Families in Alberta who faced giving up parental rights to get medical care for their severely disabled children convinced the province to change the law to let them keep their kids and get help to pay for their care.

Under Alberta’s Family Support for Children with Disabilities Act, parents who can’t afford steep medical bills for children needing round-the-clock medical care are given assistance outside of child welfare.

“The feedback we received from the families was kids with disabilities are in a unique situation compared to the kids who need protective services,” said Trevor Coulombe, a spokesman for Alberta’s ministry of children and youth services. The act provides parents with funding to access services and according to the latest numbers available, about 8,200 Alberta kids used the program.

The Alberta act is something other provinces should consider, said one Edmonton mother who gave up her disabled daughter in the early 1990s and then fought to get her back. She was successful in bringing her home but the child died months later.

The girl is now subject of an impending Alberta fatality inquiry and investigation so she cannot be named. Her mom alleges she was abused by her foster family.

She was born in 1993 with a rare chromosomal disorder. The parents say at the time of her birth, they were advised by Alberta officials to surrender guardianship in order to secure services and funding for her impending extraordinary needs. She remembers being told it was the “kindest thing you can do” for her daughter.

However, the mother alleges foster care was disastrous. Her daughter was dangerously thin, had at least seven broken bones, and unexplained bruises, she says. “She was 50 pounds for three years in a row, she was heading into her 13th birthday at 50 pounds,” the mom said. “My daughter had seven broken bones, we were told she had fragile bone syndrome.”

After repeated attempts to gain some involvement in her daughter’s care while she was in a foster family, the mother regained custody back and she came home by the end of June, 2006, where she thrived. Her daughter came home in June 2006, but died of sudden cardiac arrest the following December.

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