The Perfect Summer Day

You might remember my previous post about Kilometers for Communication and 17-year-old's Skye's journey across Canada to raise awareness and funds around issues of augmentative and alternate communication.

Yeah, I'm a bit of a fan. I admit it.

Which is why I was thrilled to learn that Friday July 22nd, 2011 is the big day!

From 11:30am—1:30pm on the Halifax waterfront, outside the Maritime Museum of the Atlantic. BE. THERE.

I'm not too pushy, am I?

Hope not, but then again, you were warned that we really need to give Skye and his family a warm Maritime welcome, weren't you?

To top off the perfect day, apparently Q104 will be on hand for some fun and free food! But as much as I love the words fun, sun and food in the same sentence, that's not the real reason to be there, is it?

For more details, contact: reneajoy@eastlink.ca

And be sure to check out Skye’s blog or, better yet, follow it and his journey as I'be been doing.

If Only ...

I came across this story a few days ago and it made me really, really wish the Canadian Charter of Rights and Freedoms contained wording similar that found in the Americans with Disabilities Act, requiring that people with disabilities be allowed to live in the "most integrated setting" within their communities.

Because if it did, then maybe, just maybe, we could just as easily settle our own class action law suit and rather than assigning dollars to “institutions,” the money would follow the individual to the housing of their choice.

A federal judge on Wednesday approved a settlement to a long-running civil case that will force Illinois to begin moving hundreds of people with developmental and intellectual disabilities into more community-based homes and apartments of their choice.

“I firmly believe that the state of Illinois, the citizens, have been well-served by these efforts,” said U.S. District Judge James Holderman, who congratulated lawyers who have spent months negotiating terms of controversial case.

“I will issue an order promptly,” he said, noting that he had received only two objections out of 21Ö responses filed with the court. “I will announce informally today that my position is that the consent decree should be approved and this should be the law that is followed.”

The settlement in the case filed in 2005 by Stanley Ligasd and other plaintiffs will change the way the state now pays for their care. Rather than assigning dollars to “institutions,” the money would follow the individual to the housing of their of their choice. Institutions are defined in the lawsuit as any private, state-funded facility with nine or more residents.

Unfortunately, though, that's not the case

Leaving us to rely on sec. 15 of the Charter.

Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

And although there are numerous examples of people attempting (unfortunately, not all that successfully) to use the equality provisions of the Charter to fund adequate social assistance rates and sec. 7 guarantees to "life, liberty and security of the person" to argue a right to subsidized housing for Canadians, I'm not sure that anyone has yet tried to pair sec. 15 rights with a right for the physically and mentally challenged to live within their own communities, in the homes they would choose.  As opposed to those that are imposed on chosen for them.

Although I'm thinking the wording of sec. 15 will never be found to support such a right; that we would need much more explicit wording, such as that found in the Americans with Disabilities Act.

Still, anyone there aware of any Canadian case law in this regard?

Yet Another Issue

Still heady with our recent success over the gap year issue, my mind recently turned to another, related topic.

Hopefully, everyone whose child is enrolled in the Province's Direct Family Support Program for Children (formerly known as In Home Support for Children) is aware of the extra respite funding (up to $1,000) available over the summer months. No complaints there, it's a lifesaver for this family.

But it occurred to me recently that our family won't have access to that additional summer respite funding next summer, given that our oldest child recently turned 18 (let's not even go there!) and next year will have (supposedly) transitioned to the Direct Family Support for Adults program.  The Direct Family Support for Adults program,while it may have much to recommend it does not offer additional summer respite funding. 

And that would make  sense I suppose as long as the "adult" in question is not still enrolled in high school and, thus, still faced with two long summer months without a whole lot to do.  I mean it's not like she's going to be able to get a summer job, is it?  Or even summer work in some short of sheltered workshop environment? No, no she's not.

So it only make sense to me that as long as these kids young adults are still in school, the summer respite funding should continue.

Yes, I am well aware that there are many, many other issues to be dealt with.  But for us, like most families, I imagine, those issues that face us in the immediate future tend to stand out in stark contrast. Right now, there are a few staring me in the face, the most immediate being school and behaviour-related but as I determine our needs for summer respite for this year, I can see far enough down the road to be cognizant of the problem we will face next summer.

My. Daughter. Simply. Does. Not. Do. Down. Time. No way. No how. 

