A Little Behind The Curve *

First promised advocated for approximately three years ago, then back in the news again nine months later, it appears to have finally come into being earlier this month. 

And, just as an aside, it would appear that the Liberals also got their wish - the government is providing $585,000 to establish the system, along with additional annual operational funding which is to increase to $945,000 over the next five years.

And just in case you're not familiar, here's everything you might ever want to know about the how and why of a 211 system.

* That title could, of course, refer to how long the 211 system took to come to Nova Scotia.  Or it could equally refer to how slow I was in getting around to blogging about it. Meh.

'Educational Malpractice' Revisisted

Interesting news out of the US at the moment - some faithful readers may recall a post from way back in the way back on the issue of whether tere was such a thing as a tort of educational malpractice in Canada- the answer being, much as we might wish it were otherwise, pretty much a resounding NO.

And while I remain unsure how much (if any) practical difference it may ever make here, it's interesting to see that the US Supreme Court has formally asked the US Solicitor General's office for its position on whether a parent can bring a negligence claim against a school district that allegedly failed to identify a high school student's disabilities.

Sounds a bit like our old friend, "educational malpractice", doesn't it?

The story goes something like this:

According to court papers, when the student was in 10th grade, her teachers became concerned that her work was "gibberish and incomprehensible" and that she had failed every class. The school district referred the girl to a mental health counselor, who recommended that the student be evaluated for learning disabilities. The district did not follow the recommendation, and it promoted the girl to the 11th grade. [Ed. Note: Sound familiar?]

The mother later made a request for an individualized education program for her daughter, and the district determined that the girl was eligible for special education services for a learning disability.

The mother brought an administrative claim under the IDEA, arguing that the school district failed under the law's "child find" requirement to identify the girl's disabilities sooner. That requirement obliges states to ensure that all children with disabilities who are in need of special education services are identified, located, and evaluated.

This is where the story really diverges from the Canadian situation in that (as I've previously noted on more than one occasion) although Nova Scotia (and other Canadian provinces) uses much of the wording from the American legislation (IDEA), our Education Act has none of its teeth. Nor do we have any of the built-in as-of-right administrative law remedies you will see below.

An administrative law judge largely sided with the family, ordering as much as 150 hours of compensatory tutoring for the girl's lost educational opportunities. However, the judge refused the family's request for a private school placement at public expense.

The school district appealed that ruling in federal district court, arguing among other things that if the family prevailed, students with disabilities would be able to bring "educational malpractice" claims against districts.

The district court rejected the school district's arguments, and a panel of the U.S. Court of Appeals for the 9th Circuit, in San Francisco, also sided with the family.

In a 2-1 decision in March 2010, the 9th Circuit panel rejected the school district's arguments that the IDEA did not authorize claims where there was no affirmative refusal to act on the part of district officials. The majority held that there was a broad jurisdictional mandate under the federal special education law, and that in this case there was "willful inaction" on the district's part in the face of numerous "red flags" about the student's disabilities.

Although there was one dissenting voice in the US Court of Appeals decision, the parents certainly do appear to be making headway.  It will be very interesting to see where this case eventually ends up (as in how the US Supreme Court - which would be the equivalent of the Supreme Court of Canada - decides) and, if the parents are successful, whether or not there will be any language in the decision which might be useful for Nova Scotian Canadian parents.

Don't hold your breath though - apparenlty the Solicitor General's office typically takes several months to respond to a request for its views in any given case and the Court's decision itself could take much, much longer. 

Still, something to keep an eye out for - Compton Unified School District v. Addison (Case No. 10-886).

HEALTH AND WELLNESS--Mental Health Strategy Public Consultations

Nova Scotians will be able to help shape the province's future approach to mental health and addiction services as work on the Mental Health and Addictions Strategy moves into the public consultation phase.

The Mental Health and Addictions Advisory Committee, which is leading development of the strategy, will hold six public consultations across the province, beginning April 18 in Greenwood and ending May 16 with a consultation for the Francophone and Acadian communities. Consultations will also take place in Amherst, Sydney, Halifax and Bridgewater.

"I urge Nova Scotians to help us to revamp mental health and addiction services across our province by participating in the public consultations," said Health and Wellness Minister Maureen MacDonald "Your input will help us ensure better health care for you and your family."

The Mental Health and Addictions Strategy was announced in the March 2010 Throne Speech. Ms. MacDonald anticipates receiving the advisory committee's recommendations by October.

The advisory committee is composed of 12 health experts, researchers, mental health clinicians and people living with or affected by mental illness.

