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Introduction

Despite the dramatic decrease in recent years in the number of people with mental retardation and other developmental disabilities living in large (16 or more people), state operated facilities, nationally over 95,000 individuals with developmental disabilities remained in large, state and non-state institutions as of June 30, 1996 (Anderson, Polister, Prouty, & Lakin, 1997). In the face of feared budget cuts and pressures from vested interests, some states are resisting or slowing former commitments to closing institutions and reducing these numbers. Consequently, it has become imperative for supporters of deinstitutionalization to continue the pressure to move people out of institutions and into the community. One tool that can be used in this effort is the perspectives of persons who have left institutions and are now living productive, satisfying lives outside those walls.

Although there are numerous studies that support community living for people with mental retardation and other developmental disabilities, they are empirical in nature and do not relate the experiences of the individuals in the individuals’ own words. Those untold personal stories can breathe life into the statistics and remind us of the human beings behind the numbers.

The primary purpose of this booklet is to share the life experiences of 22 adults with developmental disabilities who once lived in Oklahoma institutions and now live in the community. They were asked questions related to five areas of their lives: home, employment, relationships, community, and dignity and attitudes. Their interviews have been condensed in this publication and, for ease of reading, organized under questions that reflect the themes in their comments. The text, however, remains the actual words of those interviewed.

It is through stories such as those told in this booklet that policymakers, service professionals, advocates, families, and others can see the realities of life in institutions and the necessity - as well as the feasibility - of moving people from such segregated settings into the freedom of community life.

Their Stories….in their own words

Warren

Quote: “When I lived in the institution, you wouldn’t do anything like you’re doing now. Now, I can go to town. I go to the mall in the downtown area and meet the people and talk to them and tell them about People First”

Barb

Quote: “I work for Vista Volunteers. Experiences like working with a lot of people and going to different places and being able to have experience in other areas instead of in one area.”

Quote: “I’m finding now that I’m learning how to read a lot better than I used to, and I enjoy learning and setting down and working with somebody who is interested and is willing to work with me and listen to me.”

Jim

Quote: “My wife is my closest friend… We have our ups and downs every day but it’s always nice to know we can sit down and talk the problems out and solve them ourselves”

Kevin

Quote: “I’m proud seeing all my buddies getting out in the community and stuff. That’s one thing I’m proud of. Seeing all my friends doing real well and they all have a family. They all driving and going to get jobs and stuff….”

Roxanne

Quote: “Just started going back to school last month for a G.E.D. And everything’s going okay. Been going out back down to school on Monday, Tuesday, and Thursday.”

Stanford

Quote: “I am grateful to be the person that I am now. I am grateful to be the person – well, after going through all I’ve been through, I am happy to be the person that I am now. I felt like I’ve accomplished a lot…”

Billy

Leon

Quote: “When I was in the institution, I was shy. I like where I am now. I like myself. I’m better off now. I’m more happy now. I’m a regular person.”

Juanita

Quote: “I always wanted something to do. I don’t want just to be without work and sit out and do nothing. I didn’t like that place.”

Bob

Quote: “I have my own lawn service. I got my own boss now. I have job coaches that help find me jobs. My own business.”

David

Karla

Quote: “I have a lot of people I talk to and, you know, get around with and stuff like that. I have an apartment and I love it. I do my own cooking. I do everything. I just do everything on my own.”

Don

Quote: “Well, now I’m living in a house of my very  own, and I love it… I go to dances… Sometimes I go shoot pool. Sometimes I go to the movies.”

Barry

Quote: “The main thing I like about it is I love living here. I have friends here. I live with three guys.”

Denise and Debbie


Mark

Quote: “I like [my home] very much, and it’s lots better than the institution. I like having my own room and my own stuff without having to worry about somebody getting up and stealing it…”

Their Stories….in the words of family members and staff

Shawna (as told by her mother)

Quote: “She’s happy. She’s really happy. Shawna likes it better in the community than in the institution.”

Steven (as told by his mother)

Quote: “He has so many things now that he never had in an institution. And most of it’s freedom. He’s just got freedom. That’s what it is. He’s got freedom to do whatever he wants to do, and he didn’t have that in an institution.”

Quote: “I think, as a parent, we’re all protective and we want our children to have the most safe everything that they possibly need.  I can understand those parents being afraid. I was afraid too, but you’ve got to get past that.”

Carrie, Linda, and Barbie (as told by staff who had worked with them at the institution and who were working with them in the community)

Quote: “It’s calmer here. It’s not as hectic as it is up there. Here, it’s like coming to your own house. Yeah, a lot more relaxed.”

Stories of Staff…in their own words

Terry

Quote: “When you’re trying to reconcile what you’ve known was a good thing and then what you’re seeing now, as far as things you would or wouldn’t agree with, how can you agree with 20 people living on a hall, you know?”

Steve

Quote: “When they’ve moved into the community, we’ve been working on trying to get them more involved in sporting activities with the normal population. Now, a lot of our individuals are participating in unified sports leagues.”

Conclusion 

Appendix    

 

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