She just doesn't know how, which tends to make summer challenging even when I have access to a pot of extra respite funding.  Because then I only have to find respite workers and appropriate activities. (Yes, there was just a touch of sarcasm there.)  But without that money?  No, it's probably best I don't think too much about that at the moment.

So let's just consider this a heads up.  It's an issue that many, many families face and one I'm hoping we will be able to do something about in the near future.

So. Any future takers out there?

Press Release - 2011 Federal Budget Recognizes More Needed for People with Disabilities and Families

FOR IMMEDIATE RELEASE

June 6, 2011, Toronto – ON. The Federal Budget tabled today before the House of Commons recognizes that more needs to be done to support people with disabilities and their families. CACL’s President Bendina Miller welcomed the budget measures and expressed: “Today’s budget takes modest steps to address the needs of people with disabilities and their families. It recognizes that: families and caregivers are at the core of supports to persons with disabilities and that more needs to be done to support them in this role; improvements are needed to the RDSP to ensure people with intellectual disabilities are able to enjoy equal benefit of the savings mechanism without jeopardizing their legal capacity; and, that new investments are needed to address the long-standing exclusion of people with intellectual disabilities from the labour market.”

CACL is encouraged by the inclusion of disability issues in this Federal Budget and is hopeful these new investments are first steps in developing a more comprehensive national disability strategy. In particular, the Federal Budget commits to:

• Enhanced support for families and caregivers through:

o a new Family Caregiver Tax Credit, a 15-per-cent non-refundable credit on  an amount of $2,000
o removing the limit on the amount of eligible expenses that caregivers can claim under the MedicalExpense Tax Credit
o a Children’s Arts Tax credit – with an enhanced component for children eligible for the Disability Tax Credit.

• Improving Labour Market Outcomes

o A $3billion investment over 6 years for new Labour Market Agreements to address gaps and improve labour market outcomes for under-represented groups.

• Improving the Registered Disability Savings Plan (RDSP) by:

o Increasing withdrawal flexibility for those with shortened life expectancies.
o Conducting a 3-year review to address issues raised by Canadians with disabilities and their families including a specific recognition of contract/legal capacity issues some adults with disabilities have encountered in trying to open and manage a RDSP.

“Employment is a major issue for people with intellectual disabilities. Something isn’t right when employment rates for working-age adults with intellectual disabilities are one-third of the employment rate of people without disabilities and when the average income for working age adults with intellectual disabilities who are working is less than half of that of Canadians without a disability. Canada needs to take a serious look at how to improve inclusive labour market outcomes for people with intellectual disabilities. This Budget is one step in that direction.” said CACL Executive Vice President, Michael Bach. “CACL looks forward to working in partnership with the Government of Canada in realizing these new investments and identifying the next steps to build strategically on these investments.”

About the Canadian Association for Community Living

The Canadian Association for Community Living is a Canada-wide association of family members and others working to advance the human rights and inclusion of persons of all ages who have an intellectual disability. CACL’s federation is comprised of 10 provincial and three territorial associations, 420 local associations and over 40,000 members.

For more information, please contact:
Michael Bach, Executive Vice-President, 416.209.7942, mbach@cacl.ca

Anna MacQuarrie
Director, Policy and Programs
Canadian Association for Community Living
Kinsmen Building, York University
4700 Keele Street
Toronto, ON M3J 1P3

Tel: 416-661-9611 ext 204
Fax: 416-661-5701
amacquarrie@cacl.ca
www.cacl.ca

Curious

I have a question that I am am wondering if some of my readers might be able to help with.

I am wondering how many (if any) of your kids have been turned away from your local mental health service (most likely known as Child and Adolescent Services) due to the fact that they have "special needs" - or, more accurately, because they are mentally challenged.

I know many of these Services work with children and adolescents on the autistic spectrum, but has anyone been turned away because their child is mentally challenged?

I am really hoping I might get some responses here, whether they be yes or no. Thanks.

'Day 4- West Vancouver to Mission, BC - 83 km'

We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.

* A quote from Skye's blog that I thought was simply too beautiful not to pass on.

Most Excellent

I've done a fair bit of political lobbying in my life, from way back in the way back, when I worked with a group dedicated to ending poverty for third world children until I took on the job of advocating for my own children and others in this Province.