The committee has also been meeting with mental health and addictions groups as part of its work. To date, committee representatives have met with nearly 50 groups with more meetings planned for this month and May.

"The stakeholder consultations have provided invaluable information for the work of the advisory committee," said Joyce McDonald, co-chair of the Mental Health and Addictions Strategy Advisory Committee. "We have had the privilege to hear from many different individuals and groups as well as from professionals who work in the field."

People can also provide input online or through the mail. To comment online, and for more information on the strategy, go to www.nshrf.ca/mentalhealthandaddictionsstrategy. Call 902-424-4043 for a copy of the consultation questionnaire.

Dates for the consultations are:

--Greenwood, Monday, April 18, 8 a.m. - noon, 14 Wing Greenwood, Birchall Training Center, The Chamber Room

--Amherst, Tuesday, April 26, 8 a.m. - noon, 98, Victoria St. East, Tantramar Theatre

--Sydney, Wednesday, April 27, 8 a.m. - noon, Cape Breton University, 1250 Grand Lake Rd., Multi Purpose Room A and B

--Halifax, Tuesday, May 3, 1 p.m. - 5 p.m., Saint Mary's University, Burke Building, Burke Theatre B (Entrance off of Inglis Street)

--Bridgewater, Thursday, May 5, 9 a.m. - 12:30 p.m., South Shore Regional Hospital , Lecture rooms 1-3 (Third Floor)

The French consultation will be held in Halifax, Monday, May 16, 8 a.m. - noon at the Université Sainte-Anne, Campus de Halifax, 1589 Walnut St. It will also be broadcast to four communuities:

--Petit-de-Grat, Campus de Petit-de-Grat, 3433, route 206

--Pointe-de-l'Église, Campus principal de Pointe-de-l'Église
1695, route 1

--Grand-Étang, Campus de Saint-Joseph-du-Moine
12521, Cabot Trail

--Tusket, Campus de Tusket, 1, Slocumb Crescent

Just passing things on ... respond as you see fit.

PS This came by way of Michele Raymond, MLA (Halifax Atlantic)

Political Success????

Update: I see Jim Morton, MLA for Kings North is to be making an announcement at 11:00 tomorrow this morning (Monday) at the Flowercart on behalf of the Minister of Community Services. 

Whazzup, you ask?  "Expanded support for Persons with Disabilities in Nova Scotia", they say. We shall see ... we shall see ...

Is it actually possible?  Possible to successfully advocate with our politicians and see positive change - direct positive results?Ask me that question a few weeks ago and, depending on my mood, I might have spouted the party line ("Never doubt that a small group committed people can change the world.  Indeed, it's the only thing that has.") or you might have gotten a more cynical response.


Ask me today and ... you will get guarded optimism.  Tinged with a bit of excitement. 

You might recall my recent blawg beg post, asking for your support by writing to your MLAs and the Minister of Community Services to request that the provincial government deal with one aspect of the "gap year" families face when their children reach the age of 18.  An "adult", according to the feds.  Still a minor, according to the Province.

At any rate, I was informed by my MLA, Ramona Jennex, today that even though there has been no media coverage (and nothing apparent on a review of the gov't website), there is  indeed a line in the budget to address the gap year issue.  Now who cool would that be?

Notice I say "would that be" ... because when it comes to politics, even seeing isn't necessarily always believing.  Forgive us if, as a population, the disability community, as a whole, tends to be a little sceptical of all things political. 

Please don't get me wrong, it's not that I doubt Ramona's word for one minute (and she did say she pushed and pestered until she saw the budget line with her own eyes), but first said budget will need to be passed into law.  Which, of course, shouldn't be an issue in a majority gov't situation.  Then, as Ramona pointed out, the Department of Community Services will need to figure out exactly HOW they will implement this change - will there be some procedure put in place whereby people will have to apply for this extra funding, etc.

So, yes, guarded optimism would best describe it at the moment.  Okay, maybe, more accurately, guarded but very optimistic.

And although I think Ramona (and yes, perhaps even, the Minister of Community Services) deserve a well-earned pat on the back, perhaps it's best if we wait to pat ourselves on the back until we actually see the change in effect on the ground.

Still, who ever said that a small group of committed people can't change the world, even if it is only one small step at a time?

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.

Guardianship Presentation # 4 ... But Whose Counting?

Nothing like very last minute news but ... we do say better late than never, right?

Just a note to let anyone who might be interested know that I will be giving another presentation on Supported Decision Making and Guardianship in Nova Scotia tomorrow, Friday, April 1st, at 6:00 p.m. at Acadia University in Wolfville during the weekly Friday evening SMILE time. You can find a little more information on the sidebar under the heading "Places To Be".

