A Voice in the Wilderness

Following is a copy of my presenataion at the recent CACL Conference, part of multi-person session on supported decision making. As the above title implies, I was the sole person questoning how well this concept might actually work.

A good discussion followed in which some of concerns were discussed and explained. Some to my satisfaction and others less so. Such is life.

Long, long ago in a galaxy far, far away (in other words, before I had a child with a disability), I was involved with grassroots political lobbying for children in third world countries. Doing that work, I became very attached to a quote from Stephen Lewis, Canada's Ambassador to the United Nations at the time, to the effect that the day would come would societies would be judged not by their industrial or economic output, but by how they treated their most vulnerable citizens.

I approach the issue of supported decision making primarily as a mother. A mother with a legal background, a mother who walks both in the field of disability and law, but a mother.

I've tried to read some of what Michael [Ed. Michael Bach - Vice President of CACL) and others have written on exactly how supported decision making would work. I say tried, not due to lack of interest, but simply due to lack of time. Because I found it fascinating. But, quite frankly, I also found some of it scary.

I was particularly struck by the response to a statement made by the Ontario Select Committee on Mental Health and Addictions' statement that the "right to autonomy must be balanced with the right to be well". Part of the response to that statement was that there is no recognized right to be well in domestic or international law.

I beg to differ - Section 7 of the Canadian Charter of Rights and Freedoms guarantees all of us the right to "life, liberty and security of the person". I would have no trouble arguing that that includes a right to be well. After all, I listened to Dr. Condoluci speak yesterday of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

I love the concept of supported decision making. In the abstract. But my concern is exactly how we are to balance the right to autonomy (that you, I and everyone else at this Conference demands and deserves) with the duty to protect where decision-making abilities are limited or where they are lacking needed supports or where people are vulnerable to abuse or neglect.

The Road To Hell

I've been flat-out busy lately but I can't believe it's been over a month since I've posted. So apologies.

What have I been up to, you ask?

Well, a few more presentations on Supported Decision-Making and Legal Guardianship in Nova Scotia. The effort involved in trying to start a new business (see above).

And, what I would most like to share with you, attending the recent CACL (Canadian Association for Community Living) Conference. My youngest and I headed out again and it was a great, if exhausting, weekend.

So, quickly them (much to do, much to do) some of the highlights, in no particular order:

• reconnecting with old friends and meeting new ones
• meeting Emily Eaton and her father
• hearing/seeing the infamous Michael Kendrick (author of the infamous Kendrick Report) for the first time
• the pre-conference session with Dr. Al Condolusi (a most excellent speaker/presenter)
• hearing, with my very own ears, our Minister of Community Services state that she believes that every person in this Province is entitled to live in the community, if they so choose (and briefly discussing that comment with her afterwards)

Okay, yeah, I might have saved the best for last.

Now the real question is will I ever get back here to post more about the Conference?

Let's just say I hope to but I'm not making any promises.
Because, sometimes, when I make promises, it just doesn't work out so well.

Now just what is that saying about the road to hell?

Hell isn't merely paved with good intentions; it's walled and
roofed with them. Yes, and furnished too.
~ Aldous Huxley

One Out of Two Ain't Bad

Once upon a time we had two ... that's right, I said two! ... Learning Disabilities Conferences to look forward to this Spring. 

Unfortunately, the Annapolis Valley School Board was forced to cancel their planned event due to a lack of registration.  But the good news is that the Atlantic Conference on Learning Disabilities lives on!

This two-day conference will bring together experts from across our region with a focus on supporting youth with learning disabilities, gving delegates access to a wide variety of practical workshops on education and mental health.

And hey, just for a blast from the past, The Fonz actor, author, producer and director Henry Winkler will be one of the keynote speakers. Now, that's pretty cool, you gotta admit!

May 12-13, 2011 at Mount Saint Vincent University in Halifax.  Go here for the full conference schedule, list of speakers and workshops.

Be there or be square, as they say.

The Art of the Possible

My youngest daughter and I attended the Values, Vision and Action Workshop this past weekend, the first in a series of workshops in the Coming Together ... To Create Change: A National Family Leadership Workshop Series.

