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ADDITIONAL INFORMATION
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Bonita Manard's Story: Freedom At Any Cost
I was abused more and more as my condition deteriorated. I observed the same of those mentally or more disabled. In other words it is commonplace to hire those of very little compassion, even less empathy, who are not well trained; pay them meager wages and expect them to care for our neediest citizens. Not only do they tire of us quickly, but expect ourselves to accommodate them. I thought I was the one who could not walk, talk or feed myself. Why did the C.N.A.s keep talking about making it easy for them? The administrators searched my purse while I was dining. They intercepted mail and phone calls from family, friends, doctors and even agencies that were attempting to help me re-establish myself in the community all over again. I was denied my right to make phone calls. Once I had been approved by DHS for services, they even told Options CIL that I was no longer in their facility. I had $ 1400 stolen in cashier's checks. I am so happy I learned about Options. They helped me by purchasing furniture, food, appliances, linens and paying my rent. Now I go whenever and wherever I want. I am able to pursue my recovery by eating the foods recommended to clean my body. I even have the equipment to assist with therapeutic exercises. Much the same people work as personal assistants, but I am able to pick and choose those most suited for a speech handicapped person such as myself…Some that can spell and have enough patience to grab my spelling board. Now I have hope for the future." Note: Ms. Manard has been diagnosed with ALS, and is totally dependent on others to assist with her activities of daily living. Through the use of a lap top computer and a straw in her mouth---every word was typed by Ms. Manard. Ms Manard has been out of the nursing home now for almost eight months. During the time that I have worked with her, I've never known her to not have a smile on her face. Even in silence, she speaks eloquently for people with disabilities. [RETURN TO LIST OF STORIES AT TOP] Clifton's Story: A Long Journey
to Independence June 1, 1998 is a day that Clifton will remember for the
rest of his life, The wann summer day turned tragic for Clifton when
he was the recipient of 3 bullets to the back. The culprit was his best
friend. The motive, a drug deal that turned sour. Clifton was an 18 year old drug dealing member of the
notorious Vice Lords, a ruthless street gang based in the Chicago area.
A dispute over drug money left Clifton laying on the hot asphalt as
he fought for his life. The world he knew for 18 years would never be
the same. After spending 3 agonizing weeks at Northwestern Hospital in Chicago, Clifton was transferred to the Rehabilitation Institute of Chicago (RIC). While at RIC, Clifton began to see the world from a different perspective. He was now paralyzed from the chest down and a motorized wheelchair became a substitute for his once young, strong legs. Clifton's tour of duty lasted 4 months at RIC and with no place to go. His new home would be The Atrium Nursing Home in Chicago. Living with roommates that were more than 3 times his age, Clifton felt alone and isolated. After a year at The Atrium, Clifton moved in with his father. Physical and verbal abuse led Clifton back to the nursing home. While at the Atrium, Clifton met a nurse's aide who had ties to the Champaign-Urbana area. His next journey would lead him to Manor Care of Urbana. Although Clifton received good care while at Manor Care
he knew that a nursing home was not the place for a 23 year old to be.
His activities were limited, he had to eat and bathe at designated times,
and his self-esteem was minimal. Clifton dreamed about having his own
place and regaining his dignity. That dream became a reality when Clifton,
who was participating in PACE's Reintegration Program, moved into his
own apartment in August of 2004. His apartment in Urbana is the first place that Clifton can truly call his awn. He is happy, healthy, and independent. Now 24 years old, Clifton is able to live as he pleases and has learned to live life to the fullest despite his disability. When asked what advice he would give to youngsters who may be headed down the wrong path Clifton claims, ''I'm a living example of someone holding a grudge. The gang life is a dead end road. I'm lucky to be alive. Some of my friends weren't so lucky." [RETURN TO LIST OF STORIES AT TOP] Deacon Calvin Brandon's Story "Hello everyone. I am here to share my experience of how I lived in a nursing home. And to share some points and issues with you all of how it was in there, and how I escaped.
Nursing home care is not really what you think it is, because everyone that works in a nursing home doesn’t care as much for you as you think they should. Nor do they do their jobs the way they should be done. For instance, some residents are not cared for at times due to the lack of professional nursing care. I have experienced abuse towards residents mentally and physically. I have known about the different types of the foods that are served at times is not suitable for anyone to eat. I have experienced very much so lack of care in the house keeping department who were supposed to keep the nursing home clean. There are bad odors constantly coming out of most of the rooms and the hallways are always filled with odors and germs due to lack of cleaning the linen is always piled up in the hallways. This is unsanitary. My worst experience in the nursing home was when nurses don’t answer their call lights in the time of emergency. Sometimes call lights will ring hours at a time before anyone would answer. Friends of mine have passed away due to this kind of treatment in the nursing home. The way this nursing home treated residents made me very angry. So I took charge with the help of the Lord and started calling the health department and every one else that I could think of so that they could come into the nursing home and see for themselves how people were really being cared for and treated. People starting coming in and examining the whole facility writing up all the violations that I told them about.
But, still I thought this was no place for me they did not do anything but talk to the administrator and they left. Everything went back to normal, still nothing was done. I took it upon myself to seek for outside help, calling all types of agencies “Thank God” and I found the Progress Center for Independent Living. I tell you, when I came in contact with such a wonderful group of people. Who I never knew of . They showed me that there is a way out. So immediately I accepted the challenge to make my way to be broken away from the chain of nursing homes. I escaped with the help of Progress Center. They provided me with all the tools and funding that I needed to get me back in the community to live as a human being again.
