Friday, 31 August 2012

Nepean Disability Expo 2012

People with disability are facing a time of opportunity and real choice as well as some uncertainty about what might be possible or available. This Expo is a place where people with disability, carers, case workers, teachers, workers and students can get the information and connections they need to make decisions about their future options.


The Expo Committee has taken on board the feedback from previous years and integrated your ideas to make the Expo bigger and better than before.

14-15 September 2012
Exhibition Marquee, Penrith Panthers 


EduCare 2012 Expo for Carers: Cardiff (Newcastle)

EDuCARE Carer Support Services
2012 Expo for Carers
Resources and information to:
  • aid and support carers
  • provide professionals with a range of information to assist them in supporting carers
  • provide an opportunity to network and promote Carers Week activities
Thursday 11th October
9.30 am - 3.30 pm
Cardiff Panthers, cnr Pendlebury and Munibung Roads, Cardiff

Cost: free


Thursday, 30 August 2012

Library Thursday: 20 tips from siblings


20 Things Siblings Would Like Parents and Service Providers to Know, by Don Meyer and Patricia Vadasy, an excerpt from their book SibShops, is online at Children with Special Needs on About.com   


Sibshops, by Don Meyer and Patricia Vadasy is available for Down Syndrome NSW members to borrow, from our library.

Our collection of books and DVDs for siblings is listed here.

Wednesday, 29 August 2012

Adult Transition Project: Northcott Disability Services and Charles Sturt University

The Adult Transition Project will include gathering people’s stories of their experiences of transitions. Any person with a childhood-onset disability, who is aged 40-65 years and who lives in New South Wales can contribute a story about a transition. 

People who are carers or guardians of a person with a childhood-onset disability, who is aged 40-65 years and who lives in New South Wales can also contribute a story as a proxy for the person with a disability, with that person’s consent. 

These stories will assist Northcott Disability Services to better understand the types of transition experiences that people with disabilities face and the kinds of supports that might be needed for successful transitions.  The information that will be gathered by the Adult Transition Project will be used to inform future service delivery to people with a childhood onset disability aged 40-65 years.

The project has received ethical approval from the Charles Sturt University Human Research Ethics Committee. Northcott is currently recruiting participants to share their stories of their experiences of transition for this project.

Completion Date: 31 December 2012

Further Information about how to become involved in this project:


Online research survey: parents and caregivers


Researchers from an international collaboration, including the University of Newcastle, are "... interested in your experiences regarding the diagnosis of your child, including your emotional reaction and psychological well-being.

We are also looking at how you told your child/ren about their genetic condition and how they reacted. If you have not yet told your child, we are interested in what your concerns are around telling them about the syndrome.

This is a 20-30 minute questionnaire, conducted as a collaboration among the University of Newcastle, Australia; University of Tel Aviv, Israel; Duke University, USA; and the Children’s Hospital of Philadelphia, USA."


Tuesday, 28 August 2012

Living Life My Way Ambassadors and Champions Program



From NSW Ageing, Disability and Home Care:
On 24 April 2012, the Minister for Disability Services, the Hon. Andrew Constance MP, announced that the NSW Government was setting up the Living Life My Way Ambassadors and Champions Program to raise awareness of person centred approaches in NSW.
Vision for a person centred disability support system

The NSW Government's vision for a person centred disability support system is one in which:
  • People with a disability, their families and carers have choice and control over their support arrangements to suit their needs
  • People with a disability are supported to live a good life by achieving their full potential, living as independently as possible and participating in the community and the economy
  • Families and carers are supported to sustain positive and healthy relationships and pursue their own goals
  • The disability sector is diverse and sustainable, offering quality, person centred and cost effective supports.

About the Living Life My Way Ambassadors and Champions Program

The purpose of this two-year initiative is to raise community awareness and understanding of person centred supports and the Government's policy directions for self directed support and individualised budgets.
The Government is looking for enthusiastic people who are passionate about person centred approaches, have experience in self-managing their supports and are willing to share their experiences and inspire others.
Up to 50 community representatives from a range of backgrounds will each be appointed for 12 months as Ambassadors and Champions.
Recruitment for the first round of Ambassadors and Champions is now open. Applications should be submitted by Friday 21 September 2012.

