'Fighting to be our daughter’s parents'

Born with severe cerebral palsy, Daria Gallinger needs 24-hour care. Now her parents face a cruel choice: keep her at home and accept financial ruin, or give her up so she qualifies for the help she needs.

By Trisha Elliott

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.

The 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.

Our 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.”

The 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.

As 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 together.

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.

The 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 dollars.

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 service support.

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 needs.

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.

Ontario NDP 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.”

While 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 calling.”

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.”