The Best Laid Plans

I was really looking forward to doing a one-day workshop in Bedford in October - October 19th, to be
precise. I say "was" because at the moment it's not looking so good.

You see, there's this great parent advocate in Bedford who offered to host the presentation. Last year, we put on a half-day workshop, but this year she agreed to host the whole shebang:

• Understanding the Legal Options to Support an Adult with an Intellectual Disability;
• Protecting Your Child's Financial Future;
• Government Money Most Families Leave on the Table

We have repeatedly asked people to pre-register with Jocelyn but .... alas, this has not been happening.

So, please, anyone who is interested in attending, do pre-register with Jocelyn

jocelyntingley@gmail.com

And for anyone who wasn't planning on attending but now thinks maybe they should (because you really should*, you know) .... well, you know the drill.

* Of course, it's entirely possible that I could be biased,but, speaking as one family member to another family member, this is information you really need to know.

I Get By ... With a Little Help From My Friends

I came across this on FaceBook* the other day - you will see that it purports to tell us how each of Nova Scotia's three mainstream political parties has promised to address the needs of families of children with special needs in the early years:

Perhaps it's not fair to say *purports*; after all it does qualify itself to "the early years".

Having said that, here are my thoughts:

It looks like the NDP column is missing that latest announcement about "closing institutions, a more individualized approach in terms of care and funding, and a new emphasis on changing mainstream services to better accommodate people with disabilities". Just for the record, that announcement also included rewriting the Incompetent Persons Act**, the Adult Protection Act and the Homes for Special Care Act.

Does anyone else get the impression that the PC are looking towards Charter schools? You've got to like that promise to pass a Tuition Support Program Act but I have to wonder what their "ensure all children are ready to learn" promise actually translates into ... specifics, people, specifics.

It would appear that the Liberals are the only ones to even mention the "Lifespan Needs for Persons with Autism Spectrum Disorder" document (good on them), but then again it's only a promise to *review the recommendations*, not actually implement them.

Who? Me?? Cynical?!

So, does anyone else have any other thoughts on these platforms?

* With thanks to Catherine in the Choice Words group.

** Rewriting the Incompetent Persons Act would be huge - currently Nova Scotia has the dubious distinction of having the most archaic guardianship system in the country. And it wouldn't take a lot of work - the Law Reform Commission offered a new draft Act back in 1995.

Remember What Mama Always Said ...

I generally try not to stray too close to the issue of politics on this blawg; after all, you know what Mama always said about polite dinner table conversation.

BUT.

There is an election coming up, isn't there? Why, yes, I thought I heard something about that.  So when this showed up in m inbox today, I decided to pass it on. Just consider me the messenger.

And please remember what else Mama said ....

Don't Shoot the Messenger

Good afternoon,

I am writing to you from the Nova Scotia Association for Community Living -  a province wide association of family members and others working for the benefit of persons of all ages who have an intellectual disability. We work strategically with other disability rights organizations and, in particular, with Nova Scotia People First. 

 We are encouraged by the recent announcement from the Dexter government regarding the proposed transformation of Services for Persons with Disabilities. The Roadmap  is well worth the read - Choice, Equality and Good Lives in Inclusive Communities. You are also invited to read NSACL`s response to the announcement, which can be found on our website 

NSACL believes that we the people need to be champions of this new direction if indeed we want this to be the reality for persons with disabilities in Nova Scotia. It is a shift in the will of  the government and one of the most promising signs that we Nova Scotians have heard in a very long time. I have attached the Executive Summary which neatly summarizes the 55 page document that perhaps... you could use as a reference when politicians come a knocking at your doorJ  I hope you find this helpful.

 All the best

Jean

The Executive Summary of which the lady speaks can be found here *

But whatever your politics may be, no matter how frustrated you may feel with our current government, let me say this  .... NOW is the time to hold ALL our politicians accountable and responsible.

Election promises always often ring hollow, so all we really have to go by is past performance. And when you're considering past performance, please make sure you compare compare the past performance of EVERY party that seeks your vote.

And make sure to have a nice long chat with the next politician who rings your doorbell or attempts to shake your hand at some community event.

* Trust me, it's a lot shorter than the document at that first link.

Back By Popular Demand

Okay, maybe "demand" isn't quite the word, but I can tell you it sure was popular! And since it is that time of the year again...

Oh yeah, I decided to be extra nice today -you don't even have to click on the link back to the original post.

And yes - yes,I did check all the links and there are still valid. But if anyone knows of any other relevant document that I missed, please include the link in the comments.

