Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Tuesday, 30 April 2013

Events in May 2013

Estate Planning seminar
Down Syndrome NSW
1st May 2013

Getting Started workshops
My Choice Matters 
Coffs Harbour Thursday 2 May 2013
Dubbo Wednesday 8 May 2013
Liverpool Friday 10 May 2013
Goulburn Thursday 16 May 2013

Movement and Sound Workshop - applications close
Dean Watson and The Australian Chamber Orchestra
3rd May 2013

Rockability concert
Interchange Australia
4th May

Webinar on effective reading and language instruction for children with Down syndrome
Down Syndrome Education International
7th May 2013

Up! Club Coordinator - applications close
Down Syndrome NSW
10th May 2013

After School - What Then? webinar
Family Advocacy
16 May 2013
17 May 2013

Beyond the Square
18th May 2013

Sydney   Tuesday 21st May 2013
Melbourne   Wednesday 29th May
Brisbane   Friday 31st May

Lets get started – webinar about inclusive education
Family Advocacy
29 May 2013

Forum on Intellectual Disability, Mental Health and School Education
For professionals in health, education and mental health
31st May 2013
Kogarah (Sydney)

2013 NSW Disability Industry Innovation Awards - nominations close
National Disability Services
31st May 2013

Funding the NDIS - is a levy the way to go?

Today the national peak body, People with Disability Australia (PWDA) called for bipartisan support to introduce a levy to fund DisabilityCare Australia, the National Disability Insurance Scheme (NDIS).

School-Link, April 2013 issue: mental health and intellectual disability in children and adolescents

The April 2013 edition of The Children’s Hospital at Westmead’s School-Link newsletter (Volume 4, Issue 1) on mental health and intellectual and developmental disability in children and adolescents is now available on the CHW School-Link website.

Highlights include:
  • Better Health Services for People with Intellectual Disability in NSW by Associate Professor David Dossetor
  • Beyond the Walls of the Play Therapy Room Ageing, Disability and Home Care Play Therapy Team
  • Less Heat, More Warmth by Ian Luscombe
  • Getting Students Ready for Life after School by Nicole Ison
  • Every Student, Every School by Melissa Clements
  • The Medicine Cabinet: Mood Stabilisers by Judy Longworth
  • NSW Carer of the Year by Maria Heaton
  • Emotion Based Social Skills Training for Children with Autism Improves Children’s Emotion Skills by Dr Michelle Wong
  • Responsibilities and Rights for Consumers and their Carers and Advocates of People with an Intellectual disability to enable Equity of Access to Health Services in NSW by David Dossetor and the Models of Care Subcommittee of the NSW ACI Disability Network
  • Promoting Resilience by Jodie Caruana
  • Upcoming training 
  • Resources and Readings
You are invited to circulate the link to anyone who may be interested, and encouraged to sign up to the e-list/ to receive an email alert when each issue is published.

Monday, 29 April 2013

This scheme (NDIS) makes business sense

John Della Bosca, Sydney Morning Herald, 29th April 2013

Business Council of Australia chief executive Jennifer Westacott recently asked what the National Disability Insurance Scheme was trying to achieve, and if it would impose a cost we could not afford. The council is behind the program, in assessing a key issue for national productivity and casting judgment on its fiscal prudence.

The Productivity Commission answered the question 18 months ago ...

... PricewaterhouseCoopers found that, with NDIS supports, increased employment participation by people with disability would be an additional 370,000 people by 2050. This would increase gross domestic product by almost $50 billion by 2050, which equates to a further 1.4 per cent contribution to GDP.

... The initial financial cost of phased transition to the NDIS is high because Australia has for decades invested so little and so ineptly in this sizeable group of Australians. For them to become contributors and consumers, they need the investment kick-start of the NDIS. The Business Council needs to come to grips with that.

2nd National Swimming Championship and Novice Challenge (Down Syndrome Down Under Swimming Organisation)

Knox Grammar School Aquatic Centre
Wahroonga (NSW)
September 28 and 29, 2013

The entry form and schedule of events can now be downloaded from the Down Syndrome Down Under Swimming Organisation's web page

Saturday, 27 April 2013

Weekend reading and viewing 27th - 28th April 2013

Waiting for a snowflake to land on my tongue,
Jennifer Crowson. Down Syndrome Research Foundation blog, 19th April 2013
One of the first things I read when learning about having a child with Down syndrome was that he will do everything other children do, it will just take him longer. This was fine, or so I thought …
IHC, 11th April 2013
Janet Dixon recently completed her thesis for her Masters of Education degree (Otago University, New Zealand).  The purpose of this study was to report on the experiences of siblings which have traditionally not been heard. She will be speaking about her work in Wellington. NZ  Amy Baskin

