PCAForever.org - Supporting the MA PCA Program

Stories

Amy

"As the third child in my family to be born with neuromuscular disabilities, I spent my childhood being shuffled through the special ed system, bussed towns away for school, until I was put into the Mass Hospital School [for camp in 1978, day school 1982-1984, and then as a residential student 1984-1986].

From 1986 to 1990 I lived in my parents house and existed with visiting nurse services for 1-2 hours weekday mornings. I got PCA services and my first apartment after my parents threatened to put me in a nursing home. They had already attempted to force me into inappropriate sheltered workshops, and senior Alzheimer day care programs, [staff refused to take me since my disabilities were physical and I was in my early twenties].

I now live in my own subsidized place, have a van and PCA services, and attended college since Sept 1990. I run an internet independent living yahoo group, and volunteer my time wherever I can to local and statewide independent living and disability rights endeavors.

After some temporary health setbacks in 2010 my parents tried again to put me into a nursing home. My parents had no legal hold on my life, had not participated in my life for years, but felt they were entitled to run it. Nursing home staff don't mind talking to a forty year old adult's parents, without me in the conversation, about decisions that would have forced me to give up my home, friends, two cats, put my PCAs of twenty years out of work, leave physicians who knew my conditions, and more. I've been estranged from my parents [the only living relatives I have]. They refuse to understand why I won't terminate my independent life, and relocate to a nursing home chosen by them, because they donated Christmas baskets there once and found the rec room decor 'nice'.

Through these experiences I've learned that being forced into a nursing home can threaten your quality of life at any age. If I had been less assertive, my life would've been destroyed by a handful of people who had no legal guardianship but felt that my need for personal care assistants, gave them the authority to control my life. Having a disability doesn't mean a death sentence from participating in the world alongside everybody else.

Freedom is fragile and we need to be vigilant that consumer controlled programs stay funded and keep evolving."

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