Case Study: Individual Experiences

This section of the Deinstitutionalization Toolkit: Case Studies: inDEPTH explores the experiences of individuals directly affected by the deinstitutionalization process. These voices and reflections are of eight people with intellectual disabilities and developmental disabilities (ID/DD) who are most affected by the move from state institutions to the community.

The Deinstitutionalization Toolkit: Case Studies: inBRIEF is an introduction that provides information about the methodology, key questions, topics, and discussion threads used in the evaluation of two states that are at different stages of the deinstitutionalization process. The Deinstitutionalization Toolkit: Case Studies: inDETAIL reveals the experiences of the closure process from the perspective of advocates and leaders involved in closing institutions and building community support systems in Oregon and Georgia.

Reflections: Individual Voices

Interviews with Former Residents of Institutions in Oregon and Georgia

Methodology

As a part of the case study work in Oregon and Georgia, individuals who were residents of institutions and are now living in the community were interviewed. In Oregon, individuals interviewed were former residents of Fairview and had lived in the community for a significant period of time. In Georgia, the individuals interviewed were former residents of Southwestern State Hospital, Rose Haven Unit, in Thomasville, Georgia, and 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 & Associates research team.

Highlights

Oregon

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

Four of the five people were working or involved in sheltered employment of day programs run by three different providers, with one retired after years of working in two separate jobs, ending her work life as a line supervisor at St. Vincent De Paul’s.

Georgia

In Georgia, three people were interviewed, two of whom were recently discharged from Southwestern State Hospital, Rose Haven Unit, Thomasville, Georgia, and the other who is residing in a group home whose ownership was recently transferred from Southwestern State Hospital to the community provider in Thomasville, Georgia. Southwestern State Hospital was one of Thomas County’s largest employers, with more than 800 employees. During the last several years, state hospitals in Georgia that serve people with developmental disabilities and mental illnesses have been plagued with allegations of abuse, neglect, and substandard medical care that contributed to more than 100 deaths under suspicious circumstances since 2002.

All of the three interviewees are currently living in the community in group living situations with other individuals with disabilities and 24/7 staff. They are enjoying their living situation and are participating in simple activities in the community—working, going out to eat, going bowling, playing ball outside, and having their individual rooms. Staff reports that the former residents led very structured lives at the state hospital and even in the group home run by the state hospital. Staff is trying to change the regimented aspect of their lives, but long-held habits are hard to change. Most people are still waking up very early, around 5:30 a.m., and still want to go to sleep by 8 p.m. Staff reports that all the residents were on a strict 1,500 daily allowance of calories at the state hospital. Now there is much more freedom in what they eat, and staff is concerned with some weight gain issues. The interviewees are involved in sheltered employment of day programs, and two of three are working in the community as well.

Interviews

We have included the interviews in their entirety so the individual voices of these former residents and their stories can be heard and seen in the context of their experiences both as residents of an institution and as members of a community.

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.

Questions: (Please try to capture the individual’s actual words so we can use them as quotations whenever possible. Note: we will not identify the individual’s name.)

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 gentlemen, one of whom has been a good friend for many, many years. The home is in a nice neighborhood. It is clear that they have decorated it themselves with many personal items and pictures. There is live-in staff that rotates throughout the week. Additional staff is available during the day. Charlie spends time in a sheltered workshop/day program. He liked making money to go shopping. He appeared to have no complaints about his life. He was not uncomfortable about 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?

“Mike [his 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: Annually residents’ pictures were taken and put into their records. Charlie likes to have his picture taken even now, 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 is there 24/7.)

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

What do you like about your 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 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 was showing 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?