The problem with policitial lobbying being, as I know many of you can attest, that you can do a whole lot of lobbying and get no very little results.  Which is why so many of us (are tempted to) give up, no?

Well, they say there is a first time for everything and today I might just be a believer.

Some of you might remember, back in March, when I asked for your help in writing to your MLA and the Minister of Community Services concerning the "gap year" faced by families in Nova Scotia when their young adult children are between the ages of 18 and 19.  Lose the Child Tax Benefit (including the Disability Supplement) from the federal govertnment with nothing to replace it from the Province until the child turns 19.

You might also recall a post last month where I expressed hope that maybe, just maybe, we had been successful in that regard. My MLA, Ramona Jennex, had told me that even though there had been no media coverage (and nothing apparent on a review of the gov't website), there was indeed a line in the budget to address the gap year issue. But we all know how that goes, seeing is believing, right?

Well, my good friends, I am overjoyed to tell you that today I received an actual (snail mail) letter from the Minister of Community Services, Denise Peterson-Rafuse, herself, advising that

... this issue will be addressed through a transitional allowance for families in the Direct Family Support for Children Program and has been apporoved for implementation. While the details of the funding allowance have not yet been finalized, it is our intention to make this funding available to families in the Direct Family Support for Children Progam starting on July 1, 2011.  Eligible families will be contacted with further details once they are finalized.

So that, it would appear, is that.

Good on us, I say. 

Give yourselves a pat on the back, maybe crack open a bottle of something bubbly this evening.  Take a deep breath and relax.  Enjoy.  Something tells me we just might need this feeling of accomplishment for what lies ahead.

And, of course, I would be terribly remiss not to offer many, many thanks both to Ramona Jennex and Minister Peterson-Rafuse. I know that Ms. Jennex personally (and repeatedly) brought this issue forward with the Minister and I really appreciate her efforts on our behalf.

Published

I see that the potential op ed piece I wrote last Friday is in today's Chronicle Herald.

Admittedly, the headline wasn't quite what I was going for but we will take what we can get.

Good On Him

Although I cannot for the life of me find the story in the digital world *, I heard on the ATV Evening News tonight that a man in the New Glasgow area has brought a lawsuit against the Province in regard to the lack of sign language interpreters available to the deaf population during emergency situations. I believe the gentleman's name was Fiet, but please forgive me if I'm wrong.

At any rate, this person, who has been deaf all their life, had a stroke and ended up in a Halifax hospital, where he asked for a sign language interpreter so he could communicate with the doctor.  Lo and behold, there were none in the land!

And to think I thought we had well and truly dealt with this issue back in 1997!

Because when the Supreme Court of Canada speaks, really, we all should listen:

71 If there are circumstances in which deaf patients cannot communicate effectively with their doctors without an interpreter, how can it be said that they receive the same level of medical care as hearing persons?  Those who hear do not receive communication as a distinct service.  For them, an effective means of communication is routinely available, free of charge, as part of every health care service.  In order to receive the same quality of care, deaf persons must bear the burden of paying for the means to communicate with their health care providers, despite the fact that the system is intended to make ability to pay irrelevant.  Where it is necessary for effective communication, sign language interpretation should not therefore be viewed as an “ancillary” service.  On the contrary, it is the means by which deaf persons may receive the same quality of medical care as the hearing population.

72 Once it is accepted that effective communication is an indispensable component of the delivery of medical services, it becomes much more difficult to assert that the failure to ensure that deaf persons communicate effectively with their health care providers is not discriminatory. In their effort to persuade this Court otherwise, the respondents and their supporting interveners maintain that s. 15(1) does not oblige governments to implement programs to alleviate disadvantages that exist independently of state action. Adverse effects only arise from benefit programs, they aver, when those programs exacerbate the disparities between the group claiming a s. 15(1) violation and the general population. They assert, in other words, that governments should be entitled to provide benefits to the general population without ensuring that disadvantaged members of society have the resources to take full advantage of those benefits.

 ~  ~   ~  ~

95 I have found that where sign language interpreters are necessary for effective communication in the delivery of medical services, the failure to provide them constitutes a denial of s. 15(1) of the Charter and is not a reasonable limit under s. 1. Section 24(1) of the Charter provides that anyone whose rights under the Charter have been infringed or denied may obtain “such remedy as the court considers appropriate and just in the circumstances”. In the present case, the appropriate and just remedy is to grant a declaration that this failure is unconstitutional and to direct the government of British Columbia to administer the Medical and Health Care Services Act (now the Medicare Protection Act) and the Hospital Insurance Act in a manner consistent with the requirements of s. 15(1) as I have described them.

