Weekend viewing 2-3 June ...

From NewsChannel 8, Portland, 31st May 2012 -  a young man with Down syndrome attains a black belt in Kung Fu:




Look at this great picture gallery from the Penrith Press, to see a little boy with Down syndrome having the time of his life with his local under 5's:

Olympic Torch relay in the UK - runners with and for Down syndrome

Several people with Down syndrome have also been selected as torch bearers throughout Britain - nomination stories, dates of their runs and links to BBC coverage are here on the DSA (England) website.

And Penny Green, Director of the Down's Syndrome Heart Group as launched an awareness campaign as part of her torch run. From Andrew Boys, from Down Syndrome International:

Dear friends

I am forwarding an appeal on behalf of Penny Green of Down’s Heart Group in the UK who has been given the honour of carrying the Olympic Torch on a part of its journey around the UK prior to the 2012 London Olympics. Penny is taking the opportunity to honour people with Down syndrome around the world on what will be a global stage. Please take the time to read below and consider sponsoring this event so that we can include the name of a person with Down syndrome or an advocacy organisation from your country on the t-shirts and in the Press Call afterwards.

Many thanks

Andrew Boys

Down Syndrome International

On July 9th 2012 I have the huge honour of carrying the Olympic Torch as part of the relay around the UK prior to the start of the Games. As I am doing this to honour people with DS around the world, I wanted to include as many of them as possible on the day.

So supporters who are coming along to watch on the day will be wearing t-shirts with a specially designed logo (as above) thanks to Jorge Arnoldson of Buddy Cruise. On the back we will have the names of individuals from around the world (as below) and I would like to invite all of you to have your loved ones name included. I'd also like to have the logos of DS organisations from around the world too.

I am asking for a small donation to cover the cost of t-shirts and printing, but after that any funds will be divided equally between Down's Heart Group, Down Syndrome Nigeria Support and Down Syndrome International (for the Global Outreach programme). So I do hope that many of you will be able to be part of this and help me get lots of names and logos to show the world we are one large worldwide family.

There is daily live coverage of the Torch Relay for those that want to watch me, t-shirts will be available to buy for anyone wanting to wear one on the day to be part of things and of course if anyone can come along to Dunstable on the day, I'd love to see you there (just let me know so you can wear a t-shirt and come along to the breakfast reception afterwards where we will hold a press call!)

To sponsor a name please pledge a minimum donation of £5 and email torch@dhg.org.uk stating the name you want to sponsor, the country and your pledge amount.

To sponsor an organisation logo please pledge a minimum donation of £15 and email torch@dhg.org.uk attaching a jpeg of the logo and include the country and your pledge amount.

I will send a Paypal payment request which will also confirm receipt of your email.

If you are interested in buying t-shirts too, please indicate how many in your email (without obligation). Prices to purchase t-shirts will be posted on Facebook and emailed to you as soon as I can after I have some idea of quantities.

The Facebook event page is here.


The deadline for inclusion of names and logos on Olympic Torch Relay t-shirts is midnight June 10th.

Life Matters, ABC radio Monday 4th

We have heard that sexuality and people with intellectual disability will be the subject of some discussion during Life Matters, broadcast on Monday 4th June, from 9.00 - 10.00 am.


The program is usually available as a podcast after the broadcast.

National Disability Award: nominations open

Nominations for the National Disability Awards are now open, and will close on 20th July 2012


Nomination information is available from the International Day of People with a Disability website


There are ten Award categories in 2012, aligned with areas needing action in the National Disability Strategy – a ten year national plan for improving the lives of people with disability, their families and carers.

1. Minister’s Award for Excellence in Disability Reform – Recognition of the significant achievements of an individual in influencing the disability reform agenda.
2. Emerging Leaders Award – Recognition of an individual aged 15-35 years who is a leader in their community through raising awareness and/or improving outcomes for people with disability.
3. Excellence in Accessible Communities Award – Recognition of an individual or organisation that has made a significant contribution to the community by removing or reducing structural or communication barriers in a community, to help make communities more accessible for people with disability.
4. Excellence in Improving Social Participation Award – Recognition of an individual or organisation that has made a significant contribution in improving the social participation of people with disability, including assisting people with disability to participate in sport, recreation, tourism, the arts and other social and cultural activities.
5. Excellence in Advocacy & Rights Promotion Award – Recognition of an individual or organisation that has made a significant contribution in advocacy and promotion of the rights of people with disability, including helping people with disability speak up for themselves and their rights.
6. Excellence in Improving Employment Opportunities Award – Recognition of an individual or organisation that has made a significant contribution in improving and providing quality employment outcomes for people with disability.
7. Excellence in Improving Personal and Community Support Award – Recognition of an individual or organisation that has made a significant contribution in providing and/or improving personal and community support for people with disability, including helping people with disability be independent by providing more choice, information and control.
8. Excellence in Improving Education Outcomes Award – Recognition of an individual or organisation that has made a significant contribution in improving education outcomes for people with disability of all ages, including helping people with disability to reach their full potential.
9. Excellence in Improving Health Outcomes Award – Recognition of an individual or organisation that has made a significant contribution in improving health outcomes for people with disability, including giving people with disability more support to make informed choices about their healthcare.
10. Yooralla Media Award for Excellence – Recognition of media coverage that accurately, positively and sensitively portrays the achievements of people with disability and the many issues they face.  Note: assessment for this Award is undertaken separately by Yooralla.