I thank Progress Center today, and everyone that is involved, I thank you all as well. One thing more, Progress Center more importantly helped me with getting my personal assistant who is doing a very great job Look what my assistant does in my house for me, Look at this list: She prepares scrumptious meals, (down home cooking); he monitors my daily medication unlike the nursing home; I have great smelling clothes, unlike the nursing home. My house always smells pine sol clean (unlike the nursing home); I can bathe or shower whenever I want to. I always have fresh towels and clean linen, unlike the nursing home. I don’t have to worry about pulling on a call light for some nursing staff that is sleeping in the next room. Or through the horror of hearing a resident screaming for help at night. Now I have my life back Thank God, my own apartment. I can go and come as I please. I ESCAPED INSTUTIONALIZATION! I ESCAPED THE NURSING HOME. If I DID IT, YOU CAN DO IT. A MESSAGE TO THE WISE. ALL THOSE WHO HAVE THE POWER TO HELP THOSE LIVING IN THE NURSING HOME JOIN THE FIGHT NOW TO WIN THE VICTORY OVER INSTUTIONALIZATION." [RETURN TO LIST OF STORIES AT TOP] Debbie Pollo's Story "In September of 2003 I ended up in Hillsboro Hospital because of Hepatitis C and Diabetes. Two years prior I had a small stroke which affected my left side and I drug my left leg when I walked. My family decided to put me in Montgomery County Health Care Facility Nursing Home. It was okay, but I was only 46 years old and the youngest one in the health care facility. In February of 2004 they decided to put me in isolation because of Hepatitis C, the facility was not set up for this. I was put in a one bedroom with a commode and old TV, but no other bathroom facilities. In the adjoining room there were two men and no locks on the connecting bathroom door. They had Alzheimer's and were very mean. I felt despaired and alone. Against doctor's orders I decided to sign myself out. My mother picked me up and I went to Barnes Hospital in February. All the tests were run and meds were given to me. Dr. Krippin suggested I find another health care facility for the time being. I worked at Sunshine Manor in Carlinville, Illinois as a teenager. My mother and I contacted a friend and I was lucky enough to get in. I went to stay is now called Carlinville Rehab and Healthcare. I was 46 and in a nursing home and felt like the world was coming to an end. It was a very hard thing to accept, especially with my parents believing I'd be living there the rest of my life. My children moved to St. Louis with their father, so I wouldn't see them.That was the lowest point in my life. What was God thinking? I wasn't old and ready to give up. As a Christian I was taught that God wouldn't give us anything we couldn't handle. On a positive note, my diabetes was being treated and my hepatitis was now being treated with injections. I made a lot of new friends and it felt more like a family. But the love as a family unit was shared and tried to make it like a home. A lot of them have passed on now, but it gave me a different outlook on life. I was still the youngest one at the nursing home, but I realized that there were people worse off than me. A year or so went by; Carlinville Rehab hired Lori as Director of Nursing. I had gone into remission at this time and my diabetes was under control. With the help of a physical therapist I was able to start walking with a cane. Lori asked me what I was still doing in the nursing home and when I was planning to go home. I informed her that I had no home to go to. Lori mentioned Impact to me. Lori and the Social Director set me up with a meeting with Mickey which at that time was the PA Coordinator. My health had improved; thanks to all prayers my hepatitis was in remission I could stop all treatments for the hepatitis. By the grace of God I finally saw a light at the end of the tunnel. I called my parents and children. I have a son and a daughter. They told me they didn't see any way of me getting out or gave me any hope. My parents were against me moving out. I was alone and you lose touch with the outside world when you're in this situation. Mickey from Impact came and interviewed me. Next thing I knew, I was going to be released in 2 or 3 weeks. Mickey informed my Impact would set me up with an apartment with everything I needed. Then the day came, I was dropped off at my apartment from the healthcare facility that became a friend of mine. She left my clothes and the rest of my belongings. That consisted of a cover, pillow and a boom box. My phone and utilities were turned on. Impact paid all connection fees and deposits. I even had three months rent and the deposit. I was thanking God and listening to my boom box on WIBI. Next thing I knew I had my first visitor; it was Mickey and visitors from Impact. The guys brought in the furniture and I couldn't believe it. It was all brand new. I just sat on the floor in my living room and saying, "Oh my God" and "Thank You" over and over again. The guys set up the wooden table and chairs in the kitchen. Then the living room, not just a couch, but a chair, ottoman, table, lights and TV. Then the bedroom, a queen size bed, large dresser, nightstand, chest of drawers and lamps. They left and said they'd be back. I couldn't imagine what else they could do. Mickey and the gang came back with everything from A to Z for the house, including groceries. I was set up for at least two or three months with groceries, cleaning products and personal hygiene items. I sat down and cried about the overabundance provide by Impact. Mickey treated me as a friend throughout my transition from the nursing home to the community. Ten months later, Leslie took over my case load. He was very caring and friendly. Impact caseworkers are like the close cousin you know you can call and talk to when your feelings are down. They were a Godsend. Impact also let me hire a caregiver. I hired Marian May and become good friends. A year later and life is still a whirlwind. I broke my ankle a year ago and am still cannot drive. When God closes a door, he opens up another. When it's His time it will beyond your wildest dreams. I almost gave up and ever living a normal life again. Here I am 49 years old and starting over. Little things like staying up until 1 a.m. or getting up whenever you want doesn't seem important when you're on your own, but when you're in a health care facility you miss your freedom to do what you want whenever you want. Impact help me get my freedom and independence but mostly my life back. I'm now living on my own. My thanks to Impact. My family is finally accepting my life and is happy for me. I even got to go to my daughter's wedding in March of this year. My son and his wife had a little girl March 24th and I even got to be there. Life is amazing and I appreciate everything so much more now. I hope to be able to go back to college and find a job. Life is just a adjusting to new things every day. Thank God for Impact and the workers, they made my dreams come true. [RETURN TO LIST OF STORIES AT TOP] Grant Lassen's Story: The Importance of Effective