Monday, 27 August 2012

Local Government elections 8th September: plain English information

Local Government (Council) elections are scheduled for Saturday 8th September across NSW.

The Electoral Commission of NSW has published online a number of information brochures about the elections. enrolment and voting in accessible formats, such as:

Sunday, 26 August 2012

My Great Big Adventure: 'Disability' now on iView

Saturday's episode of My Great Big Adventure on disability (episode 8) is now available online on ABC's iView, until the end of the year:
Duration: 20 mins.

Saturday, 25 August 2012

Weekend reading and viewing 25th - 26th August 2012

Planning for the future, Kate Strohm at Siblings Australia Blog

Don't play us, pay us Kate Larsen Ramp Up 22 Aug 2012


Mom still advocating for her son and others with Down syndrome, Susan Dibble, (Chicago) Daily Herald, 21st August 2012

A day with Poonchie, a short video made about a Japanese girl's day with her sister.  Poonchie dances with Love Junx - remember when they came to Sydney and performed at Buddy Walk 2009?


REMINDER:  My Great Big Adventure: Disability, ABC3, 4.40pm Saturday, August 25

Friday, 24 August 2012

Spectronics Blog: *so* much information!

Brisbane-based Spectronics has been a long time leading Australasian player in the field of educational software and assistive technology designed to meet the needs of learners with special needs. Their blog is a comprehensive resource, made freely available to users, with a wealth of information, categorised under four headings for ease of navigation.  Their bloggers are experts in their fields.


This post (for example) from speech pathologist Katie Lyon, under the 'tools and resources' header looks at a range of apps that can be used to make social stories (some are free, others are low-cost).

And a recent Facebook post gives advance notice of a new service that will be launched soon:
Not long until we release "Spectronics Online"! A subscription-based service giving you access to videos created by our Consultancy team of Greg O'Connor, Cha Cullen, Katie Lyon and Amanda Hartmann. Presenting guides to apps for literacy support, social stories, supporting students with autism and how to access the iPad for students with physical disabilities.

One last reminder : photos for Fathers Day photoblog

Thank you for the beautiful photos you have sent in for our Fathers Day photo post, to be published on 2nd September.  

If you haven't done so yet, there's still time. Email your favourite picture of someone with Down syndrome and their Dad (or father-figure) to blogeditor@dsansw.org.au ( .jpeg files are preferred), by Sunday 26th August

Photos will be published without captions.

Notice of a Special General Meeting and the Annual General Meeting


A Special General Meeting of Down Syndrome New South Wales is scheduled to be held on
Thursday, 13th September 2012 
at 6.30pm
to consider amendments to the Constitution - details are here.


The 2012 Annual General Meeting of Down Syndrome New South Wales is scheduled to be held on 
Sunday 28th October, 2012

Thursday, 23 August 2012

Library Thursday: Children's Book Week and Speech Pathology Week, 2012


It is Children's Book Week here in Australia.  Our library includes a collection of books for children with two themes:

  • Books to explain Down syndrome and intellectual disability to young children
  • Stories featuring characters with Down Syndrome
Down Syndrome NSW members can borrow books from the collection by contacting us at library@dsansw.org.au  

Another way to mark Children's Book Week within your own community is to pass on a selection of books about Down syndrome for children to your local council's librarians, and ask them to include them in their collection for the use of all community members (they welcome suggestions from library users).

It is also Speech Pathology Week in Australia. Speech Pathology Australia is inviting Australians to share their stories about communication in 'speech bubbles' that will together tell 'The Great Australian Communication Story'.  Of course we have a library collection (books and DVDs) about speech, language and communication for people with Down Syndrome, too.

The March 2011 issue of our journal, Voice, had 'Communication' as its theme.  The feature articles are available online here.

