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.

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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.

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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!

Just Let Us BE

We've talked before about prenatal screening, particularly as it relates to children with Down Syndrome, although it really could apply to any of our special kids.

We've talked about the importance of signing the Petition to have the federal government pass a Prenatal Diagnosed Condition Awareness Act.

And now, now we can watch



and see exactly what we're talking about.

Going Purple ... With Pride

This isn't the usual type of post you will find on A Primer on Special Needs and The Law.

But I hope you will bear with me as I share with you with a very important event for one portion of the disability community ... a portion that's near and dear to my heart.

Epilepsy aka the seizure monsters have played a big role in our family's life. For a very long time.

My oldest daughter had her first seizure when she was 13 months old and she was diagnosed with a "seizure disorder" when she was 2 years old. Despite the doctor passing me a pamphlet from our provincial epilepsy association when he gave us this diagnosis, it was quite a long time before I actually put two and two together. And realized that "seizure disorder" was just another way of saying epilepsy.

It's amazing how huge language is. How it can so easily hurt. Come with so many stigmas attached. Can be used to build someone up . Or tear then down. Sometimes without the speaker even realizing it.

And so it is with the word epilepsy. There's a certain stigma attached. Although it doesn't carry as much baggage as the words "mentally retarded", for some people there's still a certain sting to it. And if you doubt that, try the word "epileptic" on for size and see if you feel any differently. Think of it applied to your son or your daughter. Or yourself.

And so it was understandable that 9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her. Can you blame her?

And yet time and again we have seen that from many dark moments, a light can spring. And so it was when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation. It empowered Cassidy to speak up for the first time in front of her classmates and *admit* (yes, admit) that she had epilepsy. And that by itself, were that the end of the story, would have been admirable.

But Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy. And with that, Purple Day was born.

From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

I am sad to say that I was totally unaware of Purple Day last year. My loss, I'm afraid. But this year, I am proud, along with my husband and my children, to be a vocal supporter of Purple Day.

Come Thursday, we will be proudly wearing purple, along with (hopefully) most of the combined approximately 700 students at a local elementary and middle school. That's hoping my youngest daughter and I are successful in our brief presentations on Wednesday to explain to the students why Purple Day is so important. And, equally, why it is so cool.

After all, how can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?

On the internet, people like to talk about videos or posts going viral. Might I suggest that thanks to Cassidy and, this year with the help of the Anita Kauffman Foundation, Purple Day has indeed gone viral.

Congratulations, Cassidy. You truly inspire us all. If there was ever a person to prove that one child person really can make a difference, it is you.

And on behalf of the Blue Jay and our family, the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, a very heartfelt thank you.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now.

Apply For ...

A quick show of hands, how many here are familiar with the Special Needs Information Service?

In case you're not, you really should check out the link in the blue Sidebar under the heading "Helpful Links ... in General").

Special Needs Information Service Online provides a comprehensive directory and a user-friendly searchable database of service agencies and programs for children with special needs, birth to 18 years of age. The agencies and organizations included have agreed to participate and to update their information annually. Host sites currently in Newfoundland & Labrador, Nova Scotia and Prince Edward Island identify suitable local services, maintain regional databases and user statistics and publicize SNIS Online in their region. An Advisory Board composed of representatives from host sites, partners and academic researchers is responsible for the development and implementation of operating procedures, expansion of services, research projects and finances. The Centre of Excellence for Children and Adolescents with Special Needs provides annual funding for network maintenance and administrative and technical support.

Although I thought I was familiar with the site, following a link and moseying around the web today, I was a little surprised to come across this Checklist for Parents.

Might I strongly suggest that it's well worth a look, setting out everything from potential income tax deductions at the federal level to various provincial benefits and programs.

We've discussed many of these items previously on this blawg, but look ~ here they are cleanly set out on one page. Have you missed any to which you might be entitled?

And, just as a word to the wise, you might want to pay particular attention to No. 35:

35) Get ready ahead of time for the transition from childhood to adulthood. When children with special needs reach the age of 19, they are legal adults and their parents are no longer their legal guardians without acquiring legal guardianship
through the courts. If your child is dependent on others for assistance in personal care and decision making due to a developmental disability, chronic mental illness, acquired brain injury, or other difficulties you may wish to obtain legal advice concerning guardianship and power of attorney. You will need to plan for the transition from children's programs to adult services in Departments of Health and Community Services. You may need to apply for income support and employment and housing opportunities for your family member. Allow enough time beforehand to find out what changes will be necessary and how you can access adult services.

A Time Out For The Use of "Time Out Rooms" in our Schools

Update: Care to know how many "time out" rooms your school board has?

And by the by, you will be happy to know (or not) that as it turns out that Windsor-school-storage-room-turned-time-out-room is not a part of any student's IPP at the school.

~ ~ ~ ~ ~

The story of the 8-year-old boy placed in a "time out" room by the Annapolis Valley Regional School Board (AVRSB) raises more questions than it answers.

Or, perhaps, less questions, than issues.

At least, Dylan Gale's mother apparently knew that he could be placed in such a room, even if she had a different understanding of what type of room it might me. As in a classroom as opposed to a storage closet. So, what's next? The janitor's closet, perhaps?

