Needlessly institutionalized

A board of inquiry got underway yesterday into a complaint under the Nova Scotia Human Rights Act which has the potential to change the way the provincial government treats people with disabilities.

“The outcome of this case,” says Jean Coleman, “could make a good life in the community possible for all people with disabilities.”

Coleman spent 38 years as the executive director for the Nova Scotia Association of Community Living, which advocates for housing and other support services so disabled people can live outside institutions.

The complainants in this four-year-old human rights complaint are two intellectually disabled adults (a third complainant died) who spent most of their adult lives locked up in Emerald Hall — a ward of the Nova Scotia Hospital. The unit is a place for people who have been diagnosed with both a disability and a mental illness. Over the years it’s been the focus of complaints of physical abuse filed by family members on behalf of residents and grievances by unions on behalf of staff. Despite its violent reputation, nine people with high needs continue to live at Emerald Hall today.

Beth MacLean is a verbal, 46-year-old woman who was diagnosed with “minor mental retardation” and a mood disorder. When her family couldn’t care for her, she spent her teen years and young adulthood at the Kings County Rehabilitation Centre before being transferred to the Nova Scotia Hospital. She spent nine years in Emerald Hall even though she says in her written complaint “my community services worker has told me for many years that she knew I didn’t need to be here and that I am on a waiting list for a place to live in the community.”

“Our submission is Beth is someone who was institutionalized for nearly her whole life needlessly,” says Vince Calderhead, the lawyer for the complainants. “There was no medical or legal reason for being locked on a psychiatric ward except she wasn’t offered a suitable community placement.”

In 2016, two years after the human rights complaint was filed, Beth was transferred out to a Community Transition home in Lower Sackville. The other two complainants also spent many years at Emerald Hall. Both Sheila Livingstone (now deceased) and Joey Delaney were shipped to Emerald Hall following stays in hospital after which they lost their placements in small group homes. Both also had a dual diagnosis of intellectual disability and mental illness. Calderhead argues that while people who are poor have a right to a welfare cheque from government, the government discriminates against people who are poor and disabled by denying them the same income assistance which could be used to pay for housing outside an institution.

“For decades,” Calderhead says, “my clients have been forced to wait or told the only assistance they can receive is an institution.” Calderhead claims the situation of intellectually disabled people represents “the last vestiges of the Nova Scotia poorhouse phenomenon,” where people who were poor were locked away and excluded from society. No other group, he argues, would put up with such treatment.

“This case is about making change for other people who are stuck in this situation; it’s about making lives easier for the complainants and their families,” said Jackie McCabe-Sieliakus, the niece of Sheila Livingstone, the woman who signed onto the human rights complaint but died before it could be heard. Livingstone died in the fall of 2016 at the age of 69;  McCabe-Sieliakus says Livingstone received shock treatments for anger management and other issues.

“Sheila suffered a lot of physical abuse at Emerald Hall, unnecessary abuse because she didn’t need to be there,” said McCabe-Sieliakus. “When we complained, they shipped her to Yarmouth, four hours away from all of us. The only reason we chose to take that placement was because she was in danger at Emerald Hall.”

Lawyer Claire McNeil says this case is not confined to the three complainants and urged adjudicator Walter Thompson to look beyond these experiences that “reflect entrenched government policy toward persons with disabilities.”

McNeil represents the Disability Rights Coalition and says the impact of segregating people with disabilities is that it “‘diminishes their quality of life.” She says the provincial government has accepted the idea that all people with disabilities are capable of living in the community with proper support and yet “unnecessary institutionalization continues.”

McNeil argues the impact is harmful on people like Beth MacLean, Shelia Livingstone, and Joey Delaney. Delaney is the third complainant in the case; he has returned to live in Emerald Hall after a placement in a community residential facility did not work out. Those reasons will be debated later in the hearing.

The province’s position is that while there is general agreement around most of the facts, its lawyer Kevin Kindred has “serious and fundamental disagreements” when it comes to interpreting the Human Rights Act.

Kindred claims the law’s scope is “limited” and the disabled complainants have failed to define the service the province is denying them, arguing with “purposeful vagueness” they have a right to live in the community. Kindred says while the province “supports that aspirational goal, no one has an unfettered right to live in a community of their choosing.”

Kindred suggests the legal test for discrimination involves a service and the service at issue is the need for “supportive housing.” And with wait lists for both disabled and non-disabled Nova Scotians stretching years into the future, Kindred argues the province can’t be accused of discriminatory behaviour toward disabled persons.

“Housing solutions are not a right in this province,” Kindred says. “There’s limited capacity in the system. You can’t take social problems experienced by persons with disabilities to make a claim of discrimination under the Human Rights Act.”

Lawyer Claire McNeil for the Disabled Persons Coalition responds that “there’s no reason to be in a race to the bottom.” She points to a recent Supreme Court of Canada decision that upheld a ruling of discrimination based on “adverse impact” to people in British Columbia.

Kymberly Franklin is the lawyer representing the NS Human Rights Commission at the board of inquiry. The agency chose to make no opening comment but will instead wait to hear all the evidence before making its submission in the final days of the hearing sometime this summer.

Yup, a ground-breaking complaint that took four years to get this far will be heard over a series of months, a few days at a time, before all is said and done. For Shelia Livingstone it’s too late but other Nova Scotians whose families include people with disabilities will be watching to see whether this proceeding forces government to make changes it promised but has yet to deliver.