Press release from Down Syndrome International


RECENT MEDIA REPORTS OF THE ARREST OF A YOUNG CHILD IN PAKISTAN

Down Syndrome International  is aware of the recent media reports of the arrest of a young child in Pakistan on blasphemy charges, and that a number of the media reports have suggested that she has Down syndrome.
As we continue to look into the matter to ascertain the facts and determine the best course of action, we are of course deeply concerned for the safety and well being of the child. We are in contact with the United Nations Department of Economic and Social Affairs, United Nations Office of the High Commissioner for Human Rights, UNICEF, Amnesty International and the Pakistan Down Syndrome Association to try to ascertain these facts.
Should it be verified that the child has Down syndrome, we will offer our expert advice in collaboration with others including the Government of Pakistan on all issues related to persons with Down syndrome.
Wednesday 22nd August (UK)

Joint Statement from The Global Down Syndrome Foundation, the National Down Syndrome Society, Down Syndrome Education International and the International Down Syndrome Coalition

The Global Down Syndrome Foundation, the National Down Syndrome Society, Down Syndrome Education International and the International Down Syndrome Coalition have joined together in shared concern over the fate of Rifta Masih, a young Pakistani girl reported to have Down syndrome, who allegedly was jailed and faces life-threatening implications.

People with Down syndrome and other intellectual disabilities are a vulnerable population. Although early intervention and inclusion in some nations has meant great gains for many, there are still people with intellectual disabilities who have difficulty processing information or fully understanding the consequences of their actions.

We hope and expect that people from all countries and cultures, including those in the United States, will take this into account in terms of how people with Down syndrome and other intellectual disabilities are handled in police- and security-related matters. We strongly encourage the Pakistani police to ensure the young girl's safety and to allow family members and others who are known and trusted by the girl to stay with her to the extent that detention is necessary for her own protection.

It is very difficult for most people with intellectual disabilities to be taken out of their routine, and sometimes this may trigger agitated or uncontrollable behavior. We hope that this young girl will be able to return to the routine where she is safe and happy. We join others in urging restraint and compassion in this situation.


Tuesday 21st August

Desire and Destination


Arts Activated Conference 2012 - convened by Accessible Arts


30 – 31 October 2012

The Concourse, Sydney
Chatswood NSW

The third Arts Activated Conference presents two full days of presentations, plenary sessions and break-out sessions, performance, social and cultural programs and the Walsh Bay Arts Table 2012. Join us in Sydney's newest arts centre to network, connect and share with the Arts and Disability sectors from across Australia and around the world.





Wednesday, 22 August 2012

Coffee mornings and other gatherings for people with Down Syndrome and their families


To have your event for parents of children, adolescents or adults with Down syndrome advertised in the DS NSW Update, please email details to fiona.place@dsansw.org.au

The deadline for each issue is the 8th of the previous month.


Current listings:


Sutherland Shire and St George Coffee Morning
Monday 10th September, 10am-12pm 
ADHCD Early Childhood Services, level 2, 390 Forest Road, Hurstville, opposite Rivers Store (carpark at rear) Occupational Therapists will discuss toilet training. Please come along for a general catch-up and to welcome new families. Bring morning tea to share, coffee/tea provided. All are welcome - parents, grandparents, bubs, toddlers, parents of school-aged children.
Contact Mary Givney-Clark for further information mob 0402045547



Down Syndrome NSW (Hunter)
Second Thursday of every month,10-12pm
Cafe and Playground area
Wallsend Diggers
5 Tyrrell Street Wallsend
NB: Purchase own drinks/please sign in at the club
For further information, contact:
Joelene Rutherford 0439 606 134 rjd.rutherford@hotmail.com   or Candy Connors - Liaison and Support DS NSW (Hunter) 0418 419 583 candyconnors@bigpond.com

My Time Green Valley - Liverpool area
Morning tea support group for parents/carers of babies and children who have Down syndrome. Player help provided.
Last Friday of every month. 
Share Care Support Centre, 26 Greenvalley Road, Busby
Contact: Melissa Coterill on 9825 1973 or 0418 162 544 mmcotterill@bigpond.com

Riverina - Wagga Wagga district
A local support group for parents from the Wagga Wagga district
Contact: Cathy Manning kev.cath@bigpond.net.au M 0409 662 347

My Time Merrylands
Fridays from 9.30am to 11.30am
(during school terms)
Merryland’s Children Centre, 74 Military Road, Merrylands
Contact: Jane Hayden on 9840 9996 or jane.hayden@holroyd.nsw.gov.au

Nepean/Blue Mountains Morning Tea
When: Second Monday of the month at 10.30am
For more info, contact: Krystle Coburn - 0421 157 907 or krystle.coburn@gmail.com or Hannah Edwards - 0412 026 548 or hannahje79@gmail.com

Dance Concert: Sutherland, 31st August



“Dance Fun” Concert
Sutherland Entertainment Center

7.00 pm Friday 31st August 2012

For more information and tickets contact Justyne: justyne@twinklestars.com.au or 0409 230 567 
It’s a fun filled evening for all to enjoy.