Co-hosted by both the CACL and the NSACL, it was billed as an exploration of who "we" are - as a movement, as family leaders and as agents of change.  And although the history of the Community Living movement was discussed - where it came from as a movement and the milestones that have shaped its history - as was the future of where we want to go, at the heart of the weekend was a discussion about creating good lives for our sons and daughters and all people with intellectual disabilities and what is needed to make those dreams and aspirations a reality.

I have been to many different workshops on various disability-related topics over the years and while all most have been valuable, I have found that the vast majority have tended to consistently fall short at the end of the day.  Although powerful stories and valuable information are often shared and many possible solutions are brainstormed, there never seems to be any concrete action plan created.  Instead, we all go home and individually return to the task of slogging our way through the fight of trying to ensure that our loved ones are meaningfully included in society.

And that is where this workshop felt different. 

But before we got there, I would like to share with you a realization I came to Saturday evening; namely, that for me, personally, the Saturday afternoon  program could have easily been renamed "The Art of the Possible".

Live and in Person ... aka Shameless Self Promotion

And if that's not enough to scare you away, nothing will.

But just in case anyone is still interested, I will be giving a presentation on "Legal Capacity and Supported Decision Making" (aka "Guardianship - Do I Need It and How Can I Get it Without Losing an Arm and a Leg?") next Saturday, April 17th, 2010 @ 10:30 at the Alderney Gate Public Library, 60 Alderney Drive, Dartmouth.

The presentation is courtesy of the HACL so I thank them for that.

If you're even a semi-regular reader of this blawg, you will know the general direction in which I will be headed with this. In which case, what you just might find more interesting novel than anything I have to say is the first hand experience of a fellow parent who recently obtained guardianship of her son without a lawyer.

So I hope to see you there. Bring your thoughts and concerns. Ask your questions. We will do the best we can.

Update: And yeah, that Guardianship package, still a work in progress. But it is progressing. I still have another week, right?

Update II: Apparently registration is filling up fast. Which might have been one thing I forgot to mention - you can find registration details here.

Blawg in a Box

The word "blog" is a shortened version of the term "web log". And much like the word google, it can now be used as either a noun or a verb.

The cutesy term "blawg" (which is what I call this gem of a site you are reading) was apparently coined by some lawyer to mean "a web log written by lawyers and/or concerned primarily with legal affairs".

So now I have this b-law-g (I warned you it was cutesy) on which I sometimes wonder what to write about. Oh sure, stuff comes up, either in my own life or a news item that grabs my attention and gives me blogging fodder. But sometimes it's hard to know what to write about next. Hard to know what you, dear reader, have a burning need to know more about.

I've asked on a couple of occasions in the past for reader input although, in all fairness, it has been a while. But come on, people, how often do you have your own personal legal person of whom you can ask a (reasonably generic) question free of charge?

So, fire away ... what subject to do with the law and special needs would you like to know more about? Perhaps it's a topic I've already covered but you still have a question on. Or you could always check out the labels at the bottom of the sidebar on the right hand side of the page to see if that helps with some inspiration.

In the meantime, I'm thinking that my next few posts might well be a little less legal related and a little more parent to parent. This past weekend, with my trip to the NBACL Conference preceded by a visit to the HACL library has left me with some interesting thoughts (and book recommendations) to share.

But, hey, if you don't fancy that, feel free to use the comment box or the e-mail link to suggest some more 'legalesque' topics. In the meantime, I think I might just entitle my next few posts something along the lines of 'Lessons Learned On The Road'...

** Although in all fairness, it did recently occur to me that one subject I have failed to blog about on this site is Nova Scotia's own Hyde Inquiry [which has been covered in some detail bit on the Schizophrenia Society of NS Weblog] and the whole issue of the police use of tasers on individuals with disabilities.

Which, in my defence, I blogged so much on the taser issue last year on my personal blog that, quite frankly, I think I got a bit tasered out. Still, it is a subject that I should (and, no doubt, will at some point) discuss here.

'A Journey of 1000 Miles'

So I attended the AVRSB Learning Disability Conference today.

As I already noted, the speaker, Rick Lavoie, has quite an impressive and extensive resume in the field of special education, holding three four degrees in special education and having served as an adjunct professor at numerous universities. He also served as an administrator of residential programs for children with special needs since 1972 and now serves as a consultant on Learning Disabilities to several agencies and organizations.

