, and immediately people think you're nuts. You didn't live that long to be nuts. I am a 60-year-old woman. I didn't get here by being nuts. I raised four children who have since moved to the west coast. If I'm nuts, then they nuts. That's four nuts coming up to get ready for it, because I raised them. Just Free Our People. That's all I've got to say.
CASSIE >> Angie Miller from DC, Gwendolyn Evans from Georgia, Jimmy Griego from new Mexico, and Buddy Homiller from Philadelphia Pennsylvania.
CHARLES BUDDY HOMILLER, PA >> I know I'm not going to be nice like some people.
CASSIE >> You know you're not going to be nice like some people?
BUDDY >> right. What I object to, what they think, one of the…
CASSIE >> why... you hope that...
BUDDY >> I object.
CASSIE >> he objects. You object to institutions?
BUDDY >> No. I object to a statement that one of panelists made…
ANDY IMPARATO >> You object to a statement that one of the panelists made?
BUDDY >> When she said we must be patient.
ANDY >> When she said we must be patient.
BUDDY >> How in the hell much longer? People are dying every day. How long do you want us to wait? I am very, very angry at what you said.
CASSIE >> That made you very angry, when somebody said be patient.
BUDDY >> Don't you realize people are dying every day? How many people have died? How many people do you want to die? And it’s my feeling... somebody high up is taking a payoff. To keep the nursing homes open.
AUDIENCE >> All right, say that!
BUDDY >> That's right! I’ve been in many homes. When I…
CASSIE >> you lived in a nursing home.
BUDDY >> Three. Homes.
CASSIE >> three different nursing homes?
BUDDY >> When I fell in love with a lady who was in a home...my supervisor kept me in my room six weeks to keep me away. You have no idea what goes on... and how long should we put up with it? I am 76. I’m fed up with the patience.
CASSIE >> It's not time to be patient. It's time to fight with all our might.
CASSIE >> Buddy, here you go. Make sure you get that. Thank you. Angela Miller from D.C. and Jimmy Griego New Mexico, Mike McCarthy, Boulder Colorado, and Gwen Evans, Georgia.
AUDIENCE >> we can't hear her?
CARRIE >> I was put in a nursing home exactly 10 years ago. My family member had put me there supposedly because, one my mother passed away and two, I was six weeks exactly from graduating high school. They told me, “oh, I'm not going leave you there. I’m not going to do this, I’m not going to do that. You'll be there six weeks and that's all.”
So reluctantly, leaving my sister, who was eight years old at the time in tears, I left and I said, I'm coming home in six weeks baby doll, I'm coming home. And she begged me not to go. I couldn't stand the look on the face.
When I moved into Shady Acres, which is the nursing home I was in, at first everyone put on this act just like they do when people are there, when the people are there to check them out. All of you know what I'm talking about. You have been there. You know exactly what I'm talking about. Because when they are here to check the out for the month, the year, whatever, it's “yes, ma'am,” “no, ma'am,” “yes, sir,” “no, sir.” “We'll do it just as fast as you want.” But watch them leave and their attitude is “what do you want now?”
I've seen that for the last ten years of my life. And I was in that place with my grandfather who reluctantly, I'm sorry to say, died 98 years old, in a God forsaken nursing home, which I could stand to see him go like that because he was too good of a man and too good of a Christian.
And by the time he was in that place, he didn't remember me enough to call me his granddaughter, but I tell you this, I know my grandfather enough to know that he wouldn't put anybody who put him in that place in there because I know my grandfather knew what that place was like. And I tell you this much, they need close every one of them down.
AUDIENCE >> yes!
CARRIE >> And start over again. Because what they meant for it to be is not what it is. And I can tell you this. If it wasn't for God and the Christian people that worked with Disability Connections and all these companies that have helped us out here, we would be -- if you can forgive my language because I'm a Christian myself, but this is the only way I can put it. We would be in hell all over again because we wouldn't be heard at all. Thank God for the people that are kind enough to find us places to live, to find people who will work with us and to find a way for us to live a normal life. Because if it wasn't for them we may as well be dead.
CASSIE >> Thank you. A distinguished panelist had ask for a time to respond when they were together to some of the speeches. Some of the panelists will be able to be here all day and some will be meeting shortly, so I want to give the panelists the chance to respond to some of the things that they've heard. But I did say I would do that at 3:00, and it's 3:00, so...
JOHN LANCASTER >> Thank you Cassie. Again, I just want to thank you for the opportunity to listen to you-all and to hear your stories and to get a better sense of some of the issues that we need to be presenting to policy makers, not only in Washington but in states around the country.
I am struck by some of the common themes that I have heard about but I guess I did not realize how prevalent they were, not the least of which is abuse. I am just blown away by the fact that it's practically every speaker up there talk about abuse in one form or another, whether it was involuntary drugs or sexual abuse or violent abuse or just leaving someone in bed without access to their wheelchair or toilet or anything else. So I find that remarkable and just probably the most compelling argument for why we need to get people out of nursing homes and into the community and in their homes where they belong.
The settings by their very nature do not bring out the best in people, whether they're the people that are forced to live there or whether they're the people providing the so called care and that is simply not an environment to be doing that sort of thing in. It's just tremendous argument for closing them down.
I would have liked to have heard from you-all – and please keep this in mind when you're talking to policy makers, but what it is that helped get you out other than your own self-determination, which I am clear was strong in all cases that we heard today. But what of the things did you access? I heard some people mention it was important to me and my organization, assistance for centers for independent living, but what else? I heard some testimony where there was a family member or a good friend who heard your determination, heard what you were talking about and was able to make some moves. I heard a couple of you that just flat-out bolted. I would like to hear more about how you made the transition, how you got out of the situation that you were in. You need to document those stories as well.
And I'd like to hear a little bit more -- although we heard a lot about it -- about what it is that how you ended up there in the first place. What is it in the system that had you not even being asked in many cases just put in a nursing home.
AUDIENCE >> the dollars!
JOHN >> I think we know the answers, but what was the cause? Was there something that could have been done upfront that wasn't being done that was beyond some Medicaid regulation or whatever that could have prevented you folks from ending up there in the first place. So as you tell your story and as you tell them later on, please don't forget those things. Those are important things, because with those models, people can start to structure laws and other things that will help prevent institutionalization.
One thing came through loud and clear, and that was your ultimate choice not to be there. And thank you for that and I was struck by the remarks of Cathy from Utah. I hope I get the last name right.
JOHN >> Garber, excuse me. But she said -- and I am clear that that is true today, that I am in the presence and walk among heroes. So thank you for your contribution to independent living. Thank you for what you're doing and you have my commitment and the commitment of the National Council on Independent Living, NCIL, that continues to support your efforts and work as hard as we can to put an end to the institutional bias in this country.
ANDY IMPARATO >> I'm going to be here until the end of the day, so I won't say anymore now except to thank ADAPT. I don't think there's another organization that could have put an event like this. I would like to thank ADAPT and the people testifying often painful, personal testimony with this panel and I promise we'll do our best to change policy so this doesn't happen again.
GWEN GILLENWATER >> You know -- I do appreciate the stories that we're hearing today. These are very important, important for us to take back to groups, especially in the nation's Capital, to be able to inform them about real people, real lives. However, I have to say, we as a community also have to be as knowledgeable in the process that takes place in our country. We’ve talked about nursing homes and the force that they play. The truth of the matter is, one of the strongest lobbying groups that I come up against on Capitol Hill is the nursing home lobbyists.
AUDIENCE >> get rid of them!
GWEN >> The reality is you won't get rid of them, but what you can do is not elect people who listen to them. That's where the difference is made. I'm sorry. You know, as long as time goes on, there will be people trying to make money and support it. The laws are made by people with elect. If we can't our stories out every chance we get. When people are running for office, when there are consumers available to go and testify at some of the hearings they have and some of their – whatever events they may be sponsoring.
That's when we can become part of the solution. So please do, go and speak, not just when we're all together, because it's kind of a little bit like singing to the choir, but go and speak when you have the opportunity before your state legislature, before your national ones. Take every advantage you can of those opportunities, please.
DR. GIANNINI >> I, too, am very pleased to have been here today and have learned so much about what the horrors have been and what many of you have lived through. I think that you-all know that all of us here on the panel are here today because we want to help and we want to try to make things right so that you can live within your communities and be independent and have self-determination. We have many roles to play, the various members on this panel. We come from different directions. I come from the federal government, which means that I can impact, hopefully, the federal legislation, the federal regulations, the way people think, the way people make decisions, and bring their -- raise their consciousness of what is really going on and where the equities are not present.
So I'm delighted to have been here today. I promise you, as I said earlier, I will carry back all these stories. I will do my very best to correct them and make things right. We don't need just a band aid kind of thing of what happened. But what Gwen said in an indirect way is that we need statutory changes. We need -- it's the law, whatever you need is statutory, and no matter who sits in whatever chair, in the federal government, that won't change unless it's another statutory role, but that takes a long time. So thank you for your stories. I've been very happy to stay as long as I can.
Unfortunately, I have to leave soon, but I'm going to stay and listen to as much as I can. Thank you.