Tuesday, 21 August 2012

Moving towards individualised funding: Consumer Development Fund (NSW ADHC)




NSW Minister for Disability Services, Andrew Constance, last week launched the Consumer Development Fund (CDF) to support people with disability and their families make the transition to a new disability system based on self-directed supports and individualised budgets.
$5 million has been allocated to the fund to prepare for the expansion of individualised funding arrangements.
"We want to ensure that people feel comfortable and confident accessing the services they need which best suits their individual circumstances by the time it is introduced in July 2014," Mr Constance said.
"The Consumer Development Fund will assist people to make the most of the opportunities available to them through individualised budgets."
The fund is an initiative of the Living Life My Way consultations where participants identified the need for support which raises awareness of opportunities, builds a person or family’s skills in developing partnerships and networks as well as their capacity to manage their own disability resources.
CDF will support a wide range of capacity building initiatives for people with disability, families, carers from different backgrounds across the State.
The NSW Council for Intellectual Disability (CID) has been engaged to administer the fund under the direction of an advisory group that will have diverse representation from people with disability, families, carers and consumer bodies. CID has significant leadership and expertise in capacity building initiatives and has been close involved in the Living Life My Way consultation process.
"We look forward to assisting people through this change which will ultimately result in them having more control over their lives," said Ms Aine Healy, Executive Director, NSW Council for Intellectual Disability.
"This may be through forums, creating local groups or networks, training or more creative means."
For more information about the NSW Council for Intellectual Disability visit www.nswcid.org.au.
For information about the Person Centred Approaches call 1800 605 489.

A theatre opportunity for the next NSW school holidays

This could work very well for families of children with Down syndrome too.  We like the idea of the theatre providing a social story.

Autism friendly performance
Theater Refleksions’ Boxy George is an intimate theatre experience designed for children to share in the delight of puppetry with friends, carers and families. The 45-minute performance has been chosen to ensure everyone is able to enjoy the experience in a supportive, friendly, environment.




To help families prepare for the experience, Sydney Opera House will provide a social story online, which takes children step-by-step towards the performance. Check the website closer to show time for this information.

Sydney Opera House
12.30 pm 6 October 2012 (full season 3rd - 13th October)
5–10 year olds
From $29
Bookings (02) 9250 7777
Website


Source: Accessible Arts NSW

Monday, 20 August 2012

My Great Big Adventure: Disability, ABC3, 4.40pm Saturday, August 25

Hosted by ABC3's Kayne Tremills, My Great Big Adventure tackles some of the most pressing issues kids face today, such as bullying, family conflict and everyday stress. 

By sharing real stories from kids and celebrities, the series sends a message that, no matter how difficult the challenge, with the right tools there's always a way to make your own big adventure better. 


My Great Big Adventure:  Disability, ABC3, 4.40pm Saturday, August 25

Approximately 1 in 5 people in Australia are living with a disability. While we know disability can hinder people in certain ways, we can also celebrate the fact that it enhances them in others. Living with a disability is not something to fear or shy away from - amazing potential is present in all of us, no matter what our capabilities! We explore what disability is, what it means for people, and discover the great achievements made by people and groups with disabilities.
In this episode, Kayne hangs out with Tom Green from Dance Academy, and his younger brother Ethan who has Down Syndrome - we get to see what it's like being part of the Green family, and what it means to have a sibling with a disability.
Kayne also meets a couple of incredible elite athletes 14-year-old wheelchair racer Rheed McCracken and paralympic champion Kurt Fearnley. Rheed and Kurt talk about what disability really means to them, and how they've pushed and challenged themselves to achieve their dreams of becoming champions!

