It’s World Down Syndrome Day: Let’s Change The World, Let’s Start Right Here In Ottawa!


On the occasion of the tenth anniversary of World Down Syndrome Day, I can’t let the day pass me by without at least attempting to address the debacle that has been the media explosion about the pending closure of Ottawa’s largest sheltered workshop.

The sheltered workshop system was developed in the 1970s in response to the deinstitutionalization of people with intellectual (developmental) disabilities. The institutions would not completely close until 2009, but the Province of Ontario started  “closing the front door” and developing more community-based options.

Premier Wynne issued the apology on behalf of Ontario for the brutality suffered by residents of mass institutions for people with intellectual disabilities

Premier Wynne issued the apology on behalf of Ontario for the brutality suffered by residents of mass institutions for people with intellectual disabilities

This meant the Developmental Services system of non-profit agencies suddenly confronting the issue “What will these people do all day?” In the big facilities like Rideau Regional, there existed a parallel society with food and recreation built right into the walls (yes, just like a prison). So sheltered workshops were sort of like a kindly work release program, a way to provide people with something to do while those tasked with caring for their future could try to figure out “what else could be done with them.”

In the 1980s study after study, report after report, and endless anecdotal evidence clearly demonstrated that sheltered workshops were not supporting progress. They were simply a new form of segregation, achieving similar results as the big institutional settings. Individuals spent their days in the workshops and their nights in a group home, and they were not becoming a part of their community. They were simply passing through it.

In response, many agencies with the Developmental Services system started closing their workshops, simply because it was the right thing to do.

Bill Villemaire, 58, has been employed in a real job for real pay at the Sweet Clover grocery store for four years. Before that, Villemaire, who has an intellectual disability, worked for pennies an hour in the last sheltered workshop to close in Vermont.

Bill Villemaire, 58, has been employed in a real job for real pay at the Sweet Clover grocery store for four years. Before that, Villemaire, who has an intellectual disability, worked for pennies an hour in the last sheltered workshop to close in Vermont. “Many of the people we place in jobs had been labeled as unemployable…we have seen people who have had all sorts of significant disabilities and they’re working. … It enriches their lives.”

The government of the day did not take much of a public position on these changes. Many family members of individuals in workshops wanted them to continue. They could not see any viable alternatives and had never been offered any other options, and the workshops gave them piece of mind that their loved ones were having certain fundamental needs met: shelter, food, and other people around. This was not aiming high, but they were understandably fearful of lows that could be much worse.

The understanding of sheltered workshops as a systemic form of human rights violation was an undercurrent over the next 20 years, and government became increasingly supportive of shifts towards community-based outcomes. More and more people with intellectual disabilities and their family members (and a growing advocacy network) were demanding a different lifestyle: full citizenship with the same opportunities and possibilities as other Canadians.

Not surprisingly, Developmental Services agencies that pursued these outcomes in partnership with their members and families achieved results. People previously labeled as incapable of living outside of staffed settings, earning a real wage through real work, or making friends (other than those they were congregated with in segregated programs) proved that these assumptions were false.

In Ontario this did not translate into policy that legislated sheltered workshops out of existence. Funding opportunities were shifted to more community-based outcomes, and public messaging emphasized real lives for real people (shifting away from a special people special places perspective) and so those agencies lagging behind on these advances were encouraged with carrots more than with sticks. This process, known as the “transformation of developmental services” has produced some shifts in language, some shifts in attitudes, and a limited shift in outcomes. The current climate is seeing the Government of Ontario taking a careful but increasingly direct approach to redirecting investment in segregation towards investment in person-centred, assets-based, community-focused outcomes.

Skipping ahead to 2015, some agencies have ignored the carrots, and have fought hard to maintain the status quo. While segregated programming has generally not provided for significant revenue growth, it has enabled the maintenance of existing staff positions and agency infrastructure.