Happy Reading

One Stop Shopping

Back to school. Ugh.
Back to school shopping. Again. Ugh.

Although, personally, I would take the shopping any day over actually having to send my kids back and start yet another year (this will be year 15 for my oldest) of "advocacy".

But do not despair. Nice person that I am, I have put together a list of ammunition documents you really should be familiar with as we start another school year.

I've tried to bring some order to the chaos by organizing them by topic but ... well, really, you wouldn't want me to take all the fun away and make it too easy, would you? Just think of it as digging through the bins at Frenchy's ... you never know when you will find a great bargain that fits you just right!

Special Ed in General

Special Education Policy Manual aka "The Bible" (2008)  -That's right, this document should be your Bible for just about any issue you might face with your school, your Board or the Department.

Life Skills: Supporting Student Success (2009) - A little-known document that can be a life-saver when your school tells you that they're very sorry but your child MUST take all these academic courses to get the credits necessary to graduate. It's not their fault; blame the Department.

OR you could just pass over this document, which sets out exactly how "life skill" credits can be and are recognized. Look at that ... a How To Guide for your school!

Increasing Learning Success (2008) - Although written more or less as a how-to guide for reorganizing high school to keep typical students engaged, there are a fair number of ideas discussed that could be very helpful for students with special needs.

Program Planning Process: A Guide for Parents (2006) - This document basically pulls out (and slightly expands upon) the portion of the Special Education Policy Manual (see above) dealing with the program planning process.

"Just how do I go about getting my child an IPP?", you ask. Look no further...
Supporting Student Success: Resource Programming and Services (2006) - Written to provide direction to school boards on the role of resource teachers and their expected competencies and to assist in the development of related policy and procedures, it is also intended to serve as a framework for professional development for resource teachers, classroom teacher and school administrators regarding the resource role in the program planning process. 

In other words, find out just how Resource is suppose to work.

Respect for Diversity: A Planning Resource (2007) - This resource came out of the Minister's Response to Addressing Bullying in Nova Scotian Schools: A Student's Perspective in 2003. (The more things change ... no?)  It's intended to be a resource for students to use to support the advancement and promotion of diversity ... meaning it's to be used a resource to assist in the planning and delivery of a school-wide Respect for Diversity Day. Never heard of such a thing? Don't feel bad ... neither have I!

It just might just be worth checking out, however. Challenge your school and see if they're up to holding their very own (and chances are, very first) Respect for Diversity Day.

Do. Not. Limit. Me.

Wow, what a great video! You tell them, Megan.



So what say you? Let's distribute this far and wide.

Share it on your social networks. Share it with your friends. Show it to your children.

But, most important of all ...

Do. Not. Limit.

Anyone.

H/T to Ashley's Mom at Pipecleaner Dreams

Cross-posted at Free Falling

When Words Fail Me ...

This video speaks for itself.

But the saddest scariest thing is this woman is not alone. She may be the only one brave enough to actually type and deliver such a letter, but I can guarantee you she's not the only one who thinks such thoughts.




Perhaps most of those who do would never suggest that a child, any child, should be euthanized or his "non-retarded body parts" donated to science. But they wouldn't hesitate to express their belief that such children should not be going to their neighbourhood schools, should not be participating in the same extracuricular activities as their "normal" children do; perhaps, even should not be taking up scarce dollars in our healthcare system.

We would like to believe that human beings are inherently good. That, most of the time, if we just give them the chance, they will do the "right thing".  Maybe we're right - maybe most are.

But something like this has to make a parent wonder how many more monsters are hiding in the darkness or behind the annonimity of their keyboards. And shudder at the thought.

H/T to Krista Lettues for the video

Cross-posted at Free Falling

The Rest of the Story ...

I was very honoured to be asked to appear on the Global Morning News show yesterday (July 30, 2013). Many thanks to fellow advocate, Krista Lettues, and Rhonda Brown, executive producer of the Morning News show and a true friend to the disability community.



BUT.

Now why is there always a BUT??

I really wish we could have had more time to get into more detail on these issues. I really wish I had the chance to share the rest of the story.

You see, as part of my preparation for the interview, I went back and reread the original news article which led to this blawg post, which, of course, led to the interview.

But this time was different. This time, I also read the comments following the article. If you haven't read them, please go do so. It's okay, I will wait for you.

Now, if you're here reading this blawg, I am going to assume that there's a very good chance that you were as upset by some of those comments as I was. But after I calmed down a bit lot, it got me thinking. There will always be idiots out there. I know that and you know that.

