K'jipuktuk (Halifax) — On Dec. 5, between 100 and 150 persons with developmental disabilities and their supporters gathered at the Provincial Legislature to protest decades of neglect by governments of every stripe.

A much smaller rally took place outside the Provincial Building in Sydney.

Rally participants were upset that government inactivity has caused waiting lists for appropriate community based housing to grow, leaving both parents and persons with disabilities in a near-crisis situation.

As many as 650 persons with developmental disabilities are on a waiting list for appropriate housing, out of a provincial population estimated to be 5,200.

Participants say that what little the government does to create capacity is mostly directed towards building and maintaining large impersonal institutions, far away from family and community. Not enough is done to create assisted living opportunities in small residences right in the community.

Many speakers talked in no uncertain terms about the hardship and mental stress caused by this situation. Many letters from members of the greater community were also read.

This from a letter written by a parent, read at the rally. It describes the life of a 37-year-old son, still living at home and fully integrated in the community, where he is accepted, valued and has the opportunity to contribute in a meaningful way:

“If something were to happen to us tomorrow, our beloved son will be parachuted out of his community and placed anywhere in the province where there is a bed available … could be a nursing home, group home or institution. It will most certainly not be in our own region as we are continually told there are no openings. Life as our son has always known it to be, will cease to exist. How can we let that happen?”

From another letter read at the rally, this one written by a self advocate, describing the many negative effects of living in a large institution:

“Can you imagine what it would be like to be sentenced to live in a place where you have no rights and we haven’t done anything wrong and we have to stay there for life! Please think of that. We would live with no hope and no privacy and … well we might as well just curl up and die.”

And this from a letter by a young man who speaks about institutional life from direct experience:

“Why does the government want people to live in places like that? Why would they spend money to renovate hell holes where people have no privacy and can’t even go shopping or make decisions that would be to do things like you can all do. Imagine having to eat at certain times or take a shower only once a week and not have a choice.”

Dr. Brian Hennen, co-chair of the Community Homes Action Group, organizer of the concurrent rallies, referred to a comprehensive review of 157 institutionalized Nova Scotians. The review found that 64% of these Nova Scotians are unhappy because of the inappropriate environment they are in.

“Persons with developmental disabilities deserve the same kinds of homes you and I would be happy to live in,” said Dr. Hennen.

Anna MacQuarrie of the Canadian Association for Community Living reminded the government that Nova Scotia is a co-signatory to the United Nations Convention on the Rights of Persons with Disabilities.

“That means that Canada is committed to article 19 of that convention, that recognizes the equal right of all persons with disabilities to live in the community, with choices equal to others," said MacQuarrie. "Nova Scotia needs to fundamentally rethink what it is doing. Institutionalization is shameful and violates the UN convention."

Denise Peterson-Rafuse, Minister of the Department of Community Services, was given an opportunity to respond to critics.

She blamed previous governments for much of the mess and offered the recently initiated housing consultation as well as small gains made here and there as proof of the NDP being different than its predecessors. But all this left skeptical rally attendants unconvinced.

Wendy Lill, playwright, former parliamentarian, and co-chair of the Community Homes Action Group, offered a response of a kind to the Minister's speech. “We need to see clear policy statements and commitments to resources.”

The Halifax Media Co-op reported in more detail on these issues a short time ago.