'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.

As Promised

I attended the RDSP Information Session put on by Human Resources and Social Development Canada in Halifax last week. It was a good session, with the only unanswered questions being those involving some further issues in the provincial jurisdiction, which I hope to clear up soon.

And I think it's a very good thing I went, considering I have been asked by Caregivers NS to speak at the RDSP session in their upcoming Atlantic Caregivers Expo at the Exhibition Park in Halifax.

The Expo is on for two days, May 9 and 10, 2009, and the RDSP presentation will be on the Saturday afternoon, May 8th.

And as promised, I now have the list of presentations which will be offered at the Atlantic Caregivers Expo on May 9 and 10, 2009, at the Exhibition Park in Halifax, NS.

Along with the RDSP session, they include topics such as

• Who is Taking Care?: Accessing Primary Health Care and Support for Dementia Caregivers


• Medication Review Program


• Nova Scotia Pharmacare Programs


• Adult Day Programs


• Demystifying Mental Health Services and Supports


• The ABCs of Long Term Care Insurance


• Care for the Caregiver and


• The Basics of Estate Planning

You can find a complete description of each session and see what other sessions are being offered here.

And don't forget, admission is free.

See you there.

The Power of *You*

Have you ever noticed how some among us would immediately jump to litigation as the solution to every issue? And how others, on the opposite end of the spectrum, would never consider such a thing; after all, aren't all problems simply solutions in need of some diplomacy?

The more realistic view is, of course, somewhere in between. You have to be willing to back up your talk with action, if need be. And yet, immediately tossing over your lawyer's business card at the first sign of a disagreement can be a little less than helpful, to put it mildly.

Which is why I appreciated this story in the Fall 2008issue of the Learning Disabilities Association of Canada National newsletter. In "One Family's Successful Challenge of an Unfair Policy", Dr. David F. Philpott writes about a 15-year-old high school student in Newfoundland who had been assessed as intellectually gifted with a co-existing written output disability.

For many years, Brad had used a laptop with MS Word to take notes and complete projects, with good results. But in his first year of high school he was told that his support plan would have to be changed to "reflect a narrower set of accommodations for public exams". Apparently provincial policy limited accommodations on public exams to software programs like MS WordPad on the basis that the spell check and grammar features provided an unfair advantage. When discussion was ineffective and no one was able to provide the exact value that spelling and grammar had on the exams, Brad's family instituted a complain with the Human Rights Commission.

Unfortunately, as anyone who has had any experience with such claims will tell you, the human rights process can be painfully slow. The complaint was imitated in 2006 and when, despite the family's focus on a settlement, it was clear that none would be reached, the decision was made to take the case forward to a hearing. But by the fall of 2007, the term of the Commission's adjudicators had expired and a new panel had not yet been appointed. And Brad was in his final year of high school, where his exam marks would determine his post-secondary options.

READ MORE

Just How Equal Are We?

When I wrote enthusiastically about Air Canada's new (albeit forced) policy to allow support persons to travel for free when accompanying a person with a disability, I noted on their website a laundry list of disabilities which, according to the airline, would "require medical approval for travel". A list which caused me a little concern.

In the same post, I noted the case of a partially deaf and blind Vancouver man who was awarded $10,000 by the Canadian Human Rights Tribunal after Air Canada insisted he fly accompanied when he felt perfectly capable of flying on his own. Although the Human Rights Commission did not order the airline to automatically allow Mr. Morton to fly unaccompanied it did order the airline to give him an individual assessment of his abilities before making any decision as to whether or not he could fly alone.

Which I must say, makes a lot of sense to me. If the airline is truly worried about the safety of its passengers, as it asserts, than common sense tells you it needs to inquire into whether or not Mr. Morton will be able to travel safely on his own. Not make blanket decisions and issue proclamations based on stereotypes.

Actually, it's much like the well-recognized Bona Fide Occupational Requirement (BFOR) in the human rights employment context. If the employer can prove that doing X is an itegral part of the job and that even with accommodation, a person is unable of performing X, a BFOR has been established. Let's give Mr. Morton a chance to show whether or not he is capable of reacting to standard safety procedures without assistance. If he can, there is no need for a support person.

But apparently Air Canada disagrees. The airline has appealed the Human Rights Tribunal decision to the Federal Court of Canada.

READ MORE

An Absolute *Must Read*

The good people at PLAN have just come out with a new bulletin entitled "Making Sound Decisions". And YOU, dear reader, absolutely, MUST read it.

No, I don't think I'm usually this pushy but in this case, I believe I must be.

The PLAN Bulletin does an excellent job of covering the waterfront on many of the issues we've been discussing recently, such as guardianship, supported decision-making and powers of attorney, particularly in the context of the usefulness of RDSPs for the disability community.