Forgive my cynicism, but I have heard more than a few stories about so-called "time out" rooms over the past few years. And the fact that the Nova Scotia Department of Education tells us that they have guidelines in place, "adopted by the Council of Atlantic Ministers of Education and Training from a New Brunswick document", somehow fails to warm my heart.

The only document I could find online is entitled "Time Out Guidelines For New Brunswick Schools", dated November, 2002. I suspect this, or one very similar, is the document referred to in the Chronicle Herald.

So-called "physical considerations" for the use of such rooms include:

􀂉 Having prior approval of the Facilities Branch Manager of the Department of Education
􀂉 Meeting Fire Marshall standards (consult the Assistant Fire Marshall in your geographic region)
􀂉 Not being locked from either the outside or the inside Be supervised at all times
􀂉 Not containing items or fixtures that may be harmful to students
􀂉 Being well ventilated, clean and well lit
􀂉 Being conducive to self quieting behaviours and not overly stimulating or busy
􀂉 Allowing students to exit should there be an emergency
􀂉 Providing the means by which adults can monitor the student, both visually and auditorily, at all times.

But here's thing. It's one thing to say that such rooms must be "supervised at all times, well-ventilated, clean and well-lit", for example. It's another to hear horror stories as to how such rooms are, at least on occasion, being used. Both from around the Province and elsewhere.

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Hurry Up and Wait Continues

It looks like that long-awaited mental health court will be a little bit longer in coming to Nova Scotia. It being announced today that it could be as late as the Fall before the court is ready to open. On account of it involving, you know, a major renovation and all.

In the meantime, I suppose we can always continue doing it the old-fashioned way, with the usual "public policy insanity ...cycl[ing] people through cops, courts and prisons without treating their underlying illnesses".

Seeing as how well that's worked for us in the past.
Yeah, sure, that's the ticket.

Royal Bank RDSP Best Described As 'Work in Progress'

I considered titling this post "Royal Bank RDSP SNAFU" but then decided that perhaps that was a little harsh.

The sales rep I dealt with was very personable, very friendly, worked hard to resolve my issues (all the way up the chain of command) and despite and through it all, still managed to leave me with a reasonable enough sense of confidence in his knowledge and ability regarding his investment advice at the end of the day. So that was the positive part of the experience.

The rest of it, you ask. Yeah, about that.

Can anyone say screwed up?

In defence of the Royal Bank, again (and no, they are not my primary banking institution, I had no dealing with them prior to opening this RDSP), from the comments on this particular post over at the RDSP blog, the Bank of Montreal seems equally screwed up. I can only expect (but have no actual knowledge) that CIBC will be in the same leaky boat.

But screwed up? Yeah. My sense is that maybe, just maybe, the financial institutions are 'making this up' as they go, with conflicting interpretations and advice coming from all directions.

In my case, I had serious reservations around the wording of who, exactly, could be the Holder of the Plan. No, sorry, saying the paper says something other than it actually does does not make it so. No matter how many times you try. That just doesn't work.

The problem was that the application documents were worded to provide that although I, as the beneficiary's parent, could open the RDSP, once she turned 19, one of two things must happen.

It stated that if she was competent, she would become the sole holder of the Plan. And if she wasn't competent, someone else (other than I) would have to be appointed holder.

Which is, of course, completely contrary to what the Canada Revenue Agency (CRA) says, namely, that if the beneficiary is under the age of majority when the Plan is opened, not only can the parent open the Plan but they will stay on as holder after the child reaches the age of majority. No matter whether the child is judged competent or not at that time.

So, yeah, a little difference there. In fact, the application was so badly worded that it purported to say that even if I obtained guardianship of my incompetent child when she turned 19, I still couldn't be the holder of the Plan. Some stranger would have to be. Yeah. As in no, I don't think so.

In their defence between Thursday afternoon when I first went in to open the RDSP and today at noon, they were finally able to advise me that Royal Bank was aware of the mistake in their documents (the actual Trust agreement, while better worded, was still out of compliance with the CRA policy) and had entered into an undertaking with the CRA to (hopefully?) bring the RBC documents in line with the CRA policy.

Being advised that once this occurred, the changes should be retroactive (meaning that my documents would be magically legally fixed), I decided to take the plunge. For the simple fact that, best as I can tell, the other banks aren't necessarily doing a much better job sorting out the documentation at the moment. And if, worse case scenario, the Royal Bank doesn't change its documentation, I can always move the RDSP to another financial institution who is doing it right. Fortunately for us, our daughter is only 16 so we at least have a few years before she is considered adult and this issue would become relevant.

So there you have it.

Moral of the story ~ You might want to make sure that you know at least as much as to how the RDSP works is suppose to work as your financial institution. Actually, it might not be that hard to raise the bar and ensure you know more about how it is suppose to work than they do.

Because if you don't read the fine print and if you're not well-familiar with the CRA rules, you could just find yourself signing something completely different than you intended. And it isn't always a good idea just to accept what a sales rep or even someone above them tries to tell you is the correct interpretation of a document. Never ever count on what someone verbally tells you changing or amending the document you are signing. Not without legal advice.

And if you're not sure of what you're about to sign, don't sign it. That's just good common sense legal advice in any situation you find yourself in. And perhaps extra important to keep in mind while the banks try to sort out the intricacies of the RDSP.