JIM WARD >> I'm going to stick around until the end, so I'll be brief. Again, I want to go with some of the comments about how the institution, be it a nursing home, an ICF, the setting itself contributes to the desensitization that leads to abuse and neglect. And by imprisoning the clients, certainly, or whatever, the patients, whatever they want to call them, imprisoning us, people, in these institutions paired with underpaid and overworked employees that bring out, as John said, the worst characteristics of human nature, and it's the desensitization that's fostered where money is going.
At the policy level there are choices being made about bringing money closer to the people, enabling people to make choices about their own lives or giving that money to the nursing homes or giving it to the institutions. The institutional bias that is empowered by the nursing home lobby and HMO lobby combined with the shameful budget cuts that are going on in Washington to support tax cuts for the wealthiest Americans is outrageous.
For America to stand up as an example to the rest of the world, we need to continue to identify the dehumanization, the abuse, the human rights violations that are going on in our own community on a daily basis before we can preach about how to run other countries and how to be leaders around the world, we need to take care of America here at home and take care of our citizens.
So these stories that we're hearing today, they're not new. It's not the first time I've heard it, but there is something about spending the day hearing so closely the stories of our brothers and sisters that call for nothing different than any other American and that is a desire to be near family, a desire to feel important and dignified and powerful in our day-to-day choices. That is why we do the work we do. I will commit to using the resources of ADA Watch and the National Coalition on Disability Rights to advance the stories that are being told today, to advance getting rid of the institutional bias in America and doing what we can to free our people. Thank you.
CAROL NOVAK >> again, I am Carol Novak. I'm here representing the National Council on Disability. I am also a parent of a man who will be 30 years old next month who has severe cerebral palsy and moved last summer into his wheelchair accessible villa. I am a passionate advocate for long-term services. Not care. Long-term services include accessible affordable housing, accessible, affordable transportation, as well as personal assistants, assistive technology, supports, whatever people need to have a real life in the community. And our most recent report from the National Council on Disability deals with this new concept, a revolutionary concept of long-term services and supports which empower and enable people through a combination of supports to make their life meaningful, safe and productive.
I, too, have been extremely moved and impressed by the talent, the gifts, the passion, the wisdom, the courage that I have seen exhibited among the people who have provided testimony today and it is an honor and privilege to be here.
Thank you for inviting me.
CASSIE >> Angela Miller.
ANGELA MILLER, DC >> “I felt like I was a target painted on my back” said Randy Alexander, I have a few words. I'll read it first and then I'll talk a little bit afterwards. He was an ADAPT organizer in Tennessee. My name is Angela Miller from Washington, D.C. I would like to thank you for allowing me to come speak to you.
I am a member of ADAPT and we continue fighting for people with disabilities that should not be targeted. Nowadays it seems that people who can't get up in the morning, does not need help getting dressed or eating, can leave and drive to work with the wife ,one-and-a-half children and a dog... What a good picture that is... We are here to testify that we are disabled but we are not dead yet.
ANGELA >> Every one's situation is very different. For about ten years I have been fighting to never hear another -- I'm sorry, -- never hearing anyone trying to keep me or make me to stay in a nursing home.
I got out into the community and I got -- and I tried to get back to work with the assistance of the ADAPT -- Capital ADAPT and University Legal Services I had talked with them and they helped me to go forward and talk with a lot of money-making people that I really need to be friends with, and to help me get out of a nursing home. Basically I did not need to be there anymore anyway. It seemed that a lot of them nurses and the doctors that I saw while I was there. Basically they told me I could never walk again and I could never do anything for myself.
Now, at times I do have a walker, but I basically can't go a long distance without falling. So basically to keep from having to have a nurse basically 24/7, I very much try to be so independent. So for now the doctor has prescribed me for a wheelchair. So I use that basically when I go long distance. I found out about a program called ADAPT that really helps and assists you when you really need and really want and you already know that you do not need to be in a nursing home.
I thought about mainly getting out to be with my children. Now, after I did get out, I still have visitation with my children, but I think about it, I can't get up and run any more like I used to, but at least I can sit and be with them thanks to ADAPT.
Then I note back when I couldn't find an apartment for myself, when I basically tried to leave the nursing home, as I mentioned, with the assistance of the ADAPT, capital ADAPT, I also looked into the Washington Post to find a nice apartment in Washington, D.C. that was eligible for persons with disabilities. So I did -- I did find one and I'm living -- I've been living there for about three years now.
Now I am really happy and appreciative that I did meet Bobby Coward and Marjorie Rifkin and now it is my turn to tell others that they can do this. They can get out of those homes. They can get that independent living that they really, really wanted and really need. And I would like to thank you for allowing me again to speak and basically the young lady that was up here speaking, she said she was engaged to be married. So mostly ladies and gentleman here, maybe they can find me a man, too.
CASSIE >> Jim from New Mexico who wanted to leave soon. Lori from, Tennessee, and Eric Von Schmetterling (if somebody could get Erik cause he’s deaf) and Sheila Dean.
JIMMY GRIEGO, NM >> Good evening, ladies and gentlemen. My name is Jimmy Griego from Four Corners area, Farmington New Mexico. I'm here with the San Juan Center for Independence. I was brutally beaten on March 12, 2001. I was – with a closed head injury. I lost my – skills and my eyesight. I was hospitalized for three years, on and off, and after that I got released from the hospital. I didn't have no place to go and no insurance. So the next place I went to was a nursing home for 20 months.
Which I can relate with everybody that’s been up here, that these things do happen. And I complained a lot but they said, “Oh Jimmy, he’s got a brain injury, he don't know what the heck he’s talking about. But I know exactly what everybody up here what they're talking about is true, the misuse of the people. They ignore you. They take away your dignity. You basically don’t have no freedom whatsoever. The only thing that’s missing is the stripes and numbers across your chest like you're in prison.
And I'd like to thank the San Juan Center for helping me. They basically freed me. Without them we, my family, didn’t have no resources on how to get no help.
I got me a social security benefit counselor. She helped me get my benefits coming in. I used to be able to work. So I got that coming. So now I get my own money. I go pay my own rent. I’m not a burden on the taxpayer or my family. I take care of myself, which is cool.
The system does work when you keep it up. So to all who can help out, do that -- whoever it may be. I know it works for a fact. Look at me. I'm a three semester college student now. I take care of myself. I spend my money on my own. I'm not a burden on you the taxpayer or my family.
I need some improvement, but that’ll come in time. And that's all I have to say, thank you.
Oh yes. One other thing. I'm not a saint or anything like that, or ready for the priesthood but I have to repeat something that my priest told me. Cause I tell him everything. He’s my mediator. He told me, “Jimmy, our struggles in life are just stepping stones to life in eternity.” So that means all of us here, we got it made in the end, man. All these struggles are for a reason, I guess. Thank you.
GWENDOLYN EVANS, GA >> My name is Gwendolyn Evans. I’m from Georgia. So all right. Ok, ok. I was... three years... Every day I fell bad. It’s real bad. And um, I had seizures all the time. That was the worst, bad. Didn't come to see me, people didn’t come. They didn't come. – job.
I took care of myself and then after I took care of myself, my mom... and I took care of myself. Didn’t do your medicines all the time. Didn't do your food or nothing... so I did it myself.
I didn't eat anything. I told them I would do it myself. I want to get out of here anyhow. I could walk and everything. I thought I could do it myself. I could take care of myself and everything. So she teach me how to do myself and everything. So she teach me how to do myself and everything. So she would teach me how to do stuff. And she would teach me how to change clothes -- catch a bus and... then she taught me how to…
AUDIENCE >> all right, doll! Help her out!
CASSIE >> You’re doing good!
NOLA >> To be independent. Teach you to be independent.
GWENDOLYN >> Yeah.
NOLA >> You can do those things yourself.
GWENDOLYN >> I did that. For a week. Then she, then my sister tell me that she... she say she can't do that. Cheri, she had to do it and everything. Took me to the doctor and tell me how to do that and teach me how to do that, too, and said I could do that, too.
AUDIENCE >> All right, honey! Free our people! Free our people! Thank you!
CASSIE >> thank you so much.
GWENDOLYN >> thank you.
CASSIE >> Lorri Maubry from Tennessee.
LORRI MAUBRY, TN >> My name is Lorri Maubry. I'm 40-year-old female who likes going to movies. I need help with those things because of my cerebral palsy. When I was 35 I was in a state-run institution for six weeks. That is enough. They put me in bed at 6:00 p.m. and tried to give me bad food that... I was not allowed to go on without a nurse because my speech problem.
That was years ago but some people think I should be in group home and my nursing aide see it dropping because I call the... from the system I didn't call the cops. I told my case worker, hell, no, I will not go to a group home where I never see my friends. I was happy doing my volunteer work and being with my friend.
Middle Tennessee thank you for listening to me.
CASSIE >> Thank you. I would like to call up Carol Jones from Georgia. Thank you so much. And Mike McCarty, Erik von Schmetterling.
CAROL JONES, GA >> I'm Carol Jones from Georgia. I am a member of Georgia ADAPT and People First of Rome, Georgia. I have worked in institutions and nursing homes for over 35 years. I don't really want to go into the details or the graphics of what I've seen, but I can say I still remember what I've seen. I started my career with training at Bellevue in New York, so you can imagine the fun that I experienced learning to be a caregiver.
I have worked in the community and I have seen much how better off my friends with disabilities are in the community. I'm a taxpayer and I work hard for every dime that I make. I don't want my dollars spent on institutions and putting people in nursing homes. It's my money. It's disgusting.
