By Kevin Ritchie
After 20 years living in a hospital, Danielle Harder is looking forward to getting out and getting a life.
The 26-year-old aspiring writer has put her studies at Ryerson on hold to concentrate on finding a new place to live. She’s long outgrown her residence at Bloorview Macmillan Centre, a children’s rehabilitation hospital near Leslie and Sheppard Streets. Her room is a mix of childhood charms—faded stickers of a sun and moon decorate a window, a Backstreet Boys poster the nurses put up adorns the wall—and the trappings of being a twentysomething—a pile of laundry sits on the floor, various hair-care products and blow-dryer lie on the table beside her bed.
The housing choices for someone like Dani are limited. She has cerebral palsy, a disease that has left her paralyzed below the neck and unable to speak. Although she needs an attendant to help with every task, Dani has control of her head and communicates through a computer attached to her wheelchair, which speaks for her when she presses pedals at both sides of her head.
Bloorview officials have asked Dani to find a new home. They first dropped the hint 10 years ago, but since then a number of deadlines have come and gone. Over the past year, the children’s rehab hospital has stepped up the pressure on the Harder family, though they can’t force her to leave.
The Ministry of Health and Long-Term Care has offered Dani a room in a chronic-care hospital. A group home has also accepted her for a new government-approved housing project for disabled people. But Dani’s mother, Karen, says both options don’t adequately meet the level of care her daughter needs.
She wants her daughter to move into an apartment she bought along with another mother of a disabled man. The only problem is the provincial government won’t give Dani the money she needs to make this possible. This has left her in limbo, as is the case for many young disabled people who have the mental capacity to attend university, but instead waste away among sick seniors in chronic-care wards as they wait for adequate housing that, more often than not, never comes.
“She is playing up to that camera,” Karen says during a visit by a photographer and a reporter. “You are a flirt!”
The people who know Dani best look to her eyes for answers. (She rolls them upward to indicate yes and side to side to say no.) Shy at first, Dani eventually relaxes, laughing frequently and batting her eyes at the photographer. Her mother says you can easily tell when Dani is upset. “We call it the F-off and die look.”
Dani typically takes at least give minutes to formulate and answer, so during interviews her mother asks questions and reads her body language for responses. But if Karen starts to gab away, Dani will interject with a biting remark. “Chat hog,” she teases.
The last time Dani took a course at Ryerson was in 1998. It took four hours of preperation to make it to her 10 a.m. music class. She would wake up at 6 a.m., bathe, dress and eat breakfast before heading out for her two-hour ride to school on a Wheel Trans bus. The Harder family says if they went with either of the ministry’s options, the chronic-care facility or the group home, it would be nearly impossible for Dani to go to school because, in part, it would take much longer to get to class.
Karen, a divorced high school math teacher, came up with a plan that falls somewhere between the ministry’s two options. She and the mother of another disabled person, Eva Millard, pooled together their retirement savings to buy an apartment for their children.
Karen says this plan, unlike the ones involving the group home and chronic-care hospital, will mean more spontaneity, allowing Dani to choose what and when she eats, and when she goes out. But the families don’t have the money required—$83,000 a year per person—to pay for the pair’s day-to-day medical needs. “The reason it’s so much is because they not only need physical care with every single thing you can imagine, but because their minds are bright, you can’t just plunk them in front of a TV everyday,” Karen says. “You have to allocate staff to accompany them to whatever activities they choose for their daily routines.”
Provincial government policy currently caps funding to disabled people at $58,000 a year. The rules for long-term care funding specify the money must got to an approved agency that administers it on behalf of clients. In order for Karen’s housing plan to work, the money would have to be distributed differently. “There’s no way around the fact that the funds would go directly to [Dani],” says Thom Burger, executive director of New Visions Toronto, a non-profit agency that helps find cheaper housing for disabled people. In Dani’s case, the agency would provide the staffing she and her roommate would need to live in their own apartment. It would not get the funding because it’s not responsible for the home.
Ontario MPP Steve Peters, who until recently was the disabilities critic for the provincial Liberal Party, has lobbied for Dani in the legislature. He has also helped bring her predicament to the attention of the assistant deputy health minister, John King, who will decide whether Dani gets the money she needs. “Dani’s situation has the potential to help a lot of other people,” Peters says. A ministry spokesperson said he didn’t have time to be interviewed.
The government’s initial placement for Danis was Riverdale Hospital, a chronic-care facility that could only give her one-and-a-half hours of care each day. “It takes two hours to get my daughter up, dressed and fed,” Karen says. “For the rest of her life, this is not suitable.
At $93,000 a year, Riverdale’s price tag is even higher than Karen’s plan. Burger says administration and professional staff are the reasons the Riverdale option costs more. Besides the cost, the type of patients that would surround Harder—sick seniors who require chronic or palliative care—also make this option unattractive. Moreover, Riverdale’s activities aren’t geared toward people as young as Dani.
The Scarborough-based group home Participation House Toronto Parent Association is the government’s plan B for Dani. Last spring, the province allocated $58,000 to the group home to set up an apartment for Harder under a newly approved housing project for disabled people. The apartment Participation House wants to place Dani in is in Scarborough, near its other group homes. East of the Metropolitan Toronto Zoo, the apartment is too far for Dani to commute to Ryerson, Karen says. She also thinks the bathroom is too small and the hallways are too narrow for Dani’s wheelchair. Participation House’s director says plans are underway to modify the apartment.
“We want to provide the best we can within the allowable resources,” Anne Pahl says, “so that the people involved in our programs are going to get the best possible life according to what their wishes are [and] the family’s wishes.”
But Karen contends Participation House refused to allow the family to have much say on the issues such as the apartment’s location and staff hiring. In a letter to Karen, Participation House’s chairman Peter Dudley says the Harder family would have no input in hiring support workers. “There is not now and will not be involvement of the Board or families in the interviewing or hiring process. Supervision, direction, and scheduling of our front line staff is the sole responsibility of our management team.”
Karen believes letting her daughter have a say in who gets hired will help foster a positive relationship between Dani and the staff. Paul says the agency makes the dinal decision because it’s ultimately liable for who they hire.
When asked what she’ll miss most about the place that’s been her home for 20 years, Dani’s body tenses up as she concentrates on the scrolling computer screen and spells out an answer. “Crazy Dorette,” she replies, referring to one of the nurses at Bloorview. In fact, whenever Dani interjects in the interview, it’s usually to mention the people she enjoys working with.
For now, all that she and her mother can do is wait for the Ministry of Health and Long-Term care to make a decision on funding. Karen says she’s unsure what she’ll do if the money her daughter needs to live in the apartment she bought doesn’t come through. And while Bloorview doesn’t have the power to kick Dani out, the search for a suitable home would have to continue.