That's all for now then.

Better Late Purple Than Never

Some might say Purple Day 2011 has already faded into the sands of time. I, however, beg to differ.  After all, as long  the EANS will be the beneficiary of the upcoming Lions Breakfast this Saturday, courtesy of Purple Day, I say it's still fair game.  Which is a good thing, considering I haven't had an opportunity to do any Purple posting until now.

So. Purple Day. 2011.

It having been a bit of a crazy few months in my life, we didn't manage to paint our little corner of the world quite as purple as we did last year.  But we still made a respectable showing, I believe.

Horton High School once again took up the cause, with the Blue Jay (this year, with the help of the Kit Kat)  and her classmates again selling purple cupcakes, handing out information and taking donations.  She also had the chance to make a school-wide announcement and explain the purpose of Purple Day before the big day, which was nice.  And it appeared that the whole school pretty much really got into the spirit, with Purple Day posters lining the walls and a sizable portion of the student body decked out in their finest purple gear.

We hit the local Mall again this year, actually, we spent all day Saturday as a family affair at the Mall, where we once again sold bracelets and purple cupcakes, handed out information, pins and ribbons and took donations.  Mucho donations.

Well mucho, considering I have never approached our Mall adventures with the intent of them being fundraisers; their primary purpose is to educate people and get a conversation going.  So it was very gratifying to see now only how many donations we got (and how many $20 donations, at that!) but also how many more people were aware of Purple Day this year than last.  The word is clearly getting out there.

Our family has struggled through a long and often painful journey with epilepsy.  Not as long, not as painful as that some families have and will continue to go through but certainly longer and more heartbreaking than any child or anyone who loves a child should have to face.  And no matter what the future brings for the Blue Jay, I will always be eternally grateful for the past several years of relative peace.  The Blue Jay's life is still not easy (and likely never will be) but things are so much easier for her (and, thus, all of us) when the ugly seizure monsters are held at bay.

And yet, really, I think it's the very fact that the Blue Jay's seizures are so well-controlled at the moment that motivates me to be so involved with Purple Day.  True enough, were it otherwise, I would no doubt be equally but differently motivated to take up the cause, both on her behalf and for so many others.  But for now, it's the fact that we have it so much better than so many others, that we have found, even if turns out to be only temporarily, our magic panacea for her seizures that makes me appreciate how lucky we are and how wrong it is that others out there are still in the position we once were.

I suppose we will always be a Purple family.  Actually, perhaps more accurately, I truly hope that we will always be a Purple family.   There are many, many "good causes" in the world and no one person can take them all on.  But person by person, family by family, we all can make that extra effort to support and promote at least one. 

Epilepsy has touched our family deeply and will always leave a scar.  But I believe it has also left us with something else, something positive and good and pure - the requisite empathy that moves compels us to step up and contribute our small piece to the far larger effort needed to help others who continue to fight a daily battle, not only with this often devestating neurlogical disorder, but with the equally, if not sometimes more damaging, effects of public misconception and the resulting social stigma.

So what cause is personal and near and dear to your heart?  And, more importantly, what are you doing to help make life better for those who live it?

Blawg Bleg - Gap Year for Young Adults with Special Needs

I would like to request your assistance with my current project du jour.

Our kids who are eligible for the Disability Tax Credit receive a Disability Supplement on the monthly Child Tax Benefit cheque. This can be quite significant - in my case, both my daughters get the Supplement and it doubles the amount of our monthly cheque. But when they turn 18 (which my oldest does in March) they lose the Child Tax Benefit (including the Disability Supplement) and the Province doesn't kick in with Social Assistance benefits until the person turns 19.

I have been dealing with my MLA (Ramona Jennex) on this issue, who has been dealing with the Minister of Community Services on my behalf. Apparently the Minister if aware of the issue but hasn't yet figured our what (if anything) to do about it. So Ramona asked me to write a letter directly to the Minister setting out specifically what I wanted to see happen which she would then hand-deliver. You can find a copy of that letter below the jump.

I haven't heard anything back yet and I think it would be really good if the Minister had letters coming at her from all over the Province on this issue so she could see it's not an isolated thing, but it has a big impact on a lot of families. So I am asking you to please take a few minutes to write to both your MLA and the Minister expressing your concern with this matter. For many families, that lost income can make a big difference over the course of a year.