Down Syndrome Association of San Diego, 23rd April 2013
Siblings of people with Down Syndrome talk about their experiences with their brothers and sisters. 7m 35s

10 things teachers should know about Down syndrome
Gillian Marchenko, 25th April 2013
I had two successful parent/teacher conferences this week for my girls with Down syndrome. They are thriving in their school settings! (Their) class settings are perfect for them, although vastly different from one another ... it all comes down to the teacher in the classroom. Teachers can make or break the experience for the child, for the family, for the classroom, and for the whole school, especially when it comes to children with Down syndrome.

Catalyst Dance Masterclass Series 2012
Accessible Arts, released 17th April 2013
The Catalyst Dance Masterclass Series is an extraordinary celebration of inclusive dance practice. In 2012 performers and choreographers from across NSW gathered at Sydney's Carriageworks (Sydney) for a series of developmental workshops. (You might well see someone you know.)

Insight: What's Best for the Child 
SBS One (watch online) first screened Tuesday 23rd April 2013
Discusses how an intellectual disability may affect a parent’s capacity to raise a child. 52m 44s. Link to transcript provided.

Friday, 26 April 2013

Mothers day gallery ... would you like to contribute a photo?

If you'd like to contribute a photo for our Mothers Day gallery, please email it to before Thursday 9th May.

No names or caption will be posted. Just photos of Mums with their sons and daughters who have Down syndrome, that will speak for themselves (of course others can be in the photos too).


Position Vacant: Up! Club Coordinator (Down Syndrome NSW)

Up! Club is a social inclusion project of Down Syndrome NSW that provides a forum for people with Down syndrome from teenagers to adults to participate in inclusive social and recreational activities. This has previously occurred through peer support and a calendar of events with the participation of volunteers and siblings.

Up! Club Fun and Fitness Day, April 2013
We are seeking a facilitator for Up! Club who enjoys working with a variety of people with intellectual disability, is innovative, not afraid to embrace inclusion, thrives on diversity and has the experience and enthusiasm to develop and deliver engaging programs in conjunction with Up! Club members, and members and staff of Down Syndrome NSW.

Down Syndrome NSW is an association of people whose primary aim is to support and promote the interest of all people with Down syndrome in NSW, and their families and carers. The position is a part time one and is offered on a contract basis. The coordinator will report directly to the General Manager and be supported by a Board of Management sub-committee. Some night-time and weekend hours will be required, depending on the program you help develop.

  • To receive an information package, including a detailed job description, please contact Scott Bridges on (02) 9841 4414 or email
Applications close 5 pm 10th May 2013

Thursday, 25 April 2013

Library Shelf

Our Library is currently closed after the relocation of our office,and we are currently conducting a stocktake of the collection.
  • We have a copy of Using Storytelling to Support Children and Adults with Special Needs: Transforming Lives through Telling Tales by Nicola Grove on order. Nicola is an English Speech Therapist and academic. She was involved in initiating the OpenStoryTellers Project, a “social enterprise created to enrich the lives of children, and adults with learning and communication difficulties, using traditional stories and personal narrative.” 

The OpenStoryTellers website is worth a look while we await the arrival of the book.

  • A new edition of the Australian Autism Handbook was launched in Sydney last week, and will be of interest to families whose child is diagnosed with autism in addition to Down syndrome. It is widely available - directly from the publisher, from libraries, ABC shops, Big W and booksellers.

Wednesday, 24 April 2013

NSW Government is backing its kids - other state and territory leaders urged to sign up to ‘Gonski’ reforms.

CDA media release, Tuesday 23 April 2013:

Children with Disability Australia (CDA) welcomes the announcement today from NSW Premier Barry O’Farrell and Prime Minister Julia Gillard that NSW has signed the National Education Reform Agreement. 

CDA urges all state and territory leaders to support the ‘Gonski reforms’ and to deliver better education outcomes for all students. Our leaders must ensure that adequate resourcing will be available to create a more equitable schooling system which has the capacity to meet the needs of all students, including students with disability.Stephanie Gotlib, Executive Officer of CDA said: “Our leaders must put our children’s futures first and unite to support these vital reforms. This is a unique opportunity to impact on the lives of all Australian students and to make an investment in our nation’s future.”

As the peak national body for children and young people with disability, CDA is inundated with reports from its members of discrimination and low expectations for students with disability.Members view a lack of resources, inadequate training of teachers and staff, significant bullying,limited input by allied health professionals and unacceptable use of restrictive practices as the primary areas of concern.

