Your Input is Requested

Apparently, input is being sought to help improve the learning environment in schools.

Nova Scotians are invited to provide input to help improve the learning environment in schools and address student absenteeism. The public can share their views and make submissions to the Minister's Working Committee on Absenteeism and Classroom Climate through an Education Department online survey, beginning June 10. The deadline for submissions is July 10.

The questionnaire can be accessed through the N.S. Department of Education Web site or follow the [direct] link: (English) or (French)

Which I won't say any more than that. It's not like I'm cynical or anything like that. Still, we probably should do it. Just because.

But if that's not enough to make you feel important, the Nova Scotia Government has formed an advisory committee -- the Autism Management Advisory Team (AMAT), with representatives from the Provincial Autism Centre/ Autism Societies and the Departments of Community Services, Education and Health, and in consultation with the Autism Research Centre.

They too would like to know what you think.

AMAT has been asked to produce a report on services for individuals with Autistic Spectrum Disorder (ASD) across the lifespan. This report is to include a description of gaps in services for all age groups with ASD.

For this purpose, AMAT is seeking wide input from individuals with ASD, their families/caregivers, and professionals/ others involved in their care, support and education. We encourage you to complete the survey and have your say (only one copy per person please). AMAT’s goal is to identify key or priority service needs based on your responses. Hopefully our joint efforts will result in better services across the lifespan for children, adults and families impacted by autism/ ASD.

The survey only takes a few moments to complete, so don’t delay – the survey closes on July 3. Please make sure your voice is heard, and thank you for helping to shape the future of autism support services in Nova Scotia.

You can complete that survey online at this link or access the survey link through the Provincial Autism Centre website.

So off you go.

With Thanks to LDAN and the Provincial Autism Centre

Respite ... Take It Where You Can Get It

One nice thing that's come out of the Respite Solution Conferences held last fall are the Family Caregiver Weekly newsletters put out by The Nova Scotia Partnership on Respite, Family Health, and Well-Being that appear in the inbox. On a weekly basis.

In case you know not of what I speak, you can find previous copies (which include topics like Tuition Support Program, Registered Disability Savings Plan, March Break 101, Disability Tax Credit, Child Disability Benefit, Family Pharmacare, ACCESS Entertainment Card, Direct Family Support Program and Preparing for Summer and Summer Camps) here.

And speaking of respite, you really do have to take it when and where you can find it, wouldn't you agree?

I was in the big city today for an appointment and to run some personal and work errands. And being a beautiful day, I decided to do some walking as opposed to driving between my various stops. That combined with a stop at Perks for one of my favourite coffees helped the day fly by.

I stopped in at the Halifax Shopping Centre on the way home to see what I might find to blow my gift card on. The gift card being courtesy of Caregivers NS as part of a lovely Thank You gift (you really can't go wrong with a nice coffee mug or a good supply of chocolate now, can you?) after I spoke on the RDSP at the Caregivers Expo in April.

So I moseyed through the stores (many of which I use to shop at regularly but haven't been to in years) for a while but then decided that really the best way to spend that gift card was to give some tender loving care to my poor tired tootsies. And so it was.

So from me (and my feet), many thanks to Caregivers NS for my first very pedicure. And for their part in a nice little bit of respite woven into an otherwise busy day.

Crash ... and Burn

Which is about how I've been feeling lately.

There is a fair bit going on personally over here, not the least of which includes the battle to have my own child's EA hours reinstated for next year.

Can anybody out there please explain to me the rationale, the justification, for cutting the aide hours of a student in the very year she transitions from Middle to High School? More accurately, not just "cutting" those hours, but eliminating all EA support completely?

This for a student who has had intensive EA support throughout her schooling, for various medical and safety reasons. Not to mention the fact that it just might be useful if we would actually like her to learn something. Silly me, perhaps she has been *cured* and I missed it...

Anyway, the final report from the Nova Scotia Pro Bono Study is now available online. Which you're welcome to take a look at, if it tickles your fancy. Who knows ... someday I may even make it over there to read it myself.

Also of note, a new report from the United States Government Accountability Office, SECLUSIONS AND RESTRAINTS Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers, was released last month. Which might possibly be of interest considering our previous discussion on the use of time out rooms in Nova Scotia and elsewhere.

Have I read either of these, you ask?

Quite honestly, no. Haven't even skimmed them. But with any luck, I will get some time over the summer. Or better yet, how about if a few of you take a look and tell me what you think?