But some people aren't *idiots* per se; I would say they are more "ignorant", in the true sense of the word.

ig·no·rant 

/ˈignərənt/

Adjective

Lacking knowledge or awareness in general; uneducated or unsophisticated. Lacking knowledge, information, or awareness about something in particular: "ignorant of astronomy".

Yes, ignorant as in simply not knowing. As one simple example, witness the comment of *myop*:

Animals should not be part of the welfare systems resopnsibility at all no matter what reason people have them other that assistance for the blind. 

Now here's a person who has obviously heard of service dogs for the blind. And only dogs for the blind. He or she remains blissfully unaware of all the other service animals out there - hearing dogs, dogs for persons with physical disabilities, dogs for persons with autism, seizure dogs ... I am sure the list goes on. But *myop* is blissfully unaware.

Here's another comment by *myop*:

IT SHOULD ONLY BE USED FOR THE BASIC NECESSITIES OF LIFE

Do you think he/she has any concept that what constitutes the basic necessities of life might vary between a person with no disabilities or chronic health conditions and those who live with these conditions? I guess not.

And you just can't beat the comments of *KannH*:

Correct me if I am wrong but wasn't Welfare created to help people get through bad times until they get back on their feet? When did Welfare become a career? I was on it once for 2 months between college and my first job starting but I have worked full time ever since. I am greatful it was available back then to help me but I would have never wanted to be on it long term...I had way more self respect.

Yes, dear, you are wrong. So consider yourself corrected.

For far too many people welfare is, indeed, a career. Not their chosen career but the only one our society leaves open to them. I would not choose for my daughter to be a social assistance recipient for the rest of her life. Nor would she choose this for herself. In fact, she desperately wants to have a job, live in her own place, be like everyone else her age. But that, quite simply, is just not in the cards. And yet, as hard as this might be to imagine, *KannH*, this doesn't mean she has any less self respect than you.

I could go on, of course, but snark only gets one so far.

So here's the point I really wanted to make.

After reading those comments, I got to wondering just what percentage of the social assistance caseload in Nova Scotia consisted of persons with disabilities. So I did some research and came up with some very interesting facts. In 1996 (the most recent year with available statistics), fully half of the welfare case load in Canada was made up of persons with disabilities. That's right - half of the case load. And in Nova Scotia, that figure was even higher - 57.5% of the people in receipt of social assistance in Nova Scotia had a disability.

It's funny how many people seem to have that visual of a single mom popping out baby after baby after baby to take advantage of the "generous" welfare funding or only see those in receipt of "welfare" as neglecting their children while watching their large screen TVs, doing and/or selling drugs and spending all their tax money on cigarettes. I suppose there are some people like that - there must be, considering that everybody seems to know at least one such person.

But how ironic, considering that over half of the people in receipt of social assistance in Nova Scotia are disabled. The majority are not, in fact, scamming the system. They aren't there to take advantage of the *generous* benefits, because they're too lazy or don't have enough self respect to get out of the system - they are there because they are simply trying to survive and are pretty much literally trapped.

I am thinking it is high time people got a good education in exactly who is receiving their hard-earned tax dollars and exactly who should be subject to mandatory illegal drug testing. Because the other ironic thing I find is that if you mention persons with disabilities to the majority of the people who make those kind of nasty comments, they immediately respond along the lines of "Oh, I am not talking about those people. Those people are okay. I am talking about the majority ...".

The majority you say?

So now you know the rest of the story. Now you know what I wished I had had the chance to say on the Global Morning News show.

Oh well, hopefully there will be a next time ...

She Shoots ...

UPDATE II: If you belong to a disability group, please consider endorsing this letter to Premier Dexter.

UPDATE: Apparently I am not the only one who feels this way.

A second potential op-ed piece for your consideration:

It was with some surprise that I read about the Canadian Centre for Policy Alternatives’ report concerning the effect of the Department of Community Services’ tightened rules for “special need” allowances (“Minister Defends Welfare Rules”, Thursday, July 18).  But my surprise stemmed, not from the fact that the cuts were detrimental, but that it took this long for anyone to start talking about it.

I have a good memory; sometimes even a long one. And I clearly remember, shortly after the Canada Day weekend in 2011, hearing how DCS had backed off a “clandestine plan” to cut coverage for a wide range of medical benefits (including dental care, drugs, and medical supplies) for disabled Nova Scotians living in special care homes, hours before it was to take effect and shortly after the press had sought comment from the Minister on the issue.  I tried to take the news with a grain of salt, as politics being what it is, I tend to be a mite bit cynical, not just of the party in power, but equally of those associated with the opposition.