Ms Gotlib said: “It is simply unacceptable that these experiences should be common place for students with disability. They reflect a system in crisis. Reforming the education system is a complex task, but it is absolutely critical for Australia’s future. NSW has taken the first step today. I encourage the remaining leaders to put people above politics and join Premier O’Farrell in signing the agreement. This cannot wait.”

“Education reform for students with disability must be a first order priority for all governments andcannot be left as a residual part of the reform package,” said Ms Gotlib.

Down Syndrome NSW annual event for mothers

Tuesday, 23 April 2013

Research news update #3 for 2013

Click on the title of each item to read the full text:

(US) National Institute for Health’s Down Syndrome Consortium website now online
Down Syndrome Reasearch  and Treatment Foundation Newsflash, April 2013
Since its inception we’ve kept you posted on the NIH’s Down Syndrome Consortium, in which DSRTF participates through our Chief Scientific Officer, Dr. Michael Harpold. Now we’re thrilled to pass along the news that its website has launched. This useful resource is designed to serve as a central portal for addressing research needs, communicating research findings, and accessing resources related to Down syndrome, including the National Down Syndrome Patient Registry expected to launch in July 2013. In the months to come as the site expands, parents and caregivers will find it to be an unparalleled source of reliable, accurate, up-to-date information about DS, carefully curated to support our community.

University of New South Wales awarded NHMRC Partnerships for Better Health grant for work in intellectual disability mental health,
Department of Developmental Disability Neuropsychiatry (UNSW), 10th April 2013
The NHMRC have awarded the UNSW Department of Developmental Disability Neuropsychiatry (3DN) Partnership Project with funding to the value of $1,133,558 over four years for their project, ‘Improving the Mental Health Outcomes of People with Intellectual Disability’

Abbeduto receives grant to  study language acquisition in Fragile X syndrome and Down syndrome
UC Davis Mind Institute, 26th March, 2013
A team of researchers led by UC Davis MIND Institute Director Leonard Abbeduto will investigate the effectiveness of testing procedures to examine the spoken language development of people with fragile X syndrome and people with Down syndrome, through a new five-year, $3 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health.

Kelsey Kaustinen, Drug Discovery News, 26th March 2013
Scientists from Roche, the University of Cantabria and Spain’s Cajal Institute have published their findings on recent work with Down syndrome that highlights a potential new approach to combat the cognitive damage caused by the genetic condition.

Global Down Syndrome Foundation, 20th March 2013
The Linda Crnic Institute for Down Syndrome (has) awarded $1.3 million to 14 inaugural recipients of the Crnic Grand Challenge Grants. The grant recipients were chosen based on the strength of the science and the likelihood the science would lead to improving outcomes for people with Down syndrome

Hope for People with Down Syndrome: RPCI Researcher Awarded Grant to Identify Causative Genes and Therapeutic Strategies for Down Syndrome-Associated Intellectual Disabilities
Dr Y Eugene Yu
Roswell Park Cancer Institute, 14th March 2013
Y. Eugene Yu, PhD, Associate Professor in the Department of Cancer Genetics at Roswell Park Cancer Institute (RPCI), has received a three-year $250,000 grant from The Children’s Guild Foundation to continue his work to identify all the major causative genes for Down syndrome-associated developmental and intellectual disabilities. In 2010, a grant from the foundation established The Children’s Guild Foundation Down Syndrome Research Program at RPCI, enabling Dr. Yu to continue his groundbreaking work.

Biomedical research and Down syndrome
Professor Sue Buckley OB, Roche Global Down Syndrome Advisory Board, 12th March 2013
To what extent should we help people with Down syndrome lead more rewarding and fulfilling lives? My answer to this question is we should help as much as is practically possible, and pharmaceutical interventions are as important as educational ones.

Epilepsy Management in the Disability Sector - Individual & family survey

The Epilepsy Foundation of Victoria has formed a partnership with Flinders University and Bendigo Community Health Services (BCHS) to explore levels of epilepsy knowledge and the level of involvement of people with epilepsy and their family in developing their Epilepsy Management Plan.

Monday, 22 April 2013

Down Syndrome NSW event

Wednesday 1st May 2013,  7 - 9pm
Light Supper included

This Seminar will be led by Jonathan Harris, one of the Directors at Harris Freidman Lawyers. He is an Accredited Business Law Specialist with over 30 years experience in Estate Planning, Business Law and Commercial Property transactions.

Jonathan has been a Director of the Autism Association since 1996, is Chairperson of Woodbury school and is father of three boys, the youngest of whom, Finley, has autism.