I've had many people in the community thank me, say how happy they are to be in the community. I have never in 35 years had anyone say, “gee, I wish I was in an institution.” Thank you.
CASSIE >> Thanks Carol. Erik from Philadelphia, Pennsylvania.
In 1983, nobody understood my disability. Why, I don't know. But they didn't, so -- and I was difficult because I have a big mouth and they called me hard to manage. So they said I was mental. Okay, so I was in a mental ward.
Before my disability started, I was in training to be a physician. I was a resident -- an intern, and I knew someone on the ward was having medical problems because I was trained in emergency room medicine and cardiology. I was calling the staff and saying, “this person is having a problem. He needs medical attention right now.” Because I was mental they wouldn't listen to me. I tried to crawl out of the bed to go help the person. They put me in restraints. The person died. And right now I forget, but he had a heart attack and he died. They thought because he was a mental patient, you know, that he was just being mental.
On July 1st, 1980 I started my internship in Cleveland Ohio. I was going into internal medicine and then on to emergency room medicine and cardiology. On April 28th, 1981, after signing off rounds we were in the little conference room and I arrested. The staff, later, after I was resuscitated, said “well, we're supposed to treat the patients, not do it ourselves.” At that time they didn’t understand my disability. The other doctors and staff were mistreating me. Because of the anger and the treatment, because I felt my own people, you know, the other doctors, the staff were mistreating me.
It hurt. When I was in school, you know, there was a camaraderie. They said in '83, '84, you're mental, we're going to send you to long-term incarceration in a mental facility. I had 3 choices, picked Philadelphia. I didn't know why. I figured -- I forget why, but I chose it and I came to Philadelphia. And I was scared to death, but in the long run it became the best thing I ever did in my life because I've learned so much in Philly. I was incarcerated in a mental institution for four years. Finally I got out in '88, and after that I met my lover Jimmi Shrode who is a wonderful person. I met Cassie James, who, she should be sanctified as a saint, along with Wade Blank and a lot of people in this room. They are wonderful, wonderful people.
And through them I've learned that if I can't practice medicine in-house, I'll practice it on the damn streets. By making buses accessible. By making an -- closing down nursing homes because nobody should be incarcerated. Nobody should hurt. And that's a people thing. It's no matter what we're called, whether we have a mental disability, physical disability, whatever our differences, it's lateral, you know, not above or below.
And we need all the differences, because if we were all the same, we would die out. And there was -- I can't remember, but there was somebody, you know, that said, we need differences. Otherwise, it was in genetics, I think, or something. But a lot of that is gone, and that's okay. In '03 I had strokes. That took away all my knowledge. I have trouble -- I know what I want to say, but I can't make it come out, and you're seeing a little bit of the example now.
And that's okay, too, because there's still -- I've learned through ADAPT there's a place for me. There's a place for all of us. And before '03 I was a Day Leader. I was a leader in ADAPT. Now I'm not, but I'm still here. And thank you everyone for being here, too and learning from all of us.
CASSIE >> Mike McCarty from Boulder, Colorado
MIKE McCARTY, CO >> I'm mike McCarty from Boulder, Colorado. Before I was in a nursing home I was a truck driver, you know 48 states, making about $45 to $50,000 a year. And then the next day I'm disabled. I ended up in a hospital. I spent four weeks in the hospital. Went to one nursing home called the O'Hare Rehab in Denver, which is now the Liberty House which Atlantis has, an apartment building. Then I went up to Terrace Heights, which is now Mesa Vista.
I was there for seven years and did a whole bunch of things there. I was very active, but there was those invisible bars at the doors. Just like you can – you can only go so far until, like, some one you know sees you leaving and, “oh, Mike's leaving.” You know, so they come out and tell you to come back. And some places in there, they had little things around their ankles and the alarm would go off when you opened the door.
But I got out and I started, in March of '02 and I called my -- I called the Center for People with Disabilities. And I called at the end of March, I called in the middle of April, and May, and then June I finally got out. And I'm now almost four years out of there. And I'm a volunteer lobbyist down at the Capitol, on the board of Colorado Disability Coalition, I'm on the board of Adult Care Management Incorporated. I was asked to put in an application for the DD Council and the State Independent Living Council. So, just have to wait and see what the Governor says.
So free our people. Let's hear it. Free our people. Thank you.
AUDIENCE >> free our people!
CASSIE >> Lori Borst, Texas. This is Glen Barnhill.
GLEN BARNHILL, TN >> My name is Glen Barnhill, but I’ve been called a lot worse, and I’d like to start out by thanking you-all for giving me an opportunity to share some of my experiences. And this is just with the hopes that the things that I'm saying, these things are true and that maybe in some way we can make some positive changes with the current system we have for people in the future.
On January 30th of 1994, after having an argument with a guy, I was shot in the side of the head and as a result, I am an incomplete quadriplegic – basically ventilator dependent. When I woke up the next morning my from coma, I was told I would never walk. Before that they told my family more than likely I would be a vegetable. They wanted to turn off life support. My family refused to let that happen.
I've experienced countless times of abuse and neglect and just unfair treatment in just about every facility that I’ve been in. Due to my lack of having health coverage, insurance, I stayed in Vanderbilt Hospital from January 30th to the middle of that April because there wasn't a rehab facility in the country that would take me because I didn't have money. So around the middle of April I was forced to go into NHC of Columbia Tennessee nursing home. I stayed there for four to five months.
While I was there, there were more times that I can count that even after notifying the staff I had urinated on myself, I would be left in my wheelchair - sometimes four to six hours. And I assure you, if you're not experienced that personally, you cannot possibly imagine the humiliation, the lack of dignity you feel you have, just the despair, the hopelessness.
You become bitter. You tell the charge nurse, people in authority there what's going on. Nothing changes. You don't know what to do. You're over two-hour drive away from your friends or family. It's literally hell on earth.
I remember very clearly to this day, one morning my physical therapist came in with her assistant to my room. As they walked in my room, the physical therapist said, very loudly, “just look at him laying over there in his bed. He looks like an ‘S’.” You know, which you know, my body was contorted. I had no control over that.
I can't explain what that type of environment does to your soul. You don't know if you want to kill somebody or if you just wish you were dead. Some days it makes you that much madder, so you try to live another day so hopefully you can do some form of retribution to the people. It's not a healthy environment psychologically or physically to live in.
After I left that facility I was sent to another fine NHC facility. The one that burnt, just burnt, and quite a few people died several winters ago because they didn’t have no fire extinguisher system installed in the building.
I was on the third floor of that facility. It was during the ice storm that we had that winter. I had also lost so much weight in that facility during that period of time. My right lung collapsed twice. I had pneumonia. I would be rushed to Baptist Hospital, and after my second trip to Baptist Hospital, I pleaded with my pulmonologist, Dr Brack Braunman to help me because I didn't know what to do to try to change the way things were going, the way I had been treated, was being treated in that facility.
I was having an extremely hard time eating. I think mainly because of my severe depression. Anyway, after Dr. Braunman got with the administrator of that facility, my situation at that facility did turn around 180 degrees.
It was almost sickening after that, of how the staff could not do enough for me. I found that disgusting. All I wanted was to be treated fairly. That's all I've ever asked for from anyone. And I've always tried to treat others that way.
Anyway, at some point after that, I went to the Nashville Memorial Hospital, and I think it was on Due West Ave. I didn't have a very good time over there either, but shortly thereafter I went to the NHC of Dixon Tennessee. That place was a real winner, too. I stayed there for the next three years, and there were many times that after I had started having respiratory difficulty. The majority of time when I have respiratory difficulty it’s when I’m laying in the bed. Sitting in my chair, I usually do pretty good just about the whole day. But when I'm laying down is when I had the majority of my respiratory trouble. And when I'm in a bed, I am totally dependent on someone to come help me. I can't get back up to seek help. I can't -- I don't have enough use of either one of my arms to help myself. Anyway, there were more times that I could count that my nurses aide or CNA, as they're called, would come in and answer my call light, and my CNA had been in my room as many as four times on countless occasions, realize I was in respiratory distress and go back and tell the nurse. A lot of the CNA's I had, I had good relationships with and I know these people went back and told the nurses that I needed help. But yet the nurse would not come. And sometimes -- usually it was at night when I was in bed, but I could hear the med cart usually right down the hall from my door and half the time it was simply a matter of the nurse doing her med pass and she was not going to come to my room until she made it up to my room passing her meds. and I was literally laying almost flat on my back gasping for air, scared to death, not knowing if I'm going to have a stroke, die, or you know, if I did wake back up, if I was going to be a vegetable or what? My life was filled with constant fear and we got to the point that I was scared to death to get out of this wheelchair and lay down in a bed, and that's no life fit for anyone.
This just -- that's the main thing that happened at NHC of Dixon. That's the thing that upsets me the worst, more than anything. When I would go out in the halls, there was an old fellow one day that was asking for a drink of water. And I only have limited use of my left hand. And I would have given him a drink of water right then if I would have been possibly able to do it, but I wasn't capable of helping the feller.
He was by the nurse's station, Side One nurses station, and I sat up there at that intersection area, those hallways, and I saw that old fellow asked nurse after nurse, CNA going by. And they kept telling him, “oh, wait a minute, honey, I'll get you a drink in a minute.” And no one ever got him a drink. Finally I got so angry after some -- you know, watching this for about 15 minutes, I went over to the nurse's desk and I asked -- there were three nurses sitting there. I asked them, “could one of you get up off your ass and get this man a drink of water?”