And yet I wasn’t entirely surprised a mere two months later to learn that the government had, indeed, changed  the regulations  with respect to what was covered under “special needs” allowances.  Couched as making it easier for “clients” to understand what special needs funding they could receive and to ensure funding decisions were consistent and fair province-wide, the Minister insisted that the Department was committed to meeting the needs of those with special needs. Still many were very unhappy.

Those Lazy Hazy Crazy Days of Summer

Wow - my apologies! May 27th - it's hard to believe I've went this long without posting.

But (as usual) I do have a few excuses. Let's see ... where to begin?

• In early June, my husband and I were successful in obtaining guardianship of our oldest daughter. Not only is that, obviously, a significant event for our family but it had added import for me. You see, I've always been quite confident that the a family could use the Nova Scotia Legal Guardianship Kit to successfully apply for guardianship of a high-functioning adult. But now I have proof.
  
  The sample affidavits for a high-functioning adult in the Kit were based on my own daughter, who  at the time was only 16. When the time actually came to apply for guardianship of her (3 years later), I realized that I had to update those affidavits because she had made some significant progress in those three years. And yet, in spite of that progress, the Kit was still more than adequate to found a successful court application.
  
  Can the NS Legal Guardianship Kit be successfully used to obtain guardianship of a high-functioning adult?
  
  
  
  
  
  
  
  
  
  YES. YES IT CAN.
  
  

• In the middle of June, my daughters and I headed out to Manitoba for my niece's wedding. And to meet my brand new now two-year-old grand-niece.  Did we have a nice trip, you ask? Yes, yes we did. A lovely three-week trip it was.

• Ever a sucker for punishment, less than a week after our return home, I wrote rewrote the Bar Admission Examination. And, just for the record, an examination that took one day and was open book when I first wrote it, 20 + years ago is now a two-day exam. And, most definitely, NOT open book.
  
  That's right, I took the first, make that the second, step in that leap of faith we discussed last year. We won't receive our marks for a few months but I must say I do find the whole thing rather exciting. 

So there you have it. A brief synopsis of the first part of my summer.

But never fear, now that I'm back, we will start getting some content moving again on ye olde blawg.

In fact, I already have some ideas floating around my noggin, from discrimination regarding service animals to the right and ability of persons with intellectual disabilities to marry to the import (and importance) of confidentiality agreements when litigation (including human rights matters) is settled.

So stay tuned. I will be here. Unless, of course, this @%$!! heat completely does me in.

And I slowly m-e-l-t ... a-w-a-y ...

The Pros and Cons Power of Guardianship

I've written extensively in the past about the various options open to parents to manage their legal relationship with their adult challenged children.

For some families, a power of attorney and personal directive might be the answer. For other families, it won't. For some families, guardianship will be the only sensible option.

I've also written on some of the reasons why guardianship can be such a useful tool in the right circumstances -  for everything from

• being involved with the adult's medical care and having access to their medical records 

• to managing their assets (finances)  

• to the control it gives in dealing with third parties, such as various government departments and agencies on the adult's behalf.

Although all of the above obviously have great potential to be important in your adult child's life, today I would like to take a closer look at the last item listed above; namely, the control guardianship gives in dealing with third parties, such as various government agencies and departments.

Whether dealing with the Canada Revenue Agency around income tax or issues around the Disability Tax Credit, various financial institutions or financial planners as you manage your child's RDSP or Nova Scotia's own Department of Community Services (DCS) in regard to issues of "work placement" or "placement" of your adult child in a residential care facility, guardianship can be a very useful tool.

But guardianship can be particularly useful with regard to that latter item (dealing with DCS). Not only does having guardianship allow you to direct where your child lives and works, but it will allow you to be involved in ongoing care decisions with respect to such placements.

It's no secret that guardianship has, on more than one occasion, proven very valuable for parents who were initially refused access to information and records concerning their adult child who was living in a residential care facility. Both administrators and social workers often consider concerned parents to be nothing more than “busy bodies”.

However, once a guardianship order is obtained, such parents generally find that both  home administrators and social workers stop trying to do an end run around them. Sometimes, being granted access to information and records is enough. Other times, however, concerned parents with guardianship might decide to move their child to a different living situation where the child will be happier and their ongoing interest and involvement are appreciated and encouraged.

A very powerful tool, no?

And yet, the saga continues.

A Voice in the Wilderness?

