Penny Kitchen sits in her motorized wheelchair in the middle of the living room with her small dog, Peppy, curled up on her lap. One of her support workers, Emily Churchill, runs through the alphabet until Penny shifts her eyes toward the ceiling, a symbol for “yes.” Churchill repeats the process. Penny spells out “Hi,” and smiles.
Penny has cerebral palsy, a congenital disorder that can affect movement, learning, hearing, thinking, seeing, or a combination of the nervous system functions.
Unable to speak, Penny communicates with her eyes; without the use of her hands and feet, she’s wheelchair-bound.
Penny lives in her own home, an apartment on the back of her sister’s house. She has a small-but-cozy living room and kitchen area downstairs. A short elevator ride upstairs reveals a living space, bathroom and bedroom. She chose the paint colours herself — most of the house is cotton candy pink, with the elevator shaft that runs through the middle of the apartment painted blue with a palm tree on one side.
Unable to speak, Penny Kitchen communicates with her eyes.
Despite having attendants to interpret and prepare meals for her, Penny is very much an independent person.
Dorothy Kitchen, Penny’s mother, is part of the Disability Rights Coalition. It advocates not only for deinstitutionalization but also for choice and person-centered care.
“As long as they have an institution there, people are going to be moved into them without choice,” says Kitchen. “So that’s why we would like to see them closed down.”
Kitchen says with the right supports, it is possible to have people live in their own apartments. If they’d rather live in a group or small options home, that’s fine, she says, as long as it’s their choice and not forced upon them by Nova Scotia’s Department of Community Services.
“As long as they have an institution there, people are going to be moved into them without choice,” says Dorothy Kitchen, Penny’s mother.
Penny receives funding from both the Department of Health and Wellness, and Community Services. But her funding hasn’t increased in nine years, despite growing living expenses. Each time she asks for more money she’s told a nursing home would be a cheaper living arrangement.
“Basically, the way I look at it all is … a person with a disability is no different to what I am,” she says. “And no one has to come and assess me where I want to live; no one says to me ‘You know, you’re not staying home anymore.’ So why can’t it be like that for a person with a disability?”
With the funding Penny receives, she hires her own attendants. She currently has four on rotating shifts and nights throughout the week. All are privately hired.
When Kitchen first looked for support for her daughter, they tried several different agencies. (Penny is now in her forties and too heavy for Kitchen, 80, to lift).
“They couldn’t communicate with her,” Kitchen says. “There’s no continuity. One day one person comes, another day another person comes.”
Penny was placed in a nursing home before, but only stayed six weeks. She was uncomfortable with the way residents were treated.
“Having an intellectual disability doesn’t mean you don’t like your own music, you don’t like to be alone sometimes,” Kitchen says. “It seems easy to me that you should just live like we all live. No one tells any of us how to live, you know?”
So far, Kitchen has been successful in resisting the government’s attempts at persuading Penny to enter a nursing home. But she hasn’t been able to get her funding increased.
Penny has lived in her own apartment for nine years. Peppy’s been with her for just over a year.
Dorothy says her daughter is happy in her own place, “yet it seems hard for our governments to get that concept.”