So I think that should just about take care of that, don't you?

* I would be grateful to anyone who could find me an internet reference to the story.

Creative Writing - Potential Op Ed Piece

UPDATE: The link to providing feedback on Dr. Levin's report.  But beware, as others have noted, it's more or less set up only to promote the positive.  You might you get more bang for your buck with a letter to the Minister or her Deputy.

UPDATE II: This was published in as an op ed piece in the Chronicle Herald on Thursday, May 19, 2011.

It's a good thing I'm not Ralph from The Honeymooners because I'm seriously tempted to threaten to send the Nova Scotia Department of Education "straight to the moon" at the moment.

First, the Department amends its Teacher Assistant Guidelines to eliminate any reference to supporting the teaching of students with special needs or providing "support for instructional program", leaving the only remaining job responsibilities of a TA as "personal care" and "safety/behaviour management support". If you don't have a child with special needs or aren't otherwise involved in the school system, that may not mean much to you. But if you do, it’s not hard to picture exactly what that bodes for the future.

Now, we learn that a review of the Province's public education system is calling for the Province to "consider reducing the number of teaching assistants in special education". Does anyone else see any connection here? Is this the beginning of the end of a proper education for our children?

The Province's newest Teacher Assistant Guidelines provide that "Teacher assistant support should be considered only when the student cannot perform prescribed outcomes independently, as determined by the program planning process" but I have to wonder how even those students will receive support when 1) supporting students who cannot meet prescribed outcomes (independently or not) is most definitely no longer part of a TA's job description and 2) the current recommendation is to cut back on the number of TAs when many would argue we don’t have enough to do the job now.

I find Mr. Levin’s concern about the number of students receiving special education services due to an increase in the "soft" areas of identification, like “students thought to have learning disabilities or behaviour problems” rather odd. If he had spent any time at all in Nova Scotia's schools he would know how difficult it is to obtain any special education services for such students. Students are not considered to have a learning disability simply because a parent or teacher thinks this may be so; services won’t be offered (if at all) until a student has been diagnosed by a qualified psychologist. And, given the wait times to be seen by a school psychologist, students can literally wait years for that type of assessment.

BLOGGING On

We don't have a blogroll around these here parts (for anybody not in the know, that would be a list of blogs that I read and/or recommend posted on the sidebar) - the main reason for that being there are very few Canadian legal-disabilty blogs out there, or at least very few (read none) that I'm aware of.  Which is a large part of what led me to start this endeavour in the first place.

But I digress. 

I've just been introduced to a blog I would like to heartily recommend.  It's called Kilometres for Communication.

What's it all about you ask?

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?

We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

I don't know about you, but I think this is pretty nifty.

When my youngest daughter read this, she said it sounded a lot like the Terry Fox Run. 

I pointed out that although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

So. Company's coming. 

The plan is to leave BC on May 19th and head East.  Which, really, is the only way to go.  It seems to me  that we best be plumping the pillows and airing out the guest house.  Perhaps some fresh cut flowers on the table.  And to really show our Maritime hospitality maybe, just maybe, we could organize an event for Kerr and Skye when they get here?

~ ~ ~ ~ ~

As an aside (and with my apologies to Dave for making it an aside), as long as we're here there's probably one more blog I should throw out there.

Many Most of us have probably heard of Dave Hinsburger, actually he's one of the authors of my latest book reviewed (Sexuality - Your Sons and Daughters with Intellectual Disabilities - a most excellent book, by the way and yes, it's yet another opportunity for me to remind you of the Book Reviews tab at the top of the page) but I, for one, wasn't aware that not only is a Dave a most-excellent resource on many disability issues, he also faces his own challenges. Dave uses a wheelchair to navigate his way through life in Toronto (and the rest of the country) and if you would like to know more about that, he welcomes you to join him, Rolling Around in My Head.

So there you have it, my little (blogging) community post - just trying to do my part to brighten up said community.  Because, despite it's many, many challenges, most days it's a pretty good place to live.

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).