The presentation will cover a range of important topics and provide explanations on matters such as:

  • Guardianship concerns 
  • Powers of Attorney
  • Testamentary Trusts and Special Disability Trusts
  • Centrelink issues, including preserving Centrelink pensions and benefits
  • Managing the interests and financial arrangements of all concerned, including spouses and other dependents, and taking account of possible Family Law or Family Provision Act claims
  • Managing family discretionary trusts and a disability trust
  • Using a ‘memorandum of wishes’ to achieve intended outcomes
  • Problems that might arise if there is poor planning

Insight, SBS 1, Tuesday, 8.30 pm

While few people with Down syndrome are parents, that could change as attitudes, expectations and services change. Conversations such as this week's SBS TV Insight episode will become more pressing for some people with Down syndrome and their families:
What's Best For The Child 
This week on Insight, a difficult conversation about how an intellectual disability may affect a parent’s capacity to raise a child.  
We hear from parents and their children about what life is like at home. And we hear from child protection workers about the delicate process of making painstaking assessments and decisions about a parent’s abilities.
Visit the Insight website for more information about the program and to 'meet the guests' for this episode.

Insight SBS One, 8.30 pm, Tuesday 23rd April 2013

Saturday, 20 April 2013

Weekend reading 20th - 21st April 2013

Four Myths About Prenatal Testing
Amy Julia Becker (guest blogger), To the Max, 11th April, 2013
When I was a pregnant 28-year old, I didn’t hesitate as my doctor offered a screening test for various genetic conditions. I figured it couldn’t hurt me or my baby, and that the information the test provided would most likely allow me to check a box off my mental list.

How to talk about the Boston tragedy to children, people with disabilities,
John Langeler KING 5 News (Boston), 16th April 2013
Sound advice following any disaster: We shouldn’t avoid the topic, but sometimes, we should let the person with the disability lead the understanding.

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs, 
Karen Wang, Friendship Circle, 4th April 2013
It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive. It may help to have a response prepared for that day.
Christopher Weaver, Wall Street Journal, 13th April 2013
New prenatal blood tests for genetic abnormalities such as Down syndrome are reshaping care for expectant mothers, but their rapid rollout has raised fears that poorly understood results could lead to confusion among patients and doctors managing high-risk pregnancies.

iPad learning
Beverley Dean, Full Potential (Down Syndrome Scotland Journal), Spring 2013
Our son William is seven and has Down’s syndrome. As parents we had a gut feeling that iPads could help him learn, but we struggled to find suitable apps for him that were simple, easy to use and could be personalised. It was one of those life-changing moments when I looked at my husband, Colin, and said, “We could write something for him!”

Video Modeling 
Dower and Associates, Pinterest
'Dower and Associates, Inc. is 'a multi – disciplinary private practice with a focus in speech/language, education and behavior analysis ... specializ(ing) in working with persons on the Autism Spectrum.' This Pinterest board currently has links to 27 online videos demonstrating video modelling.

Friday, 19 April 2013

Interchange Australia heads to Picton for Road to Rockability documentary

That's 'our' Ethan Campbell and his Mum, Michelle, in the photo:

Macarthur Chronicle, 18th April 2013
Film crews descended on Picton last week as Interchange Australia recruited people with a disability for its Road to Rockability documentary.

The documentary follows Interchange Australia's Rockability concert series, which aims to involve all people, including those with a disability, in live music.

With the next concert scheduled for May 4 at Mittagong RSL Club, Interchange Australia was keen to get filming started on Thursday.

Read more, and see that fabulous photo here from the Macarthur Chronicle

2013 NSW Disability Industry Innovation Awards.

Nominations for the 2013 NSW Disability Industry Innovation Awards are now open until 31st May 2013.

This year a new category has been added. The People’s Choice Award will be nominated by people with disability and/or their families and carers and awarded by NSW Minister for Disability Services, Andrew Constance, for a strong commitment to person centred practices.

Other categories for nomination include: 

  • Innovation in independent living, 
  • Leadership in promoting community engagement and employment opportunities, 
  • Excellence in the use of technology
“Now more than ever, innovation and new ideas will be the driving force in ensuring a successful rollout of the National Disability Insurance Scheme (NDIS),” Mr Constance said. The Innovation Awards were launched last year and are an initiative of the NSW Government in partnership with National Disability Services NSW (NDS).

This year nominations can include volunteers, self nominations and private workers.

The Innovation Awards ceremony will be held in Sydney in September 2013.