Although actual written (typed) letters are known to be much more effective than email, if writing an email is all you can do, even that is better than nothing. I believe we can get this issue dealt with if we make it clear we are serious about it. So please take a few minutes and type or write something up to send your MLA and the Minister. You can use the same letter to both (perhaps direct the letter to the Minister and copy it to the MLA) and work off my attached letter, if you wish, but please don't just copy my letter and send it on because we know it takes actual individual letters to have political impact and form letters just don't cut it.

If you're not sure who your MLA is you can go to this page and find out by selecting your electoral district from the drop down menu. Then click on the MLA Information link under the name of your MLA and you will be taken to a page with the MLA's contact information.

This page will give you the contact information for the Minister of Community Services.

Even if your child is over the age of 19 and this no longer directly applies to your family, I would still ask for your assistance. The more letters we get moving, the better chance we will to with deal with this issue. And the way I see it is we have a lot of things that need changing but we can only do it one issue at a time.

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".

Blawg Lite Life

I apologize for the blawg lite status around here recently.  I do hope to change that soon.

In the meantime, a couple of things.

First, there's a new book review up behind the wall - Everything you NEVER wanted your kids to know about SEX (but were afraid they would ask): The Secrets to Surviving Your Child's Sexual Development from Birth to the Teens.  Although neither disability-specific nor legal-specific, I do recommend it.  Go see why.

Also the next book I intend to review - Raising a Kid with Special Needs - The Complete Canadian Guide (read but not yet reviewed).  Anyone who has done any reading on the disability issue will immediately recognize just how rare it is to see a Canadian book on the topic.  'Nuff said for for now.

To be (hopefully) followed by Sexuality: Your Sons and Daughters with Intellectual Disabilities (again read but not yet reviewed). Yes, yes, you might be seeing a bit of a pattern here.   But I am the mother of two teenage girls ... what do you expect?

On a different note, a thought I would like to share (or, perhaps, bounce off you might be more accurate).

I'm not much of a "social media" person (blogging aside) - in fact, I think I must be one of the few remaining North Americans not on Facebook. But it's recently occurred to me that perhaps the time has come to take the plunge, so to speak - often I will come across an interesting story (online or in the newspaper) that I really want to blog about.  Really intend to blog about.  But never actually get to.

So I am wondering how well a Twitter page (I must confess that I do rather cringe at the thought of being a 'tweeter', or is that 'twit') would go over.  At the very least it would give me a forum to throw out those subjects/events that I think are really important, that we really do need to talk about, whether or not I actually get the time to blog them.  As opposed to having them lost in the sand of times, the way they often are now. Despite my best intentions.

The way I see it, some would remain tweets while others would turn eventually turn into full blawg posts. So what do you think?  Are there any twits tweeters out there?

But What Does It Mean?

Deaf and hard-of-hearing children are neglected, abused and otherwise maltreated at a rate 25 percent greater than others, U.S. researchers say.

Researchers at the Rochester Institute of Technology in New York directly correlate childhood maltreatment and higher rates of negative cognition, depression and post-traumatic stress in adulthood.

The researchers found 77 percent of deaf and hard-of-hearing respondents indicated experiencing some form of child maltreatment, vs. 49 percent among hearing respondents. In addition, respondents with more severe hearing loss indicated an increased rate and severity of maltreatment.

I found the above report interesting.  Even though I wasn't sure exactly what it meant.

I mean, yes, it's sad. And pathetic.  And wrong.

But what exactly does it mean?

What does focusing on the abuse of children who are deaf and hard of hearing, as opposed to those who have other forms of disability, really tell us?

Sadly, I'm not surprised to find these children are maltreated at a rate greater than 25% than others.  But when we compare them to their "hearing" peers, are we also comparing them to their hearing peers who are mentally challenged? Physically challenged?  Those with ADHD or autism? 

Are they abused amy more or less than children labelled with other disabilities?

Does it really matter?

Has anybody done the studies, published the statistics showing how much more children with any form of disability are likely to be mistreated?

I'm certainly not promoting any us v. them division in the disability community.  I guess I am just wondering why a study was done which focused on this particular disability as opposed to some different disability. Or all types of disability.

That and just what people propose to do about it.  If abuse of any child is a crime (as well it should be), can these perpetrators be sentenced for a "hate crime" when their abuse is perpetrated against a child (or an adult) with a disability?  Should they be?

Just some rambling thoughts of a mother/lawyer on yet another snow day in Nova Scotia.

Ten Reasons to Improve Your Negotiation Skills

Posted, perhaps, under the category of easier said than done...

