Michael Bach. Photo: Jennifer Henderson

The second day of a human rights inquiry about whether people with intellectual disabilities continue to be “needlessly institutionalized” in Nova Scotia heard from an expert public policy researcher on the topic. Michael Bach has spent 35 years as the managing director of IRIS, Ontario’s Institute for Research on Inclusion in Society.

In late 2012, Bach was hired by the Dexter government after a scandal at the Braemore Home, where residents complained of physical abuse and overcrowding. Bach’s task was to transform and improve the way services to persons with intellectual disabilities were delivered in this province. At the time, 1,100 people were on a waiting list for housing and other services that might allow them to live in smaller homes in the community instead of nursing homes or the Nova Scotia Hospital (where the three complainants to the Human Rights Commission spent decades of their lives.)

Today, the province says the wait list for persons with disabilities seeking a transfer out of an institution or to live outside the family home as their parents age has risen to nearly 1,500 people. That’s despite the recommendations more than four years ago from a Joint Committee of government representatives and community groups:  co-chaired by then assistant deputy minister of Community Services Lynn Hartwell and Wendy Lill, a parent and advocate for persons with disabilities as well as a former Member of Parliament.

Bach was an advisor to that Joint Committee and testified the government signed off on the principle that all people can be supported in the community. An estimated 20 per cent of people with intellectual disabilities also have a mental health issue, according to the last Canadian Survey on Disability. NDP Community Services Minister Denise Peterson-Rafuse committed to a five-year timeframe to implement the Committee’s “Road Map for Change.”

Yet despite those policies and the promotion of Lynn Hartwell to deputy minister in the current government, the demand for services still outpaces supply. The present government has promised $4.2 million to build eight new small options homes in the community over the next two years.

“Progress has been slow,” Claire McNeil told journalists. McNeil represents the Disabled Persons Coalition and Bach was her witness.

“One of the systemic barriers to people being able to live more independently,” Michael Bach told the hearing, “is the per day funding approach that attaches the money to where people can live. The pattern of funding tilts toward institutions or beds instead of a person-centred approach. In 2013, there was no lack of housing stock but the supports individuals needed were attached to a particular type of housing, usually an adult residential facility. People couldn’t just take their support money and rent an apartment.”

Forty-nine-year-old Dave Kent attended yesterday’s session. The president of “People First Nova Scotia” has an intellectual disability. For 14 years he struggled, living in a rooming house with other people and their dogs on about $200 a month. “It was rough,” he said.

Today, he’s “much happier” living in his own apartment and busy with the self-advocacy volunteer work.  A case worker visits several hours each week to help him with budgeting and paying his bills.

“The important thing about this hearing,” Kent says, “is we need change. For people to listen to what we are saying and to go ahead with the Road Map and do what they said they were going to do for the last 20 years.”

Since the 1980s and the United Nation’s Declaration on Human Rights, Bach says “there has been a recognition that disabilities are not exclusively a biomedical concern but a human rights issue. What disables a person are barriers and obstacles that fail to allow individuals to develop and participate in society.”

If this case — which argues Beth MacLean, Sheila Livingstone, and Joey Delaney could have had a better quality of life if the money spent on their care inside the Nova Scotia Hospital had instead been used to care for them on the outside — succeeds, life for people with disabilities could be different in the future if the funding follows the person and allows for more flexible housing and caregiving options to evolve.

The hearing continues sporadically into July.

A smiling white woman with short silver hair wearing dark rimmed glasses and a bright blue blazer.

Jennifer Henderson

Jennifer Henderson is a freelance journalist and retired CBC News reporter.

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