Reflections: Individual Voices

Methodology

As a part of the case study work in Oregon and Georgia, researchers interviewed former residents of institutions who are now living in the community. In Oregon, the interviewees were former residents of Fairview who had been living in the community for a significant period. In Georgia, they were former residents of Southwestern State Hospital, Rose Haven Unit, who had only recently been released to begin their lives in the community.

The interviews in Oregon were conducted by Becky Thrash and Carol Loop, staff members of the Oregon Council on Developmental Disabilities. The interviews in Georgia were conducted by Ellen Piekalkiewicz of the Daniels and Associates research team.

The interviews are included in their entirety to allow these former residents to tell their stories in the context of their experiences as a residents of an institution and as members of a community. The names of all interviewees have been changed to protect their privacy.

Highlights

In Oregon, five people were interviewed. All of them were living in the community: four in group living situations with other people with disabilities and 24/7 staff, and one independently in an apartment.

All were enjoying their living situations and took pleasure in simple activities in the community—going out to eat, shopping, going to a pet store—and in having the freedom to pursue their own interests.

Four of the five people were working or involved in sheltered employment through day programs run by three different providers. One person had retired after years of working two separate jobs; she completed her work life as a line supervisor at St. Vincent de Paul.

In Georgia, three people were interviewed. Two had recently been discharged from Southwestern State Hospital, Rose Haven Unit, and the third was living in a group home whose ownership was recently transferred from Southwestern State Hospital to the community provider in Thomasville. Southwestern State Hospital was one of Thomas County's largest employers, with more than 800 employees. Over the past several years, state hospitals in Georgia that serve people with developmental disabilities and mental illnesses have been the focus of allegations of abuse, neglect, and substandard medical care that have contributed to more than 100 deaths under suspicious circumstance since 2002.

All three interviewees are in group living situations with four other people with disabilities and 24/7 staff. They have their own rooms and participate in activities in the community: working, going out to eat, going bowling, playing ball. Staff report that these three people led very structured lives at the state hospital and even in the group home when it was run by the state. Staff are trying to change the regimented nature of their lives, but residents still tend to wake up very early, around 5:30 a.m., and go to sleep by 8 p.m. All the residents were on a strict 1,500 calories a day diet at the state hospital. With their new freedom to eat what they want, some weight gain issues have arisen. The three interviewees are involved in sheltered employment in day programs, and two of them are working in the community as well.

Oregon Interviews

Deinstitutionalization: Unfinished Business

National Council on Disability and Daniels and Associates, LLC

Interviewer Script

The National Council on Disability has asked Daniels and Associates to talk with people with disabilities about their experiences—living in institutions and then living in the community. Your answers to these questions will help people all over the country to understand these issues better and we hope that this information will encourage states to close all institutions and provide quality living situations for people with disabilities in the community.

Thank you for agreeing to talk with us.

Personal Information

Charlie* remembers living in Fairview from the time he was very little. He is approximately 60 years old now. He appears to have mild cognitive disabilities and uses a wheelchair. He communicates well. He lives in a three-bedroom home with two other men, one of whom has been a good friend for many years. The home is in a nice neighborhood. It is clear that they have decorated it themselves with many personal items and pictures. Live-in staff rotate throughout the week. Additional staff are available during the day. Charlie spends time in a sheltered workshop/day program. He likes making money to go shopping. He appeared to have no complaints about his life. He was not uncomfortable answering questions. He liked to talk about going out into the community. He likes watching people at malls, restaurants, and parks. He likes to go camping.

*Name changed to protect privacy.

Did you live in an institution at some point in your life?

“Yes.”

What was the name of the institution?

“Fairview.”

How long did you live there?

“My housemate and I lived there when we were young.”

(Staff: 40+ years; Charlie was placed there as a young boy.)

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“They would take my picture and then I would get ice cream and pop.”

(Staff: Residents’ pictures were taken each year and put into their records. Charlie still likes to have his picture taken, and he always requests ice cream and two cans of pop.)

Housing Arrangements

What type of housing arrangement do you have?

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

(Lives with two other housemates, who also lived at Fairview.)

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

(Staff are there 24/7.)

If none of these describe the place where you live—please tell us about it.

What do you like about where you live?

“I help with dishes (in the kitchen). Watching TV in here.” (He points to the television in front of him, in the living room.)

What would you like to change about where you live?

“I like my house.”

Community Life

What is the thing you enjoy most about your life in the community?

“John takes me with him. We go places.”

(Staff: His friend John comes quarterly. They go see the lady at the pet shop and go out to eat and other activities.)