For more information visit

Thursday, 18 April 2013

Webinars on effective reading and language instruction for children with Down syndrome

Introducing RLI: effective reading and language instruction for children with Down syndrome
This live online event offers an introduction to Down Syndrome Education International's (DSE) new reading and language intervention for primary/elementary aged children with Down syndrome.

DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome. RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching.

This event is aimed at parents and educators interested in learning more about RLI. It offers an introduction to the new teaching programme, describing how it was designed and evaluated, who it is for, what is involved in delivering it, and what resources are available to support its use.

The webinar lasts 60 minutes, including 20 minutes for live questions from participants.

Dates and times (AEST - Sydney, eg)

7 May 2013  19.00
26 June 2013  23.00
21 October 2013  20.00
21 November 2013 05:00

Additional dates are offered suitable for other time zones. Times in other time zones internationally, and links for registration are given  here

News from ACT Centenary SO Swimming Competition

Special Olympics Australia joined the Centenary of Canberra celebrations by holding the ACT Centenary Special Olympics at the AIS earlier this month. As you might expect, there were many competitors with Down syndrome, and SO has been highlighting the events and participants from around Australia, and from Japan, with photos and stories via their Facebook page - check them out.

Here is a story from the Goulburn Post about Bradley Price's medal winning performance, accompanied by a great action photo of Brad ploughing down the lanes.

And this story is from the Narooma News Online about the local region's swim team,  including Liz Godwin,  Amy Foot, and Cameron Banson.

Wednesday, 17 April 2013

Talk - Down syndrome (-autism dual diagnosis)

For Autism Awareness Month, Jennifer Bekins has begun posting a mini-series of posts about the dual diagnosis of Down syndrome-autism to run over two weeks (from 15th April), at Talk-Down syndrome.  She will be drawing on expertise from her colleagues in the Down syndrome community, as well as her own experience as a speech and language pathologist at a specialist centre in Cincinnati.

Her post for 16th April (today, here in Australia) is the first of a two part interview with Joan Medlen, dietician and writer, whose adult son Andy was diagnosed with DS-Autism as a child.

Epilepsy Management in the Disability Sector - Individual and family survey

With funding from the NDIS Practical Design Fund, the Epilepsy Foundation of Victoria has formed a partnership with Flinders University and Bendigo Community Health Services (BCHS) to explore levels of epilepsy knowledge and the level of involvement of people with epilepsy and their family in developing their Epilepsy Management Plan.

If you live in Australia, are over the age of 18 years with a disability and epilepsy, or you are a family member with a person with a disability and epilepsy of any age, please complete this short 20 minute online survey.

Paid support staff may also complete the survey on behalf of clients over the age of 18 years with their consent. Questions will relate to your knowledge of epilepsy, and your Epilepsy Management Plan (if you have one).

The survey closes 31st July 2013.

Tuesday, 16 April 2013

Girls Guide online leader training on supporting Guides with special needs

If your daughter with Down syndrome could be interested in Girl Guides, you will be interested in this Girl Guides NSW and ACT website, designed to provide information for Guide leaders supporting Guides with disabilities and other special needs.

Screen shot from the website
The website provides information on core training for all guide leaders, information about particular special needs, and video stories about individual Guides, including 11 yr old Stephanie, who has Down syndrome.  Each story is told from the Guide's family's and Guide leader's perspectives.

Screen shot from the website

Accessible Arts Newsletter

The latest Accessible Arts Newsletter (2013, #2), is now available online here.

As always it gives news of artists and arts events, training and opportunities.  This item might be of particular interest to some people with Down syndrome:
Movement and Sound Workshop with Dean Watson and The Australian Chamber OrchestraMovement and dance facilitator Dean Watson and The Australian Chamber Orchestra (ACO) musicians will work with a group of students in years 10 to 12 with disability to inspire the development of movement to classical music.  
Using images and props to inspire conversation, participants will be encouraged to communicate personal experiences and stories to create movement from their dialogue. Students with a physical and/or intellectual disability with experience in movement or dance are encouraged to apply to be apart of the workshop experience. 
 For successful applicants the workshops will be held on Saturday 26 May, and Wednesday 5 June at the ACO studio. Applications close Friday 3 May 2013. 
Further information: AARTS What’s On. (Image: Dean Watson and participants, Don’t DIS my ABILITY, 2009)

Monday, 15 April 2013

Online professional education

Open Future Learning is a specialist online educational facility for training professionals working with people with developmental or intellectual disability.  An impressive list of speakers/presenters (Dave Hingsburger's presence piqued our interest) provides multimedia content in modular formats covering a wide range of topics.