Communication "He did not want me to go home. He wanted so badly to get out," Donna Lassen said as she recalled her daily visits to her son, Grant, while he was in three nursing homes in four years. Every time she saw him, she could tell by the look in his eye that he wanted to leave with her. In July of 2000, Grant's life dramatically changed when he was robbed and beaten so badly that the only body part he can now control is his left hand. He also has a cognitive disability that limits his speech. After undergoing extensive brain surgery and being in a coma for four months, Grant was forced to enter a nursing home because his residence was inaccessible and his financial situation allowed for neither a move nor modifications to the house. After his release from the hospital, Grant and his mother had hoped that his stay at Continental Care in Chicago would mark the beginning of the road to recovery. But Grant could not communicate his needs or desires because the home was not equipped with the necessary tools such as a spelling board. Instead of manually feeding Grant, the staff chose to insert a feeding tube, which they claimed was for his own protection "because he had a choking problem." At one point during his stay, Grant developed the ability to bend his knee to a certain point, and as a result, doctors decided that surgery would help him be able to fully bend his knee. Following the operation, Grant was hooked up to a machine that kept bending his knee so that it would not stiffen again as it healed. But more often than not, when Donna would visit her son, the machine would be unplugged. Unfortunately, the knee stiffened again. "I cannot blame [Continental Care] directly for the fact that Grant's knee stiffened again, but I can say that they played a role, because whenever I would go to visit him, the machine was unhooked. I confronted them about it, but nothing ever changed." Grant was transferred after six months to Glenbridge in Niles, where he stayed for a year-and-a-half. While Donna had hoped Grant would be treated better in his new surroundings, conditions only worsened. Once again, Grant was not provided with an effective means of communication, and was forced to holler when he needed something or had something to say. Instead of working with Grant to figure out what was on his mind, staff members abused him. "Grant was hollering quite a bit and the staff got tired of it. When I asked Grant's roommate, who is blind, what he saw, he said he was locked in the washroom prior to the incident," Donna said. "I asked Grant what happened, and he said he was punched in the cheek." And so, yet again, Grant was transferred-this time to Forest Villa in Niles. The staff there wanted to calm Grant down and stop his frequent hollering, even without the provision of an effective means of communication. Donna agreed to let them give Grant tranquilizers for a period of six weeks, under the condition that if they did not work, they would be discontinued. "The medicine did not work, so they discontinued it," Donna said. "But then, I would go visit him, and he would act weirder and weirder to me. He did not even know who I was and would just sit there with his head drooping," she added. "I asked them what was going on and they said he had been given another medication-one I did not even know about and to which I did not consent." Grant, now 45, always wanted to live in the community. His partnership with Access Living helped him achieve his goal. Donna first contacted Access Living in 2001, but the process accelerated in 2003 when the Deinstitutionalization Coordinator gave her a Section 8 Application and helped locate apartments; however, there were still many barriers to overcome. For example, the landlord did not like the fact that they were on Section 8, but with some persuasion, Donna was able to convince him to let them move in and make necessary modifications. "I liked the first place I saw, but we had to make it accessible," Donna said. "Grant needed ramps to get into the apartment, as well as a door that was wide enough to fit his wheelchair and could swing away from him. He also needed a roll-in shower," she added. Donna contacted the City of Chicago Mayor's Office for People with Disabilities to install the new door and the ramps. After much hard work, the apartment was ready late the next year. In order to live independently, Grant also needed a personal assistant, which he found through Access Living. Today, his personal assistant helps him reap the many benefits of community living. "Paul takes him to restaurants everyday for lunch, so he gets out to see the world," Donna said. "He was never allowed to go out when he was in the homes and only participated in social gatherings if I took him." The other major portion of Grant's success in living in the community is that he now has a spelling board that helps him communicate his thoughts to those around him-a stark contrast to the situation in the homes, where he was trapped because he could not effectively correspond with staff. "Any way you look at it," Donna said, "he can now enjoy life without the threat of being mistreated or abused. What is most important to me is that he is happy, and he never felt that way in the homes." [RETURN TO LIST OF STORIES AT TOP] Heather Knowles' Story "My name is Heather Knowles, and I have been disabled since birth with spina bifida. At the age of 28 I was working for the Mayors' Office of People with Disabilities and living in a group home located in Chicago. Unfortunately the private owner of the group home had no emergency contingency plan, and her sudden untimely death forever changed the lives of her eight residents, three of whom had full-time jobs. I was told there was no place for me to go so I was "temporarily" placed in a nursing home. Over the next eight years I lived in six different nursing homes, finally being located at Kankakee Terrace in Bourbonnais Illinois. I had lost contact with my family and relatives during this time as well as my friends from the group home. In early 2000, I started to attend the peer support group at Options Center for Independent Living, with a goal of leaving the nursing home. In the early days, my isolation from the community was obvious, and I had to relearn simple social skills such as trying not to talk when others were talking, and learning to control my temper. In August 2000, I was reintegrated into the community through Options Community Reintegration Program. In the early days, I received 7-8 hours per day of personal assistant services through the Home Services Program to help me adjust to independent living and assist me with activities of daily living that I was unable to do because of my disabilities. About 8 months later, fearful that I would have to return to a nursing home, I failed to seek timely medical care which could have resulted in serious repercussions for my health. When I told a staff member at Options of my symptoms, she talked to my case manager and he called me and advised me that I should make an appointment with my doctor as soon as possible. The very next morning, I was in the emergency room at our local hospital and was being prepared transfer to Chicago for emergency surgery. After my surgery, my case manager came to Chicago to visit me in the hospital. He told me that the only way I would ever have to return to a nursing home is if I didn't take care of myself and my doctors and other caregivers felt I was not able to live independently. From that day forward I have ensured that my health is a top priority. Over the next six years I have enjoyed much success. My father's death has more than doubled my income, and
I will now seek housing outside of the subsidized housing at the local
housing authority. I feel that moving will allow someone with a greater