Do you get to go out and “do things” in the community?

“They take me downtown and I get me something.”

(Staff: He likes buying arts and crafts, coloring books, and other supplies. He likes the color red. When he picked out a recliner at the store, it had to be red.)

What are your favorite things to do?

“Go on picnics. Watch children play on the jungle gym at the playground.”

(Staff: He likes watching cars go by and especially watching people.)

Employment

Are you working? If you are working, tell us a little about your job.

“I put nails on racks. I have four different jobs.” (He showed that he does things with his hand. Gesturing, moving his hand back and forth.)

Are you working at a job where most of the other individuals are also people with disabilities?

“Yes, it’s either a sheltered workshop or a day program called Day Break.”

Do you have assistance on the job—like a job coach or other aids?

“There is staff at Day Break.”

What do you like about your job?

“I get money when I work.”

What would you like to change about your job?

Personal Information

Alice* is approximately 50 years old. Alice is very verbal and likes to engage with people. She lives with two other people in a home that has rotating 24-hour awake staff and a live-in. Alice has no teeth. The interviewers noted that teeth may be removed if a person bites others, but they did not know whether this was true for Alice. She made it clear that her experiences at Fairview were very bad—she didn’t want to discuss them because the memories upset her.

*Name changed to protect privacy.

Did you live in an institution at some point in your life?

“Yes, from the age of 12.”

What was the name of the institution?

“Fairview.”

(Gaines and McGruder cottages, among others. Gaines was reserved for very aggressive or self-abusive residents who required one-on-one staffing. McGruder was for aggressive women. When Alice mentioned these names, she became very agitated.)

How long did you live there?

“Age 12 until I got out.”

(She was relocated from Fairview in the late 1990s.)

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“I didn’t like it there at all. Don’t want to talk about it. Don’t want to discuss it. It was bad. Bad. Nobody should be there.”

(She started rubbing her face.)

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

(She didn’t want to talk about living there.)

“I was placed there after I threw my brother out a window and pushed my sister down the stairs.”

(She didn’t attend school while she was there.)

Housing Arrangements

What type of housing arrangement do you have?

“I have my own bathroom and the big bedroom.”

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“Yes, I have two roommates.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Yes.”

(24/7 staff, very structured and stable. One staff member mentioned that as Alice’s life has become more stable, she has exhibited less bad behavior.)

If none of these describe the place where you live—please tell us about it.

What do you like about where you live?

(She seemed very happy about where she lives.)

“I like that I have the big bedroom.”

What would you like to change about where you live?

“I would like to live closer to Mom.”

(Her mother lives in Portland. It sounded as though relationships with Mom and siblings were strained.)

Community Life

What is the thing you enjoy most about your life in the community?

“I like working. I like to clean. I clean toilets and sinks. I answer phones and take messages. I like doing my job and I like when people say I have done a good job.”

(Staff commented that she is very polite and professional on the phone.)

Do you get to go out and “do things” in the community?

“I like shopping for groceries. I like getting my hair colored.”

(She participates in a weight loss program called TOPS. She was proud that she had lost weight.)

What are your favorite things to do?

“I like Blazers (basketball) and Volcanoes (baseball) games. I have a boyfriend. I have baseball cards. I like watching shows.”

(She likes watching game shows. She sees her boyfriend occasionally.)

Employment

Are you working?

“Yes.”

If you are working, tell us a little about your job.

“I work at SRC.”

Are you working at a job where most of the other individuals are also people with disabilities?

“Yes.”

Do you have assistance on the job—like a job coach or other aids?

“Staff is there to help.”

What do you like about your job?

“I clean floors, vacuum, clean toilets, answer the phone, and take messages.”

What would you like to change about your job?

“Nothing.”

Personal Information

Jimmy* gets very agitated when people don’t understand him. He uses only a few words at a time. He gets frustrated when people ask him questions. He often looked at his sister and said, “Sissy, Sissy, Sissy.” He lives in a very fancy house on a golf course with one other person who has autism. He has the big bedroom with his own bathroom. There are glow-in-the-dark stars on the walls. The house does not look as though the residents provide much input into the decorations. He loves his big-screen TV and old westerns. He has all the westerns memorized. He also watches the golf channel.

*Name changed to protect privacy

Did you live in an institution at some point in your life?

“Yes.”

What was the name of the institution?

“Fairview.”

How long did you live there?

“Was placed there at age 20 and left at age 48. He has been with the current provider for 12 years.”

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“His parents placed him there because they felt it would be secure for him. He was a ‘runner.’”