AUDIENCE >> Way to go! Right!
GLEN >> “He's been asking for water ever since I've been here.” You know, that's just -- whenever I did see things like that, I would try to advocate for my fellow patients, because this is not right. It's inhuman that he didn't get a drink of water if he's thirsty, or...
And another thing I found ironic and very comical. This one really needs to be on the record, folks. Whenever there's a state inspection at the nursing homes, the director of the place already knows about it. And the people are running around like the damn building is on fire. And, man, I'm telling you what, they want to make sure that every thing is in their proper place. And, you know, if there's going to be a state inspection, folks, no one at that facility should know. I'm here to tell you I saw it time after time. You know, it's a complete joke. If you’re going to have an inspection it’s silly for people running the place to know the inspectors are coming. And if things are the way they should be, there should be no reason for people to be scurrying around trying to get ready for an inspection because things should be right to start with.
GLEN >> But I'd like to move on a little bit about how I got out of the nursing home. At some point I believe it was at the end of May of '98 or the beginning of '99, I got pneumonia. I happened to be sitting in my wheelchair that day. The staff -- I had been getting antibiotics for at least two or three days for it. The staff knew I was sick. I had pushed my call light. I was having respiratory trouble. No one would come. So I called my dad's house. I knew he was not home, but I left a message on his answering machine. I let him know that I had pneumonia and that the staff knew about it and that if anything happened to me for him... in other words, for him to take the tape out of the recorder when he got through listening to the message. Keep the tape, because if anything happened to me he would have proof that they had not come to help me.
And my dad called the facility when he got home that evening. The next morning I was sent to Baptist Hospital. After I was there about three days, I just realized I could not go back, would not go back to a nursing home. I didn't know what I was going to go, but I didn't care if I went out on the street and lived half a day and dropped dead. I wasn't going to go back into one of those places.
And I started calling my brother who lived down in Florida at the time and told him about how things had really been going on. Because I kept a lot of this information from my family, because I didn't want to worry them and have them more concerned about me than they already were. Well my brother said that he would like me to go and try take care of me. Maybe we could make a go of it together. So he did move up here. And so for the next four years my brother cared for me.
The sad thing is, the only help we all he got for the first three years primarily was nurse's aides come out once a day from Vanderbilt Hospital to give me a bath. And, you know, I think it's ridiculous that my brother, could not have received more help over a three-year period of time taking care of someone in my condition 24/7. I mean what happened to all the money? It had been paid to the nursing home. Why couldn't some of that money went to get care, you know -- care to help my brother at home. Anyway, my brother met a woman and she cared for me. She lived with us.
But since then I got nursing through TennCare. I had my own apartment, and my nurses cared for me 24/7. I'm extremely grateful for that. You know, when I do have problems with my nurses now, I can usually get them resolved in a reasonable amount of time and I'm finally able to live with a reasonable amount of dignity. You know, I am able to go to see a movie now if I want to, go out to a restaurant to eat.
I have been up to the Governor's office this past summer protesting off and on for 77 days, and I really enjoyed that.
AUDIENCE >> free our people! Yea!
GLEN >> free our people! I deeply feel that this current system is broken. We need to rebuild it from the ground up. And thank you very much.
CASSIE >> Thank you. Thank you so much.
CASSIE >> Anybody who hasn't spoken. We're trying to end this hopefully maybe by 5:00. So I know there's people from New Jersey, people from Georgia, and Texas, Colorado, Philadelphia, Pennsylvania, and if you're in this room, please get in this corner and we're just going to have people start coming up and say who they are. We don't want to miss a story. Linda Merkle. Thank you.
LINDA MERKLE, MD >> I'm Linda Merkle. I'm from Baltimore, Maryland. I'm a nursing home survivor. I was put in a nursing home after I suffered a stroke at the age of 45 because my family didn't know I could stay at home and get the same help that I was getting at the nursing home, which was hardly anything at all. I would ring my bell for a nurse and it would take her a couple hours to answer the bell. And I would be like - God forbid I was having a heart attack or something, I probably would have died.
And the nursing home -- the food was awful. Oh, it tasted terrible. There were nights when it was -- guess what you're having for dinner. Cause that's what it was; you couldn't tell what it was.
And the therapist, the one therapist I had, she was a delightful person. But the rest of them were only out of it for the money. They were only there for the money. You're a patient, let me help you. Hurry up I ain't got time to be bullshitting with you and talking and communicating with you. Just do what I tell you and that's it.
Now that I'm out I finally got -- I moved out in 2003. I've been out four years now. And I love being out. I have my own apartment and I can come and go as I please, and I belong to Maryland ADAPT. If it wasn't for Gail Hafner and Crosby Kinger, I'd still be in the nursing home.
I now realize what it is to be disabled and how it feels when people -- when people would stare at me. When people were disabled and they were younger and I'd stare at them and I would be like, gosh, they're weird people. Now I know how it feels, and it hurts to have people staring at me because I'm disabled. I'm not dead. I'm still human. I can still eat, and think, and I put my pants on one leg at a time like the rest of everybody. And my arms in my clothes one sleeve at a time.
LINDA >> And my caregiver that I have now, she's dynamite. Since I got out. The caregiver I have. I have an aide that comes in and takes care of me for eight hours a day seven days a week and she's a dynamite girl. I love her to death. Instead of being a caregiver she's more like my sister. And I think it's time that we need to make it better for the caregivers too and have them make more money so that they can really feel like they're accomplishing something, too. They need to be given more money because they work hard. They're our backbone as far as I'm concerned. She fixes my food for me but I tell her how to cook it and stuff like that. And she helps me do my laundry and go to the grocery store. And helps me take a shower, helps me get dressed and wash my hair and all that other stuff. So she works hard.
CASSIE >> Thanks Linda. I want to try and get everybody in. We want to make sure that everybody gets to tell their story. Thank you, Linda. Hildegard Alstrom.
HILDEGARD ALSTROM, UT >> My name is Hildegard and I live in Salt Lake City Utah. And some of, one of you Gentlemen, were wondering how the people get into the nursing homes in the first place. And I can tell you, not from all of them, but from me, it took just one doctor’s signature and you're in.
And I was naive. I didn't know what to expect there. And I agreed. So I was there and I think -- I tell you it was terrible.
First of all, I couldn't take a shower every day like I do at home. I was scheduled Monday, Wednesday, Friday. One Friday I asked in the afternoon “when do I get my shower?” And she said you're not scheduled for today. You have to wait until Monday. So from -- by this time, I was on heavy antibiotics and other medication that give me diarrhea, and I was so uncomfortable. I had to wait for five days or six days to get another shower.
Then I had a wound my doctors prescribed -- subscribed -- prescribed, I'm sorry. I'm trying talk English, you know (laugh). He put me on medication. What did I want to talk about? Anyway, yeah, he let the nurse know she has to take off my wound every day. Just one nurse who did it. All the others didn't. And she was there just three days a week.
And then the food. We talking this before. One day we had -- it was probably like a stew in a bowl, but I could not identify one piece, if it was a potato or meat. It was all gray. It looked like, it looked like it was eaten before. And I couldn't eat it. I tell you that I was there. I lost 30 pounds in seven weeks. Now, that's a good thing, but I was so sick.
Then I had to be on antibiotic. I had a PIC line. I had to -- and they didn't give me the antibiotic like it was prescribed, you know, not all the time. And one day it was so bad, I was sick in the morning already. They gave me the medication on my empty stomach because I had a doctor appointment at 9:00. So I left and came back at 12:00. Yah! After I took the medication, I threw up. And I came back at 12:00 and there was still a bowl with my vomit on my table.
And several days I couldn't go back to my bed after I was in the bathroom because they didn't have enough linen to change my bed. I was sitting in the chair for five hours. I could not get back into the bed.
Ad the worse thing I experienced, one night I woke up. A young male attendant had his hand under my cover. I don't know how long. When I woke up, I said, “what are you doing?” and he said, “I just check if you need a change in the diaper.” I said “I don't have a diaper. I have a catheter.” And the catheter bowl, ‘er bag, it was sticking out. He knew that. What is his hand doing under my cover? And then I felt so sorry after this experience, I feel so sorry for people who have to be there all their lives or for years and years and years.
And I tell you, it was just seven weeks that were stolen from my life and I feel sorry, again. And five months later I met the ADAPT and since that time I am fighting for these people and I never will go to rehab in a nursing home again. Thank you.
CASSIE >> Ken Hauser, Bob Besill, Rebecca, Phyllis from Maryland, Sylvia. Okay. Say who you are and where you're from.
KENNY HAUSER, NJ >> hello, my name is Kenny Hauser. I'm from New Jersey and being in a nursing home is no picnic. I was there when I was 13. One day a lady came, talking to me, and then a couple of years later that she talking to me about that, and then a couple years later got out of the institution from there they got into a town house, and I like it...
CASSIE >> thank you.