Access is via an organisational account, with fees structured around the number of staff needing access.

Kate Fulton has been appointed to support users and develop Open Future Learning in Australia. Australian customers can contact her via

(This post is for the information of readers, and does not necessarily represent an endorsement by Down Syndrome NSW) 

Saturday, 13 April 2013

Weekend reading and viewing 13th - 14th April 2013

Motivating your child with Down syndrome to talk,
Jennifer Bekins, Talk - Down Syndrome, 8th April 2013
Imagine you are a child with DS. You understand more than people think you do. You get frustrated because it is so difficult to let them know what, how, and why you are feeling a certain way.

Mom, I Hate Having Down syndrome
Valerie Strohl, Friendship Circle, 11th April 2013.
My 14-year old daughter told me this the other day. Honestly, I sat there for a minute because I didn’t know what to say. It wasn’t a big surprise to me because she had implied in the past that she wanted nothing to do with Down Syndrome.

Speech Pathology Australia - Fact Sheets
A series of  Fact Sheets on topics related to speech pathology, being released during April.

30 ideas for 30 days
Paula Kluth,, April 2013
April is Autism Awareness month. We know that the incidence of autism among people with Down syndrome is higher than in the rest of the population, and the co-incidence usually causes significant additional challenges.  Those people and their families need information, support and resources about autism, as well as about Down syndrome.  Paula Kluth's blog during this month is an excellent contribution: For the fourth year in a row, I will be sharing 30 ideas in 30 days during April. I will share ideas from six different books and will feature photos, examples, and teacher-tested tips. I hope you will enjoy the ideas and be able to use them to better support your students and your children.

Three articles from this week's online offerings comment on aspects of the National Disability Insurance Scheme (DisabilityCare Australia) as the July launch approaches:

Why the NDIS is shifting the paradigm and the balance of power
Melissa Sweet, Croakey, 10th April 2013
Jackie Softly (DS Western Australia) says: A really excellent, easy to read and even humorous presentation about the NDIS. If everything else you've ever read about the new National Disability Scheme has left you even more confused, do yourself a favour and read this.

NDIS: rights-based paradigm shift or same old charity?
Heike Fabig, Ramp Up, 11th April 2013
Charities have a place in society, but Heike Fabig believes it's time they were taken out of the disability system.

Will charitable disability services become prey?
Daniel Leighton, Ramp Up, 10th April 2013
The introduction of the National Disability Insurance Scheme should mean growth in quality private sector services for people with disabilities. But Daniel Leighton wonders if a business model geared toward profit will look after some of the most vulnerable people in the community.

Friday, 12 April 2013

Supported Living webinar

Image: Pixabay
Are you thinking about the options for your son or daughter to establish a home of his or her own? Do you wonder how this can happen for people with low to very high support needs? Do you want to know more about how to create a typical home for your son or daughter? 

This Family Advocacy webinar aims to help families to learn about:
  • What we mean by supported living and how it can happen for people with very high support needs
  • Stories of Australians with diverse support needs who are living in their own homes
  • Options for housing and support
  • Taking the first steps toward supported living
Friday, 14th June 2013 

Download the flyer for more information and registration details here.

Thursday, 11 April 2013

'link' disability magazine: now free online

The online edition of link magazine is now available free. Registration and details are here on the link website.  Here is how link describes itself:

link is Australia's leading national cross-disability magazine 

Featuring opinions and perspectives directly from people with a disability, link covers a diverse range of topics including news, issues, art, sport, breakthroughs, travel, health, advocacy, products and people in the disability sector.

Whether you are a person with a disability, carer, health professional, disability organisation, or policy maker, link offers information, advice and insights into life with a disability.

link prides itself on its accessibility with articles written in easy-to-read 'plain English' and printed in large clear font. link is also available on audio cassette

There are 5 editions of link each year, released in April, June, August, October and December.

link is created and published by Inprint Design - an Adelaide-based graphic design company that provides supported employment for people with a range of disabilities.

‘Improving the Mental Health Outcomes of People with Intellectual Disability’:$1M grant awarded to UNSW

Great news from Department of Developmental Disability Neuropsychiatry (3DN) at the University of NSW, yesterday:

The Federal Minister for Health, Hon Tanya Plibersek has announced the outcomes of the National Health & Medical Research Council (NHMRC) Partnerships for Better Health Second Call Grant Round 2012 in which UNSW has been successful.

