David Baxter PhD
Late Founder
Mother fights to ease financial burden of caring for sick child
by Norma Greenaway, The Ottawa Citizen
Monday, May 26, 2008
Fiona McKenney knows first hand every parent's worst nightmare -- having a child diagnosed with cancer.
She knows the around-the-clock angst, and shudders at the memory of being flooded by waves of physical and mental exhaustion.
Ms. McKenney also remembers the stress it put on her family's finances when she had to take an unpaid leave from her job as a child-care worker to be at her son Joshua's side through months of treatments.
"Imagine going through hell and back for your child, and having to worry about the bills, as well," she says.
The experience has turned Ms. McKenney into a leading crusader for a federal compassionate care program that would provide Employment Insurance (EI) benefits to parents forced to stop working to care for a gravely ill child.
"I'm not asking the government for a free handout," says Ms. McKenney, who paid into the EI fund for 11 years before Joshua was diagnosed at age five with Hodgkin's Lymphoma.
The cause has attracted the attention of Conservative MP Gord Brown, who this month introduced a private member's bill in the House of Commons that would allow parents of seriously ill children to collect up to 52 weeks of EI benefits.
The Childhood Cancer Foundation Candlelighters Canada and National Family Child Care Association also support the idea and there's an active Facebook group where parents of sick children and their allies are weighing in on the issue.
"It's the right thing to do, and I'm going to continue to push it," said Mr. Brown, MP for the Ontario riding of Leeds-Grenville.
Sara Landriault, head of the child care association, sees the issue as a major test of the Harper government's professed interest in pursuing family-friendly polices, not to mention similar claims by the federal opposition parties.
"Who is going to say no to this? It's not going to happen. If it does, they will be crucified," said Ms. Landriault.
The existing compassionate leave program allows caregivers to receive up to six weeks of EI benefits on condition they provide a doctor's certificate that their loved one is not expected to live beyond six months.
Created by the former Liberal government and broadened slightly by the Conservatives, the program has long been criticized for not being generous enough to help most people coping with the stress of looking after a dying loved one.
They point to the relatively poor uptake since it was introduced in 2004 as evidence it needs reforming. Though the number of claimants has risen slowly since 2004, the government has already reduced its forecast spending on the program for this fiscal year to $10 million from $12 million, based on partial figures of what the actual uptake was in the year that ended April 1.
Compassionate-care advocates say the biggest hole in the program is that it leaves parents of seriously ill children in a lurch because of the requirement of a doctor's death note.
"No parent ever wants a piece of paper saying their child is probably going to die," Ms. McKenney says. "That's like a death sentence to me."
Like many others, Joshua's cancer was caught early and deemed to be highly treatable over four to six months.
There are 1,300 new cases of cancer in children each year, according to the cancer foundation.
Ms. McKinney discovered the hole in the compassionate care program two years ago when Joshua was diagnosed and she discovered she didn't qualify for the federal "compassionate care" program because her son was not expected to die within six months.
To her surprise, an official suggested she could collect EI sick benefits if she got a note from her doctor saying she is too stressed to work.
"I told him 'no, no, it's my son who is the sick one,'" she recalled in an interview. "He said, 'I know, but you can get a stress note.' I just couldn't bring myself to lie to get EI."
Ms. McKinney and her husband and family managed to survive financially with the help of friends and family in their community of Kemptville, and Joshua has been in remission for 18 months.
David Stones, president of the Childhood Cancer Foundation, said the organization fields countless heartbreaking pleas for financial help from parents - many of whom are required to travel with their sick child to one of 17 childhood cancer-treatment facilities in Canada.
"The financial burden hits very fast, and it hits extremely hard for some families," Mr. Stones said, explaining the foundation ends up picking up the funeral tab for as many as 40 families a year who can't even afford to bury their child at the end of the treatment schedule.
Mr. Stones said reforming the compassionate care program along the lines of Mr. Brown's bill would fill an urgent need.
"We have identified this as the No. 1 issue for us because we think it is very doable," Mr. Stones said.