Shave a Bunny - one week to go !

It's just one week today until the Big Shave occurs on The Footy Show ... and donations have reached $18,619 !

Follow and share the fun at http://shaveabunny.com.au

Thank you all so much.

2013 Calendar - thanks

Thank you everyone for all the photos sent through for inclusion in the 2013 edition of the Down Syndrome NSW Calendar.

Submissions for the 2013 Calendar have now CLOSED. We can’t wait to see the finished product!

Kind regards,

Hanna Wawryczuk

Library Thursday: Australian libraries promotion and a new revew

A short promotional video to remind Australians in the National year of Reading that Australia's libraries are places of knowledge, culture, community and wonder. Everyone is welcome and most things are free. 


Did you know that you can order items from the NSW State Library through your local public library, at very low cost? You then collect them from and return them to the local library.


Your local library will probably also welcome suggestions for additions to its collection - they want to include items that local residents want to read/view.  It's a great way to make information about people with Down syndrome widely available in your community. 

A new and thoughtful review of Jan Gothard's book, Greater Expectations, published in 2011, was published by the Australian Review of Public Affairs this week. Greater Expectations is available for loan to members from our library.

The Down Syndrome NSW library is one of our major members' assets - check out the collection here, and arrange loans in person, by phone (9841 4411) or email library@dsansw.org.au   

New drama class: Marian St Theatre, Killara

Drama for Young People with an Intellectual Disability (For 14 - 25 year olds)
Where: Marian Street Theatre, Downstairs (Killara)
When: MONDAYS 4pm. The next term begins on Monday 30 July
Length: 1.5 hours
Fee: $100 per term or $180 per semester (15 weeks)

A drama class for 12 young people aged 14-25 with an intellectual disability. Participating with others in fun inclusive drama exercises and impro games gives young people an outlet for their creative expression, builds confidence and develops communication skills. The course will culminate in a short performance for family and friends at the year's end.

Tutor Sher Kearney is experienced with youth with an intellectual disability and works regularly with North Sydney Council's Page to Stage program. 

Please contact Marian Street Theatre for Young People at info@mstyp.org.au or call us on 9498 7671 for further information.

Networks, teams and circles of support: seminar

Family members, friends and allies of a person with an intellectual disability who are thinking about developing, creating or enhancing the personal support network of a person with an intellectual disability or creating a circle of support to promote opportunities and relationships are invited to attend this seminar.

1.30 - 4.30 p.m.

Saturday 30th June 2012

University of Sydney, Faculty of Health Sciences

Cumberland Campus Room F126

75 East St, Lidcombe

Registration: $40.00

This day will focus on the experiences of families participating in a network or circle or team of support to enable a family member with an intellectual disability to plan and experience the good life. The presentations and discussion will be of particular interest to families who are dealing with similar issues and these families are warmly invited to attend. Other allies and people supporting families in developing networks also welcome to join us.

For more information contact Michelle Donelly on 0423 986 386 or 07 5506 9413


Registration: contact Margaret Carrick at the Centre for Disabiity Studies for a registration form:

Phone:           (02) 9036 3600

Email:            margaret.carrick@sydney.edu.au

Child care vacancies, Bondi, 2012 and 2013

A Down Syndrome NSW member has asked us to pass on this information:

Small non-profit community child care centre in Bondi has spots available from July 2012 for children with special needs in the group 2 - 5 years. 

In September 2012 and February 2013 there will also be spots available in the group 0 - 2 years. 

The centre has experience with children with Down Syndrome. 

For more information, please call 0422 522 940 or email impulsconsultancy@gmail.com

Disaclaimer: As always, this notice is provided for the information of members only, and is not necessarily an endorsement of the centre. If you wish to discuss it with a DS NSW staff member, call the Parent Support Team on 9841 4401.

