Whats Up Magazine — Bracebridge/Gravenhurst

Melanie Scribner plays with her five-year-old daughter Jeana Lynn Johnson who was diagnosed with a form of leukemia in November 2008.
Finding help when a child falls ill
Life changed completely for Gravenhurst resident
Melanie Scribner and her daughter Jeana
Lynn Johnson on Nov. 17, 2008. On that day,
Jeana Lynn, who is now five years old, was diagnosed
with acute lymphoblastic leukemia.
It’s not just the threat of the treatment failing – they
won’t find out for another two and a half years whether
the treatment she is undergoing will be fully successful –
or the frequent visits to hospital in Toronto, or the pain,
or the missed school, or the hair loss.
It’s also the money.
“Most of her medical expenses are covered, but there
are certain things that aren’t,” says Scribner.
She adds, “I’ve had to take a month off of work without
getting paid. When she was originally diagnosed we
were living from major bill to bill, and the credit card
bills fell in between the cracks.’”
Scribner applied to the Ontario Drug Benefit for help
in November but wasn’t accepted until January. The family
spent $1,000 on medications for Jeana Lynn in the
meantime.
It is hard for her to hold a job when she not only has
to take frequent regular days off, but emergency ones as
well. She had to quit her position as a loan representative.
“Jeana Lynn gets a fever, I’m taking the rest of the week
off,” she says.
She is very grateful to her current employer for their
flexibility, but every employer she has sought a second
job with has turned her down. “I’m classified as high-risk
and unreliable,” she says.
“There’s not a lot of solutions,” says Barbara Neilson,
an academic and clinical specialist in social work at the
Hospital for Sick Children in Toronto. “The majority of
the workforce, if they don’t work, they don’t get paid.
There have been family support groups that have worked
10 October 2009 www.whatsupmuskoka.com
Article by Karen Wehrstein and photographs by Don MacTavish
over the years to see if something could be done to
Employment Insurance, but nothing has been done.
There is no income replacement program for caregivers.”
There is Employment Canada’s Compassionate Care
Benefits Program, but that provides only six weeks of
benefits up to 55 per cent of your salary, one time
only. Muskokans can apply at the Services Canada
Jeana Lynn hugs her 15-month-old sister Holly
at the family’s home.
office in Bracebridge.
“There needs to be a better structure,” says Scribner.
“I’m trying to get 900 hours so I can go on pogey.”
A family on the Ontario Works program due to low
income can get help with medical and travel expenses,
and utility bills or rent, which are in arrears, says Heather
Moore, director of programs for Muskoka Community
Services. Other help depends on the nature of the illness.
If your water bill skyrockets because your child needs
home dialysis, for instance, Community Services can
sometimes help, Moore says.
There is also the Ontario Drug Benefit Program,
which can be accessed through the Ministry of Child and
Youth Services’ Assistance for Children with Severe Disabilities
Program, but does not cover all prescription
medications, or over-the-counter ones. The Ministry of
Health’s Trillium Drug Program can also help. Both these
programs are based on income.
Some financial relief can come as income tax deductions,
Neilson points out. Many medical expenses
including travel, meals, parking, drugs, medical equipment
can be written off. If your child has a functional
disability and so qualifies for Assistance for Children
with Severe Disabilities, you should qualify for the disability
tax credit.
“It does sometimes seem like there’s a lot of different
players,” says Kevin Spafford, spokesperson for Deb
Matthews, Minister of Child and Youth Services. The
Ministry is currently working to create central access
points in each community, he notes. “We’re working at
bringing together everyone to the table, including the
services and community.”
In the meantime, help can be accessed through social
workers. There is one on staff part-time at the
Huntsville District Memorial Hospital, notes executive