A dream you dream alone is only a dream. A dream you dream together is reality.
~Yoko Ono

Thursday, June 25, 2009

Have Your Say ~ UN Convention on the Rights of Persons with Disabilities

It seems that everyone is real interested in the thoughts and opinions of those in the disability community lately. Okay, maybe not everyone but at least some folks are interested in what we have to say.

On that note, more good news.

You will recall from our previous discussions that although Canada signed the UN Convention on the Rights of Persons with Disabilities back in March, 2007, we have not yet ratified it. And, as we know, the Convention is not binding on any country that has not ratified it.

And yet, could it really be?

Lo and behold, the federal government is now soliciting invitations for groups and individuals to participate in an online consultation on the ratification of the Convention. It is said that our views will play an important role in informing any measures that may be taken post-ratification at the federal level to further implement the Convention.

The online consultation is to be fully accessible; available in Large Print, Braille, Audio Cassette, Audio CD, e-Text Diskette, e-Text CD, and DAISY upon request. The consultation Web site itself features a simple design to allow easy navigation.

In addition, there are many resources are available on the Web site to help you guide your feedback: instructions on how to fill out the consultation questionnaire, a Frequently Asked Questions section, links to useful resources such as the full text and a plain English guide to the Convention, background materials and more.

To participate in the online consultation, submit your views through the Web site or by email, regular mail, fax or phone.

By email:
consultation@hrsdc-rhdsc.gc.ca

By phone:
819-994-0335 (National Capital Region)
866-203-2426 (toll-free within Canada)
1 800 O-Canada: 1-800-622-6232

TTY: 819-934-6649

By fax:
819-994-8634

By regular mail:
Stakeholder consultation
Office for Disability Issues
C/o Intergovernmental Relations
Human Resources and Skills Development Canada
Bell Building
105 Hôtel de Ville Street
Gatineau, Québec K1A 0J9

But watch that deadline:
All contributions must be received by the Office for Disability Issues by July 31, 2009, midnight, Eastern Daylight Time.

Monday, June 15, 2009

Parent To Parent

It struck me last night that perhaps this should have been my very post on this blawg. Better late than never I suppose ...

In rereading my copy of "Changed By A Child - Companion Notes for Parents of a Child With Disability" (which, by the way, I highly recommend - notice I said rereading), I was once again reminded (as if I could ever really forget) of the importance and strength of the connection between parents of children with special needs.

Many years ago I learned that the absolute best source of information on what resources might potentially be available for my children was another parent. Not a social worker, a doctor or some other professional who is paid to help and support our family but another parent. One who has walked in shoes that fit at least somewhat similarly to my own. And while I lamented (and still do) about how hit and miss that made the process of any particular family ever discovering exactly what resources or programs were out there, I remain awed by how well that network can and does work at times.

On a related note, a large part of what motivated me to sit down and start writing this blawg in the first place was the realization, which also came to me long ago, that parents of children with special needs who also hold a professional degree in some area (be it medicine, education, law or some other profession) are in a unique position to make a difference for our kids.

For example, not only can the parent/lawyer bring a wealth of background knowledge as to what it's really like to live this life and how school boards really operate to their advocacy for a child with special needs, they can also connect with the client/parent at some deep level which can, I think, bring a sense of assurance to that other parent that they are finally dealing with a professional that really 'gets it'. That not just talks the talk but also walks the walk. And it certainly cuts down on the amount of background explaining that the parent/client must do.

Substitute the word teacher, psychologist or doctor for lawyer above and you get the picture.

READ MORE

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

Monday, June 8, 2009

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.

Thursday, June 4, 2009

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.