430 Manitobans with intellectual disabilities should not be warehoused

By: Will Braun

WAYNE GLOWACKI / WINNIPEG FREE PRESS 

The Southgrove Building at Manitoba Developmental Centre in Portage La Prairie.

Despite its benign name, the Manitoba Developmental Centre haunts our province's past and present.

When the institution for people with intellectual disabilities first opened on the north edge of Portage la Prairie in 1890, it was called the Home for Incurables. This unseemly name was later changed to the Manitoba School for Mentally Defective Persons and then, it became the Manitoba School for Retardates.

Times have changed since then, and so has MDC. But has it changed enough to justify its existence?

The controversy over MDC's future was highlighted again last month when Ontario reached a $35-million settlement with former residents of the Huronia institution, an MDC-like facility in Orillia that closed in 2009.

The inquest into the 2011 death of 51-year-old MDC resident Ann Hickey also revived the inevitable question of whether MDC can outrun its embarrassing and troubling past.

Former MDC residents, particularly those who were there in the 1960s and 1970s, speak of inhumane treatment. Fear was pervasive and privacy non-existent in the 30-bed dormitories. Solitary confinement was reportedly used as a disciplinary measure. Some staff were physically abusive. Hunger, some say, was common. Residents had little or no recourse, and, of course, no choice about being there.

Many such stories from MDC and similar institutions are recounted in a 2008 documentary entitled The Freedom Tour.

MDC's disturbing past is a common reality in Manitoba group homes, since many older residents were once in Portage and brought psychological baggage with them when they left.

Most former residents have been moved to community settings. Those who are able can now participate in household tasks, decide what to eat, come and go as they please and in some cases, choose their caregivers. But 220 people remain at MDC (down from 1,200-plus in the late 1960s).

During a two-hour tour of MDC in 2010, the centre's director showed me the impressive range of facilities and programs, including pottery, music therapy, pedicures, wheelchair gardening, regular community outings and paid work at an on-site workshop.

Still, most buildings have a decidedly institutional feel: long halls, fluorescent lights, tile floors, locked doors, and, in some places, that sad antiseptic hospital smell. I saw only one single-occupancy bedroom but also a six-bed dormitory room that felt stark and sterile. "Homey" is not a word that came to mind.

MDC provides some innovative programming and employs many caring staff. Still, it is literally and figuratively an aging left-over of an era that should make us shudder.

I would definitely not want to live there, so why should 220 people be forced to?

According to People First, a national advocacy organization of people with intellectual disabilities, in 2006 there were over 3,800 people living in 31 large institutions in seven provinces. Today there are about 430 living in two institutions in one province.

Manitoba is the lone hold out, caught on the wrong side of history.

In addition to MDC, about 210 people live in the Complex Care Residence at Winnipeg's St. Amant Centre, a Catholic non-profit organization.

It's not that Manitoba's overall policies related to people with intellectual disabilities are regressive. By all accounts, the government does an excellent job. With one glaring exception -- its imposition of institutional living on 430 vulnerable Manitobans.

There appear to be three main factors keeping MDC open. First, proponents of the centre have long said medically fragile residents cannot be cared for in a community setting. But this is now done in the rest of the country and studies show it works.

Secondly, MDC is the single largest employer in Portage la Prairie, providing roughly 700 well-paying, much-needed and unionized jobs. When parents of residents in an Ontario institution filed an unsuccessful class action suit to stop the 2009 closure of the facility, unions supported them.

Government needs to be unequivocal in prioritizing the rights of residents over unions, but also creative in addressing the legitimate employment needs of MDC staff.

The third obstacle to closing MDC is the fact families of some residents say their loved ones have lived at MDC for decades and would be traumatized by a move. Family members' issues must be acknowledged and their concern applauded. Few of us could begin to comprehend their experience. That said, thousands of parents elsewhere in the country can. There is now extensive experience of institutional closures in other provinces and this experience is helpful.

Researchers at Brock University undertook four studies of the transition related to the 2009 closure of the last three institutions in Ontario. The overarching conclusion is the individuals who moved "are reported to have a better quality of life in the community." A full 93 per cent of families "reported they were satisfied with the placement" of their loved ones.

"Generally," the summary report says, "individuals adapted well and reasonably quickly to their new living arrangements" and transitions to community living "had a very positive effect on relationships with family with clear evidence of increased connection with family members."

The researchers say their conclusions echo "wider findings from the large body of related literature."

Recommendations in the studies focus not on whether community living is better than institutional life -- that is an outdated question in the rest of the country -- but on how to maximize the chances of successful transition. Careful, proactive, and highly individualized planning are key recommendations.

Rick Tutt worked with families of residents who left Ontario institutions. Now retired, he was the head of an agency that provided community housing and services in the Ottawa area. He also sits on People First's de-institutionalization task force.

Tutt encourages families to channel their legitimate apprehensions not toward fighting closures but to ensuring the best community arrangement for their loved ones.

He tells the story of a father who headed a parents' association that fought to keep an institution open. When the father realized the battle was lost he focused on ensuring the best transition for his son. Soon after his son's move, he became convinced it was for the better.

Tutt is also keenly aware of the concerns of former residents of large institutions. He says some of them "won't rest" until the facilities are closed and their friends can come out. They can't "get it out of their minds," Tutt says.

As a society, we owe these people a generous measure of healing.

With the weight of ethical inevitability upon Manitoba, the tasks now are straightforward: Close MDC. Close St. Amant's Complex Care Residence. Offer top-notch individualized support to residents and families during the transition to community living. Learn from what has worked elsewhere. Offer former residents reparations comparable to the recent agreement in Ontario. Offer them a public apology, which is also part of the Ontario settlement. Move on.

These institutions belong to a bygone era. It is time to make a clean break from the tragic and cringe-inducing past.

Will Braun is a writer from Morden.

Republished from the Winnipeg Free Press print edition October 1, 2013 A9