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Trailblazers unite to push for change
RICK EGLINTON / TORONTO STAR
Want better lives for the non-verbal
January 06, 2007
Helen Henderson

They're calling it the Quiet Riot and hoping their message will resonate.

Anne Abbott and Aaron Shelbourne, founders of Independence Unlimited, 
are on a mission to get Ontario to recognize that many people who don't 
communicate verbally are not only able but also eager to live 
independently and manage their own lives.

Abbott and Shelbourne do not use their voices to get points across.

Instead, they rely on communications boards, Shelbourne indicating 
letters and phrases with his eyes, Abbott with her right index finger.

Each is already a trailblazer – Abbott in a courageous public stand 
against caregiver abuse, Shelbourne as the first non-verbal communicator 
to be accepted into a residential alcohol rehabilitation program at the 
Centre for Addiction and Mental Health.

Now, with the backing of the Ontario Coalition Against Poverty, they 
hope Independence Unlimited will attract members interested in improving 
the quality of life for all Ontarians with disabilities.

First on the agenda: a campaign to persuade Queen's Park to expand an 
important program that gives people with disabilities more autonomy when 
it comes to managing personal care services.

Participants in Ontario's direct funding program are given money to 
choose and hire their own support workers. That frees them from being 
dependent on the schedules and rosters of an agency, let's them arrange 
service on their own terms to fit their own schedules for work or 
personal time and ensures they will be treated with respect by those 
they hire.

Almost a decade ago, when direct funding graduated from pilot project to 
full program status, a health ministry spokesperson told the Star: 
"reports indicate it's cost-effective and participants...are very 
pleased with the control and the choice it offers."

Yet resources still fall far short of needs.

The program, which serves 725 people has a waiting list of some 300, 
says Ian Parker of the Centre for Independent Living in Toronto, which 
co-ordinates direct funding (cilt.ca).

Spaces open up only when someone dies or becomes unable to manage his or 
her own care. Less than 30 from the waiting list are accepted into the 
program each year, Parker says.

Above and beyond that, Independence Unlimited points out, the maximum 
six hours of help a day doesn't come close to meeting needs, 
particularly for those who do not communicate verbally and require extra 
time to express their wishes.

Parker says the program does have some provision to provide extra funds 
for assistance to people with extra needs, including those who use 
ventilators or do not speak. But Abbott says she was never aware of this.

She says she has never been offered funding for more than six hours a 
day and argues that the time allotted is way too short for anyone to get 
the help they need washing, dressing, preparing food, eating meals and 
working in the community.

"Everybody I talk to on direct funding says it's ridiculous to think six 
hours is enough," she says.

Shelbourne and Abbot feel Ontarians with disabilities are "trapped in 
the under-funded attendant-care system, ill equipped to deal with the 
real needs of people."

Shelbourne is particularly concerned that anyone who doesn't speak is 
too often treated like "an imbecile who is hearing impaired."

Four years ago, he says his application for direct funding was refused. 
In the interview to determine whether he could direct his own care, he 
says a speech facilitator was not allowed. He hopes the program has 
since come to understand the role of communications boards and plans to 
reapply.

"I can teach anyone to communicate with someone who doesn't speak," he says.

Abbott and Shelbourne have always been effective advocates on disability 
issues, says Simone Schmidt, of the Ontario Coalition Against Poverty. 
The coalition has been among those fighting for an increase in Ontario's 
disability support rates, she notes. "It's not a far leap to recognize 
that the battle to expand direct funding is a very important struggle."

In response to a Star query about whether direct funding might be 
expanded, a health ministry spokesperson said the $22 million program 
"focuses on those who need it most" and there are "no planned reductions."

Ouch.

Abbott, Shelbourne and Independence Unlimited have their work cut out 
for them. If you'd like to support the cause or get more information on 
Independence Unlimited, email [log in to unmask] or [log in to unmask]

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