This homegrown video was created by a small group of parents with support from the Progress Centre for Early Intervention in an effort to raise awareness for the need for improved services for children with special needs.





Let's hope it's more than just a voice in the wilderness.

Shameful

shame·ful/ˈSHāmfəl/
Adjective
Worthy of or causing shame or disgrace.
Synonyms
disgraceful - ignominious - scandalous - infamous

The word hardly does justice to my thoughts and feelings when I read this earlier today.

The federal government is asking the Supreme Court to overturn a court ruling that would force it to pay the cost of caring for a severely disabled aboriginal teenager living at home. 

The precedent-setting case involves an 18-year-old on the Pictou Landing reserve in Nova Scotia and his principal caregiver mother — who herself suffered a debilitating stroke in 2010. 

Last month the Federal Court ruled that Ottawa was wrong to cover only a fraction of the cost of care for Jeremy Meawasige, who suffers from cerebral palsy and autism, among other disabilities.

Really? Seriously?? I mean, haven't they done enough already?

The federal government really wants to continue fighting this when they've already lost twice in court?

They really want to continue fighting this when the House of Commons unanimously voted in favour of adopting Jordan's Principle in 2005 and federal departments publicly pledged to respect Jordan's Principle in their policies?

They really want to fight this when the Federal Court has found that Ottawa's unlawful failure to cover only $2,200 of the $8,200 a month cost of Jeremy's care leaves his family with no other option than institutionalization and separation from his mother and his community?

~  ~  ~  ~

By the way, want to hear a funny?

A departmental spokeswoman for Aboriginal Affairs said the government continues to make the health and safety of First Nations a priority. 

“The government of Canada will work with the Pictou Landing First Nation for the reimbursement of home-care costs incurred related to Mr. Meawasige’s need, however following careful consideration we have decided to appeal the decision,” Genevieve Guibert said in an e-mail. 

“Canada is committed to working with the community and the province to ensure appropriate supports are in place for the family moving forward.”

Oh, okay, now I get it.

Run along, it's all taken care of now.

Don't you see - the government is all about working with the First Nations to reimburse Jeremy's home care costs.

Which, of course, would completely explain the how and why behind the Canadian government - your and my federal government - spending over $3 million to date just so they won't have to pay the $8,200 per month required to keep Jeremy at home.

Ever wonder what's really going on?

“We think that after these cases go through, the federal government’s programs for first nations people will need a drastic overhaul in order to deliver services equal to what other Canadians receive,” said Kent Elson, a Toronto lawyer who is involved in the policing and special education challenges. 

But if the government wins, recently won powers for first nations to launch human rights complaints would be severely restricted, the acting head of the Canadian Human Rights Commission has said.

“We think this is one of the most important human rights issues this decade,” Mr. Elson added.

And to think that people continue to ask me, with a straight face, nonetheless, why I have never (and could never picture myself) voted Conservative.

Now that's brazen.

This & That

Just a quick note to say that I've updated the "Places To Be" link on the sidebar (about 1/3 of the way down the page if you're not familiar with it).

It's nice to see that the IWK has brought back the EASE program (which has been conspicuously absent for quite some time now) and HACL still has some interesting upcoming workshops [such as "Planning for the Future - Pre-employment", "Planning for the Future - Living Independently in the Community" and "Putting it All Together - Individual Program Plans (IPPs)"] over the next couple of months.

And, of course, I would remiss not to mention my own upcoming workshops in May, one in Halifax (May 13th) and one in Berwick (May 18th) - both will include presentations on "Understanding the Legal Options to Support an Adult with an Intellectual Disability" and "Protecting Your Child's Financial Future".

That's not all, of course - there are a few other interesting upcoming events to be found there as well so be sure to check out the entire list.

~  ~ ~

One other tip to pass on - we've talked in the past about the importance of the Disability Tax Credit and even some information on how to go about applying for it. But I recently came across an article that sets out some of the issues to be aware of with such companies. So you might just want to check that out, too. After all, forewarned is forearmed, right?

~ ~ ~

Almost forgot - for anyone interested, the federal government is conducting a study concerning government programs for persons with disabilities and issues related to saving for the future. You might be eligible to participate if you or an immediate family member is in receipt of the Disability Tax Credit. Participation involves either a 2-hour focus group or a 40-minute telephone interview.

To volunteer for the study, call 1-866-770-4649 and leave a message with your name and telephone number. Someone will call you back to confirm your eligibility for the study.

Oh yeah, did I forget to mention .. you will be paid a $75 honorarium for participating.

So we have that going for us, which is nice.