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“Very difficult for him. He was teased a lot; it’s not clear whether by residents or staff. The structure of staffing and residents was always changing and it was very noisy. He didn’t sleep well at Fairview. He became very closed-in. He would go home on weekends and sleep. He would cry when he knew it was time to go back. He had stomach issues that led to surgery. Staff tried having him live with a roommate in an apartment on the Fairview campus, but that was a disaster because he would run away.”

Housing Arrangements

What type of housing arrangement do you have?

“In a house.”

Are you living independently?

“No.”

Do you live with family members?

“He visits his sister’s house every other weekend. He is very excited about going to visit his sister. He was planning on going with his sister after the interview and was anxious to get moving. He put on his coat and hat.”

Do you share a home with other individuals?

“Only one other person.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Staff 24/7, live-in staff rotate, very structured schedule.”

If none of these describe the place where you live—please tell us about it.

What do you like about where you live?

“He seems to like where he lives very much. He showed the interviewers his room. He likes to help make cookies and other goodies. He gave the interviewers cookies he had made for them the day before.”

What would you like to change about where you live?

“Nothing.”

Community Life

What is the thing you enjoy most about your life in the community?

“He can visit other homes the provider runs. He likes one-on-one time with staff.”

Do you get to go out and “do things” in the community?

“He likes to watch people line dancing at a local bar called the Silver Spur. He loves to go shopping and to go to the casino and eat at the buffet, which he mentioned several times. He liked going for a drive. He really enjoys it when he stays with his sister. He helps to get ingredients when she is cooking and gets a kick out of it when she forgets something.”

What are your favorite things to do?

“He likes going with one of the staff to get hard candy at Dee Dee’s, a local deli.”

Employment

Are you working?

If you are working, tell us a little about your job.

“He is the ‘official’ mailman at PCL. He sorts color-coded mail and delivers mail to different homes. He delivers mail from the provider to the courthouse.”

Are you working at a job where most of the other individuals are also people with disabilities?

“Yes, at PCL. Also does limited delivery to the Marion County Courthouse.”

Do you have assistance on the job—like a job coach or other aids?

“Staff.”

What do you like about your job?

“He really enjoys delivering the mail. Has his route memorized. They are trying to incorporate a color-coded system but he’s not too happy about some changes in the color coding.”

What would you like to change about your job?

“He would like to do this job every day. He doesn’t like days off.”

Personal Information

Tom* was quite anxious when talking about the institution. He has moved around a lot and was concerned that the interviewers were going to move him again. Tom doesn’t initiate conversation very often. For example, he doesn’t voluntarily share when he hurts or feels ill but will talk with a doctor when he gets to the office. He is about 60 and uses a walker. Tom is very detail-oriented and likes things to be arranged in a certain way. His room was very neat, and his National Geographics were stacked in order. At least one of the staff members was someone he knew in Fairview and seemed to like a lot.

*Name changed to protect privacy

Did you live in an institution at some point in your life?

“Yes.”

(Most of his life was spent in an institution. He made it very clear that where he is living today is where he wants to stay. He was concerned that talking about institutions meant having to go back to the institution.)

What was the name of the institution?

“Fairview.”

How long did you live there?

“Not sure.”

(Staff: More than 40 years.)

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“I stay here.” (He seemed a little fearful or concerned. He did not like living at Fairview. He was moved to Keizer, South Salem, and Monmouth, and now here. He doesn’t want to move from where he lives now.)

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“No. I like where I live now. I stay here.” (He repeated this several times.)

Housing Arrangements

What type of housing arrangement do you have?

(Shares the home with two other men.)

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“Yes.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Yes, staff does everything. I want to start helping in the kitchen.”

If none of these describe the place where you live—please tell us about it.

What do you like about where you live?

“Like where I live. I stay here. Pictures on the wall in my room.”

He showed us his room. On one wall was a collage of pictures from magazines; it was about four feet wide and seven feet high. He continues to add to the collage until it gets so heavy that it falls down, then he starts over again. Each picture in the collage is connected to other pictures. For example, he had pictures of the singer Amy Winehouse, who had recently died. Next to them were pictures of alcohol bottles and other items related to her.)

Asked him if he listened to her music.

“Yes, I do.”

(He reads the newspaper every day. He requested a copy of this document when it was printed.)

(Staff: He keeps track of everyone’s schedule, both staff and housemates. He knows when they are supposed to be there and will say so.)

What would you like to change about where you live?

“Like where I live.”

(Staff: He doesn’t tell them when he is sick or where it hurts.)

“I talk to my doctor.”