need to occupy my accessible low income apartment. I have been to Chicago and Springfield with my case manager to help advocate for the Community Reintegration and Home Services Program. Why? Because it has made an impact on my life, and I don't think all people with disabilities should be in nursing homes. In August 2006, I will celebrate six years of independence. My life has changed and I am happy to be a success story of the Community Reintegration Program at Options Center for Independent Living. [RETURN TO LIST OF STORIES AT TOP] Keith's Story "On August 1, 1981, I moved to Macomb, IL to my first Group Home/prison. I worked at a place called McDonough County Rehab-Center. At the workshop, I buffed bearings; I have no idea what a bearing is but you have to be well dressed for it. The people at the workshop would make fun of me and even the people at the group home would too. Several times when I would get to work, I had to take a shower because the place I lived at was five to seven miles a way. At that time I had lost a lot of weight but I didn't mind. In Sept.1, 1982, I fell in love with a good-looking girl and asked her to marry me. She said yes: but my parents said, "no". In fact, they moved me to a place in St. Paul, MN to another group home where the people I lived with were supposed to be Christian people. But the only people they wanted to help were themselves not the residents. Since I didn't have any money and they were going on vacation, someone that they went on vacation with asked me if I would like to go on the trip with him and I said I would. But the people other than the man who paid for my trip made fun of me. They treated me like I was five or six years old. One time, the people I lived with in St. Paul sent me to another group home. At this group home, I had gotten first, second, and third degree burns on the back of my legs. Do you know who had to pay for the hospital bills?? I did. In 1986-87, I moved to a place in Galesburg, IL. For a year and a half, I couldn't go anywhere unless I was with a Staff member and boy did I hate that. In 1999 I got to be on my own. Although, in 2004, my blood pressure went SKY -HIGH and I was taken to a hospital to help control my blood pressure. Then, I got put into a nursing home. I thought I hated a group home and then realized I didn't care for a nursing home either. I have been with Stone Hayes CIL for at least six or more years. And I enjoy being with them. They have helped me in so many ways. I am now living in my own apartment here in Galesburg. I'm ready for my next speech." [RETURN TO LIST OF STORIES AT TOP] Kristy L. Svoboda's Story: Ready, Willing,
and Able! "Hello!! I'm writing this today to tell you a little about myself, and the things I've experienced in my life. I'm 28 years old, and have spina bifida. For anyone that doesn't know what that is, my spine never formed right before I was born, and there was nerve damage. There are different levels of spina bifida, the higher you go up on the spine, the more severe the disability is. Mine is fairly low on my back, so even though I'm in a wheelchair, it's not as bad as it COULD be. People with spina bifida are known to have a lot of health issues, and I am no exception. I've had a lot of surgeries in my life, 40 to be exact, and even though some of my past has been a little difficult, for the most part, I've had a pretty good life so far. About three and a half years ago, I ended up in a nursing home, due to my depression. I was told by someone on the computer, that the medicine I take for seizures also helps depression. I found out the hard way that it doesn't always work the way I was hoping it would, especially if you don't take it the way it was prescribed. I had several seizures that day, and ended up in the hospital. Just before I was to be discharged, I was told that I would have to find somewhere else to live because of the problems that I had caused for my family because of this incident. I was extremely confused, and had no idea what I would do. My doctor at that time said that the best choice would be a nursing home. He gave me a couple options, and I picked one, after a short stay at a psychiatric hospital, I was on my way. I chose a nursing home in Toluca Illinois, which was close enough to home, but far enough away, that no one knew me. What a relief, or at least that's what I thought, boy was I wrong! I found a few people there that I thought I could trust, and I told them some things about myself that I had never told another human being. Before long, it was all over the facility…….so much for trust! My depression started to become unbearable at that point, and just when I thought I couldn't take anymore, exactly two years later, my roommate, at that time, had some visitors. They turned out to be staff from a nursing home here in my hometown of Streator. I asked them what I had to do to be taken to live at their nursing home, and they told me. Within a couple days, I was ready to leave and start another chapter of my life. For a while everything was fine. I had a couple new friends, and since I'm an animal lover, I instantly fell in love with the nursing home dog, Pepe. He became one of my closest friends, and was even helping me with my depression. Before long, Pepe became my ONLY friend there, because, once again, stories and rumors about me had been passed along throughout the entire facility. I began to seclude myself, and stay as far away from everyone, other than Pepe, as I could. My depression became increasingly worse until I was almost positive I was better of dead, than alive. I started sleeping all day and staying in my room all the time, only coming out for meals. Then, exactly two years later, I decided that I had had enough! It was time for a change. I needed to take control of my life and do something to better myself and my situation. I decided then and there that I was ready to move on. Not to another nursing home, I REALLY wanted, and needed to be the one in control of my life, and the only way I could do that, was to get a place that I could truly call home, my own apartment. I tried looking in the newspaper for something I might be able to afford, but had no luck. There wasn't anything around that was affordable AND accessible. Once again, I began to loose hope. Then IVCIL staff and my mother suggested the government housing. My mother and I went to their office in Ottawa, and I filled out an application. I waited and waited to hear from them, and even called them every couple weeks to see if anything was open here in Streator. I got the same answer every time I called "No Ms. Svoboda, nothing is open. We will call you when we have something." I waited and waited for 6 long months, then suddenly one day, I got the call I'd been waiting for. There was finally an open apartment that was accessible that I could go look at! I went to look at it, but knew before I got there that I would take it! Within two weeks I was ready to move out of my nightmare, and start living my dream…….independence! I moved out of the nursing home on July 1, 2005. For a while after I moved, my mom, who has also become my friend, helped me with the things that I need help with daily, even though she had a busy life of her own, and a business to run with my dad. Soon I knew that in order to be as independent as possible, I had to find someone other than mom and dad to help me live my new life. Since I already knew about IVCIL, I gave them a call, and the PA coordinator sent me a list of people who could be possible aides. As soon as she sent me the list of personal assistants, I made my first call. That's when Brenda came into my life. I was so nervous I could hardly stand it; I had never interviewed or hired anyone before. When she came over and we started talking, all of my nervousness suddenly disappeared; it was almost like I was talking to someone I'd known my whole life. I found that I could talk to her about anything, even things that no one else understood or would even try to. I knew right away that I didn't have to call anyone else; I had found the PERFECT aide, someone