Thanks. I would appreciate it.

Upcoming Upcomings

1) Workshop on the Registered Disability Savings Plan
Monday, June 1, 1:30 to 3:30 p.m.
CNIB auditorium, 6136 Almon Street (at Gladstone Street), Halifax.

The RDSP is a savings plan intended to help persons with severe and prolonged disability save for their long-term financial security. Light refreshments. No charge.

Hosted by ILNS and co-sponsored by Partnership for Access Awareness Nova Scotia and RBC.
____________________________________________
2) Pre-Election Briefing on Issues of Concern for Persons with Disabilities
Wednesday, June 3, 7 – 8:30 p.m.
Bloomfield Centre, Multi-Purpose Room, 2786 Agricola Street, Halifax.

Candidates from Liberal, Conservative and New Democratic Parties in the provincial election. Come to ask the candidates questions about disability issues. Light refreshments.

We have some background information available. Contact Lois Miller at ILNS: Lois.Miller@ilns.ca or by phone: 902-453-0004

Co-hosted by NS LEO, NS Disability Rights Coalition, Canadian Paraplegic Association (NS), MS Society of Canada and ILNS.

The Law on Human Rights and Employment in Nova Scotia: Part II

It's only been six months since I promised a Part II to The Law on Human Rights and Employment post. But it's not like anyone is actually keeping track, right?

Anyway, let's dust off that old post and continue our discussion about human rights in the employment context.

Keeping in mind that we are discussing only the Nova Scotia process. Each province has it's own human rights legislation and there is also a Canadian Human Rights Act which would govern employers in those businesses which have been found to come under federal jurisdiction. And although the basics are the same, the legislation will differ a bit in each jurisdiction.

We already know that in order to claim discrimination under Nova Scotia's Human Rights Act, it is necessary to bring yourself within one of the enumerated grounds under the Act, which we looked at here.

"Discrimination" is defined in sec. 4 of the Act as

... [making] a distinction, whether intentional or not, based on a characteristic, or perceived characteristic ... that has the effect of imposing burdens, obligations or disadvantages on an individual or a class of individuals not imposed on others which withholds or limits access to opportunities, benefits and advantages available to other individuals or classes of individuals in society.

There is a duty on an employer not to discriminate against an employee or potential employee right from the beginning. Thus, for example, there is an onus on the employer to make sure that a job interview is held in an accessible place ie) wheelchair accessible, if necessary.

If a person can show that disability was even one factor that played a small role in the decision not to offer employment or to terminate a person's employment, that person (referred to as "the claimant") will have met the burden of what we legal types like to call a prima facie case .

READ MORE

Legal Links Telephone Service

I just received word that Dalhousie Legal Aid launched a new Legal Links project in February. The service is intended to provide a brief consultation to persons in need of assistance with legal issues related to

• Public/Metro Housing


• Income Assistance


• CPP Disability Appeals


• Debt and Disability Issues


• Human Rights


• Police Complaints


• NS Power Cut-offs

By calling (902) 423-8105, you can be connected to a "senior law student" for some advice, referrals or to schedule a meeting to discuss your circumstances further.

"Senior law students" are in their third and final year at Dalhousie Law School. They work closely with and are very carefully monitored by five staff lawyers.

And never fear, even if you reside outside of Halifax, provided you can make the logistics work, you still can access the services provides by Dalhousie Legal Aid Service.

It's a very good program, both from the point of the public (you) and the students. Trust me, I once was one. Of the students, that is. We just won't say how many years ago that was.

Discrimination By Any Other Name

Remains unacceptable.

And, in this case, the words obscene, disgusting and pathetic also come to mind.

That a funding skerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sad but perhaps not surprising.

But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.

For mother Crystal Hart, it means she may have to say good-bye to her daughter, Priscilla.

"I want her to get the services that she can get," she said while wiping tears from her eyes.

Priscilla Hart has Ritscher-Schinzel Syndrome. She can't speak or eat and needs to be fed through a tube. She requires constant care from a respite worker who looks after Priscilla when her parents go to work.

The Norway House Cree Nation has been paying for those services, which are required by 37 children on the reserve.

However, the band said the money has run out and the services will end May 31.

And this four years after another sick child, Jordan River Anderson, spent the entire five years of his young life in a Winnipeg hospital because when doctors were ready to release him to a medical foster home at age two, provincial and federal government officials argued over who should pay for it. Unable to decide who would even cover the cost of a special shower head he needed, let alone anything more substantial. Jordan never left that hospital and eventually died in February, 2005.

