Poorest parents of disabled kids fight burnout, get little help from Ottawaテつ*
SUE BAILEY
Canadian Press
Sunday, December 08, 2002

OTTAWA (CP) - Danny Gallant's mom and dad spent the first two years of his fragile life trading bleary-eyed shifts. One parent would sleep at night, the other during the day, said Jennifer Gallant, 26, from her home in Dartmouth, N.S.

"It was taking two of us just to keep him alive." Danny, now 5, suffered complications from lack of oxygen at birth. He also has cerebral palsy.
As a newborn, he needed medical intervention every few hours - it was provided by his frazzled parents.

They are among up to 20,000 low-income families caring for severely disabled children across Canada.

By its own admission, the federal government isn't doing enough to help them handle what one observer calls a "straitjacket" of competing demands: trying to raise a child and earn a living while devoting an average of 50 gruelling hours a week to medical needs.

The Liberals opened Parliament in September with a throne speech promising "targeted measures" to ease the burden.

Liberal leadership hopeful Paul Martin said last month his government's failure to draft a comprehensive disability plan is "unforgivable."

But Martin was finance minister through the deficit-slaying spending cuts of the mid-1990s. Social programs shrank. And even in rich fiscal times, disability issues have lost out to other priorities.

Even worse, say critics, Ottawa's meagre efforts exclude those who need help most.

Federal aid through the Disability Tax Credit misses the poorest families, concedes Deborah Tunis, director general of the office for disability issues at Human Resources Development Canada.

"To qualify for any of these programs, you really have to have an income of more than $20,000 (net)," she said.

About 20,000 families across Canada don't meet that target. They rely on a patchwork of provincial programs that advocates say are an underfunded recipe for caregiver burnout.

One-third of young children with disabilities are in families living below Statistics Canada's low-income cutoff, Tunis acknowledged.

Earning potential is curbed when one parent must stay home to provide full-time care.

A recent study found that families with disabled children were almost twice as likely to rely on food banks as those with able-bodied kids - 14 per cent compared to nine per cent.

"They're running out of money," Tunis said in an interview.

Federal officials are assessing whether the answer lies in enhanced tax credits
or other measures, and they must tread carefully because provinces have jurisdiction over such social programs.

Still, Tunis said, there is consensus that needs are not being met.
"There is a group of families that don't have access to all the supports they need. And there is an opportunity to act on that."

Policies are being developed, but action will ultimately depend on spending priorities to be defined in the next federal budget, likely in February.
Help can't come soon enough for struggling families.

Jennifer Gallant, 26, now a single mom, lives on social assistance and has had one brief holiday since her son was born.

Danny uses a wheelchair or standing frame, needs constant care to prevent choking and has the mental comprehension of a toddler.

He cannot talk or feed himself, and a common cold could kill him.
"Running Danny's life is like running a business," Gallant said.

He depends on supplies of oxygen, special dietary formulas and costly drugs to prevent seizures.

Gallant gets help from Danny's dad and her family.

The little boy spends weekdays at a developmental centre in nearby Halifax where he gets physiotherapy and occupational therapy.

Transportation - a major problem for poor families with children in wheelchairs - is possible only because relatives helped Gallant buy a used van for $1,700, she said.

And she's luckier than low-income parents raising disabled kids in rural areas.
"Those people are cut off completely," she said.

Gallant receives enough respite funding from the province for two weekends off a month. She pays her mother $10 an hour to care for Danny while she gets caught up on groceries, laundry, supplies and other errands.

"I don't feel comfortable going outside family right now because Danny is so vulnerable."

As a volunteer advocate for families with disabled children, Gallant says parents need more respite care to recharge their batteries; recognition and more support for those who must give up jobs to provide full-time care at home; and attitudinal changes that would help families feel less isolated and more socially accepted.

"There's no validation for the fact that I work more hours than most people who work outside the home," Gallant said.

She would like to become a nurse.

But precious provincial subsidies for her three-bedroom townhouse, her son's $5,000 wheelchair, his costly drugs and other supports would be lost if she ever earned more than $40,000 a year.

"It really backs families into a tight spot," Gallant said. "We don't have any choice but to make the best of what we have and take whatever crumbs come our way."

Putting her son in a state-funded group home is a dreaded option, she added.
"It's a smaller form of an institution. It's still incarceration. And it's a lack of individuality, dignity and choice.

"We've already decided as parents: These are our children, and we'll take care of them as best we can. Unfortunately, parents die doing it."

And they sometimes kill their children.

Disabled advocates only recently began to track the number of murders and suicides involving such families.

Canada has had some disturbing cases.

Facing health and money troubles, Maurice and Belva Baulne of Kelowna, B.C., taped a hose to the exhaust pipe of their motorhome last New Year's Eve.

They shut themselves inside with their son Reece, 34, a mentally disabled man with violent epilepsy.

The Baulnes had been turned down three years earlier when they asked the province for funding to help care for their son at home.

The thought of Reece among strangers in a group home was too much, they said in a suicide note.

In March 2001, Rachel Capra Craig of Montreal was charged with the first-degree murder of her daughter Chelsea, 14.

The teen had Rett's syndrome, a rare brain disorder. She could not talk or feed herself and died after consuming what police called a "poison cocktail."

And Saskatchewan farmer Robert Latimer is serving a life sentence with no chance of full parole for 10 years for the second-degree murder of his daughter.

Tracy Latimer, 12, died in 1993 when her dad piped exhaust into the cab of his pickup truck. He said he did it to end chronic, severe pain from repeated surgeries to ease cerebral palsy.

"I don't want to suggest there are tens of thousands of parents who are one support away from murdering their kids," said Michael Bach, executive vice-president of the Canadian Association for Community Living.

"That's not the case. . . . But the big difficulty is we haven't found a way of supporting families to provide their major care-giving role."

In 70 per cent of cases, disabled people who need in-home care receive it from unpaid relatives, Bach said.

"But we don't have a labour market or Employment Insurance system that recognizes that."

Parents of disabled children need to be able to take paid leaves with job protection, Bach said.

Ottawa could also help by enhancing the Child Tax Benefit to reflect extra costs faced by parents of disabled children, Bach said.

There should also be a benefit to help cover big-ticket items such as wheelchairs and costly prescriptions, he added.

As for programs, Ottawa could sidestep jurisdictional pitfalls by transferring to the provinces funds specifically meant for disability programs, Bach said.
Federal funds should be aimed at allowing families greater control over and access to front-line supports, he said.

Jennifer Gallant looks forward to any help to ease her daily struggle and make the future less daunting.

But she isn't counting on a federal government that has promised action for years - with little result.

"I'm going to have to make a lot of money to take care of my child and take care of my future," she said. "It's extremely frightening."

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