1. Negotiation is part of the advocacy process. There is no question that once both sides agree on the educational, health, safety, physical, social, and emotional needs of the exceptional pupil, they MUST be met. But both sides may have different opinions as to how the needs should be met. So we don’t negotiate about which needs should be met (although priorities can be set), but rather HOW to meet them.

2. Choosing a negotiation strategy instead of an adversarial approach preserves relationships and builds trust. It is better to negotiate solutions than to leave matters in the hands of panels of arbitrators who don’t have first-hand knowledge of the student.

3. Negotiation ensures that both sides find common ground. As part of the process, you will be surprised to find out how many things you already agree on.

4. Negotiating solutions saves money because there is no need to hire expensive lawyers.

Now, on that last note, get along and read the rest of it.

* Courtesy of Karen Robinson, AFASE at School

Guardianship ... In a Nutshell??

I have been getting a fair number of private emails on the guardianship issue recently, which is fine but which has also got me thinking (always a dangerous proposition) ... so I've decided that I might share a bit of what is fast starting to become my "standard answer".

I'm not sure how familiar you are with all the ins and outs of the guardianship issue but just ... it might well be a fair bit more challenging to get guardianship of the [higher functioning daughter] then it would be for your other daughter. I'm not suggesting that your one child doesn't require guardianship or that you shouldn't apply for it, just that obtaining guardianship (with or without the services of a lawyer) could be a fair bit trickier when it comes to our higher functioning kids.

Fist, I might suggest you read my posts regarding guardianship on my blawg (if you haven't already) ...

My other suggestion would be that you consider attending one of my presentations on the issues of guardianship, powers of attorney, personal directives and Henson Trusts (and if you are not familiar with Henson Trusts that is something you really need to know about when it comes to leaving any money for your daughters, in your Will or in any other form). I have been giving these for various disability organizations recently and you might find attending one of these free sessions helpful in clarifying your and your children's situation, including whether guardianship is the best option for both children or whether there might be some other legal tool available to accomplish what you need.

The next presentation I am giving is for the HACL (Halifax Ass. of Community Living) on January 29th at 1:00 in Halifax at the Keshen Goodman Library. They tend to run around 2 hours with me talking for about 1 1/2 hours and about 1/2 hour for questions. If you can't make that presentation, but are interested, I could let you know when I get a date for another one.

All that being said, if you are really comfortable that guardianship is what you want and need, I can offer you the Nova Scotia Legal Guardianship Kit, which I created to help parents, such as yourself, to obtain guardianship of their challenged children without having to incur the costs of retaining a lawyer. The cost of retaining a lawyer to bring a guardianship application can be very prohibitive for most families (I am hearing a range of $3,000 - $6,000) which is why I created the Kit. In many cases (especially those where the child is very low functioning), I believe it is something that parents could do on their own (if they are so inclined) if they had the necessary background knowledge.

The Kit provides all the precedent documents you would need to file with the Court, along with an explanation of what each document is and how to fill it out (giving as many different examples as possible) as well as explaining the how (process) and why of obtaining guardianship and what a person's obligations are once they have been granted guardianship. I am currently offering a hard copy of the Kit for $315 (which includes $15 shipping anywhere in the Province) and hope to eventually get set up so parents can download an electronic version, which will sell for $250.

I should mention that one other option that might be open to you (as opposed to either hiring a private lawyer or going it alone with the help of the Legal Guardianship Kit) is retaining a Legal Aid lawyer. You, personally, may or may not qualify financially for Legal Aid, but one possible way around that could be to have your child made the client. In your case, and I am thinking of your daughter with Aspergers - if she was agreeable to you obtaining guardianship and was considered competent enough to instruct a lawyer (and it's not a real high standard of competency to instruct a lawyer), that might be an option to consider. Then again, as long as you would be going to court to apply for guardianship of one child, you might feel that you might as well just do both. I go into a little more detail about the Legal Aid option in my presentations which is another reason that I would really recommend that you consider attending one.

....

PS As an aside, I feel you are very smart to try to move on whatever you decide to do as soon as quickly as possible now that your children are 19. I know some parents feel that there is no urgency as it is unlikely that anything bad would really happen or could go wrong, but I have seen two situations recently - one in which the parents were very happy that had applied for guardianship as soon as their daughter turned 19 when later that year they were dealing with Community Services on the issue of placement and one where the parents did not move quickly for guardianship and a total nightmare situation developed in which a family of very shady characters essentially took their son away from them and obtaining guardianship and protecting their son turned into a full-blown court battle - that have really driven home for me how important the issue really is.

And with regard to the question of the necessity of guardianship in order to open a RDSP …