Canadian couple struggles to provide services for daughter with Down syndrome

From The Telegram in Newfoundland:

The parents of a five-year-old girl with Down syndrome say they have nowhere to turn for help after falling on hard luck and moving to the province.

Things took a turn for the worse when Elmer Harvey tried to go back to work last June in Mississauga, Ont., after quadruple bypass surgery.

He said that despite his doctor’s clearance and his boss’s assurances, the board of the condominium building where he was a superintendent decided to terminate his employment, deeming him unfit for the duties.

Harvey, partner Michelle Pye and daughter, Leah, were then given seven days to get out of the condo they had been living in while he worked in the complex, the couple said.

Pye, a native Newfoundlander, couldn’t afford on her salary alone to pay rent and childcare expenses because Harvey wasn’t able to take constant care of Leah due to his health.

So they made the tough decision for her to quit her job of nearly two decades and move the three of them home to Newfoundland, where she had family support.

Since arriving home and looking for work, the couple tried to apply to the provincial government for some assistance for speech therapy for Leah so she can go to school next year, as well as financial help to buy pull-up diapers, special shoes, glasses and other things the little girl might need.

But the couple said they were told by Health and Community Services they made too much money last year.

Harvey was out of work in June, and Pye in November, with employment insurance to live on.

After being told to move out in a hurry from their condo, they lived two weeks in a hotel and then had relocation expenses to St. John’s, where they now rent a basement apartment. So they had no reserves.

“We tried to get a bit of help for her,” Pye said of their appeal to the government.
Pye said things seemed to be looking up at first, and then they were told they didn’t qualify and to try again next year. But by then, the couple hopes to have found jobs and get Leah in school.

“We need help now,” Harvey said. “We don’t know where to turn.”

“We never had any help for her since she was born. We both worked,” Pye said, adding attempts to get services such as speech therapy in Ontario wound up mired in red tape and waiting lists.

“She’s such a little sweetheart,” said Harvey, his eyes gleaming as his daughter watches dinosaurs on TV.

Pye said that in Newfoundland the couple has been told they have to pay out more than they have coming in to qualify for help.

But Harvey said the couple doesn’t have a drug plan now — he requires medication — and is already juggling their finances to keep things going while he puts resumés around town for work.

“They don’t count what we require for her,” Pye said.

According to the Department of Health, which does not comment on specific cases, a calculation is done to determine special services and assistance, including home care. The calculation weighs family income and liquid assets against expenses, and decides what the family should contribute to the special needs.

Jeff Hutchings, chairman of the Newfoundland and Labrador Down Syndrome Society, said the process for accessing services for special needs children is intrusive and should not be based on financial means.

Harvey and Pye have not made any contact with the society yet. But Hutchings told The Telegram families with children with Down syndrome trying to get respite support have been asked too many personal income questions about their spending habits.

“I was completely offended,” he said of a case recently discussed at the society’s board meeting.

“The hoops they have to go through for that process … I couldn’t believe it had to come to that.”

Hutchings said he knows of other families dealing with the system that have come across stumbling blocks. He also said children are treated differently, depending on their diagnosis.

For example, he said a child with both Down syndrome and autism can get services, whereas a child with only Down syndrome cannot.

“It should be a need-based thing,” he said, adding the Department of Health and Community Services should be stepping up to help families and the policies should be consistent among special needs groups.

He said the waitlist for therapy can be from six months to 15 months, or more.
Hutchings said one family who moved here was told they had to wait more than a year just to get an assessment of their child’s needs.

“That’s a long time in a child’s life,” Hutchings said.

He said it’s been proven time and time again that early intervention helps children with Down syndrome progress.

“There’s not enough assistance,” Hutchings said.

He said those who work with the Down syndrome society are a small group of working parents who volunteer their time.

The provincial society does provide some speech therapy, paid for by its fundraising efforts, but Hutchings said that’s just a stopgap measure.

“Our efforts should be going into awareness, building resources and lobbying government,” he said.

Down syndrome occurs in about one in 800 births. According to the Canadian Down Syndrome Society’s website, Down syndrome is a naturally occurring chromosomal arrangement and commonly has an effect on learning style, which varies from person to person.

Those with Down syndrome can also be predisposed to certain illnesses and medical conditions, but Down syndrome itself is not a disease, disorder or defect.