"It should be well within the government's financial means to address this point."
by Norma Greenaway, The Ottawa Citizen
Monday, May 26, 2008
Fiona McKenney knows first hand every parent's worst nightmare -- having a child diagnosed with cancer.
She knows the around-the-clock angst, and shudders at the memory of being flooded by waves of physical and mental exhaustion.
Ms. McKenney also remembers the stress it put on her family's finances when she had to take an unpaid leave from her job as a child-care worker to be at her son Joshua's side through months of treatments.
"Imagine going through hell and back for your child, and having to worry about the bills, as well," she says.
The experience has turned Ms. McKenney into a leading crusader for a federal compassionate care program that would provide Employment Insurance (EI) benefits to parents forced to stop working to care for a gravely ill child.
"I'm not asking the government for a free handout," says Ms. McKenney, who paid into the EI fund for 11 years before Joshua was diagnosed at age five with Hodgkin's Lymphoma.
The cause has attracted the attention of Conservative MP Gord Brown, who this month introduced a private member's bill in the House of Commons that would allow parents of seriously ill children to collect up to 52 weeks of EI benefits.
The Childhood Cancer Foundation Candlelighters Canada and National Family Child Care Association also support the idea and there's an active Facebook group where parents of sick children and their allies are weighing in on the issue.
"It's the right thing to do, and I'm going to continue to push it," said Mr. Brown, MP for the Ontario riding of Leeds-Grenville.
Sara Landriault, head of the child care association, sees the issue as a major test of the Harper government's professed interest in pursuing family-friendly polices, not to mention similar claims by the federal opposition parties.
"Who is going to say no to this? It's not going to happen. If it does, they will be crucified," said Ms. Landriault.
The existing compassionate leave program allows caregivers to receive up to six weeks of EI benefits on condition they provide a doctor's certificate that their loved one is not expected to live beyond six months.
Created by the former Liberal government and broadened slightly by the Conservatives, the program has long been criticized for not being generous enough to help most people coping with the stress of looking after a dying loved one.
They point to the relatively poor uptake since it was introduced in 2004 as evidence it needs reforming. Though the number of claimants has risen slowly since 2004, the government has already reduced its forecast spending on the program for this fiscal year to $10 million from $12 million, based on partial figures of what the actual uptake was in the year that ended April 1.
Compassionate-care advocates say the biggest hole in the program is that it leaves parents of seriously ill children in a lurch because of the requirement of a doctor's death note.
"No parent ever wants a piece of paper saying their child is probably going to die," Ms. McKenney says. "That's like a death sentence to me."
Like many others, Joshua's cancer was caught early and deemed to be highly treatable over four to six months.
There are 1,300 new cases of cancer in children each year, according to the cancer foundation.
Ms. McKinney discovered the hole in the compassionate care program two years ago when Joshua was diagnosed and she discovered she didn't qualify for the federal "compassionate care" program because her son was not expected to die within six months.
To her surprise, an official suggested she could collect EI sick benefits if she got a note from her doctor saying she is too stressed to work.
"I told him 'no, no, it's my son who is the sick one,'" she recalled in an interview. "He said, 'I know, but you can get a stress note.' I just couldn't bring myself to lie to get EI."
Ms. McKinney and her husband and family managed to survive financially with the help of friends and family in their community of Kemptville, and Joshua has been in remission for 18 months.
David Stones, president of the Childhood Cancer Foundation, said the organization fields countless heartbreaking pleas for financial help from parents - many of whom are required to travel with their sick child to one of 17 childhood cancer-treatment facilities in Canada.
"The financial burden hits very fast, and it hits extremely hard for some families," Mr. Stones said, explaining the foundation ends up picking up the funeral tab for as many as 40 families a year who can't even afford to bury their child at the end of the treatment schedule.
Mr. Stones said reforming the compassionate care program along the lines of Mr. Brown's bill would fill an urgent need.
"We have identified this as the No. 1 issue for us because we think it is very doable," Mr. Stones said.
"It should be well within the government's financial means to address this point."