Agencies unmoved by the burgeoning human rights movement and overwhelming evidence that other practices yield better results have utilized the same fear-based rationale employed in the 1980s. The major difference in 2015 is that 1980s alternatives to segregated programs were indeed speculative: there was little evidence of viable alternatives.

Today the evidence is all around us. People with labels of Down syndrome, autism, and other intellectual disabilities are leading lives as fully valued and fully contributing citizens. This is not to say that they do not need need and benefit from taxpayer-funded supports. It means that resources previously applied to segregation, when redirected to inclusion, deliver results such as people having their own apartments, paid jobs, and active lives in the community with recreation, education, and reciprocal relationships.

The story that broke in Ottawa was, unsurprisingly, very emotional and poorly understood by the media representatives that attempted to report on it. It’s a story that has been developing for almost 50 years, but, as one reporter confessed to me “I am new to this and trying to catch up.”

One particularly disturbing piece of misinformation that continues to be spread is the notion that paying sheltered workshop participants at the rate of $1 an hour is necessary in order to protect their disability pension. This is false, and I cannot believe that agency representatives did not know it to be false prior to communicating such a rationale to the media. And of course those reporting on the story should have at least done a Google on “Ontario Disability Support Program (ODSP) and employment income.

This would have led them to easily identify the falsity of the argument. ODSP does not “cut people off” for working. ODSP actually WANTS people to work, and the system is designed for this. It is not perfect and there are various arguments about percentages and limits, but that is all pretty much a red herring in this situation. Were the 50 individuals in this sheltered workshop paid a real wage for their work (Ontario minimum currently $11.25) instead of the current $1.25 this is what would happen:

SHELTERED WORKSHOP INCOME

ODSP individual monthly amount: $1086
Full-time monthly earnings at $1/hour: $160
ODSP deductions: $0
Total income: $1246

MINIMUM WAGE INCOME

ODSP individual monthly amount: $1086
Full-time monthly earnings at $11.25/hour: $1800
ODSP deductions: $800
Total income: $2086

* in either case individuals would also be eligible for an additional $100 through the ODSP Work Related Benefit; I left this out of the equation as that benefit is changing in October and it may be $0 for one or both situations.

As you can see, these individuals would be pocketing an extra $840 a month, or $10,080 a year. I daresay that’s a tidy sum for anyone, let alone those facing financial and social barriers to a quality of life in the realm of what most Canadian citizens expect. (You can quibble with my numbers, but the totals are going to be very close to what I’ve indicated, no mater what sort of quibbling is involved).

So how is it that OCAPDD and the media continue to wrongly suggest that the $1 an hour wage is a benefit to these individuals as a result of their disability pensions? It simply isn’t true, so let’s focus on what is really taking place, and let’s see this situation as an opportunity to start doing what is right for these individuals.

We must not simply cut them off. They truly are the innocent victims of this situation. But we must also not use fear-based illogical arguments to justify as-is continuation of what is both a false economy and an artificial social construct. We must look at the available resources, combined with the stated willingness of the federal government to be involved in a solution, and support each of these individuals to move forward to real work for real wages. They have more than earned it!

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About Keenan Wellar

I'm a citizen of Ottawa (Ontario, Canada) and co-leader of local social change charitable organization LiveWorkPlay.ca which supports a good life for people with intellectual disabilities. I'm a very active user of social media. Find me on Facebook http://fb.me/kwellar on Twitter @SocialKeenan on LinkedIn http://tiny.cc/keenanw. I also manage organizational accounts http://fb.me/liveworkplayfans and @LiveWorkPlay. I make a lot of connections locally and worldwide with people who share my belief in inclusive communities, but I also talk sports, food, and travel, and there are few topics that offend me, so please don't be shy.
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One Response to It’s World Down Syndrome Day: Let’s Change The World, Let’s Start Right Here In Ottawa!

  1. jennjilks says:

    Well done, Keenan. This makes sense.

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