Reflections: Individual Voices, Continued

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Georgia Interviews

Personal Information

Carrie* lives in a group home whose ownership was recently transferred from Southwestern State Hospital to Thomas Grady Service Center, the community provider in Thomasville, Georgia, that serves people with developmental disabilities. Carrie has four roommates with whom she has lived for many years. She was able to stay with the same roommates when ownership was transferred. She is approximately 40 years old. In addition to cognitive issues, she appears to have a neurological disorder that causes her hands to shake. She has her own bedroom, which she has decorated. Live-in staff rotate throughout the week, and Carrie spends time in a sheltered workshop/day program. She did not seem too interested in answering questions but was very verbal about the subjects she wanted to talk about.

*Name changed to protect privacy.

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

“No.”

(Carrie lives in a group home that was previously owned and operated by the state of Georgia through Southwestern State Hospital.)

What was the name of the institution?

How long did you live there?

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?

Housing Arrangements

What type of housing arrangement do you have?

Are you living independently?

“Yes, I have my own bedroom.”

Do you live with family members?

“No, my mom died and my dad died of cancer.”

(Staff reports that she has developed a sister-like relationship with one of her roommates.)

Do you share a home with other individuals?

“I have four roommates.”

Do they have disabilities also?

(Yes, it is a group home for people with disabilities.)

Is there staff to help you there?

“Yes, we have someone who is at the house and makes us breakfast and dinner and stays overnight.”

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

What do you like about where you live?

“My room is pretty. I like my room and watching TV. No strangers can come in the house. We eat dinner at the house, but I do not help with dinner. Sometimes I make cookies and cupcakes. I love my roommates a lot.”

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?

“Every day I have a Dr. Pepper at 10 a.m., but sometimes they sell out because everyone loves it.”

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

“I come every day to the Training Center. I paint pictures. I play bingo and Candy Land. Kim, who lives with us, painted my nails red.”

What are your favorite things to do?

“I don’t swim but I love to go to the swimming pool because it is hot.”

Employment

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

“I want to work at Wal-Mart because my sister works there.”

(Staff indicated that she volunteers at the local elementary school, reading to children.)

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

“No.”

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?

Personal Information

Corey* is 53 years old. He likes to engage with people. He has severe balance problems and is prone to falling, so he wears a helmet. He also has a severe skin condition. He lives in a historic home in Thomasville with four other people and has 24/7 staff. Corey did not mention the fact that he spent a significant part of his life in Southwestern State Hospital, Rose Haven Unit.

*Name changed to protect privacy.

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

“No, I lived in Tifton, Georgia.”

(Staff explained that he was originally from Tifton but had lived at Southwestern State Hospital for many years beginning in childhood.)

What was the name of the institution?

How long did you live there?

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?

(He did not want to talk about living there. Staff said Corey has some challenging behavioral issues and they were warned by state hospital staff and his family that he would not be able to live in the community. However, there have been no incidents since he moved out of the state hospital.)

Housing Arrangements

What type of housing arrangement do you have?

“I have my own bedroom.”

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“Yes, I have four roommates.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Yes, Diane takes care of us.”

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

What do you like about where you live?

“I have a TV in my room.”

What would you like to change about where you live?

“I would like to mow grass.”

Community Life

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

“I like to mow grass. My brothers and sisters are taking me out to dinner for my birthday on Friday. I want to go to Red Lobster.”

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

“No. I come to the Training Center every day and I like to play bingo. I like to go outside and take walks with my friends. I like the Police Department.”

What are your favorite things to do?

“Mow grass. I like watching shows.”

Employment

Are you working?

“No.”

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?

Personal Information

George* is approximately 40 years old. He talks a lot but is very hard to understand. He does not seem to have additional medical problems, but he pretends to cry when he does not want to do something…like answer questions. George likes donuts and got a package of donuts for our interview. He wanted to finish them before we could talk.

*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?

“Rose Haven.”

How long did you live there?

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?

“My dad was very mean and he died. My mom is in a home in Thomasville.”

(He seems to understand that his mother was not able to take care of him at home.)

Housing Arrangements

What type of housing arrangement do you have?

“I live in a house. I have my own room, but I did not get to choose the color my room was painted. It is white.”

Are you living independently?

“No I live with four roommates.”

Do you live with family members?

“I have brothers and sisters and they visit me.”

Do you share a home with other individuals?

Do they have disabilities also?

“Yes, they are like me.”

Is there staff to help you there?

“Yes, there is staff to help us and they take me to see my mom in the home.”

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

What do you like about where you live?

“I like donuts. I like to play ball.”

What would you like to change about where you live?

“I want to live in Florida with my brother.”

Community Life

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

“I like to play ball and go bowling.”

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

“Bowling.”

What are your favorite things to do?

“I like to go see Mom.”

Employment

Are you working?

“I work bagging groceries three times a week.”

(Staff reports that he works once a month and that he is very popular at work. He works every day in the sheltered workshop.)

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

“No.”

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

“No.”

What do you like about your job?

“I like seeing all the people at the grocery store. I like to have money.”

What would you like to change about your job?

(He would like to work more at the grocery store. He doesn’t like days off.)

Dedication

The National Council on Disability dedicates this paper to the memory of Susan M. Daniels, who was an extraordinary leader and advocate for equal opportunity, full participation, and the economic empowerment of people with disabilities around the world. Her vision and spirit live on in this paper.

Acknowledgments

The National Council on Disability (NCD) wishes to express its appreciation to Barbara Butz of Daniels & Associates, LLC, and consultants Nanette Goodman, Steve Allen, and Ellen Piekalkiewicz for their research and drafting of this paper. NCD also extends its thanks to the many self-advocates, family members, and others who shared their experiences with us.