10/12/2012 12:50 EDT | Updated 12/12/2012 05:12 EST

Ontario family told to put disabled girl, 21, in nursing home or give up custody

TORONTO - An Ontario woman whose husband is dying from cancer choked back tears Friday as she said the family was told to put their disabled adult daughter into a nursing home or give up custody if they want her to remain in a group home.

Wilma Arthurs, 58, of Sarnia, said it was devastating to realize she and her husband Chris, who has colon cancer, could no longer care for Emilia, 21, who suffered brain damage as an infant that left her with epilepsy, deafness and severe autism.

"After weeks of discussion we made the gut-wrenching decision to bring Emilia to respite and then tell our local Community Living we would not be picking her up," Arthurs told reporters at a news conference at the Ontario legislature.

"It was the most difficult decision our family has ever had to make, and the most heart-breaking thing I have ever experienced. I miss Emilia terribly but I know it is all we could do. We had no other choice."

Her husband's illness finally made it too difficult to keep Emilia home.

"I had to give Chris injections he couldn’t give himself," said Arthurs.

"I couldn’t lock Emilia in her room as she would smear feces, so Chris would lie on the bed and hold Emilia by the hands while I gave him his injections."

Emilia doesn't understand language and can be very difficult to control physically, especially when she gets frustrated, and functions at the level of a two- or three-year-old. The idea of putting her into a nursing home is "terrifying," added Arthurs.

"She wasn’t aggressive, but she could harm my mom. I can’t see Emilia being in a setting with a whole place full of old people," she said.

"They would have to lock her in a room or sedate her or something."

Emilia is now in a respite home run by Community Living Sarnia Lambton, but the agency told the Arthurs it would be forced to apply for custody if she was to stay there in order to get provincial funding for her care.

"May I suggest that you engage in a pursuit of finding a nursing home in which Emilia could reside," wrote Community Living's John Hagens in an email to Arthurs Oct. 10.

"Should you not wish to proceed in this direction then, unfortunately, CLSL is left with no recourse but to apply to the Public Guardian and Trustee Office to assume responsibility for her affairs and personal decision making. This will be a journey that our association would rather not travel."

The NDP said the Ministry of Health would have to spend $50,000 a year to keep Emilia in a nursing home, and called on the Ministry of Community and Social Services to provide funding to keep her in the Sarnia respite home.

"No one should ever be forced with the decision to either give up their child or care for their ailing husband," said New Democrat youth services critic Monique Taylor.

"This family is in a crisis, struggling to find an appropriate care solution, but the government hasn’t been willing to help."

The family wants to keep Emilia in the Sarnia respite home, said Arthurs.

"Emilia knows the respite house she’s in, the staff know her well and we know that she’s receiving excellent care that allows her to be happy and safe," she said.

The Ministry of Community and Social Services said Friday that it does not ask families to give up custody of their family members.

"There are many reasons why a family may no longer be able to care for their adult child, and we rely on the expertise of our community partners and agencies who deliver these services for the day-to-day case management of their clients," said ministry spokeswoman Sandy Mangat in an email.

"Each situation is unique, and ministries work together tirelessly to find the right solutions for Ontarians within their set resources."