Parents of disabled kids face agonizing choices

TheStar.com – Ontario/ParentCentral.ca – Parents of disabled kids face agonizing choices
June 24, 2009.   Tanya Talaga, QUEEN’S PARK BUREAU

Kristine Gavrel-McKeague and her husband, Adrian, recently faced surrendering custody of their severely disabled newborn daughter and making her a ward of the state to make sure she received the medical care she needed to live.

The Ottawa family’s tragic case is one of 24 complaints Ontario Ombudsman André Marin highlighted yesterday in the release of his annual report.

Fifteen months ago, Penelope came into this world not breathing. She was revived 14 minutes after birth but now has severe cerebral palsy because of a lack of oxygen to her brain.

The McKeague family is unable to pay for the 24-hour care their daughter needs. At one point last August, they had to put Penelope in the temporary custody of a children’s aid society. She remained there until April 17.

Pressure from local media and the ombudsman’s office made things right for Penelope and her family. The young parents have full custody of Penelope and she now lives in a small residence for disabled children. “The only reason why we were granted what we have is because of the pressure. This is not across the board,” Kristine Gavrel-McKeague, 29, told the Star yesterday. “This is very difficult to navigate. It is just horrendous.”

But it is not supposed to be this way. The challenges facing parents who can’t afford care for disabled children was the first systemic issue Marin said his office investigated and reported on in 2005.

At the time, the office discovered 150 families who had surrendered their parental rights to the CAS in order to get their disabled children the care they needed. In response to the report, the government announced an additional $10 million to assist children with severe needs in 2005 and another $10 million in 2006. Some 65 children were returned to their parents.

But last year, Marin said his office began to receive more complaints from families caught in the same situation. As of the end of March, the office had received 24 complaints and officials say they are working with the ministry of children and youth services to resolve each case separately.

“The appalling situation … reared its ugly head again,” Marin told reporters yesterday at a news conference. “While bureaucrats dithered about which pocket the money should come from to care for these kids, families were put through unnecessary trauma and cost.”

The ombudsman had previously recommended the government consider re-legislating the power to make special-needs agreements so that they are mandatory and administered outside of child protection matters, but it was not implemented, the report noted.

Minister of Children and Youth Services Deb Matthews said her ministry always pays close attention to the ombudsman’s concerns.

However, she said Marin has shared with them only 15 cases, not 24.

“Of the new cases, no parents have been forced to give up custody of their child in order to get services that wouldn’t be otherwise available to them,” Matthews said.

Toronto Star

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