I could be myself around. I can joke with, laugh with, cry with, and not feel like I have to pretend to be what I'm not, someone I don't have to feel that I have to impress, or be perfect, for them to accept me. Not long after Brenda started working for me, I decided that I wanted a pet. Animals love unconditionally, and that was exactly what I needed! That's when I found an ad in the paper. FREE KITTENS ! I called the number and the woman that answered said she'd bring the kittens for me to see so I could pick one. I thought they all were adorable, but when the little white one with the dark greyish/black tail fell asleep in my shirt, I instantly fell in love!! Since I've been in my apartment, I've had several hospitalizations and surgeries, and many other setbacks, but with my new found freedom and independence, and my new aide and friend, I know that no matter what life throws at me, I'll be just fine. I also know that if I ever have any problems or questions, IVCIL will always be there. Thank you for taking the time to read my story, and thank you, IVCIL, for giving me the chance to share my experiences, and for always being there when I need your help. By the way, everyone at IVCIL, thanks for helping me get my washer and other things that I need to become and STAY independent!" [RETURN TO LIST OF STORIES AT TOP] Mark's Story: Setting the Record Straight "Being in a nursing home is like being a lion in
a cage who is starved for food. If the lion eats the zookeeper, the
lion is blamed. But what was he supposed to do? He needed to eat and
was not given any meat. Just like a lion in a cage, when you live in
a nursing home, it is as if you are starving." He had hoped for a chance to become more independent, but his vision was far from the reality. Upon entering each home, Mark was interviewed by doctors who made a judgment about his capabilities. "I was diagnosed as violent, and this limited what I could do during the day," Mark said. The routine seldom varied. He would wake up and eat at the same time every day; he always ate in his room and with his roommates. He never ate alone, and a doctor or a nurse always gave his medication to him despite his desire to administer it to himself. "They claimed that it was against state law for me to take my own medication without a doctor's note saying that it was acceptable." He was also limited because nursing home staff, who-in his view were just there to earn their pay-often assumed that what doctors wrote was final. This set him up "for failure." "I was told by an ambulance driver that emergency personnel, when transporting me, were paid off to confirm the diagnosis of the doctor, even if it was not accurate." Although staff often limited Mark's independence, some staff members "listened, explained, shared and suggested information." He recalled one instance where a nursing home was not meeting state standards. With the help of a staff member, Mark called "a state agency that exposed and corrected the violations." Compounding Mark's discontent in the nursing home was the realization that suitable educational opportunities were not available. The only programs available inside the nursing homes were those that required little to no thought. The interaction among members in the group "was at a grade school level." In addition to the lack of educational opportunities in the nursing homes, employment opportunities were also scarce. Mark did not find any work until he was in his last nursing home, where Jewish Vocational Services offered him employment with a stipend. "The work was piece work, meaning that I was only putting things together, or loading and unloading machines as would be done in a factory setting." Further control was exerted over Mark's life in that, with the exception of thirty dollars that he could spend as he saw fit, his Social Security check went to the nursing home. Mark said that sometimes he would spend some money to buy a newspaper, but the headlines were not that important as he was too focused on what was happening to him to pay attention. Mark was isolated not only from the headlines, but also from his family and friends as well. "Most of my immediate family is deceased and I did not know where to find those that were living. The only contact Mark had with people outside of the nursing homes came when family members and friends of other residents with whom he had no emotional connection visited. "It is my style to have very few friends. And when the relatives of the other residents came in, they did not seem very happy about being there, so it did not make for a very uplifting time." When he was in his first nursing home, Mark diligently studied the rules and regulations governing nursing homes. Independent study led Mark to recognition of his rights as an individual. "After studying and asserting my rights, I knew that the path to independence involved getting people to understand my rights and feelings as well as creating my own record of behavior." Mark knew he needed to set the record straight. Unfortunately, before leading to independence from nursing homes, the path led to five more nursing homes. He was kicked out because he "did not fit in with the pre-judgments of the staff" and was left with no place to go. He eventually wound up in another nursing home. Mark's road to independence was traveled alone and the largest barrier he faced was that the traditional relationship between doctor and patient, which requires honesty and trust, was nonexistent. At first, self-recognition of Mark's rights resulted in his placement in many different homes, because the various staff felt as though he was not "subservient" enough to them. Rather than work with Mark, the nursing homes transferred him to other nursing homes. But eventually, his determination prevailed, and he is now living in an integrated setting in the community. While he was in his first nursing home, Mark heard about Access Living (AL); however, it was not until the fourth nursing home that a friend referred him to AL's Housing Counselor Pearl Matthews, who directed Mark to AL's Deinstitutionalization (Community Reintegration) Program. With the Deinstitutionalization Program, Mark began the process of integrating into the community by setting up appointments with doctors and qualifying for the Department of Human Services Home Services Program, which covers across-the-board needs like rent and utilities. Mark recalled that the doctor was surprised it took him so long to get out. "He said I was way overdue," Mark said. Although things looked to be getting better, there was another hurdle to jump. The social worker at the nursing home tried to withhold information, claiming that Access Living had not properly submitted the forms. Mark believed that the information had been withheld for a different reason. "The social worker had a personal problem with me in the past, and wanted to make my life as difficult as possible." Access Living made sure that the information was submitted correctly and the social worker finally released the required records so that Mark's application could be processed. Mark worked the phones for six months, getting on several waiting lists. But as he was waiting for his Section 8 Application to come through, a golden opportunity arose when a friend told him about a newly constructed development in which she was going to live. He was offered housing there and quickly accepted. Now that he lives in the community, Mark faces challenges of a different character. He is often stereotyped and labeled as incapable simply because he was in nursing homes. He hopes to attain more knowledge; at the same time, he realizes that "because government