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Homes for people with intellectual disabilities: Barbie's story

Parents of 30-year-old say she was neglected in a Cape Breton home

by Rana Encol

Barbie, one year ago. She now lives at home with her mother, Barbara. (Photo courtesy Barbara Deal).
Barbie, one year ago. She now lives at home with her mother, Barbara. (Photo courtesy Barbara Deal).

Life’s been tough for Barbara “Barbie” Louise since she was evicted from the Chemoi Group Home in Cheticamp, Cape Breton, in 2010. Now living at home, a caregiver visits her three times a week, totalling 10 hours for the week. She requires constant supervision and her mother is left looking after her for most of the day.

The days are repetitive and tedious.

Barbie is on a waiting list for what her parents hope will be a small option home, no more than an hour away from their home in Saint-Joseph-Du-Moine, NS. Her parents are cautious, considering what happened last time.

Less than a year after moving into the group home Barbie, who lives with a developmental disability, began to have problems. By the next year, she had lost her ability to speak.

At first, her parents suspected that the symptoms were caused by an allergic reaction to something in her diet. The chairman of the board of directors for the Cheticamp Association for Community Living, the corporation that owns Chemoi, refused Deal and his wife access to the menus. Asking staff to eliminate certain ingredients from her diet to test for allergies was no easy feat either.

It took until March 2010 when now 30-year-old Barbie’s tongue was swollen and she was only able to grunt for her parents to realize she may have been drugged. They sent a hair sample, obtained by her physician, to a toxicology lab at the Hospital for Sick Children in Toronto.

It tested positive for the pharmaceutical Loxapine, a drug used for treating schizophrenia and psychosis, known to have a sedating effect and affects movement of both the tongue and jaw, among other symptoms. The report came back saying the drug was found to have been present from approximately “March to September 2009, inclusive, and from October 2009 to April 2010, inclusive.” Barbie wasn’t on any medications as far as her parents were concerned; but she now carried an epi-pen for increasingly serious allergic reactions.

Barbie’s father, Kenneth Deal, asked the RCMP to investigate the family’s findings in 2010. Officer Paulette Delaney-Smith, who was originally assigned to the case, would not comment on the investigation while it was ongoing. The investigation concluded after more than three years by saying that there was not enough evidence to pursue the case.

Deal expressed that progress on the investigation had been slow. So has the court case: Deal is suing the association for negligence and defamation, and a trial date has not yet been set, though discovery hearings are underway.

The Deals’ grievances with the association don’t stop there.

The family wasn’t notified when Barbie fell — twice — in the home. Both times Barbie sustained serious injuries to her leg and needed medical attention. Deal’s wife only learned of her daughter’s injuries when she made her routine phone calls to the home in the afternoon.

“They didn’t do anything for her, they just put her in her room. They didn’t put ice on her leg, they didn’t seek medical attention,” he recalls.

Shortly after Barbie’s fall, in April 2010, Barbie’s parents were served with a notice under the Protection of Property Act forbidding them to enter the Chemoi property and other properties owned by the association on threat of arrest. The Deals claim that the letters implied they had acted unlawfully and that the letters were circulated in a way that communicates defamation.

Some months after Barbie fell, Barbie’s doctor attempted to obtain medical records from the home. Barbie received an eviction notice from the home three days later. Deal and his wife fought the eviction in court and received a temporary injunction against it.

But when they received the toxicology report which showed their daughter had been drugged during the time she had lived at Chemoi, they removed Barbie from the home.

* * *

The Cheticamp Association for Community Living failed to meet the expectations outlined in the 2008 SPD Report of Residential Services, which recommends, among other things, that residents or their families be included on the board of directors of privately run homes.

Deal pins the lack of accountability at CACL on the Department of Community Services as much as on the association itself.

Bill 65 of the amended Homes for Special Care Act gives the department the authority to correct or dismiss a board of directors that does not comply with departmental regulations or recommendations.

There were concerns the home itself was overcrowded; two people were placed in rooms only meant to accommodate one, nine people in a home designed for only six, claims Barbara.

When parents suggested the basement be used for additional recreational space because of the crowding, the board shot them down. This wasn’t the first time parents were excluded from decision-making in the home.

Between 2007 and 2010, Deal and other parents repeatedly asked to be included on the board, but were continually rejected.

In November 2008, Community Services employees Anne Black and Donna Pettipas conducted a review of the association, finding its “Request for Disclosure of Information” policy to be problematic, giving the board final say above parent or guardians’ request. The report identified how families were concerned about visiting hours, communication with family over incidents, nutrition and meal menus, accounting practises, common space and other areas. A total of 31 recommendations were made.

However, in January 2009, Community Services announced in a press release that residents were receiving “proper care.”

The Department of Community Services could not provide further comment on the issue as it is currently before a court of law.

The Deals weren’t the only family to remove their child from the home during this time. Others have left since Barbie returned home.

Barbara Deal says that at least two other residents were removed before Barbie. She knew of one woman from Sydney who tried to hitchhike out of town shortly after arriving at Le Chemoi in 2010 because she felt her personal freedom and freedom of movement were severely restrained. “She once told us there were too many rules and she didn’t like it,” Barbara said, reflecting that the rules were “so strict as to be jail-like.”

Barbara Deal believes at least 10 other residents, including Barbie, were ousted from the homes or removed by their guardians after dissatisfactory experiences. Two people died in the homes and one nearly died from lack of food before he was pulled from the home by his guardian, she says.

Should a person have the nerve to speak up, they are called a "troublemaker" and shunned: "it was a huge effort to get so many to tell their stories to Community Services, 16 in all, during the review only to have the department betray their trust in the final report,” she adds. “The intimidation is very real and emotionally stressful. Hence, the reluctance to speak out.”

Jean Chiasson, a board member, declined to comment on behalf of the board, citing that investigations into the home were still underway. She did not return a further request for an interview at the time of publication.

The current director, Bill Barnet, also did not provide further comment on this specific case but welcomes people to tour the home and said proper DCS inspections were in place. The board has since changed their name from the Cheticamp Association of Community Living to C.A.R.E.S. -- Cheticamp Area Residential and Educational Society.

Deal and his wife have been offered two other placements since Barbie left Chemoi, but neither placement has worked out once the respective boards and staff learned of their history of conflict with Chemoi. There are few preferable options in their area, and Deal says the situation is difficult on their family.

This piece was written during and after a King's Investigative workshop into the situation of housing for people with intellectual disabilities in the province.The main part of the investigation can be read here.

Note that the Cheticamp  Association for Community Living (CACL) is not in any way associated with the similarly-named  Nova Scotia Association for Community Living (NSACL), a province wide association of family members and others working for the benefit of persons who have an intellectual disability, or the Canadian Association for Community Living (CACL), its Canadian parent organization.

See also:

Support organization calls for inquest into violent death of Quest resident



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