It was one of those middle-of-the-night calls that grips you so
instantly every cell in your body snaps awake. Phone pressed to my
head, I jumped from the bed trying to make sense of what my friend Matt
was saying, reaching for a comforting response. “We love you” were the
only words I could find.
delivery had gone horribly wrong. Matt’s wife, Ioulia, and their
newborn daughter, Daria, were clinging to life. “I don’t know if
Daria’s going to make it,” Matt whispered into the phone.
family was part of the Gallinger family’s birth plan; Matt and Ioulia’s
oldest daughter, Natalia, was sleeping soundly in the next room. The
morning after the phone call, as I strove to make Natalia’s day as
normal as possible, Matt and Ioulia’s idea of normal family life was
dissolving. While it appeared as though Ioulia would recover, Daria’s
prognosis was grim.
“We were told that Daria had 72 hours. Then,
when she survived, no one really knew what to expect,” says Matt.
“Later, we received a diagnosis: Daria had cerebral palsy.”
next few months were a haze of shock and grief as Matt, a United Church
minister currently serving the Ashton-Munster pastoral charge on the
outskirts of Ottawa, and Ioulia, a computer programmer for the Canadian
government, learned that Daria had such an extreme form of cerebral
palsy that she would likely never walk or talk and maybe never swallow.
the Gallingers grew exhausted by the imposition of G-tube feedings,
emergency room visits and the vigilance required to raise a child who
could choke in the blink of an eye, they also had to summon the energy
to fight for the care that Daria requires.
These days, the
Gallingers are fighting to keep Daria, now 17 months old, at home. The
social supports in place to help their family aren’t working. They are
facing the very real possibility of having to relinquish Daria to
institutional care because they can’t afford to keep their family
They aren’t alone. In 2005, Ontario ombudsman André
Marin reported that 150 families were forced to hand over their
children to the Children’s Aid Society because they couldn’t afford to
care for them at home. In response to Marin’s findings, the government
allocated an additional $20 million to assist children with severe
special needs. As a result, 65 children who had become wards of the CAS
were returned to their families.
But the problem hasn’t
disappeared. In the last year, Marin’s office has received 40
complaints from families like the Gallingers. “We’ve been able to
resolve many of the cases, but it’s been a concern since 2005 and we’re
watching it closely,” says Marin’s spokesperson Linda Williamson.
Gallinger’S family home, like their life, is in a constant state of
flux. Dozens of medical forms are piled on the table waiting to be
sorted. A large box fixed with dangling shiny toys — a new
physiotherapy exercise — sits in the middle of the living room.
Downstairs, a room has been renovated so that the family has a private
space to retreat to when the revolving door of health-care workers gets
to be too much. There is conversation about how to best prop up Daria
in the bathtub now that she’s outgrown the baby tub, and there are
plans to knock down walls to accommodate a wheelchair and a bedroom on
the main floor.
The expense of caring for Daria is overwhelming.
In the future, the Gallingers envision purchasing successively larger
wheelchairs, medical equipment, special car seats and a bigger vehicle.
Making their home accessible will run into the tens of thousands of
But their immediate crisis is nursing care. The
Gallingers are entitled to 45 hours of nursing care a week through the
homecare system. That sounds good, but a shortage of homecare nurses
means that most weeks only about 12 of those hours are filled. To help
fill the gap in nursing care, Matt and Ioulia appealed to three
different levels of government and several media outlets. Now, the
government provides the family with 50 hours a week of developmental
There’s another catch: the developmental
service support will run out next month when Daria turns 18 months old.
Instead, she is expected to go to a government-run daycare, which is
responsible for providing nursing. But that option only reveals another
gap in the system. Last October, the Gallingers received a letter
informing them that Children’s Integrated Support Services, which
integrates disabled children into daycare, doesn’t have the funding
from the Ministry of Health to provide the level of nursing care Daria
Without adequate funding to care for Daria at home or in
the daycare setting, the Gallingers are at a loss. “If the programs
that are already in place actually worked, we would be able to get by.
But the system is broken, and it seems no one cares that we are falling
through the cracks,” says Ioulia.
The Gallingers have applied
for assistance from every program that’s been recommended to them. One
of them, the Special Services at Home program, has put them on a
waiting list. At the moment, it’s their only hope.
Leader Andrea Horwath says the Gallingers’ prospects aren’t good. She
charges that the government has closed the Special Services at Home
program to new applicants. “It’s cruel to string parents along, telling
them to apply for funding while knowing full well there’s a secret
government cap on funding any additional Ontario children with complex
disabilities,” says Horwath.
Paris Meilleur, spokesperson for
the minister of Children and Youth Services, confirms that the Special
Services at Home program isn’t accepting new applicants; 27,000
families currently receive support from the program, and 5,000 are on
the waiting list. “Demand is outstripping supply at this point,” she
says. “Since 2003, there has been a 45 percent budgetary increase to
the Special Services at Home program, and it’s important to remember
that this program is one of a wide continuum of services offered in the
complex special-needs envelope.” Meilleur says that the ministry won’t
let children be relinquished to the CAS for financial reasons. “That
won’t happen,” she states.
For the Gallingers, waiting and
wondering are taking their toll. “We believe that keeping Daria at home
is best for her and for our family. What would cost the government more
— giving us $10,000 a year through the Special Services at Home program
or funding round-the-clock nursing care for Daria plus all the costs of
running an institution? The reality is that if I called the Children’s
Aid Society now, they would put her in a home, and she would have all
the nursing she needs,” says Matt. Ioulia adds, “If Daria went into a
home, we wouldn’t be there to comfort her when she cries. . . . We’re
fighting for the right to be our daughter’s parents.”
prayer helps them through the day, the Gallingers are afraid to get
their hopes up. “I guess I do hope that some good comes out of it,”
says Matt. “My commitment to social justice is partly what led me to
become a United Church minister. The intense grief of the situation and
the necessity to fight for support has strengthened my commitment to my
Ioulia’s hopes are more specific. “I hope we can
keep our family together. I hope we can keep our home. I hope we can
keep our sanity. But I am so scared. Our life is like a house of cards.
If one more aspect of the system fails us, I’m afraid our family will
come crashing down.”