aid is currently at a premium, more education may be out of reach." While preparing to pursue a greater number of employment opportunities, he is working part-time as a Staff Associate at Access Living. Challenges aside, Mark says his "state of awareness is heightened" and that his independence has greatly increased since he began living in the community. When asked what independence means to him, Mark said that it is "the ability to depend on that within. When I pursued independence, the nursing home staff told me, 'that's not the way we do things here.'" Now that Mark lives in the community, he is free to pursue independence in his own unique way, without anybody stopping him from achieving his goals. [RETURN TO LIST OF STORIES AT TOP] Myra Meyers' Story Myra Meyers is a 57 year old Danville resident who resided in a Nursing Home for several months before deciding she was ready to return to the community and live independently in her own home. The Reintegration Program assisted Myra with rent and deposit, bought new furniture and appliances, and purchased groceries for her upon her release. Myra is happy to be in her own place and jokingly states, "I'm no longer an inmate." She said she feels the program is a "Godsend" and that she would not have been able to afford to move without the assistance of the Reintegration Program. Angela Pankey who is the Human Resource Director at Danville Care Center has worked with PACE to move several residents from the nursing home back into their communities. "The Reintegration Program is a vital part of discharge planning concerning younger residents at Danville Care. There are not a lot of options available when looking to discharge a resident who needs various forms of assistance. I think the Reintegration Program is wonderful and is a great resource for the community." [RETURN TO LIST OF STORIES AT TOP] Nedra Abernathy's Story "The program [The Community Reintegration Program] is absolutely wonderful!" states Ruth Abernathy. Ruth's daughter Nedra was involved in an automobile accident a little over a year ago and after a short stay at the Rehabilitation Institute of Chicago she was discharged to Danville Care Center. Nedra was fearful that she might not be able to move into her own place due to financial restraints. Her family was very supportive, and with their help as well as the Community Reintegration Program Nedra moved into her own apartment in August of 2002. She is doing terrific and when asked about the program, Nedra's response was, "It's great. I love it! It would have been difficult to move without the assistance the program provided." [RETURN TO LIST OF STORIES AT TOP] Norman Bethea's Story: 180 Degrees of Separation "If you have compassion, you will shut down the nursing home industry forever," said 62-year-old Norman Bethea. Norman had a stroke in 1999, lost consciousness, and when he woke up, he was in a nursing home. This event marked the beginning of a four-year and eight month-long period in which Norman spent time in two nursing homes. First, he was at Alden-Princeton nursing home until he requested a transfer in December of 2000. He spent the remainder of his time at the Renaissance at Midway. Prior to the stroke, he was a satellite television salesman who lived alone and did not use a wheelchair. In both of the nursing homes at which Norman was a resident, the routine seldom varied. He often watched television and could go out only on occasion during the summer. He could neither eat alone nor dispense his own medication. "I had no privacy. For quite a while, I was in a room with four people. There were two options for watching television. I could either watch with a large group in the sitting room, or watch in my room. In both situations, I had to watch what other people wanted." During Norman's short stay at Alden-Princeton, he said his family and friends came to visit him. But after he transferred to the Renaissance at Midway, no family and friends saw him because he could not inform them that he had moved; his access to phones was very limited. The only interaction Norman had with people outside the nursing homes came when he would go outside. "I went out every chance I got, because I very much enjoy meeting people. But I was only allowed a certain amount of time per day." Aside from the lack of interaction with people outside of the nursing homes, Norman-who completed two years of college before the stroke-said that in both nursing homes, suitable educational opportunities were not available. "I chose not to be a part of the educational programs because they consisted primarily of activities relating to hobbies and crafts, which did not appeal to me." Norman also said that there were no employment opportunities to which he could contribute. Norman believes that his troubles at Alden-Princeton began when he was subjected to an unnecessary operation. Norman was told he needed surgery to fix a breathing problem. He did not want the surgery. The doctors kept insisting and denied Norman a second opinion. Finally, before Norman even signed any consent forms, they forced him into surgery, telling him "it was an emergency." Norman still contends that it was not necessary, adding that it did no good and only created a ticking sound in his chest, which was a constant source of annoyance. Norman also felt mistreated at Alden because they discontinued a program that allowed him some contact with people outside the nursing home and that he thoroughly enjoyed. "They used to take us out once a year to go to Mayor Daley's picnic. I do not know why, but they all of a sudden just stopped. It was a good program." The only money Norman had was the $30 per month that came from his social security check. The rest of the check went to the nursing home. While it was supposed to be for him to spend as he saw fit, he remembered the staff trying to coax him into spending it on a group trip. "They wanted to take us to the Dollar Store. They told us to spend $30 there on whatever we wanted, as if we should be excited about the Dollar Store just as if it were some kind of shopping spree." That was the straw that broke the camel's back, and in December of 2000, Norman was transferred to the Renaissance at Midway. Although he had hoped for better fortunes with a change of scenery, the downward spiral continued. "The staff would steal from me. But then, they would buy me shirts and pants to make up for it. That made no sense." Norman said the staff also used laundry detergent that was too harsh on his clothing. He complained to no avail. "I have many pairs of blue jeans that are now white because of the detergent," Norman said. "The staff did not care how your clothes looked; they bought the cheapest product available. The problem only got worse when I complained." Not only did the staff steal from him and ruin his clothes,
but Norman said that they were "discouraging" and "gave
[him] hell." He recalled an instance where a physical therapist
dictated his treatment schedule, or lack thereof. "I would go into
the room and wait for physical therapy, but she would say 'Norman, you
do not need it, you are alright,'" Norman said. "I was supposed
to have therapy for one hour per week, and when I confronted her, she
