Reforms Never Come

July 23, 2009 permalink

Ontario parents of severely disabled children are still being forced to surrender custody to their children's aid society in order to get the large amounts of care they need. This in spite of an unsuccessful class-action lawsuit with lead plaintiff Anne Larcade, and a promise by Minister of Children and Youth Services Marie Bountrogianni to end the practice, a promise broken when the minister was removed. Real reform in this area remains unlikely as long as children's aid is funded from appropriations. That process makes every CAS ward a source of revenue, revenue whose amount increases with the level of disability. While a healthy child can bring a mark-up (excess of appropriated funds over costs) of a quarter million dollars, the severely handicapped produce rates ten or twenty times as high. Too much temptation for CAS managers to overlook. Previous stories on the Larcade suit are at June 20, 2003, May 17, 2005, March 21, 2005, August 9, 2005 and November 24, 2006.

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`Where's Ontario's humanity?' mom asks

BILL SANDFORD FOR THE TORONTO STAR
Anne Larcade, shown with sons Emile, 13, left, and Alex, 19, once launched a lawsuit to help families get care for their severely disabled children.

Still no policy to ensure parents won't have to lose custody to get care for disabled kids

July 23, 2009, Tanya Talaga, Queen's Park Bureau

Single mother Anne Larcade eventually won long-term health care for her son Alex from the Ontario government after nearly losing custody of him to children's aid officials nine years ago because she could not afford to place him in a special group home.

Larcade was outraged after reading Monday's Star story on the plight of an Ottawa family faced with a similar problem – years after the province vowed to make sure parents would never have to give up custody rights to secure medical care.

"Where is Ontario's humanity?" Larcade said in an interview this week.

The Huntsville mother and a chorus of others are calling on the province to put an end to the situation once and for all by returning to the use of special needs agreements to ensure severely disabled children receive proper care and remain in the custody of their parents.

Matt and Ioulia Gallinger of Ottawa are trying to raise their severely disabled 11-month-old, Daria, at home, but fear they may not be able to in the long run because of a lack of provincial support for special-needs children. A brain injury during birth left Daria with severe cerebral palsy and developmental delays. She needs around-the-clock medical care.

The Gallingers say they've been told if they can't afford the bills, they can surrender custody of Daria to the children's aid society.

Larcade was the lead plaintiff in a $500 million class-action suit against the province that was dismissed in 2006 by the Ontario Court of Appeal. Larcade took the case to the Supreme Court of Canada, where it was also dismissed.

The Child and Family Services Act at one time allowed parents to enter special needs agreements with the government, under which they would retain custody of their children and still get specialized access to group homes and services.

The previous Conservative government put a moratorium on such agreements in 1999. Instead, ad hoc solutions and funding are scraped together by the government for individual families.

"There is no provision for care beside special needs agreements," Larcade said. "It is a grey wasteland for parents of frantic Internet research, doctors who don't know, services that are a fragmented map in disarray, and government people who say, `I don't know what to do.'"

Alex is now 19 and has lived in care for nine years under a special agreement, Larcade said. "He is autistic and mentally delayed, but yet is one of the most beautiful minds and human beings I have ever known. We would not have maintained custody save for the pressure on our story through the media which brought to bear a satisfactory, one-off, solution. The government said this would never happen to another family," she said.

Last month, Ontario Ombudsman André Marin revealed his office was contacted by 24 families, including the Gallingers, who feared they could be forced to relinquish custody because they can't afford their children's medical costs.

Four years ago, Marin found 150 families forced to surrender parental rights to children's aid societies to get around-the-clock medical care. The government stepped in, investigated each case and returned children to their families.

"The plight of children with special needs is a dark chapter in Ontario public policy," Marin told the Star this week. He has urged the government to reintroduce special needs agreements separate from child protection matters.

The Ministry of Children and Youth Services remains committed to solving each case individually, and is not considering a return to special needs agreements, said ministry spokesperson Kevin Spafford. "This is the route we've chosen," he said.

The Gallingers have been offered short-term assistance from the ministry and can have a home caregiver until February, at which time Daria will be 18 months old and ready for daycare, Ioulia Gallinger said. But to go to daycare, Daria needs a specially trained aide or nurse, and there are no commitments from the government past February, said Matt Gallinger, a United Church minister.

Special needs agreements were put in place to deal with these cases and "nothing has replaced it," said Mississauga lawyer Laughlin Campbell, who nine years ago helped attain long-term government funding for Luca Rosati, a then 2-year-old severely disabled boy with cerebral palsy whose story was featured in the Star.

Source: Toronto Star