Source: www.abc.net.au/abc3/mygreatbigadventure/

6th World Down Syndrome Swimming Championships: Italy, November 2012

6th World Down Syndrome Swimming Championships in Loano, Italy
15th_ 23rd November, 2012

NSW members of team Australia: 
Brendan Foley 
James Lawrence 
Daniel Rumsey 
Lucy Dumitrescu 

Congratulations on your selection, good luck for your training and preparation ... and have a wonderful time in Italy!


The 2nd National Down Syndrome Swimming Championships will be held in NSW in  2013.
Where:  Knox Grammar School Aquatic Centre, Wahroonga NSW
When:   September 28 and 29, 2013
For further Information please email the Secretary, Down Syndrome Swimming NSW inc Sarah Harvey

Saturday, 18 August 2012

Weekend reading and viewing: 18th and 19th August

Proloquo2Go Changes, Aileen Ryan, Key Word Signing and Proloquo2Go (blog)  13th August 2012

Being an Adult with Down Syndrome, Paul Sawka, Canadian Down Syndrome Society - Paul's latest blog post.


Young people with disabilities have something to sayGeorge Taleporos, Ramp Up, 14th August 2012


Overpronation (of the ankle), Adult Down Syndrome Center, 17th August 2012  - on inward rolling of the ankle.


NSW Disability Industry Innovation Awards winners announced, Minister for Disability Services, 14th August 2012


Aukland flashmob  4 1/2 minutes of sheer fun. A hundred young people with disabilities surprised thousands of shoppers at Auckland’s Sylvia Park shopping mall on Saturday 9th June by performing to Lady Gaga’s Born This Way.


11th World Down Syndrome Congress (Capetown, 15th - 17th August) social media:
The main Congress program has now finished, but more material will be posted over the next few days.

Friday, 17 August 2012

Footy fan Brenton lives his dream




When Brenton Ashford-Potter told his mum "I love my life, I'm living my dream", it was music to her ears.


The Woonona woman had the confirmation that all mums craved - that their children were happy.
Brenton has Down syndrome and severe dyspraxia, a disorder affecting his speech.

He also has leaking heart valves, the reminder of open heart surgery he underwent at four months old.
But it is 21-year-old Brenton's abilities that do the talking.

The "footy nut" mentors and coaches primary-aged children, has an orange belt in judo, surfs in his spare time, and has even found time to help out with lighting and sound at a local theatre company.

Interschool equestrian carnival: Camden

Camden High School Inter-school Equestrian Carnival
Saturday 8th September
Biecentennial Park Camden

Includes a Special Needs Ring for students with physical or intellectual disabilities, K - Y12

Entries close Friday 24th August.

Camden High School Inter-school Equestrian Carnival webpage, for further information and links for registration.

11 WDSC, Capetown, Day 2

The second post on the 11th World Down Syndrome Congress (currently proceeding in Capetown) on the Global Down Syndrome Foundation's blog is from Patti McVay. She writes about the differences between the first and third world experiences of people with Down syndrome and their families. The location of the Congress in Africa opens it up to different (and often sobering) perspectives, from countries we do not hear from often. Patti McVay's observations are also reflected in the daily postings on the WDSC Facebook community page from yesterday.



Thursday, 16 August 2012

Library Thursday: Down Syndrome News, August 2012 issue online

The August 2012 issue of Down Syndrome News, published by the (US) National Down Syndrome Congress is now available online.

Contents:
My number one man (written by an adult sibling)
Great expectations: benefits of a prenatal diagnosis
How can a genetic counsellor help me?
North Country Critters and a commitment to self=determination
Self-determination brings a full and rich life
Constipation (written by a paediatrician in a clinic for children with Down syndrome)

Back issues of this excellent magazine are available from the same website.

Correction: Supported Living Fund Applications close Friday 7th September.

In our post of 25th July about the opening of Round 2 applications for the Supported Living Fund we said that applications close on 27th September.  This is the wrong date.

The correct closing date is Friday 7th September 2012.

We apologise for the error.