even told the other therapists not to work with me." Under these difficult circumstances, Norman was having a very hard time. He knew that his experiences were shared by other people in nursing homes and wanted to make things better for them. "Nursing homes have a tendency to make people feel as if there were no hope. But it is impossible not to have hope," Norman said. "People were not being treated right or given their just due. I wanted to get out because I did not want anyone else to suffer what I suffered." Asked what carried him through the difficult period of being in a nursing home, Norman said he was glad he had access to daily newspapers and television newscasts. Despite the often-depressing nature of most stories, these were a constant connection to the outside world and a recurring reminder that he had a clear purpose. "The news was what gave me hope," he said. "I heard a story about a 73-year-old woman being raped by a nursing home staffer. I knew I wanted to make things better for other people." Norman's road to independence opened up when someone from the University of Illinois at Chicago visited him at the Renaissance and told him about Access Living. "After hearing about Access Living, I interviewed to be a part of their deinstitutionalization [community reintegration] project and knew I wanted to live in the community." Along with the interview at Access Living, Norman obtained a Section 8 Housing Application from a Chicago Disability Transit driver. "He was wonderful. He came up to my room on the third floor and made sure I had the form in my hands." From the time he started the deinstitutionalization project at Access Living, it took Norman a year to move into the community. With Access Living making the transportation arrangements, Norman was able to independently visit 90 apartments, many of which had long waiting lists, before settling on his current residence, which is fully accessible. "I have a large dining room and I have no problem accessing the kitchen," Norman said. "The apartment was available right away and I moved out on October 31, 2005. I will never forget that date." Now that he lives in the community, Norman says that thanks to the help of another employee at the University of Illinois at Chicago, he found a place to go for physical therapy. Once a week, he has a one-hour session. He feels and looks better now-a stark contrast from the forecast he was given upon leaving the Renaissance. "Doctors told me I would not live one year if I left the nursing home." According to Norman, the improvements in his appearance and overall health are not even the most meaningful and positive differences he observed about his new lifestyle. Norman said he is grateful for the fact that he has more privacy than ever before and can watch what he wants on television as opposed to what the group wants. Norman also noted that he no longer feels pressured to conform to a method or standard of behavior as he did in the nursing homes. In the community, freedom is available in every area of Norman's life. He said he visits places like the Chicago Cultural Center, the Adler Planetarium and other museums every chance he gets. Norman is also thrilled that he can now independently perform necessary tasks. "I can come and go as I like. I go to a bank that is accessible and the guard now knows me," Norman said. "These are all things I could not do in the nursing home." Norman said that one of the most rewarding and exciting
experiences he had after getting out of the nursing homes was a trip
to the national American Disabled for Attendant Programs Today (ADAPT)
rally in Nashville in March, 2006. The feeling of independence overwhelmed
him as he boarded the plane for Nashville. "It was the first flight
of my life. I met many new people on the trip and had a great time until
the last day," Norman added. "I did not want to leave." Now that he lives in the community, Norman is able to live life to the fullest, enjoying family, friends, and most importantly, freedom without the pressures of someone constantly watching him, making miscalculations about treatment, and with an eternal optimism for the future. [RETURN TO LIST OF STORIES AT TOP] Pat Diddens' Story: Going Back to Work Pat Diddens is a wife of 30 years and a mother. She also is a two-time breast cancer survivor and has Multiple Sclerosis (MS). When you think of someone who has had the impact of breast cancer twice and severe MS, you may feel pity for her and think, "How could so many bad things happen to such a good person?" Please don't feel that way about Pat - she doesn't want you to either! To give you some of Pat's history, Pat was happily married and she and her husband were raising their only daughter. Pat and her husband, Dave, were both working at the time. She was extremely active in all facets of life. When Pat thinks back to this time, she states she remembers just really enjoying life. In 2001, Pat got laid off and decided to go back to school full time to work on a degree. She recalls having symptoms of MS years before actually being diagnosed, however while laid off, the symptoms became more significant. Her doctors struggled to identify the cause, but finally in May of 2002, she was diagnosed with MS. When she learned that she had MS, Pat thought her world had come to an end. The right side of her body went numb and her left side was also beginning to be affected. She was fatigued all the time and increasingly needing to use a wheelchair to get around. She stopped leaving the house due to the amount of energy it took. Her whole life slowed down, literally. Pat could no longer drive, walk, work or manage her household and she thought she would never do so again. Her husband became the sole provider for the family and her medical bills started piling up. Pat applied and was eventually approved for Social Security Disability benefits. Upon being diagnosed with MS, Pat began taking the latest MS medications. There is no cure for MS, but there are new medications available that can assist with regaining some of the loss of function and the medications often stop the person from getting any worse. However one usually has to try several different medications until they find the one that works best for them. As soon as she thought she was making some strides to overcoming the MS to the point where she could participate in life - the breast cancer came into her life. Yet did Pat give up? NO! Fortunately, she was treated successfully for her cancer and was able to continue focusing on her MS treatment. Upon finding the right medication for her and getting the appropriate medical care, Pat's MS started going into remission. Several months ago, Pat called me and said she was starting to get some of her energy back and was thinking about trying to go back to work. However, she and her husband were concerned about losing her benefits given significant medical bills and the length of time it took her to get on SSDI in the first place. I reassured Pat that thanks to the Social Security Ticket to Work Act, she didn't need to worry about losing her benefits if she tried to work again. Around this same time, Dana Haynes of MetLife Auto & Home in Freeport approached RAMP looking for part time data entry staff, hoping we might refer some of our consumers who were seeking employment in this field. I asked Pat if she would be interested in this position and she said yes. So I helped her to update her resume and she sent it in. Shortly thereafter, she received a phone call asking her to come in for an interview. Pat says that, initially, she was afraid to jump at this opportunity - she was afraid that she wouldn't be able to handle the new challenge. She questioned herself and her abilities. She said it didn't help that her husband was really worried about the possibility of losing her benefits. To allay her fears, I suggested she meet with the Division of Rehabilitation's Benefits Specialist, Becky Peters. Becky conducted an analysis of her current SSDI and Medicare benefits to determine how they would be affected by earned income. Pat learned that she could make a decent monthly