They would like us to think they learned their lesson.

In December, Members of Parliament vowed never to let such a thing happen again and unanimously voted in favour of a private members motion providing that children should come first when it comes to funding disputes and "should receive the same level of service … as children with similar needs living in similar geographic locations".

Aptly called 'Jordan's Principle', it apparently still isn't working so well.

Despite a letter penned by Minister of Health Tony Clement in 2007 professing that "Indian and Northern Affairs Canada is working closely with Health Canada as well as provincial and First Nations partners to ensure that jurisdictional issues do not impact a child's quality of care" and despite the Premier of Manitoba declaring that his province would be the first to implement Jordan's Principle, les enfants terrible rage on.

In an interview with CTV News, Manitoba Health Minister Keri Irvin Ross said the provincial government is not required to pay for the children's care. "These issues are a federal responsibility," she said. "We need to make sure the federal government is held accountable for it, but we are committed to supporting this community and these children."

But not with any funding. Irvin Ross said the provincial government is offering its support by working with the Norway House Cree Nation in its negotiations with Ottawa. Irvin Ross said the fact that the provincial government is at the negotiating table is "new ground", and is a signal of its support for Jordan's Principle. She said the federal government has yet to respond to numerous letters requesting its involvement in finding a solution.

Most, if not all, provinces have some sort of in home funding to assist families with the extraordinary costs associated with raising a child with special needs. In Nova Scotia, for example, it's known as the Direct Family Support Program. In Manitoba, it goes by the name of the Children's Special Services Program.

So why should Aboriginal children with special needs, whatever province they reside in, not have access to the same type of assistance as their non-aboriginal challenged peers? Can anyone say discrimination on the basis of race?

I'm not commenting on whether or not this should be a provincial or federal responsibility given that the federal government has responsibility for "Indians, and Lands reserved for the Indians" by virtue of sec. 90 of the Constitution Act, 1867.

What I am saying is that to deny aboriginal families with special needs children in any province access to the same type of financial assistance that other Canadian families with special needs enjoy sounds an awful like a violation of sec. 15 of the Charter. And of provincial human rights legislation.

Will it take litigation to force the two levels of government to finally get their acts together? And put an end, once and for all, to this needless suffering?

Making Your Vote Count

It's politics as usual in Nova Scotia.

Meaning it's time for another election.

One in five Nova Scotians lives with a disability. According to government figures, there are about 152,000 people aged 15+ who live with a disability in our province. Our votes could make all the difference in the coming election.

What will your MLA do to improve the lives of people who have disabilities in your area?

Check out this guide from the Disability Rights Coalition before the candidates come a'knocking.

Just A Reminder ~ "Adolescent Brain Development: Why Do They Do That?"

Do you ever wonder ... "Why in the world must they act that way? What has happened to my child? Will I ever get them back again?"

I know I have. Fortunately for us then, the next IWK Psychology for You Session will be held on Monday, May 11th.

“Adolescent Brain Development:
Why Do They Do That?”

But what I really wanted to remind you of, and what I often forget that, is that this session, like the others [see the sidebar under the heading "Places To Be -Upcoming Events"] is also available through the Nova Scotia Telehealth Network, a video conferencing communications network that connects health care focused facilities across Nova Scotia.

And can be viewed at the following NSTHN locations:

· South Shore Regional Hospital, Bridgewater
· Yarmouth Regional Hospital
· Valley Regional Hospital, Kentville
· Colchester Regional Hospital, Truro
· Cumberland Regional Health Care Centre, Amherst
· Aberdeen Hospital, New Glasgow
· St. Martha's Regional Hospital, Antigonish
· Cape Breton Regional Hospital, Sydney

Which means you don't have to travel to Halifax to attend. Just in case you would like to stay closer to home. Which is a good thing.

Instead, all you need to do is contact the Telehealth Coordinator via the main switchboard at the location nearest you for more information.

The speaker, by the way, will be Jason Chatman, Ph.D. a IWK Psychologist who has recently taken a position at the Adolescent Centre for Treatment and works with teenagers with behavioural and/or mental health issues who require 24/7 care and their families.