PHYLLIS ALDANHOOK, MD >> Hi, my name is Phyllis Aldahook. I'm with ADAPT. I'm here to tell you a small story. I love Mississippi, south of Mississippi. And in December of 2001, in April 2002 I was put in a nursing home in Maryland. Marener Glen Burnie Now, I went through the same things you've heard, the bad food and the horrible conditions. I laid in my own human waste for hours and hours, but I think the most tormenting thing for me to watch the people without a voice, the people who couldn't speak for themselves, the people who for one reason or another they couldn't communicate.
They had no way to tell the nurse's or aides. They didn't seem to care whether they were wet or thirsty or they needed food. And to make a long story short, I got mad and I hit the Yellow Pages. And under the Yellow Pages we have the government pages, and the Maryland Disability Law Center is there. And Gail Hafner is there and she is the woman I contacted. And Gail took a deep breath and said this is what we need to do. The woman is full of ideas. I couldn't write fast enough. Well, I wrote fast enough, but I couldn't read my own writing. So I had to keep calling and calling her.
I'm out of that nursing home. It doesn't look like I'm going back. I will not go back regardless. But when I first got there, they actually took bets because they thought I had less than a week to live. And here I am thanks to Gayle, Crosby, John Sorensen, and all of y'all. And I can tell you one thing, therapy, the best therapy in the nursing home is not like the therapy of having your own home. And looking out at all these people, y'all are my best therapy. You're great. Thank you very much.
CASSIE >> Bob Besill
ROBERT BESILL, NJ >> Hello. My name is Robert Besill. I am a man with cerebral palsy. I wanted to move on myself. My father had to call DDD. They didn’t help me. My father told DDD I was out on the street, now DDD had to help me.
In my life I had lived in a boarding home, a developmental center, and 3 group homes. I have been restrained, tied up, burnt with cigarettes, my middle finger on my left had is dead from Sheryl rolled my wheelchair over and over and over and over. Sheryl used a transcutaneous electrical nerve stimulator to hurt me everywhere on my body and abandoned me for dead.
If my sister didn't call to check on me I would be dead today. Why Sheryl got 5 years in jail. I use a power chair and I communicate on an electronic language board called a pathfinder. Technology has opened my life.
I now live in a condominium by myself with my dog. I am working in Peace Corp. I work as a volunteer and help other people move out of developmental center. And close my … I have had to use persistent -- I have my freedom. Thank you God.
To President Bush I ask you: if one of your daughters had a disability would you put her in a hell place? You need to think about that. Really. Bush, please, please help us get people out of institutions and help get institutions out of our great nation. Robert Besill, Laurenceville NJ. Thank you so much.
CASSIE >> Okay, Bob, somebody give you a hand down and Karen will be coming up in one piece.
CASSIE >> Closer, sweetheart. Some people can't hear you.
KAREN >> When I was born, the doctor said I wouldn't last six months. My birthday is June and I'll be 40 years old. So that is out the window. I'm here. My family moved to Philadelphia in 1980. I have lived in two nursing homes, one for children and one for adults. The one for children, at 15 to 17, at that age I didn't know -- I didn't realize it was a nursing home until I was 25. Until I met people from Liberty and ADAPT. I thought it was a disabled boarding school. But it is a nursing home and it still exists.
In 1986, my parents separated. I stayed in Philadelphia. I chose to move in the nursing home. I mean, it wasn't the evils -- it's – the parents in a three-story house. I'm in a wheelchair. My mom is in a wheelchair and there's not enough room to get around or would you rather be somewhere where it's accessible, temporary and get a ramp.
So it was my choice at the time to move into the nursing home because they were separating. I did not want to move from Philadelphia, so I moved into the -- I moved whatever. And then in and then in 1990 – I met people from Liberty Resources, they got me out. So from summer of 1991 I have been independent on my own.
I have -- I'm married, have three kids. I just had my last one last year, she's one year old. So I'm very independent. People say -- people can't find me because I'm -- They're like, where's Karen at? Going somewhere. I'm not in the house. I'm going someplace. Don't let the grass grow under the feet. I don't want that to happen. I get around. I go places. This is the best thing that has happened to me, my life, ADAPT.
So this is home away from home. If I'm not home, I'm with y'all. So this is the best place for me that ever existed. So I mean in the nursing home, I lived there for four years.
Then when I got out, I worked -- I went back and forth to visit residents. I was a community advocate, taught to be a community advocate. Go back in and talk to residents and they were used to me because I lived there and knew what they were going through. So they already knew me. I would talk to them, whatever they wanted to do or whatever.
And over those -- over those couple of years, I've seen about a dozen die of various reasons. I mean, one of them died because the attendant didn’t cut his food up well enough, and he was standing out in the hallway. They guy was eating the food. He choked. They didn't care. He still works there. I don't know what they put the cause of death there. They didn't reprimand him or nothing.
And so then as I'm going back to see the people, I'm seeing one person, she's -- I mean, she looked healthy to me. But she was all right, I asked are you all right, blah, blah blah.
CASSIE >> I don't want anybody left out.
KAREN >> So that's… I went back and forth to see the people. They were used to me. Thank you.
CASSIE >> There’s still a bunch of people back there. That’s what I am worried about.
KAREN >> Yeah. And we want to get them all out.
CASSIE >> Thank you.
DANNY SAENZ, TX >> I'm Danny. When I was three years old I was put in the Ada Wilson Crippled Children’s Hospital in Corpus Christi Texas. I was born with cerebral palsy. They did all kinds of surgery on my legs and I was there during the week for therapies and all that. I got to go home on the weekends and when my brothers and dad would pick me up, as soon as they got me in the car they would change my clothes. In the hospital they didn't care about whether you had your clothes or not. They just picked whatever, odd socks and all kinds of weird things.
And when I was at home it was great, but then it got time to go back. I was supposed to be there Sunday by 8:00, but I was never there by 8:00 because it was always real traumatic. I would start to cry and the nurse would tell my - warn my mother that if -- that she should just not pick me up in the weekend because I was disruptive. A three years old, missing parents.
And then I would have problems with bowel movements. And they would force milk of magnesia down my throat and then wake me up at 4 o’clock in the morning and ask me if I had a bowel movement and then sit me on the commode at 5:00.
Like I said, every time I remember my dad visiting me, but I don’t remember my mom. But my mom told me later -- it's still hard for her to talk about it. She would tell me that it was just too hard for her to go see me and to know that, you know, I would cry after she left.
And when I was five years old I got to go home. And my mother and my family did all my attendant care and I was in the hospital for a couple of times, short times, and one that I don't remember at all. I was just, I don’t know. But anyway, when I was a kid and going to school and stuff, my attendant care was done by my family and I moved to Austin in 1986 and since then I've had my own attendant that's not my family because I chose to live there. And my family is still in Corpus and it's my choice and I get to pick my own attendant and I've developed as an artist.
I'm a visual artist. I've performed using some of my experiences about living as a person with a disability. And with attendant services I'm able to live independently. And with my wheelchair.
Because when I was a kid I didn't have a wheelchair, I was just stuck wherever they put me. So now, I guess that’s why, like the woman before me, I was relating to her because I'm hardly ever home either. It's rare because I have things to do and -- but the two-year period of being -- as a child that has effected my life.
In the '90's I starting to deal with that issue and I still have a official diagnosis, posttraumatic stress disorder. For me, walk like a duck, whatever. You know. There's times when I see those type of beds and I saw it one time in a hospital and if I had been able to, I would have jumped up to my friend's lap because it freaked the crap out of me. And visiting my uncle who was dying in a nursing home, and as soon as I walked in and saw the scene I had seen as a kid many times, it was me too -- staring out the window, looking to see if somebody was going to come. And it was so weird to be there. I was like at that time 40 something, but I felt like a little kid with my mother. I like, didn't want to be separated from her.
And -- but, you know, what I try to do now is help other people get out and deal with especially kids. Nobody belongs in a situation like that, especially kids.
CASSIE >> Thank you Danny. Sarah from Vermont.
SARAH WYNDELL, VT >> Hi. My name is Sarah Wyndell and I'm from Montpelier Vermont. I have a psychiatric disability called multiple personality disorder. I was in and out of institutions for 3 years in New Hampshire and eventually Vermont.
In the time I spent in an institution I was treated with disrespect because of my disability -- I did not matter. I was given medication that kept me in a constant foggy state. When I acted up – which included living as a person with a multiple personality disorder - I was tackled to the ground and shot up with Thorazine.
I would find myself in restraints, in what they would call the quiet room, which was a seclusionary room where people outside the room heard quiet. But for me it was a re-traumatizing and horrific event. I very rarely saw a doctor. The nurses and psychiatric aides would not speak to me unless I first identified myself as Sarah, adding to the confusion and stigma attached to my disability.
I was not able to eat with real utensils. I was not allowed to even have shoe laces. The most devastating thing to me was that once I was there the doors locked behind me. I was not allowed to leave without any supervision. The basic civil rights I had without the label were gone. I was a prisoner.
So how did I get out? I started picking up on what I had to do and say to get out. At first I started small. I noticed that smokers were allowed to go outside, so I picked up smoking. I was allowed to go outside under supervision for four-ten-minute breaks a day. The fresh air I longed for became a nasty addiction I did not need, but my experiment worked. I studied what other people did to get out and copied them.
I was free from the institution-living three years later and moved in a group home in Vermont. When I was living in the group home I had little more freedom. I used that freedom to find a job. I secured a job teaching at a preschool. I had no help from the people at the home finding a job, but because I was still connected to the home the staff found it appropriate to share my diagnosis with my employer.