The NHMRC have awarded the UNSW Department of Developmental Disability Neuropsychiatry (3DN) Partnership Project with funding to the value of $1,133,558 over four years for their project, ‘Improving the Mental Health Outcomes of People with Intellectual Disability’. The total value of the research package is $2,308,058 over the four years, with Partner contributions in-cash and in-kind making up the remainder. The NHMRC Partnerships for Better Health initiative provides funding and support to create new opportunities for researchers and policy makers to work together to define research questions and undertake research and also to interpret and implement the findings.

Wednesday, 10 April 2013

Getting Started: My Choice Matters workshops

My Choice Matters is the $5 million consumer development fund set up by the NSW Government to support people with disability (aged 0-65) and their families in NSW to get the most out of the changes towards self-directed supports and individualised budgets.
In a My Choice Matters workshop, people with disability and family members share how they got started, how they learned stuff from what went right and also sometimes what went wrong. 
You will hear from people who have been managing their supports themselves about how they have taken on more control and exercised more choice.
Workshop dates and venues, May and June 2013:

Coffs Harbour Thursday 2 May 2013
Dubbo Wednesday 8 May 2013
Liverpool Friday 10 May 2013
Goulburn Thursday 16 May 2013

Hornsby Thursday 6 June 2013
Newcastle Thursday 27 June 2013

For further information about the workshops and how to register, visit the My Choice Matters website

Tuesday, 9 April 2013

Calling on Australian Proloquo2Go users aged 6 - 12 yrs

AssistiveWare is looking for Australian families with children in the age range 6 to 12 that are great Proloquo2Go users and would be willing to share their success story with the media.
Selected kids will get access to a secret new version of Proloquo2Go that includes some cool new features specifically designed for this age group and that will not be publicly released until early May.

At this time there are already many stories out there on kids with autism so we thought we would see if we could find some families with kids with Down syndrome, cerebral palsy or other diagnosis so that their voice and that of their families can also be heard in the media.

If you would like to chat some more about this email me (Aileen Ryan) at  -  send me your phone number and best time for you to chat and I can call you, as I am in Australia. Look forward to hearing from you.

'OUR TIME': 48th Annual ASID Conference

6 - 8 November 2013 
Sheraton on the Park


Registration is now open for the 48th Annual Australian Society for Intellectual Disability (ASID) Conference, "OUR TIME"

Take advantage of the early bird discount and register now Early Bird Registrations close 9th August

Call for abstracts is now open - consider submitting an abstract(s) in theme areas outlined. Abstract submission is due by the 4th May
We encourage you to please distribute this call for abstracts as widely as possible.
Keynote speakers include:
  • Robert Strike: President, Self Advocacy Sydney and Director, NSW Council for Intellectual Disability.
  • Sarah Butler: Vice Treasurer, Self Advocacy Sydney.
  • Angela Novak Amado: PhD, University of Minnesota’s Institute on Community Integration.
  • Sue Read: PhD, Professor of Learning Disability Nursing, Head of Research, School of Nursing and Midwifery, Keele University.
  • Eric Emerson: PhD, Professor of Disability & Health Research at the Centre for Disability Research, Lancaster University, UK and Co-Director of the English specialist Public Health Observatory on intellectual disabilities. Professor of Disability Population Health at the Centre for Disability Research and Policy at the University of Sydney. 
  • Keith McVilly: PhD, Associate Professor, Principal Research Fellow, School of Psychology, Deakin University, Australia.
  • Trevor Parmenter: AM PhD, Professor Emeritus in Sydney Medical School, and Honorary Professor Faculty of Education & Social Work and Faculty of Health Sciences, University of Sydney. Adjunct Professor, School of Rural Medicine, University of New England.
  • Michael Wehmeyer PhD, Professor of Special Education; Director, Kansas University Center on Developmental Disabilities; and Associate Director, Beach Center on Disability with expertise in disability and education related issues
More information and links to online registration can be found at the 'Our Time' conference website.

Minister lauds cultural diversity reforms for ageing and disability services

NSW Ageing, Disability and Home Care, 8 April 2013:

The success of cultural diversity reforms implemented by Ageing, Disability and Home Care (ADHC) continues to make a real difference in the lives of people with disability, older people, their families and carers from a culturally and linguistically diverse background across the State, Minister for Ageing and Disability Services Andrew Constance said today.

Monday, 8 April 2013

Dancers captured for exhibition

Dominic Feain
Northern Rivers Echo, 4th April 2013

Alstonville dance group SPRUNG!! is holding a unique photographic exhibition of a recent workshop for dancers with disabilities.

photographer: Katrina Folkwell
In September last year, Alstonville Dance Studio's Susie Whiteman organised the inaugural Integrated Dance Theatre Holiday Workshop with Julie Barratt and Sarah-Vyne Vassallo of Accessible Arts NSW, and the Don't DIS my ABILITY campaign.