The session will includes a discussion on what happens to the human brain on the path from childhood into adolescence and adulthood and is to help parents understand why moodiness, quickness to anger, risk-taking, miscommunication, fatigue, and other familiar teenage behaviour problems are so common and how to understand, communicate with, and stay connected to their teens.

And previous Psychology for You sessions are now available online and can be viewed by visiting the “Healthy Families” section or the Psychology page within “Care Services” on the IWK website.

So now you know.

Interesting Questions

Update: Mulling over this idea of spending RESP funds only on educational expenses, I went back to Ken Pope to get further clarification.

His response was to suggest that a person would simply spend the funds for educational expenses over a longer period of time, as he believes the limits on how long one has to spend the funds has now been extended now to age 35. And because provincial benefits cover shelter and other costs that would normally be paid for from the RESP there is more to go around.

At the very worst, the RESP would be collapsed and the contributions and income given back to the parent, who would consider whether to roll some of into their RRSP or to receive it, pay tax, and then do things with what’s left.

To which I would add the caveats that I am unsure whether or not the age limits noted by Mr. Pope would vary between the different RESP products that can be purchased or whether this approach would work woth the Nova Scotia government. If anybody has more information on this issue, I would love to hear it.

I mentioned previously that some interesting questions had come out of the RDSP Information Session put on by Human Resources and Skills Development Canada.

The first question dealt with how the provinces would treat the RDSP (both from an asset and income point of view) in regards to such issues as home care and long term care (ie. nursing homes).

And the answer to that, frankly, is that we don't yet know.

Here's what we do know. We know that the Federal Government has exempted the RDSP for the purposes of receiving the Guaranteed Income Supplement (GIS) and Old Age Security (OAS). This means you can still receive money from GIS, OAS and the RDSP without causing any clawbacks.

That's the story on the federal level. Provincially, we know that Nova Scotia has come in line and declared that it will fully exempt the Registered Disability Savings Plan contributions when calculating clients' eligibility for income assistance and that clients will be able to withdraw funds from the Plan without affecting their income assistance payments. But that's income assistance and makes no reference to other provincial government benefits.

So as I said, we still need to determine how the provincial gov't will treat the RDSP (both income and asset-wise) when it comes to benefits such as home care and long term care (ie. nursing homes). And although for many such services may not become issues for some for many years down the road, for others, issues like home care eligibility are relevant right now. And either way, it's still an interesting issue to consider. One that needs an answer.

The second question that came up at the Information Session was how the provincial government might treat a disabled person's income from a Registered Educational Saving Plan (RESP).

I previously posted a bit on the issue of the appropriateness and effectiveness of RESPs for our children with disabilities. At which time I linked to an article by Ken Pope which touches on this issue, at least from the Ontario perspective.

RESP funds should only be used to pay for education-related expenses such as tuition, books and tutors. If a residential or meal plan comprises a component of your child’s program, it is very important that the plan not be paid with RESP funds. Similarly, RESP money should not be used to pay for things that are covered by provincial disability benefits, such as shelter, clothes or food. Separate paperwork should be kept in order, otherwise there may be a deemed overpayment of provincial disability benefits and a surprise claw back of “overpayments” due to simple misapplication of funds for the wrong use.

And although I have not yet queried the Nova Scotia government on their position in this regard, the logic here does make some sense.

I would think, at a minimum, that if a person hoped not to have their provincial disability benefits affected by payments from a RESP, it would certainly help build the case to use the funds only for educational expenses as opposed to daily living expenses. And to keep clear separate paperwork documenting that distinction.


Whether that will, in fact, be good enough and whether we can go beyond that are just two more questions for our provincial government to answer.

'A Journey of 1000 Miles'

So I attended the AVRSB Learning Disability Conference today.

As I already noted, the speaker, Rick Lavoie, has quite an impressive and extensive resume in the field of special education, holding three four degrees in special education and having served as an adjunct professor at numerous universities. He also served as an administrator of residential programs for children with special needs since 1972 and now serves as a consultant on Learning Disabilities to several agencies and organizations.

This they tell you. What they don't tell you is that he has what describes as "moderate to severe ADHD". Not that you (or at least I) could tell, not until he said it. I had noticed that he looked at his watch quite regularly but the fact that he used a wireless microphone, giving him the ability to move around at will, didn't stand out for me. Not until he mentioned it.

His sons also have ADHD. Which didn't really surprise me given that I've often found that the best professional in the field (be it teacher, lawyer, psychologist) is the one who is also a parent of a child (or himself lives) with a disability.