Because of the stigma attached to my psychiatric disabilities the head teacher thought it unsafe for me to work with children. I was fired. The group home staff did not teach me about the legality of this.
In order to treat the anxiety from the experience I was put on more medication and my case manager filled out forms for me to live on Social Security benefits and subsidized housing. I was then discharged because I had monthly benefit and housing.
This was the beginning for me, though. I was free now to make my own decisions. The anger I felt from losing that job never went away. The tears I cried were replaced with chants of freedom such as “nothing without us!”
When I took the job at the Vermont Center for Independent Living, I soon learned what it meant to be a part of the independent living movement. The freedom I feel every day pushes me forward. I got myself an education and just finished graduate school three months ago.
I developed and teach a class on the independent living movement at Springfield College. I just got engaged too and I'm getting married this year.
I still work at VCIL and I'm the president of the Vermont Protection and Advocacy Board. I still have fears of the stigma attached to psychiatric disabilities and that I will end up back in a institution, but I hope the testimony given today will help decision makers recognize the full potential of all people with disabilities living in our homes, not what?
CASSIE >> I want to give you this.
Peoples First of Atlanta. A member of Georgia Voices Account. A graduate. A very new member of ADAPT. Proud to say it.
Yes, I come from a nursing home and point blank it was hell. Was I happy? No. But ask me now, am I happy to be out? Oh, yes.
I am my own person. They couldn't pull that away from me. They couldn't pull even my self-esteem. They tried. But by I'm in my right mind now, I'm not a person to say no to. I'm a person that wins. What I mean by win, I mean I go for what I go for.
I'm here to tell everyone, don't look down at me because I’m in this chair. Cause my father’s up in heaven looking down on all of us. We are here to help everybody. What that big sign back there say? Says free the people.
We are not here to live in nursing home. Cause a nursing home is not my home. My home is where my heart is at. My heart is here to tell everybody we are a family. We need to pull together. Don't close us out.
Open up your heart. Open up your eyes. Let your ears be free because we are not dead. We are alive.
CASSIE >> There you go, sweetheart.
ANITA >> thank you.
MARIA VASQUEZ, TX >> My name is the Maria Vasquez and I'm from Austin Texas and I lived in a nursing home for four years and it was hell. They kept me in bed most of the time because they said they were shorthanded. And they kept me in feces and urine for hours in a day. And the food was terrible. And I got bed sores because of laying in feces and urine.
When the people who check on nursing homes came to check on them, they would dope me up with Valium and that would keep me doped up for days and days. I didn't know where I was or who I was. It wasn't until I met Bob Kafka and Stephanie Thomas that I got -- was able to get out.
And now I live in my own apartment and hire my own personal attendant. And I am happier now than I was in those four years because I lost my life in those four years. At least that’s what it felt like. And I'm here to say that nobody belongs in a nursing home and free our people.
CASSIE >> Steve from Erie, Pennsylvania.
I arrived. I arrived. I was court committed because of my parents. My parents weren’t … my mother was 14, 15. I was only three.
Basically we went to a judge. Judge said “he's got a disability, let's put him a state institution. It was a center, Drynn, if you know where that's at.
At the time I laid on the mat, had a sheet, I was laying in feces. I was laying in … the attendants would only do us, maybe take a shower like – just wipe us up like every other day. We -- I didn't really know a whole lot.
I went to have my surgery down in Pittsburgh. They said they gave me -- they gave me the phone in Pittsburgh. I stayed in a rehab center and they gave me a phone and my mother said “I can't handle you. I need to put you in the institution full-time.”
So fine. I stayed in the institution full time but I didn't get any schooling and I didn't get no education. The only time I got education was when I was the age of 12. They didn't know that I had a disability. They didn't know I had a reading disability. They didn't know that I was -- that I had CP. They didn't know that when you, you need to learn how to take care of you. They always thought that people were always there.
I got out at the age -- out of the institution at the age of 17. I told the institution, I'm going to the radio station because you're being abusive to me. You're being abusive to my brothers and sisters. You need to stop. They told me, “fine.” So they -- they got a doctor. The doctor said, “yeah, we'll sign the papers and get a judge to say that you're incompetent to live on your own.”
So that was the summer. I stayed at like a group home. I was like, I don’t like it. They make me brush my teeth. They make me change my clothes. They didn't give me what I wanted to eat. This is time to say, okay, fine, I want to move.
I lived in another house. I was in a … I was in a smaller structure. I had a -- I was in a home setting. The home setting was okay, but, you know, you're like, I want my own bedroom. I want my own space. I want to be able to do the things that I normally did.
I turned 21 and moved out of there and I lived in the community living. I said, okay, fine. I had three guys. I had three guys. I was the more intelligent one than the other two guys, so they said I had to clean. I said, “no, I'm not cleaning. They're responsible for part of the house as much as I am.” So they said “okay.” I said “fine.”
I called Pittsburgh CIL and said I want to move out on my own. I have my rehab doctor say, “okay, we'll give you -- we'll get you a nurse to clean and take care of you.” This is before I knew anything about attendant care. Basically I lived there until I basically -- then I went to see a psych doctor. He said, “you're crazy.” I said, “like I'm not crazy, you're crazy. I’m ok. Fine.”
So basically today, I lived in my own apartment, I moved around the city in Pittsburgh, and I had time to really get to know the independent living. I knew what was out there and I knew how to do that.
I basically got out of in Pittsburgh because I had friends into illegal drugs and so basically I said, “okay, fine.” I moved to Meadville, Meadville Pennsylvania. I said OK. OVR said “Steve, you need to move to the Erie County because we have a bigger -- you can go get a job, you can do everything.” So what I basically did is move that far. Basically, I want you to know, I had a job. I was working for a CIL. I went into nursing homes.
The stuff that I told you is true. It's still happening today. You need to close down nursing homes. Free our people! Now!
CASSIE >> Thank you very much, Steve. I'm just going to name a bunch of names right now because they're the people I don't see -- I don't see all of them in the corner and we're getting late in the day. Sylvia Matthews from Maryland.
SYLVIA >> here.
CASSIE >> okay. Dan Smith from Utah. Jeffrey Johnson from Madison Wisconsin. Devoe from Colorado. Didn’t come? Gene Spinning, Connie Cummings and Tameka from Philadelphia, Pennsylvania. Darrell Teague, and from Allentown, Peggy Dougherty.
LAURA BORST, TX >> Hello my name is Laura Borst and I live in Houston Texas. I was labeled autistic as a child. And when I was like 13 or 14 I went into a rebellious phase and I ran away a little bit sometimes. And because of that my parents placed me in a psychiatric facility.
And when I was there, I really didn't like it. I mean, it was like I was -- they put me on a drug and it was Thorazine, and I didn't like that feeling. In fact, I tried to refuse to take it, but they put me on another drug, but later on in life I read more about it and I decided not to use it. And that drug caused depression and it turned out that I was really depressed like when I was 15 or 16. And I was running away a lot even more simply because of the depression and I didn't -- I was in the facility, it was like the staff was like -- one staff member was following me around or something and it was like she was really being hard on my case, and I found that pretty repressive.
And one time I was like teased by some kids and then when I complained to the staff, they said, “oh, you're just being paranoid.” But, no, I was not being paranoid. It was like they just probably didn't want to deal with that and they just -- they just said, “oh, just ignore it or something.”
And it was like I didn't like the way they were treating me and I think they were just labeling me paranoid so they could -- they just didn't have to deal with, you know, handling the kids who were teasing me. And so far, when I was 18, I just quit going to the psychiatrist.
I quit taking any of those medications and I just pretty much managed my own life and I spend more time just reading things and -- or watching public television, you know, educational television. And I figured that has helped me a whole lot more than any psychiatry or any so-called program, any so-called rehabilitation or therapy program could.
AUDIENCE >> Free our people!
SYLVIA MATTHEWS, MD >> Good afternoon. I'm Sylvia Matthews from Baltimore Maryland, and a part of Maryland ADAPT, where Crosby King is our leader. In fact Crosby and a very good friend of his broke me out last Sunday. In the last year I have been in four nursing homes, in nursing homes four times. I'm short-term. The very last one, when I left, they called me an escapee. What I didn't like about -- when I went into nursing homes it was because I was in the hospital and they sent me for therapy, and then I left because I didn't like them.
The last one I had a roommate, she was real nice. When I first went there, she was telling me how good that place was and how much they help you. By the time I left, I had changed her. She said, “what am I doing here? I got to have a home to go to and I can get the same service here that I'm -- I can get the same service at home that I'm getting here?” I said, “you're right.”
I had on the braces at that nursing home and that day during the 70s I wanted to go outside. I went to the door and they said, “you can't go out there.” I said “why?” They said, “you need a nurse with you or an aide with you.” And I said “I couldn't find anybody.” I said “I want to go outside like everybody else because the weather is nice.” They said “you can't go out there.” She said “I'll page somebody from your unit.” She paged for an hour and nobody responded to her. So then she let me go outside where she could see me through the window. And she told me to wave when I was ready to come back in. So I sat out there in the weather.