(Staff: This is a great improvement that he can talk with his doctor about what is wrong.)

“The doctor talks to me, not to staff.”

Community Life

What is the thing you enjoy most about your life in the community?

“Josh and Kelly’s house, fried chicken.”

(Staff: Josh was a staff member who previously worked with him. Josh and his family stay involved with him and take him out and to their home.)

Do you get to go out and “do things” in the community?

“Yes. Shop for stuff. Go out to dinner.”

What are your favorite things to do?

“Go to McDonalds. Like cartoons, but not ones on TV now.”

Employment

Are you working?

“Yes.”

If you are working, tell us a little about your job.

“Day Break.”

Are you working at a job where most of the other individuals are also people with disabilities?

“Yes.”

Do you have assistance on the job—like a job coach or other aids?

“Yes.”

What do you like about your job?

“Taking pictures out of magazines and coloring.”

What would you like to change about your job?

“No, like Day Break.”

Personal Information

Sharon* is 58 years old. She is living in a housing complex in a unit by herself. She lives with no support except a person who helps with finances and email. Sharon is very independent. Her house is immaculate and she is very proud of it. She monitors who comes and goes in the complex and knows everyone. She appears to be very well liked. Sharon was married and had two children that she raised. She now has grandchildren.

*Name changed to protect privacy

Did you live in an institution at some point in your life?

“Yes.”

What was the name of the institution?

“Fairview.”

How long did you live there?

“I was there from about the age of 2 until I was 18 and graduated there. I had encephalitis when I was very young. I think I was maybe 1. Doctors told my parents that I wasn’t expected to live. I didn’t speak for about 200 days. Doctors didn’t think I would ever talk. The doctors didn’t know if I could even learn anything. They told my parents not to expect much.”

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“I didn’t know any different when I was placed there. When I first left Fairview I was very sad, but I don’t miss it at all anymore. I remember as a child going home by bus every other weekend to be with my parents. I moved in with my parents after I left Fairview. I helped take care of them as they grew older.”

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“As I got older I worked with the kids who were serviced through the Hearing and Speech area. I walked them to and from appointments and activities. I also walked the blind children. I didn’t get paid. I helped in the kitchen and helped to feed other patients.”

“I remember being in Special Olympics. In the cottages we could play inside or play outside with other kids. I remember going to the State Fair every year. I had lots of friends and had some special teachers. There was one teacher that was very encouraging to me. She made me feel very good about myself. We had to carry a colored card with us at all times. A green card meant you could go anywhere on campus. I left Fairview in 1973.”

“I would sometimes go to parties at an-off campus house where there were young children.” (This was called Baby Louise’s Haven. It was established by a nurse at Fairview for infants and toddlers who would ultimately move to Fairview when they were older).

(Sharon showed us certificates and photos that she has saved. She still has her diploma and the awards ceremony program.)

Housing Arrangements

(Sharon’s house is very homey and clearly decorated by her. Lots of family photos, her lighthouse collection, and a cat. She also has photos of friends and the friends’ family members because they are all close.)

What type of housing arrangement do you have?

“Apartment through HAP—Housing Assistance Program.”

Are you living independently?

“Yes.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“No.”

Do they have disabilities also?

“No.”

Is there staff to help you there?

“I have staff from my brokerage that helps me. Joan helps me check my email on Tuesdays.”

If none of these describe the place where you live—please tell us about it.

What do you like about where you live?

“I very much like where I live.”

What would you like to change about where you live?

“It is difficult to sit down in my bathtub, so I use a shower bench. I would like to have the type of tub you step into.”

Community Life

What is the thing you enjoy most about your life in the community?

“I can do anything I want. My friends are like family. I like helping the manager with the yard work and I help to keep the laundry room clean. I go to visit my grandkids in Northern California and relatives in Spokane, Washington.”

Do you get to go out and “do things” in the community?

“I go to Weight Watchers and to visit some close friends often.”

What are your favorite things to do?

“Cross stitch.”

Employment

Are you working? If you are working, tell us a little about your job?

“I don’t work anymore. I did work in a factory in Beaverton for 17 years making soaker hoses. I was on my feet for 8 to 10 hours at a time. I also worked at St Vincent de Paul and worked up to a line supervisor.”

(She cleans the homes of two friends and house-sits when they are gone. Another friend is very ill and Sharon checks on her daily. She rides the city bus.)

Are you working at a job where most of the other individuals are also people with disabilities?

Do you have assistance on the job—like a job coach or other aids?

What do you like about your job?

What would you like to change about your job?

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