MARGARET PHILP

Globe & Mail

Monday, June 18, 2001

Danielle Harder's twisted frame sits propped in a wheelchair for most of

her waking hours, skeletal limbs splayed at awkward angles, mouth

agape and leaking a thin strand of drool.

Cerebral palsy has contorted her body and robbed her of speech. Her

only controlled movements are a spasmic lurching of her limbs when she

disagrees with something and a tilt of her head to steer her wheelchair

or activate the computer that is her voice to the world.

The oxygen deprivation at birth that destroyed her body spared her

mind, bottling her thoughts and playful sense of humour in a brain that

can express itself out loud only in eye gestures (looking up means yes)

or at the laborious pace of one word every few minutes through the

letters she taps on a computer.

For 21 years, Dani, as she is known, has lived on a ward in a

rehabilitation institution for disabled children, eating bland hospital food,

wearing an oversized diaper and sleeping in a room that she sometimes

shares with a child.

Now, with the dubious distinction of having lived in Toronto's

Bloorview MacMillan Centre longer than anyone in the institution's

40-year history, she wants out.

The burning question -- and the problem that vexes an Ontario

government wrestling with the rights of disabled people to live outside

institutions -- is: Where does she go?

"She's physically a bust," said her mother, Karen Harder, a Toronto

high-school teacher. "But in her brain, she's there. She's right on the

minute. You can't just put her in an institution and let her stare at the

walls. It's inhuman for someone whose mind is so active."

Not that she has nowhere else to live. Her mother has bought a

condominium apartment in a downtown high-rise for her daughter. To

live there, her mother figures, Dani would need at least $120,000 a year

in funding to hire round-the-clock caregivers to carry her to the toilet

(so she need not wear a diaper), feed her, turn her every few hours at

night, book the Wheel-Trans bus to transport her to the astonishing

number of activities she manages in the outside world, including

volunteering as an assistant teaching illiterate adults to read.

But the Ontario government is balking. Even though it will readily foot

the $185,000 bill for her to live on the ward at Bloorview, the province

refuses to pay tens of thousands of dollars less for her to live in her own

home. The most it will offer is $42,500 and the impassive suggestion

that the family cover the rest -- far more than Ms. Harder's annual

take-home pay.

Since Dani legally became an adult at 18, her fate has hung in the

balance. Bloorview has proposed she move into a succession of group

homes and long-term institutions, more geared to the sick and elderly,

that charge half the fees but provide far less care.

"They'd be having her sitting in front of the boob tube," Ms. Harder

said. She has pleaded for money for Dani to live as ordinary a life as

possible under her own roof, free after a lifetime in an institution to

choose her meals and bedtimes.

As both sides have drawn lines in the sand, Dani has become a fossil in

an institution staffed by pediatricians, where almost everyone is

discharged before reaching the age of majority -- on average, after a

stay of three months. No friends her age. No schoolwork. No crafts to

do without use of her arms. Movies on Friday nights geared to a

younger audience. She spends most of her time creeping along the

corridors in her wheelchair. "She's bored," her mother said.

Although the prevailing philosophy in North America is to push disabled

and psychiatric patients out the doors of institutions, Ontario is holding

fast to the public purse strings when confronted by people with

disabilities who want to live in their own homes.

Across Canada, while people have been sprung from institutions over

the decades, many remain behind as provinces struggle with writing fat

cheques for helplessly disabled people to live a step closer to ordinary

lives.

"The work we've been doing indicates this is a general problem in

Canada," said Cameron Crawford, president of the Roeher Institute in

Toronto, a think tank on disability issues. "It seems to be the case

regardless of province or territory."

In Ontario, there is a hodgepodge of funding for disabled people to live

at home that straddles two government ministries, but the money is

doled out sparsely, and usually to the families that squawk the loudest.

With this in mind, a $700-million class-action lawsuit was launched a

month ago on behalf of Ontario parents with disabled children who,

with little or no government funding to care for their children at home,

resorted to extreme measures such as signing custody over to children's

aid societies.

"There are an awful lot of people stuck in institutions right now where

they shouldn't be," said Patricia Spindel, a sociologist at Humber

College who acts as an advocate for disabled people. "The [Health]

Ministry does not have a plan for funding attendant care for people who

want to live independently."

Hale despite the ravages of cerebral palsy that restrict her to a diet of

ground food, Dani is surrounded by children with life-threatening

medical whose survival hangs on hospital machinery. For them, living at

home is out of the question.

For her, as useless as her body is, living at home is entirely possible. But

even in an era when cash-strapped hospitals are evicting patients in

record time, she has occupied a bed in a medical institution far longer

than anyone thinks she should have.

"She is not medically complex or fragile. She's very stable and really

quite healthy," Sheila Jarvis, Bloorview's chief executive, said.

Bloorview staff are frustrated that every time they track down a new

home for Dani, her mother dismisses it out of hand. For Ms. Harder, it

comes down to the rights of physically disabled people with razor-sharp

minds to choose where they will sleep at night and what they will do

during the day. To live in a group home, as Bloorview staff propose,

would be to live with people suffering mental disabilities, to follow

routines dictated by others.

That point was drilled into Ontario Social Services Minister John Baird

when Dani and her mother confronted him outside the legislature at

Queen's Park last week.

"Do you get to live where you want to, who you want to live with, and

what leisure activities you do?" Danielle chided him in the monotone that

pipes out of her computer speaker. "Why shouldn't I also?"

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