The next day I went outside and went around there again and she let me out without any static and where she could see me. Then Crosby and his friend came over and we went and found this social worker and the social worker said “I thought we worked it out where you weren't going home.” I said, “no, I'm still going home. My health coordinator called Friday and talked to you and said that I can get the same services at home.” She had arranged OT, PT, visiting nurse and one other thing I can't think of right now. And so she said, “well, wait until tomorrow.” Then she kept saying “wait until tomorrow.” Then she said your doctor is here. So I went and talked to my doctor. He said “wait until tomorrow and you'll see your nurse.” And the nurse said “I thought we worked it out that you would stay.” I said “no, I'm going home.”
So I had to sign what was called ‘against medical advice’ to get out. So I signed it and I went out. They helped me out with my things and that's when they called me an escapee.
The nursing home before that was the same thing. They kept me in the bed too long at the hospital so I needed therapy, and I believed in therapy. At that nursing home, I went home to get some things. I tried to do it right. First I talked to my nurse. I said “I need to go home and get some things.” She said, “no, you haven't been here long enough in order to get permission.” So then one day I just called Mobility, which is paratransit in Maryland, and went home to get things. But once I got there it felt too good. I didn't want to go back. So then I had moved in the same complex but a different apartment. I had moved to a different apartment the nursing home had the wrong address. So they sent the police to the wrong address. So the lady said to me, “well, I don't want you to be startled, but the police are coming.” I said “okay.” I didn't go back there because I didn't like it.
At that same nursing home I had reported to the authorities things I didn't like about there. One was that they yelled at the patients because the patients asked for help. And one was my roommate, when they would change people’s diapers and clothes they would leave it in the hallway in a cart. And it would smell awful. It be feces and urine. And you would have to smell those things going in the home and in your room. You had to smell those things. The other thing I complained about -- there was a third thing.
But anyway, the other thing that I can't think of right now, but when I reported to the authorities they wrote me and said “insufficient evidence of your allegations,” but yet at the bottom of that same letter they listed all three things, all three or four things and they agreed with them.
They had -- they said that people at the nursing home had changed their ways by now. The nursing home before that was where I had a heart attack. I was in the bed at night. They had deactivated the call bell and I was trying to call because I was hurting. I could not turn over and I was sick on my stomach. So I threw up on the floor and the next day they shipped me out of there to the hospital. And the day after that the hospital discovered that I had had a mild heart attack and they sent me from there to Johns Hopkins to get stints in my heart. So, again, I ended up in a nursing home because they kept me in the bed too long.
I learned those exercises, so now I do those exercises in my bed and I keep my strength a little better.
And the very last -- the one -- the very first one was the one where -- it was kind of the good, pretty good. I can't remember if I told you I'm a blind person. I can see a little bit, movement and light and things like that, but at this nursing home they taught people to wheel backwards because they said that the person didn't have the strength to do it with their hands and feet, and that it's easier to go backwards. These people wanted me to stay in my room and didn't want me to go anywhere. They said “because you might crash into somebody.” I was using a manual and so I said “well, how do the people see who are going backwards.” And they said, “they don't.” So then I went on about my business because you could go outside there, and I could go to PT a couple times they had to go to activities, so that is my story.
CASSIE >> You know, we're running a little behind the time, so I don't forget, I would like to thank the sign language interpreters, the CART transcribers, attendants, the helpers, the welcoming committee, ADAPT, and all the people who spoke, and the webcast. But I want to keep the speakers going and I want to hear from everyone, if we could be brief because we have meetings scheduled. We’re starting a whole different agenda tonight and we would like to get to that. And I would like Stephanie to close it. So if we could make -- there's four more people, is that right, four people over there to go? You start.
AUDIENCE >> yea!
GENE >> Thanks, guys, for staying. My personal story only involved me staying in a nursing home for four months, but I want to tell you about it, my experience because it was a ridiculous situation. I ended up in a nursing home and how close I came to staying in a nursing home.
I worked for about 20 years supporting myself, owning my home, paying my personal care attendants, paying taxes like everybody else. On April 1st 2001 I ended up in a hospital with a severe infection in my hip. During my recovery I started to make plans to get back out of the hospital. I contacted conventional personal care companies and none of the companies would take my case.
While I was in the hospital I applied for Medicaid to help pay for those services, and the hospital took the responsibility, through the Social Service Department, to take care of my application. I gave them the information that they needed. Two weeks before my discharge I was informed that none of the companies in Rochester, traditional medical models, would service me.
One week before I was to get out of the hospital, the hospital came to me and told me that they had misplaced some of my paperwork and my Medicaid application was now denied and I had to reapply. A week before, and it was the week before the discharge, so it left me no alternative but to go into a nursing home.
Since I was all better and I was ready to go back home, I packed up my truck, and went over to the nursing home. I took my stuff over there, got out at the nursing home, found out they didn't have a shower chair for me. I went back home, got my shower chair and brought it back to the nursing home. So I had to provide my own equipment in the nursing home.
I caught an infection while I was in there which put me back in the bed for about a week.
Another thing that happened to me while I was in the nursing home is I had a roommate, Frank, that was 78 years old and recovering from a stroke. One morning I'm talking to Frank and Frank just kind of got quiet and I ring the bell because he didn't look right. About 45 minutes later someone came in and Frank was dying. So while I had my personal care taken care of behind the curtain, Frank's family was filing in saying goodbye to Frank, which was pretty disturbing experience.
I was in one of those nursing homes that I was supposedly getting rehab services. They really didn't have anything for me to really do there, so I used to go down to the physical therapy department and sit around there for 30 minutes twice a week and said they could get the extra money from my rehab room I was sitting in.
After I got my Medicaid approved I got personal care services through the CD Pass Program in Rochester Center for Disability Rights. And I want to thank them for getting me out of the nursing home. Have a good day.
CASSIE >> Gene, thank you for hanging in.
DAN SMITH, UT >> my name is Dan Smith I'm from the one-party state of Utah for 150 years. Salt Lake DRAC, which is Disability Rights Action Committee, ADAPT Utah. We're the only non-profit that does anything for the disabled in the state of Utah. The ILC does nothing, absolutely nothing. In fact, they vilify us when we try to make system changes.
It was January 1996 during the HMO implementation cutbacks. I had no medical insurance and serious medical issues involving emergency surgery. Medical protocol directives were not followed in order to increase investor profits. As a result I spent the next six weeks tied hand and foot in delirium. I had a permanent ten-inch hole where my stomach muscles used to be. I had been partially eviscerated, had liver and kidney failure and then rebound. I found I had an incurable terminal condition.
There were four beds to a room. So many lives, so much permission getting. Loss of choice, loss of liberties. So much control over virtually every aspect of my life. There was little dignity. I felt second class.
As we are in Nashville, I have to mention my roommate, Leroy Barr, Rusty Barr. Rusty, because he had red hair, he was in the grand ole Opry for 30 years. Korean War veteran. And Rusty lost his leg, he had a stroke, and diabetes, and he lost his leg due to inattention to the wound.
Some more to come to mind from my staying at the facility, are well: first jail and then dehumanization, depression and degradation, humiliation, theft, disempowerment, feces, over medication, psychological games bordering on abuse.
One night the feces was in the hallway, 20 feet down the hallway, they didn't clean it up until the next morning. They would talk down to people, diminishing self-worth and making your issue a non-issue. Virtually everyone is given antidepressants. I used to say, “ well of course we're depressed. Do you think we're having a good time in here watching our friends die and losing our place in life?”
I didn't take the antidepressant so I was labeled non-compliant. I saw what happened to those who did. They lost their will to resist. And only dead fish swim downstream. I decided to live and get out of there one way or another.
I played games back at them. I made a plan to get away. I made a problem of myself, just short of retaliation. I did this at every opportunity. I made issues of incompetence and poor performance and I was punished for this.
I particularly enjoy pointing out someone’s leg may have been saved if they had done the right thing instead of the cost efficient thing, which was to put on Vaseline for five days. They said Medicaid wouldn't let them put even an antibiotic on.
With my sister's cooperation, with my sister's cooperation, I said I was going to live with her. I left and went to my sister's and then my old work van where I slept. I had a draining hole in my side for two years. A small electrical short in the van got the attention of the police one night. Somehow they were able to move me up on my section 8 voucher and I got an apartment. They can do that.
I've had the honor of being arrested for freedom. I've had the honor of being arrested for freedom and justice in the exercise of my rights to make this world a better place. So for life's sake, I wanted to support MiCASSA and Money Follows the Person.
JAQUELINE MULLINS, OH >> Hello I'm Jacqueline Mullins, and I'm from Toledo, Ohio. Originally I was from Chicago, Illinois. I'm 62 years old and I say that with great pride, not because I feel that I'm old but because I have a reason for it. I'm a survivor of domestic violence and I thought being a survivor of domestic violence was something, but it was nothing compared to the experience that I had to experience when I became a survivor of a invisible disability, what they call mental illness.
I was working in the community one year. The next time I turn around I was in a hospital. The next time I turn around I was institutionalized. To make it short, yes you've heard these stories and I know I can tell you nothing new except for the fact, coming from Willowbrook nothing has changed. Coming from Kennedy, nothing has changed. And the only thing that has changed today is that we in ADAPT, and I say that with great pride because of the fact if it was not for ADAPT, a lot of us would not even be here.
When I started out with ADAPT many, many years ago and I worked -- like I said I've been institutionalized in a mental health institution, but outside of that I think coming out I'm still institutionalized. I was institutionalized for the simple fact that I had to work in the community. I had to work in nursing homes. I had to see the abuse and I had to be quiet because of the fact that I was a client, but I couldn't tell anybody. I had to work with staff that I saw who was abusing clients, but I couldn't say anything.
