Thursday, May 23, 2013

The Right House

Last weekend, the CBC Radio program Maritime Magazine aired this 30 minute documentary about the plight of Nova Scotians with intellectual disabilities fighting for for appropriate living situations.  I sent them this letter in response.

Dear Ms. Brunelle,

I wanted to thank you for shining a light on the injustice faced by so many people with intellectual disabilities in Nova Scotia.

Many of your listeners may not be aware that Canada has ratified the United Nations Convention on the Rights of Persons with Disabilities.  This Convention states, among other things, that "persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement."

The Convention guarantees that people with disabilities are entitled to receive "the assistance necessary to support living and inclusion in the community".

Your story clearly illustrates that this is not happening for many people with disabilities in this province.

After 20 years supporting people with disabilities in L'Arche, it is my sense that the solutions to these issues are not as elusive or complex as our governments would have us believe.  There are many individuals with disabilities, families, and supporting agencies who are eager to design and deliver the type of support that is needed, often with much less money that the government currently spends on outdated, custodial care. Unfortunately, it is often the systems that are meant to support our people, and the bureaucrats who administer these systems, that get in the way of the innovation and creativity of the people "in the field".

A key concern for me is whether those in positions of power see people with intellectual disabilities as a problem to be solved, or if they actually value the contributions that these individuals can bring to our society if given the opportunity to do so.  It is my hope that the remarkable people I have met through my involvement with L'Arche and other like-minded organizations will continue to announce their value and refuse to be defeated by a system that has lost touch with the needs of the most vulnerable people in our society.

Jenn Power
L'Arche Atlantic

Wednesday, May 15, 2013

Pilgrim's Progress

Recently, I was with a diverse, committed, and long-suffering group of disability activists.  We had the ear of a couple of government employees who were seeking input on, among other things, how best to support people with disabilities in our province.

There was no shortage of ideas.  (No shortage of frustration, either, in having to repeat AGAIN the feedback that's been offered to a seemingly endless stream of bureaucrats over the years.)  One issue centred around the requirement of folks with disabilities to "progress".  They are subject to a constant stream of (well-meaning) growth plans, goals, behaviour strategies, incentives, and on and on.  The consensus around the table was that people with disabilities should be allowed to be lazy, too!

Dennis fights for this right with a passion that is anything but lazy.  Having lived in a group home for many years, Dennis announced in words and with actions that he did not want to live with a crowd anymore, that he wanted - needed! - his own space.  So with some creative planning and negotiation, we were able to build a bachelor apartment for Dennis where he can have mornings and evenings on his own, but still be with friends for the times he enjoys - mealtimes, outings, etc.  In his apartment he can sleep in, have executive decision making power on what movies get watched, leave dishes in the sink, take a sick day from work, stay all day in pyjamas.

The program that we squeezed Dennis into in order to access funding for him values accomplishments, progress, and improvement.  Over his first few years in the apartment, Dennis pushed against the expectations of his caseworker and support team, choosing not to do things like learn to manage his own medication, take cooking lessons, or join service clubs or interest groups in the wider communtiy.  This worked well for Dennis, but it did not sit well with the decision-makers who signed the cheques for his (meagre) funding.

After a few years of ongoing back-and-forth discussions about this so-called problem, Dennis was summoned to a meeting to consider the future of his independent living arrangement.  I accompanied him to this meeting, held half an hour's drive away in a building he had never seen before.  There were six (six!) bureaucrats/social workers/residential support workers waiting for Dennis, all of whom had clearly already decided that Dennis was not a good fit with this apartment program.  They suggested as such to Dennis, in a manner that felt more than a little like a firing squad.  But Dennis would not budge.  He firmly responded to every question that what he wanted was to stay in his apartment, with the support he already had, and without having to take on any more self-improvment projects.  But, the deciders insisted, you aren't making any progress.  And if you aren't making progress then you can't stay in this program.  And if you aren't in this program then there is no money for your apartment.  So no progress, no apartment.

Wait a minute, Dennis insisted.  I do so make progress.  You know I had a fridge that used to ice up all the time, and leak all over my apartment floor.  Me and my mom defrosted it, and Roddie fixed it, and now it doesn't ice up anymore.  That's progress.

Dennis still enjoys his apartment living.