This they tell you. What they don't tell you is that he has what describes as "moderate to severe ADHD". Not that you (or at least I) could tell, not until he said it. I had noticed that he looked at his watch quite regularly but the fact that he used a wireless microphone, giving him the ability to move around at will, didn't stand out for me. Not until he mentioned it.

His sons also have ADHD. Which didn't really surprise me given that I've often found that the best professional in the field (be it teacher, lawyer, psychologist) is the one who is also a parent of a child (or himself lives) with a disability.

A few years ago (at the same Learning Disabilities Conference, if I recall correctly) I had the pleasure of listening to Dr. B. Duncan McKinlay, a psychologist who has been diagnosed with both ADHD and Tourette's Syndrome. His presentation was entitled "Life's A Twitch" (go check out his website) and it was an absolutely amazing experience to hear his story and insight.

But I digress.

Rick's topic was The Motivation Breakthrough: 6 Secrets to Turning On the Tuned-Out Child. He's a very good speaker and although I might have appreciated a few less anecdotes and a little more substance, it was an interesting and productive day. I took some notes so perhaps at some point I might be able share some of his thoughts on what exactly does (and doesn't) motivate, not just our kids, but all of us.

Did I mention that he's a very good speaker?

One of the first things I noticed was how he was able to connect with both the parents in the audience and the professionals.

And, it was in that regard, that there was something I really wanted to share with you tonight. But first let me say that I am neither a Republican (thank goodness) nor a Democrat (thank goodness again). Although I have been impressed, on occasion, by Sara Palin, when it comes to issues around disability. For example, if you haven't yet seen this video, I would highly recommend it.

But Rick told the story today of how he was asked to write a newspaper piece during this past US Presidential election with his thoughts on Governor Palin's promise to be a champion for "special needs families" because she "knows what they are going through".

He shared with us his response, which he now has posted on his website, and which I found truly amazing.

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.

With great respect and empathy, I must say, “Sorry, Governor, but you don’t.” You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays.”

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” … but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said." (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Go read all of it.

And watch your life unfold before your eyes.

My Apologies ~ Learning Disabilities Conference Day

Talk about short notice. Mea culpa.

But the Annapolis Valley Regional School Boards' Learning Disabilities Conference Day is this week, Saturday, April 25th, to be exact.

You can find more details here but the speaker is Rick Lavoie, M.A., M.Ed.

Rick Lavoie has served as an administrator of residential programs for children with special needs since 1972. He holds three degrees in Special Education and has served as an adjunct professor or visiting lecturer at numerous universities including Syracuse, Harvard, Gallaudet, Manhattanville College, University of Alabama, and Georgetown. His numerous national television appearances include: CBS Morning Show, ABC Evening News, and Disney Channel Presents.

Rick serves as a consultant on Learning Disabilities to several agencies and organizations including Public Broadcasting Service, New York Times, National Center for Learning Disabilities, Girl Scouts of America, Child Magazine, and WETA. He is a member of the Professional Advisory Board of the Learning Disabilities Association of America.

Rick has delivered his message to over 500 thousand parents and professionals throughout North America. He has the distinction of having delivered Keynote Addresses for all three of the major special needs advocacy organizations in the United States (Learning Disabilities Association, Council for Exceptional Children, Children with Attention Deficit Disorder).

I can't seem to find where I saw it but I believe the title of Mr. Lavoie's talk is Unlocking The Key to Motivation, which, if you have a child with a learning disability, might just grab your attention.

Sorry, if it's too late but for more information, or to register, contact: Gail Demmings, Student Services Division Annapolis Valley Regional School Board (902) 538-4638 gail.demmings@avrsb.ednet.ns.ca

Probably sooner rather than later would be good.

Nova Scotia Conference on Learning Disabilities Alert

October is Learning Disabilities Month across Canada.

Which would probably help explain why October 2nd and 3rd are the dates of the Nova Scotia Conference on Learning Disabilities.

Which you can find out more about here.

But don't let the cost scare you off; I have it on good authority that there are special parent rates available. Go ahead and give them a call.

Just don't wait too long. Time, it is a passin'.