I had to work out -- after I left out of the nursing home working, I went into what was called ILC, independent living center or disability centers and yet I still had to visualize abuse. I had to visualize discrimination. We are still being discriminated against.
You sit here in front of us today and you listen to us very, very patiently and we appreciate that. But you know what? The thing about it is what are you going to do with it when you leave? Because truly we have heard the stories. We know you come and listen. We know, and I had thought when some of you first got up and you was giving us your name and all this, but you didn't mention any disabilities, but the next time come around when you heard our stories, then you kindly said, “oh, you know what, I'm bipolar” or “you know what, I have this.” But those are all labels and we learn to live with those labels. We are labeled bipolar or when I was back there I was called neurotic. That was okay because I knew what was wrong with me. They called it what it was. Now we call it bipolar or we call it whatever else we want to call it and it's simply another label. It is a label so that we can get Medicaid dollars.
You know that abuse is going on. Nothing has changed. It's the staff, ombudsmen, all these things we know need to be changed. But we also know that if this change where are the dollars going? Because we know that nursing homes and all these other institutions are getting kickbacks. You're getting kickbacks. You're getting kickbacks because you're sitting here. And you're getting paid to come here. That's okay.
What are you going to do with that information when you leave here? And one thing about it is, what you don't know and what I know is that once you come in front of ADAPT, you will do something, because we will be there. We'll be there. We are going to be there.
JAQUELINE >> And another thing I want to say, as far as like, I know that a lot of things in the mental health system have changed. I understand that and that's great. But you know what? I have brothers an sisters in group homes. And group homes is another institution. Because I'm still in the community and since then I have been discriminated, I lost my job, but because I didn't have that piece of paper, I went back to school and in 2003 I got an Associate's in mental health. In 2005 I went back and just got a Bachelor’s Degree in Mental Health.
But you know what I'm still institutionalized. Because I'm a senior citizen. What the hell am I going to do with it except talk to you guys? Because you know what? Social Security dictates I only have a certain amount of hours, I only have this if I go to work full time. I lose my housing, Section 8, which is you know…. I lose the Medicaid.
So what I'm saying to you out there, we got a big fight. But you know what? We're used to fighting. These people didn't get here kicking down doors of nursing homes. I've gotten people out of nursing homes that have had to end up back in nursing homes because unlike some they don't have the family unit. They don't have the stigma.
But what I'm challenging you today, you take that information and you do something with it. If you have to kick down your Senator or whoever, like you told us to go in front of them, we don't mind doing that. But my thing to you is please take this information and do something with it.
JAQUELINE >> Oh, oh, oh. One other thing. Connie Cummings from Toledo, Ohio, was supposed to give her testimony today and Connie is from the same state I'm in and she worked and Shona… A lot of you guys know Shona and Mike. We were from the same facility and anyway, Connie was one that did survive and come out of the nursing home. I don't know what happened to her today. And also we had several people that died in the nursing home in Toledo, Ohio. That one fell down the steps. God knows how she could have fell down the steps, but she fell down the steps and died. Another was set outside in the sun. OK, she was a quadriplegic, she set out there -- so you know about this abuse. And I say get behind the administrators, get behind everybody when you can hear about because it's nothing new and you know we're being abused. End the jail system. Thank you.
PEGGY DOUGHTERY, PA >> Ooooh. I’m not used to this chair. Hi, my name is Peggy Dougherty. I don't really want to have to do this, because it makes me cry every time I hear about nursing homes because I lived in one 37 years ago. I've seen people dying in their homes from neglect. I was in a whirlpool for two hours. They forgot about me. They didn't even know I was alive. That's what they did to me.
And since I've been with ADAPT and I've met a lot of good people with ADAPT and I've learned a hell of a lot. And I tell you something, I'm going to fight until the day I die to get people out of nursing homes. And all you people, like that lady there said, I went in front of Congress that and everything else -- You sit and do and listen to us but you don't do anything about it.
You could care less about us people and I think it's wrong. And I just don't know what else actually to say, because the more I think about it, the more I talk about it the madder I get because I'm so tired of my sisters and brothers dying in a nursing home and institutions. Living in a senior citizen house, it's still like an institution. I live in one. I feel like I'm in a nursing home there. So what good is it for us to actually come and talk to you people -- if you don't want to do anything for us? And I think it's about time that youse listen to us and start doing what you ask us to do, not sit there and listen to it.
AUDIENCE >> Amen.
PEGGY >> Do what we ask you to do. Stop making us to do everything we have to do. All we want to do is be as human as what you people are. Is that asking too much? I don't think so. One of these days you're going to be in our wheelchairs or whatever, then how are you going to feel? Seriously, how are youse going to feel? Are you gonna feel the same way we will? Or are you going to let it bypass you like you are right now?
That's it. I'm done.
CASSIE >> Real quick because we're running a tad late.
CAROL NOVAK, NCD >> If we didn't care we wouldn't be here, okay? I love every one of you. I love my son. He's an only child. I have spent most of my life trying to protect him from the nightmares. These nightmares are breaking my heart. I just want you-all to know, we care. Every one of us at this table care to the depth of our soul, and I just want to make that clear. That is not -- we're here because we care.
CASSIE >> I'm sure if you hung in here all day you proved it. Let's make a change and I'm sure you're going to go back and do that in solidarity. Stephanie Thomas. There's no better way to end the day than with Stephanie Thomas.
STEPHANIE THOMAS >> You listen to the stories all day, and you look at the faces and you look around the room at each other and all of our brothers and sisters who come together twice a year and it's very hard. Part of you is crying. Part of you is laughing. Part of you is feeling very tired. And another part of you is getting energized, and another part is getting kind of angry.
For some of us, it has been literally decades that we've been fighting this fight. And you hear some people talking and you hear about how they've gotten out through our efforts using some of the programs or at least getting connected to them by our networks, and that's a really wonderful thing to hear.
But we think about these stories. I think Carol called them nightmares and I in a way I would say that's a good characterization of them. And you think about how they’re the tip of the iceberg. They're the voice for so many voices that cannot be heard because the doors are shut and you can't go outside if the nurse isn’t gonna go out with you, or somebody isn’t willing to throw a credit card out to -- that's literally happened before! Because they won't let you out if you don't have some kind of security that you’re going to be returned.
Because the fact of the matter is that for that system, what people with disabilities really are is the crop. We're the crop. We're there to fill the beds so they're “warm” beds. So they get paid. And that's what it's about. And that's what it's going to stop being about.
It's got to be about people's lives and that's the voice we’ve got to give this message this week. That's the voice that we have to bring out there.
Yeah, it's a nightmare, but I tell you something else that you hear when you listen to those stories. The people are damn strong people. You don't just go through that and come out on the other side and tell the story if you're not damn strong. Steel people. People with real, real heart and real backbone and muscle! And, yeah, maybe it's shaped weirdly and maybe you are in a different kind of shape, but that could be a beautiful thing. There's nothing wrong with S's. They're damn cool. And so are Q's and a lot of other strange shapes we come in.
Another thing we come in is we're beautiful and we should revel in those things and feel great about them. We should stop feeling ashamed of who we are and look, look at the beauty and the power that we saw today and look to that to give us strength this week.
When we wade out into the water, because from what I can tell that's what we're going to do this week, wading out into a rather wet time. But if we can lie wet in a nursing home bed we can get wet in the rain, right? At least it smells a little better.
STEPHANIE >> So let's go and take a break. And then let's come back at 7:00 and let's get ready to get going and make some changes.
CASSIE >> Thank you, everybody. Free our people!
AAPD American Association of People with Disabilities
ACT, assertive community treatment
ADA Americans with Disabilities Act
ADLs Activities of Daily Living
CART, Communication Access Realtime Translation
CBFL Center for Barrier Free Living, Houston TX
CIL, Center for Independent Living (also known as ILC)
CMS, Centers for Medicare and Medicaid Services
CNA, Certified Nurse Assistant
CVA, cerebrovascular accident (stroke)
DDD, NJ Division of Developmental Disabilities
DRAC, which is Disability Rights Action Committee, Salt Lake City UT
HCBS, Home and Community Based Services waiver program
HHS. Department of Health and Human Services
ICF, Intermediate Care Facility (includes institutional program for people with development disabilities)
ICF MR, Intermediate Care Facility for the Mentally Retarded (institutional program for people with developmental disabilities, group homes to huge facilities)
ILC, Independent Living Center (also known as CIL)
LCSW, licensed clinical social worker
MiCASSA, Medicaid Community Attendant Services and Supports Act
MSW, Masters of Social Work
NCD, National Council on Disability
NCIL, National Council on Independent Living
OVR, Office of Vocational Rehabilitation in PA
P&A, Protection and Advocacy agency
P.A. Personal Assistant, Personal Attendant
PSR, psychosocial rehabilitation
PTSD, Post Traumatic Stress Disorder
SABE, Self Advocates Becoming Empowered
SKILS, Southeast Kansas Independent Living Services
SSI, Suplimental Security Income (from Social Security)
NHC, National HealthCare Corporation
PIC line, peripherally inserted central catheter (PICC or PIC line)
VCIL Vermont Center for Independent Living