Mothers Weekend 2012

Mothers' Weekend 2012

Solar Springs Health Retreat

96 Osborne Ave, Bundanoon

29th June -1st July 2012

Cost: $300.00 (Please note this event is subsidised).

Arrival from 12:00 noon Friday. Room access from 2:30pm

Check out by 11.00am but continued access to programs until 4:00pm

___________________________________________________

Weekend Inclusions

• 2 nights’ accommodation. All rooms access a shared bathroom.
• All meals including Friday and Sunday lunches.
• Access to gym and aquatic centre (including pool, spa, sauna, steam room)
• Access to daily supervised fitness programs and bush walks in the National Park

 Weekend Program – Caring for the Carer

• Friday Night Workshop, DS NSW
• Saturday – Staying Healthy Body and Mind
• Sunday – Carer Networking

 Optional activities - must be pre-booked with Solar Springs.

• Body Care and Pampering (at your own expense)
• Visit Solar Springs website for options including prices.

__________________________________________________

All welcome but priority will be given to mothers who did not attend last year. Places are strictly limited.

Bookings will only be taken by phone from 10am on 
Wednesday 6th June 2012  
Thursday 7th June

- earlier bookings will not be taken.

(leave a message if the line is busy)

Bookings and payments must be finalised by 20th June 2012.

Please contact Judy Davidson or Lynn Bailey at Down Syndrome NSW on (02) 9841 4401

Mental health and intellectual disability: child psychology seminar

The Children's Hospital Westmead School-Link team (Jodie Caruana and Hebah Saleh) are guest presenting for the Child Psychology Seminar Series on the topic of mental health and intellectual disability:

Monday 3rd June

3-5pm

Lorimer Dods Lecture Theatre, Education Centre (Level 4)

The Children's Hospital at Westmead

By the end of this presentation participants will have:

1. A fuller understanding of the literature on mental health and intellectual disability of children and adolescents.

2. Identified current interventions for this population.

3. Identified Prevention Promotion and Early Intervention Programs (PPEI) suitable for this population.

4. A better understanding of the pathways to care for this population.

5. A knowledge of the relevant sources of professional development on this topic.

Cost (including GST): $20; $10 Full-time students with student ID

Please see the flyer on the School Link website for more information.

Research Rights Conference: Disability Inclusion Change

Disability Inclusive Research Collaboration Conference (DIRCC)

Research Rights: Disability Inclusion Change 
13-14 June 2012 
University of Sydney

The conference is being organised by a group which includes organisations of and for people with disability, and universities and their research centres.

A series of workshops will be run across the two days where participants will hear how people with disability have been actively engaged in planning, doing research and disseminating findings. All workshops will be interactive and aimed at participants learning about specific research strategies that have proved to be inclusive.


Workshop presenters will:

1. Overview the projects that they have been involved with either as people with disability or as co-researchers with people with disability.
   
2. Facilitate a series of activities where participants will learn how to make research more inclusive and accessible for and with people with disability.

For information on speakers, program details, content, the tiered pricing structure, and registration, visit the conference website.

Weekend reading 26th - 27th May

In case we haven't provided enough reading material this week, here is a little more for the weekend ....

NZ's first Scout leader with Down syndrome

Why do we have parallel worlds? (Kathy Snow, Disability is Natural)

4th National Disability Advocacy Conference – Presentations (April 2012)

Transition to Retirement Pilot evaluation report 


10 signs in the classroom suggesting a child may benefit from occupational therapy (this paediatric therapy practice is located in Chicago, but the 10 signs will apply anywhere.)

Image © Zuzazuz | Dreamstime.com

Coeliac disease and Down syndrome: some current information resources

Coeliac disease (US spelling is 'celiac') is much more common in people with Down syndrome than in the population at large.

May is Celiac Awareness Month in the US.  To mark it this year, dietician Joan Medlen has published a two page fact sheet,  Celiac Disaease Facts for People with Down Syndrome as part of her Wellness Walk Talk range, available to be freely downloaded from her Down Syndrome Nutrition website.

Nine Years? Already? is Joan's account of her son Andy's diagnosis of Celiac disease published on her Practical Wisdom blog.

Down syndrome and coeliac disease - a tricky combination, by physicians Jodie Porter and Andrew Day was published in our quarterly journal, Voice, in June 2011. It includes information from families of a number of people with Down syndrome and coeliac disease.

Coeliac NSW and ACT is holding its 2012 Gluten Free Expo on Friday 24 and Saturday 25 August at Sydney Showground, Sydney Olympic Park. Admission is free, everyone is welcome.