A few years ago (at the same Learning Disabilities Conference, if I recall correctly) I had the pleasure of listening to Dr. B. Duncan McKinlay, a psychologist who has been diagnosed with both ADHD and Tourette's Syndrome. His presentation was entitled "Life's A Twitch" (go check out his website) and it was an absolutely amazing experience to hear his story and insight.

But I digress.

Rick's topic was The Motivation Breakthrough: 6 Secrets to Turning On the Tuned-Out Child. He's a very good speaker and although I might have appreciated a few less anecdotes and a little more substance, it was an interesting and productive day. I took some notes so perhaps at some point I might be able share some of his thoughts on what exactly does (and doesn't) motivate, not just our kids, but all of us.

Did I mention that he's a very good speaker?

One of the first things I noticed was how he was able to connect with both the parents in the audience and the professionals.

And, it was in that regard, that there was something I really wanted to share with you tonight. But first let me say that I am neither a Republican (thank goodness) nor a Democrat (thank goodness again). Although I have been impressed, on occasion, by Sara Palin, when it comes to issues around disability. For example, if you haven't yet seen this video, I would highly recommend it.

But Rick told the story today of how he was asked to write a newspaper piece during this past US Presidential election with his thoughts on Governor Palin's promise to be a champion for "special needs families" because she "knows what they are going through".

He shared with us his response, which he now has posted on his website, and which I found truly amazing.

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.

With great respect and empathy, I must say, “Sorry, Governor, but you don’t.” You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays.”

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” … but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said." (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Go read all of it.

And watch your life unfold before your eyes.

My Apologies ~ Learning Disabilities Conference Day

Talk about short notice. Mea culpa.

But the Annapolis Valley Regional School Boards' Learning Disabilities Conference Day is this week, Saturday, April 25th, to be exact.

You can find more details here but the speaker is Rick Lavoie, M.A., M.Ed.

Rick Lavoie has served as an administrator of residential programs for children with special needs since 1972. He holds three degrees in Special Education and has served as an adjunct professor or visiting lecturer at numerous universities including Syracuse, Harvard, Gallaudet, Manhattanville College, University of Alabama, and Georgetown. His numerous national television appearances include: CBS Morning Show, ABC Evening News, and Disney Channel Presents.

Rick serves as a consultant on Learning Disabilities to several agencies and organizations including Public Broadcasting Service, New York Times, National Center for Learning Disabilities, Girl Scouts of America, Child Magazine, and WETA. He is a member of the Professional Advisory Board of the Learning Disabilities Association of America.

Rick has delivered his message to over 500 thousand parents and professionals throughout North America. He has the distinction of having delivered Keynote Addresses for all three of the major special needs advocacy organizations in the United States (Learning Disabilities Association, Council for Exceptional Children, Children with Attention Deficit Disorder).

I can't seem to find where I saw it but I believe the title of Mr. Lavoie's talk is Unlocking The Key to Motivation, which, if you have a child with a learning disability, might just grab your attention.

Sorry, if it's too late but for more information, or to register, contact: Gail Demmings, Student Services Division Annapolis Valley Regional School Board (902) 538-4638 gail.demmings@avrsb.ednet.ns.ca

Probably sooner rather than later would be good.

As Promised

I attended the RDSP Information Session put on by Human Resources and Social Development Canada in Halifax last week. It was a good session, with the only unanswered questions being those involving some further issues in the provincial jurisdiction, which I hope to clear up soon.

And I think it's a very good thing I went, considering I have been asked by Caregivers NS to speak at the RDSP session in their upcoming Atlantic Caregivers Expo at the Exhibition Park in Halifax.

The Expo is on for two days, May 9 and 10, 2009, and the RDSP presentation will be on the Saturday afternoon, May 8th.

And as promised, I now have the list of presentations which will be offered at the Atlantic Caregivers Expo on May 9 and 10, 2009, at the Exhibition Park in Halifax, NS.

Along with the RDSP session, they include topics such as

• Who is Taking Care?: Accessing Primary Health Care and Support for Dementia Caregivers


• Medication Review Program


• Nova Scotia Pharmacare Programs


• Adult Day Programs


• Demystifying Mental Health Services and Supports


• The ABCs of Long Term Care Insurance


• Care for the Caregiver and


• The Basics of Estate Planning

You can find a complete description of each session and see what other sessions are being offered here.

And don't forget, admission is free.

See you there.