Determined Voices - End the Institutional Bias in Long Term Care

[Traveling_Home]

Earlier this year, ADAPT (Americans for Attendent Programs Today) held demonstrations in Tennessee helping local civil rights activist protests cuts and bias in Tennessee Medicaid program.

Below are people's personal testimony of their experiences being forced into Nursing Homes. May it never happen to any of us.

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"http://www.adapt.org/freeourpeople/aar/nash06/transcript.htm

HERE is the transcript of the testimony given in Nashville TN in March 2006 for the Hearing on Ending the Institutional Bias in Long Term Services and Supports. It represents over 6 hours of testimony given by real people who had to live through the experience of institutionalization. It is
absolutely gripping. It is a stark illustration of why we must get rid of the institutional bias and Free Our People!

Here is why your state should submit an application for Money Follows the Person.

Here is why we must pass MiCASSA!

The following are excerpted quotes from the testimony in Nashville. Over six hours of testimony was given on that day. The entire transcript of the testimony will be available on the ADAPT website www.adapt.org

for the exact page: http://www.adapt.org/freeourpeople/aar/nash06/transcript.htm

LATONYA REEVES >> I'm originally from Tennessee. When I was younger I was put in a nursing home that was supposed to be a Rehab center. The abuse I received was one day I had an accident and the aide made me wash my face in it...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. 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 "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.

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. ". 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. "

Diane Scotin GA >> They kept me in a lock-up for an eight by eight and I had to use the rest room, 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, the 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 it actually 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.

Ed Hahn -- 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.

John Gladstone -- 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. . 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.

Barbara Heinz -- 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... so I'm not letting nothing hold me back.

Dawn Green from Milwaukee, Wisconsin >>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, . 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.. How about now? 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.

Mike Clark >> As I look back, I can remember the only people who told me about my options of living outside the nursing home was my friend and advocate from independent living resource center. Without the option to live at home I might be dead or worse. I'm alive and very well.

Kurt Breslaw - I spent 7 years in a nursing home. It was a corporate government center. . Now I'm out and I'm going to stay out.

JT TEMPLETON >> I lived in for 30 years. In a State School. I got out because, because of a suit! . After I got out, I live in my own house.

Daniel Remick >> I am 58 years old. I was institutionalized at 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 physical ability to do normal activity. Which it was a lie. . I
was sexually assaulted by an aide there.

Teresa Grove >> I'm from Illinois. I am emotionally and mentally disabled. I've been in an institution since I was 14 years old.. 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 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.

LARRY RUIZ >> 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 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.

Steve Schaefer >> Without insurance and not qualifying otherwise for assistance she needed to live there in order to stay alive. There was no choice. .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.

Jamie Ziegler >> 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.

Michelle McCandless >> 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.

Carrie Fowler >> Shady acres 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?

Angela Miller >> 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.

Carol Jones >> I have worked in institutions and nursing homes for over 35 years. 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."

Mike McCarty >> I was there for seven years and did a whole bunch of things there, very active, but there was like invisible bars at the doors, just like you can - you can only go so far until, like, some one sees you leaving and, oh, mike's leaving, you know, so they come out and tell you to come
back.

Glen Barnhill >> Sitting in my chair, I usually do pretty good 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 .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 for anyone.

Linda Merkle >> 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. 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.

Sarah Wendell >> I have a psychiatric disability called multiple personality disorder. I was in and out of institutions for 3 years.. 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.

Sarah Wendell (should we omit this?) >> I was not allowed to leave without supervision. The basic civil rights I had 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. Samuel Mitchell >> I was an ordained minister and also a truck driver who became disabled. I had a ministry to nursing homes. I went in nursing homes and preached. I thought I knew a little bit about them. After becoming disabled, a year later I suffered a stroke. That's when I entered a nursing home, and I found out just how much I didn't know about nursing homes. The prevailing atmosphere in nursing homes is that we now own you. We own you and everything about you. You become a non-person. Your rights, human rights and civil rights are routinely violated. Dignity, there was no dignity. 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.

JIMMY >> . from Four Corners area, Farmington New Mexico... I was brutally beaten on March 12, 2001.I was . with a closed head injury. 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.. Which I can relate everybody that's been up here that these things do happen. And I complained a lot but they said, you've got a brain injury, you don't know what you're talking about.

Spitfire >> 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? Stage 4 bedsores, rape and torture sound familiar? I don't call it oxygen stew for nothing. But I live independently now... I was rescued by a friendly visitor with an ADAPT T-shirt. I love living on my own. ... I'm a good 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. . Nancy Salandra said I was at death's door. Well Nancy, I block doors.

NATIONAL ADAPT MAILING LIST - Adapt MiCASA List http://www.adapt.org

[deek]

1. NEVER eom

.

[ThomCat]

2. I've told my family and friends

that I'll die before I go into a nursing home. I've seen too much of the abuse that happens there. I've heard even more. I won't turn my life over to uncaring strangers that way.