Risky Business dementia conference: Diana Kerr

Diana Kerr, a world-renowned expert on night-time care and disability and dementia, and the author of several books on these topics, will be a keynote speaker at the Risky Business conference in Sydney next month. Ms Kerr is very experienced in identifying and meeting the needs of people with Down syndrome and dementia, and training professionals who care for them.

Diana Kerr, a world-renowned expert on night-time care and disability and dementia, and the author of several books on these topics, will be a keynote speaker at the Risky Business conference in Sydney next month. Ms Kerr is very experienced in identifying and meeting the needs of people with Down syndrome and dementia, and training professionals who care for them.

An overview of the event from the conference website:

Risky Business: Facing up to dementia will consider the future we are shaping for people with dementia. The International Dementia Partnership of The Dementia Centre, HammondCare and the Dementia Services Development Centre, University of Stirling will host this conference at Darling Harbour, Sydney Australia on 28-29 June 2012.

The conference will address Risk from everyone’s point of view; from the risks people with dementia choose to take in their lives, to the challenges of building and delivering services that provide choice and therapeutic benefits, to the legislative and policy context that both seek to protect and deny certain freedoms.

The conference will bring together delegates from across the globe, all with a passion to improve the lives of people with dementia. The conference is for everyone involved in supporting people with dementia and their carers.

Registration is now open.

National Museum of Australia: programs for adults with a disabiity

The National Museum of Australia (in Canberra) is offering a new art workshop program for adults with a disability that explores the exhibitions and themes in the Museum with art and creative crafts.  These regular workshops are facilitated by artist Ali Aedy.

Remaining dates for 2012:

 Fridays 1 June, 3 August, 7 September and 2 November 

1–2.30pm
Cost: $20 per workshop, $10 for Friends of the Museum.

See the schedule here for more information on each workshop.

'My boy is going to high school, and I'm terrified'

Mia Freedman's website MamaMia has a very large and broad readership - congratulations to Sam Paior from Adelaide, on her article published there yesterday, about her excitement and fears as her 12 year old, Ben, prepares for high school next year.  It has generated a lot of comment - most of it encouraging, all of it thoughtful:


Ben is twelve, going on seventeen. He is hairy, smelly, eats more than I can afford, and likes to laze around on his bed, watching YouTube videos and listening to music. He also whinges when I tell him to practise his bass guitar, but then plays for hours at a time. He regularly walks in the house with the mud dribbling off his soccer boots onto my (inevitably) recently vacuumed hallway.

He goes to our local primary school, in Grade six, but soon enough, it will be time for high school. He’s excited about the prospect. We’ve looked at a few schools together, but the one he loves is the one I went to, as well as his Nana, Great-Grandma and Great-Great-Grandfather. I suspect he’ll be the first of the fifth generation at the school. The principal told me he thought Ben would be “an asset to the school”. He’ll also be the first with Down syndrome.

He’s not scared at all. I’m terrified ...

... read on here for Sam's article, and the comments.

Special Olympics re-opens in Central Western NSW

From the Central Western Daily, good news for people with intellectual disabilities looking for sporting activities and opportunities in the Central West of NSW:

The central west branch of Special Olympics NSW is back in business and last Sunday held an open day in a bid to boost numbers ahead of the next World Games in Los Angeles in 2015.

Special Olympics central west region has been out of action for the past 12 months but with the help of Orange City Council, which has donated close to $3500 for equipment and uniforms, the organisation is back and looking for athletes.


.... read Nick McGrath's full report, Ready to take on the world, here.

Dysphagia workshops for professionals

The Centre for Disability Studies is hosting two workshops for professionals, presented by visting dysphagia expert Prof Justine Joan Sheppard, from the Department of Biobehavioral Sciences, Teachers College, Columbia University, New York

Sydney - Tuesday 12 June 2012
Brisbane - Monday 18 June 2012
Melbourne - date to be confirmed
DDS/DMSS Certification Workshop:
Dysphagia Screening Assessment for Children and Adults with Developmental Disability


Sydney - Wednesday 13 June 2012
Brisbane - Tuesday 19 June 2012
Melbourne - date to be confirmed
The Patient Profile for Swallowing and Feeding Function:
This is a new workshop that has been developed since the last visit by Professor Sheppard in 2010 designed to look at advanced issues in adults and children with intellectual / developmental disabilities.

For flyers, registration and detailed information, contact CDS: 
The Centre for Disability Studies  
(02) 9036 3600
Mail: Level 1 Medical Foundation Building-K25, 92-94 Parramatta Road, Camperdown, 2050.
Fax (02) 9036 3613 
email: cds@cds.org.au