income and keep all of her benefits. If she ever did work herself up to full time, she would still keep her medical benefits for many years to come. Pat went to the interview and was offered the position. She started last December. Now in her fourth month of employment with MetLife, she cannot recall being any happier. She has a sense of belonging that she had missed for the last five years. She said she works with the most supportive and fun group of people. She can't say enough about how encouraging and accommodating her supervisor, Terri Bass, is. She said that most people have to work to make ends meet and she is at the point in her life where she wants to work to have meaning in her life. She is now able to help pay off those tremendous medical bills that were a burden on her family. With Pat's change in energy and self-esteem, she says her relationship with her husband has grown and strengthened. She explained that before she went back to work, her husband didn't have any breathing space. When he left for work, she was there and when he got home, she was there. Now she gets to have her "me" time at work with her new found friends and he gets to have his own time while she is at work. Pat shares that her disabilities have made her a stronger person. She still has permanent impairments from the MS, but she continues to work past them. She still gets tired from fighting so hard everyday, but it is all worth it. She is grateful to RAMP for referring her to MetLife Auto & Home and for encouraging her to take the leap of working again. She is also grateful for all of her friends from the Freeport MS Support Group. She shares that they are an awesome group of men and women who are there for each other and who understand what each other is going through. And most of all, she thanks her family and friends for ALL of their support and encouragement to keep living! I asked Pat what she wants other people with disabilities to get from this interview and she said she wants people to not be afraid to try to go back to work. She said if you don't succeed, at least you know you tried. Pat shared with me that her motto is - "Live for today, for tomorrow may never come." The Freeport RAMP office is very appreciative of MetLife Auto & Home's eagerness to hire persons with disabilities and give them an opportunity that other employers would not without hesitation. According to Dana Haynes at MetLife, having a diverse workforce is an important to MetLife. Their customers, associates and suppliers come from different countries, cultures, and generations; speak different languages; and have different needs and preferences. MetLife, in fact, was named to Diversity Inc.'s Top 50 Companies for Diversity. I have known Pat Diddens for several years, both through my personal life and through my work at RAMP. It has been an absolute privilege to write about such a wonderful lady who reminds me why I work at RAMP and why I love life! [RETURN TO LIST OF STORIES AT TOP] Ralph Frye's Story "My name is Ralph Frye and I am paralyzed from the waist down due to an automobile accident that I had about 2 years ago. After leaving the hospital I was sent to a nursing home. I hated being in the nursing home and felt like I would never get out. I was in the nursing home for over a year and I usually had roommates that were 30-40 years older than me. It was difficult to sleep at night due to the noise that some of the residents made. The food was terrible, the workers were rude, and the smell was unbearable. I felt like I was in prison. I also felt like I would never be able to get out on my own again. I then met Jack Delzell from PACE and he let me know about
a program that would allow me to move into my own apartment. Jack helped
me locate housing, bought me fumiture, household items, groceries, and
paid for my rent and deposit. I have been in my own apartment for over
6 months now and I feel like a new man! I receive 2 hours of PA services
each day and once again live like a "real" person. I can come
and go as I please, eat what 1 want, and live as I want. I have regained
my dignity and independence and if it were not for Jack and the Reintegration
program I would still be stuck in the nursing home. [RETURN TO LIST OF STORIES AT TOP] Terry's Story Terry is a twenty-two year old Coles County resident living with the most severe form of spina bifida. Adopted as a teenager, Terry started having pain in his back at the age of twenty but decided that it wasn't too awful to handle while working, so he dealt with it on a daily basis. Unfortunately, it only took a few months for the pain to worsen to the point of being awakened at 1:00 A.M. only to realize that he would have to tell his parents something was terribly wrong. He was taken to a hospital that could not give him or his parents any kind of diagnosis and he was sent to a specialist. A neurologist who could not correctly diagnose his problem saw him. He was told to start physical therapy. His mother did not want him to be far from home so he went to Urbana. After one month of therapy, he was told that not only was it not working, he was getting worse! In December 2004, Terry had an MRI with blood samples taken and was seen by an orthopaedic surgeon. Finally, the family was given the diagnosis of spina bifida. The MRI showed that Terry's spine had this disease growing only one inch from his brain. In the past two years, Terry has faced several problems, including bowel and bladder complications and a lot of leg spasms. His surgery was in June of 2005. When he awoke from surgery, he could open his hands that he thought were permanently crippled. He actually had to learn how to "touch" again. His nerve endings still sometimes feel as if they are asleep in his fingers. He walked, with the aid of a walker, down the hospital hall and was thrilled. Terry states that it was totally unacceptable for him to stay in a nursing home because every time he made a friend, that friend would die. This was depressing to him and Terry, believe it or not, is an incredibly upbeat person. He would not live his life in this state. He would be independent. The only barrier that Terry faced when leaving the nursing home was the doctor that wanted him to do more physical therapy, however the conditions for this were not suitable to Terry's type of spina bifida at this home. The benefits that Terry received from the Reintegration Program are many. He states that it was an easy process for him. He can do a lot for himself and felt that getting all of his resources together, such as finding his own apartment, furnishings, etc., was an easy task with all of the help from the program in the other areas, such as funding. He said that someone was always there to help him whenever it was needed. Since Terry has gone through the Reintegration Program, he loves living independently, cooking his own meals and enjoying life. He would recommend this program to anyone who needs or wants it. He would like to see better resources, in general, in his county, such as better transportation to his doctors, since friends are helping him now. He would also like to see more accessibility for people in power wheelchairs. After sharing his reintegration experience Terry left me with this "motto" he lives by. "Adapt and survive on my own, or live in a nursing home and be waited on" - he has decided that he would rather wait on himself. |
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© 2006 INCIL Olmstead Committee
For more information, send an e-mail to striano@accessliving.org or call the Illinois Network of Centers for Independent Living (INCIL) at (800) 587-1227 |
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