So, just in case you're not quite ready to take a peek, let me whet your appetite:

• A Delicate Balancing Act ~ looks at the transfer of autonomy and control from parents to their children over time and how we all need support when it comes to making important decisions in our lives
• From Coast to Coast: A Patchwork of Rules ~ discusses the different 'tools' available across the country to "support" a person in their decision-making (including a Cross Country Scan which clearly shows in chart form what is available in each province)
• Maria's Dilemma: Choosing A Trustee ~ sets out the dilemma faced (and decisions made) by one mother as she set up discretionary trusts in her Will for her three children
• Power of Attorney for Property ~ explains what, exactly, powers of attorney are, the criteria for setting one up and the authorities and duties of the attorney appointed, among other issues
• The Representation Agreement: A Model for Canada ~ explains what Representation Agreements (unfortunately currently only available in British Columbia and the Yukon) are and how to use them
• Making Sound Decisions with Support - sets out one family's positive experience with a Representation Agreement
• Guardianship: A Last Resort ~ explains the concept of guardianship as well as when and where it might be needed and sets out three myths about guardianship (one being that parents automatically continue as legal guardians when their sons and daughters with intellectual impairments become adults) and PLAN's reservations on the issue of guardianship
• Setting A New Direction ~ takes a look at the United Nations Conventions on the Rights of Persons with Disabilities [which, by the way, Canada has still not ratified]
• Managing A RDSP: Time for Guardianship Reform? ~ looks at both the provincial and federal legislative changes which could be made so that guardianship would no longer be required in order for a parent to open a RDSP for a disabled adult who is not considered legally competent; and
• The RDSP: A Great Opportunity Just Out of Reach ~ sets out the thinking of one family who chose to forgo the financial opportunities inherent in a RDSP if it meant obtaining guardianship of their adult son

So thanks again to Jack and Doug and all the good people at PLAN who worked at putting this Bulletin together. It should prove invaluable for many families to have all this information available in one place.

Bravo Zulu, guys.

Guardianship - Why Bother?

At the risk of beating a dead horse (but just in case you haven't figured it out yet), I, personally, feel that guardianship is something that every parent of a disabled child should give serious consideration to. Before your age child reaches the age of 19 (the age of majority in Nova Scotia).

It's definitely true that the introduction of the RDSP has brought this issue to the forefront lately given that if your adult child is not considered legally competent, you, as a parent, will be unable to open a RDSP on their behalf without guardianship. Leaving your options very limited; the only person who can open a RDSP for such an individual is a guardian, tutor, or curator of the beneficiary, or an individual who is legally authorized to act for the beneficiary; or a public department, agency, or institution that is legally authorized to act for the beneficiary.

And yet, as I've noted before, even totally independent of the RDSP issue, guardianship is extremely important:

At 19 years of age, your child, disabled or not, is legally considered to be an adult and, from the point of view of the law, you will have no more right to make binding decisions for that child than you would for any other adult in the Province. Nor will you legally have the right to access information, including medical information, about your young adult child without that child's consent. And if your child is considered mentally incapable of giving such consent...

Still, as I talk to people, more and more I get the sense that people just don't get it. Or, perhaps, they would simply rather not get it.

But my concern is the possibility of some parents finding themselves and their adult children in a difficult situation down the road. A situation which could have been completely avoided.

So when I came across a paper written by Nova Scotia lawyer, Paul Miller, for the Halifax Association of Community Living on the importance of guardianship, I was anxious to share it and see it more widely circulated in the disability community. Fortunately, Mr. Miller graciously agreed.

What more can I say? Just read it.

Legal Guardianship ... Going It Alone?

The issue of guardianship is certainly becoming more prominent in many parents' minds today, particularly with the advent of the RDSP. As if there weren't enough reasons to seriously consider it before!

The Nova Scotia Supreme Court has recently released new Civil Procedure Rules. As their name might imply, these are the procedural rules that govern applications to the Supreme Court in civil [ie. non-criminal] matters. Of particular interest to our community is C.P.R. 71, concerning Guardianship.

I know some parents have been considering the advisability of bringing such an application on their own, without hiring a lawyer. They would be well-advised to study this Rule (as well as the other Rules it references) as it will govern their appearance in court.

And although I am not 100% clear on the issue, reading this Rule, I would say that it may well be that now only one court appearance is required as opposed to the two appearances formerly required, as set out previously. Which might just make the whole process a little more parent-friendly.

However, that matter could easily be checked out with a quick phone call to the Court Administration Office (sometimes called the Prothonotary's office) at the Supreme Court Justice Centre located nearest to you.

A self-represented litigant would also be very well-advised to review this page of tips before proceeding.

New Look ~ Work in Progress

After a year and a half, I thought maybe it was time for a new look.

Only problem is, now I can't decide if I like it. So it might just change again, you never know. Decisions, decisions...

But feel free to tell me what you think.

Yes? No? Maybe?

Quick Note ~ Caregivers Expo

Just a quick note to let you know about the upcoming Atlantic Caregivers Expo on May 9 & 10, 2009 in Exhibition Park, Halifax, NS.

First of all, admission is free.

The event is designed for the unpaid Caregiver who gives care and support to family and friends ... spouses, parents, siblings, children of all ages, partners, in-laws, extended family members and friends.

Recognize yourself in there?
If so, think of it as chicken soup for your soul.

Not only will there be a showcase of many products and services, but they will also be offering FREE informational workshops. I don't have a list of topics as of yet but if I'm lucky enough to get one, I will post it later. I can tell you, however, that there will be an information session on the RDSP.

You can find more details on the Caregivers Expo near the bottom of the green sidebar as Item V. under the heading "Places To Be - Upcoming Events". You can also contact Caregivers Nova Scotia at 902-421-739, 1-877-488-7390 or visit their site.

See you at the Expo!