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MLA still a voice for people with disabilities

Two years ago, as she marched the legislature grounds with hundreds of other Albertans demanding a reversal to cuts made by the PC government, it never once crossed Marie Renaud’s mind that she would one day be on the other side of those large
MAKING VOICES HEARD – A woman stands with a sign at a Persons with Developmental Disabilities rally earlier this year.
MAKING VOICES HEARD – A woman stands with a sign at a Persons with Developmental Disabilities rally earlier this year.

Two years ago, as she marched the legislature grounds with hundreds of other Albertans demanding a reversal to cuts made by the PC government, it never once crossed Marie Renaud’s mind that she would one day be on the other side of those large wooden doors talking, rather than chanting, about the very same issues that had her outside rallying.

Now those grounds house the St. Albert MLA’s office. Every day she walks through those large wooden doors, with the power and responsibility to influence the decisions made by the very same policy-makers who verbally instructed her to slash $600,000 (12 per cent) from her budget without any kind of warning or prior consultation.

Renaud refused to do it. Not only would the elimination of hundreds of support hours severely limit her Lo-Se-Ca clients’ access to volunteer opportunities, day programming and trips to the movies, but she was unhappy about the way she, as a stakeholder, had been consulted. That is to say, not at all.

“This (wasn’t) the first time we’ve had little bombs dropped on us,” she said at the time. “But before, there wasn’t the massive amount of dollars attached to the bomb.”

So she organized rallies.

Although successful – the $42 million cut to community access programs was taken off the table after two months of public protests – Renaud says her outspokenness probably lead to further alienation by the provincial government, which forged on, a year later, with a department-wide transformation that included a controversial new needs assessment program. And zero consultation.

Now that she is an MLA, Renaud is hoping to avoid these confrontational situations by better involving stakeholders in the decision-making process.

On Monday she began the second reading of a private member’s bill that would make public consultation mandatory for any major decisions involving persons with developmental disabilities.

The bill, if passed, would require the minister in charge of the PDD file to post changes to services, programs or funding on the government website and allow at least 30 days to collect written feedback.

While these amendments to the Persons with Developmental Disabilities Services Act don’t oblige the minister to use the feedback received, Renaud hopes this bill will usher in a new era of co-operation.

Renaud says the bill is about more than simply getting policy-makers to sit down with service providers, she wants to see real, meaningful discussions take place with persons with developmental disabilities, as well as their families.

“I worked much of my adult life with people with disabilities in the community, and I learned a great deal,” said Renaud while addressing the legislature on Monday. “I often had some wonderful ideas and some visions. I thought I had the answers for people, and I learned very early on that I was wrong. It was only when I actually consulted the people that I was hired to make decisions with that they worked.”

For Carmen Horpestad, the new executive director of Lo-Se-Ca, this was good news.

When Horpestad took over as executive director of Lo-Se-Ca in July, a few months after Renaud took office, she inherited the consequences of the PC government’s latest PDD debacle – fire safety legislation that would require costly renovations to apartments that house developmentally disabled people.

Not only was the legislation deemed to be unjust – Renaud and client filed a human rights complaint stating that the regulations limited housing options to an institutionalized setting – but most landlords say they will not go through with the installation of the required fire safety walls, sprinklers, etc.

Essentially they will no longer rent to places like Lo-Se-Ca.

“We would have no place for our individuals. We don’t know where they would go if they took away their homes,” says Horpestad.

The regulations have been on hold since September so that the new government can review its outcomes, but in the meantime one of Lo-Se-Ca’s clients has lost his home and has had to be relocated.

By consulting all sectors of the PDD community from the person living with the disability to their families and friends to the organizations, like Lo-Se-Ca, that assist them in their day-to-day lives, Horpestad believes this fallout would have been predicted and hopefully avoided.

Bev Matthiessen, executive director of the Alberta Committee of Citizens with Disabilities, an advocacy group for people with all types of disabilities, including brain injuries and sensory disabilities like deafness and blindness, says the bill is too narrow.

“I think it’s a good thing that this bill has come forward, but I think that it should not just be for one specific group, but for all groups,” she says.

She too could have benefitted from some ear bending, she says. Right around the time Renaud was organizing protests to defend the well-being of persons with developmental disabilities, Matthiessen was trying to ward off changes to home-care delivery that saw Alberta Health Services narrow their contract pool from dozens of non-profit agencies to a few for-profit corporations.

The uproar, again, prevented the changes from coming into effect.

“These are huge in people’s lives,” says Matthiessen.

It’s not like finding out your favourite lipstick or cologne is no longer in stock at the drug store. These “products” provided by the government are vital to these individuals’ health, safety, and overall well-being.

“People need to know about that. They need to prepare for it,” she says. And they need to help close the gap between the person making the decision and the person living it.

Matthiessen says this is true of someone who suffers from a degenerative disease like ALS, as much as for someone living with Down syndrome.

Renaud says she would have liked nothing more than to “change the universe” with one bill.

Although she stuck to the world she knew, the original draft included eliminating antiquated wording from numerous pieces of legislation, such as the need for a physician’s note to be presented when a developmentally disabled person wishes to marry or the minimum wage exemption for persons with disabilities under the Employment Standards Code.

“There’s a lot of clean-up to be done,” she says.

But these changes were not meant for this private member’s bill. She was told to concentrate on one thing, so Renaud chose what she thought was the crux of the matter: creating an open dialogue.

Former MLA Stephen Khan says meaningful discussions can, and should, be held constantly and consistently through the constituency office.

He says it’s the overarching responsibility of an MLA or minister to have their doors open and their ears to the ground, so that when changes that affect their constituents are coming down the pipe they can seek proper feedback and lobby caucus.

While Khan says he doesn’t disagree with the spirit of the bill, he hopes that the same opportunity will be offered to all groups.

“Let’s be consistent about it,” he says, pointing to the chamber of commerce’s criticism of the minimum wage hike.

Renaud says the bill was inspired by the new premier’s way of doing things – consulting on everything from climate change to oil and gas royalties – and by the motto adopted by disabled people after the United Nations declared the need for active participation of this group in the planning of policies that affect their lives: Nothing about us without us.

“It’s only when everybody is included that our community is most rich. Inclusion is not a buzzword, should never be a buzzword but should always be a verb and always be something that we work towards,” she told her colleagues at the legislature.

Second reading of the bill was adjourned until Monday at 3 p.m. No debate has taken place so far.