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.

READ MORE

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.