Buddy Walk - Australia 2012: NSW dates and places

Buddy Walk is Down Syndrome NSW's major annual fundraising event, to be held this year on Sunday 14th and 21st October. 

Buddy Walk is an international walk-a-thon style event aimed at raising funds for and awareness of Down syndrome via sponsorship, media advertising and publicity. There are more than 260 Buddy Walks around the world.

In Australia, walks coincide with Down Syndrome Awareness Week during October in Adelaide, Sydney, Hunter Region, Wagga Wagga, and Melbourne.



Who participates?
All are welcome to this fun community event! Last year more than 5,000 participants and volunteers attended Buddy Walks around Australia, making it the most successful yet. Buddy Walk brings together people with Down syndrome and their invited 'buddies' - everyone from family and friends to teachers, politicians and co-workers - to promote acceptance and inclusion of people with Down syndrome within the community. Participants each create their own web page, and invite their 'buddies' to sponsor their walk by making tax deductible donations to Down Syndrome NSW.

Sydney  Sunday 14th October

Hunter Region  Sunday 21st October

Illawarra Region  Sunday 21st October

Wagga Wagga  Sunday 21st October

Wednesday, 15 August 2012

11th World Down Syndrome Congress: Day 1 begins

The 11th WDSC has just got underway in Capetown - a wonderful series of updates, photos and videos from the pre-conference sessions yesterday were posted on the WDSC Facebook page overnight, and these are amongst the comments that have appeared in the last hour

... Good morning to all of our WDSC followers on Facebook! The 11th World Down Syndrome Congress Plenary Sessions are about to start and we will provide updates, photos and video extracts all day.


... Well over 600 delegates have now arrived and WDSC 2012 is about to start.


.... a dance group from Soweto with drums and singing lead flag bearers with Down syndrome from 40 countries around the world into the hall as a part of the opening ceremony. Then 7 female acapella singers from Bloemfontein perform the official WDSC 2012 song.




Posts from 14th August include the resolutions proposed by people with Down syndrome during the Indaba (meeting of adults with Down syndrome). They address the BIG Five theme of the Congress:

Resolutions - RIGHTS
1. We have the right to say what we think so we need opportunities to speak up.
2. We need to have role models to teach us to be leaders. 
3. We want to have the right to live independently and pay our own bills.
4. We want to have a driver’s license.
5. We want to have self-advocacy groups where we can discuss our own opinions.

Resolutions - SOCIAL PARTICIPATION
1. We have relationships and deal with issues like everyone else. 
2. We want to be respected by our friends, girlfriends or boyfriends – this means making time for us and boyfriends or girlfriends not going out with others.
3. It is our right to choose whom we want to date. We prefer our parents not to interfere.
4. We sometimes find it hard to communicate with new people outside our group and to organise events with our friends.
5. We like the same things as other people – skiing, basketball, swimming, scrapbooking, dancing, acting, yoga, computer games, candlelit dinners and long walks on the beach.

Resolutions - HEALTH
1. We need to do sport and exercise for our health.
2. We need to eat good food, not junk food and don’t do drugs and alcohol.
3. Working and doing your own chores at home keeps you healthy.
4. Family, close friends, boyfriends and girlfriends are important for our health.

Resolutions - EDUCATION
1. It is important to start learning early.
2. We need to learn through playing games.
3. Other people also need to learn how to behave towards people with Down syndrome.
4. Don’t help too much.
5. People should not look down upon us.

Resolutions - EMPLOYMENT
1. We need to earn more money to become independent.
2. People must give people with Down syndrome a chance to prove themselves.
3. Work is for everyone. 
4. Believe in us and we will work hard.
5. We like to work helping other people.

Jackie Softly, from Down Syndrome Western Australia says of the Big Five resolutions:
It makes my heart sing to read these resolutions, and to know they are being developed and put forward at the WDSC by people with Down syndrome is truly wonderful. Those of us who know adults with Down syndrome know these resolutions to be authentic and potent messages that must inform, support and guide us in advocating with and for them.
We could not have said it better - thanks for letting us re-post your response, Jackie.

The best way to keep up is to 'like' the Facebook page , and check in there as you have time. You do not need to have a Facebook account to view the page. Capetown is 8 hours behind Eastern Australian Time.