Photographed by Katrina Folkwell, with select photos by Sarah Kearney - a young photographer with a disability - the exhibition open(ed on) April 4, at the Ballina Northern Rivers Community Gallery and runs until April 28

... read more here.

Saturday, 6 April 2013

Weekend reading and viewing 6th - 7th April 2013

Scrapheap Adventure Ride 2013 - check out the photos!

Can we get married? 
On ABC iView until 15th April.
UK documentary following a young couple with Down syndrome as they begin planning their wedding. Made in 2012. 38m 48s

iPad Basics 101 – Out of the Box Tips for Successful Implementation.
Katie Lyon, Spectronics. Posted 3rd April 2013.
A very useful (free) webinar. Investigate it whether you are a rank beginner or a relative amateur, and even if you will never use your iPad in a classroom - you will learn something useful!

A dose for Down Syndrome: cough mixture research tackles cognitive function,
The World Today (ABC Radio), 26th March 2013.
A group of researchers at Monash University are investigating whether an ingredient used in cough syrup improves cognitive function ...  for people with Down Syndrome ... Interview with Prof Bob Davis, including comments from Catherine McAlpine, CEO of Down Syndrome Australia.

Does your child with Down syndrome need a sleep study?
Maureen Wallace, She Knows - Parenting, 13th March 2013 
Most parents know the mixed feeling of relief and dread as the first light of morning creeps between the blinds after a sleepless night.Having a child with special needs can be particularly challenging, and sleep issues that are prevalent in children with Down syndrome can be elusive.Knowing what to look for is key. Maybe you’ve already noticed your child sleeping in strange, folded-over positions. Did you chuckle? Post it to Facebook? Marvel at the phenomenon that is low muscle tone? I did. And then I heard a sleep specialist speak to my local Down syndrome association.

A better night's sleep for Down's Syndrome children
itv Player, 13 March 2013
Short UK news report about sleep research in children with Down syndrome - a good overview of  potential problems.

Rosa Monckton, (UK) Mail Online, 31st March 2013
My youngest daughter was being a little loud and over-excited on a commuter train recently. With the clatter of laptops and the annoying ‘tssst tssst’ of not-so-personal stereos filling the carriage, I’m surprised anyone noticed.But notice her someone did. A man got up from his seat, went over to Domenica and told her, quite loudly and aggressively, to be quiet as he was finding it impossible to work. 

Down Syndrome Education Conference videos now available
Videos of the Northeast Down Syndrome Education Conference, held in December2012, are now available online from the Massachusetts Down Syndrome Congress. More than 400 people from 25 states and 6 countries attended, to hear speakers from Down Syndrome Education International. Now, for a limited time, the complete recordings of the conference, including all 6 keynotes and 18 hour-long workshops are available to access online (for a fee).

Parents of disabled want more flexibility to hysterectomy ban,
Rachel Browne, Sydney Morning Herald, 28th March 2013. 
Parents of women with severe disabilities are being forced to take their daughters overseas for hysterectomies after their requests for the procedure were denied in Australia, a leading endocrinologist has told an inquiry into involuntary sterilisation ... The Australian Human Rights Commission recommends that sterilisation of children without their consent be criminalised along with the taking of a disabled child overseas with the intention of having them sterilised.

Friday, 5 April 2013

What is a Speech Pathologist?

First in a series of new Fact Sheets to be released by Speech Pathology AustraliaWhat is a Speech Pathologist?

SPA will release one new Fact Sheet each day, announced via their Facebook page.

Relationship Skills and Private Stuff: Awareness Course

This workshop will cover information through a variety of activities on dating, relationships, intimate affection, consent and safety. Going to a local coffee shop will be a fun activity to reinforce learning about organising and participating in social outings.

This course includes two sessions and is for adults with disability.

27th April and 4th May
Woodstock Community Centre,
Fitzroy St, Burwood NSW
Cost: $155 (Discounts available).

For more information: click here  or download this Registration form

Thursday, 4 April 2013

What an achievement!

In case you missed the link in last weekend's 'reading and viewing' post, here is another article and video interview about Eli Reimer's recent expedition to Mt Everest, that has been very popular online:

15-Year-Old Eli Reimer Becomes First Person with Down Syndrome to Reach Mt. Everest's Base Camp, Maggie Couchlan, (US) People magazine and HLN TV 03/31/2013


CDS workshop for professionals: PATH

Monday 22 and Tuesday 23 April 2013 (2 day workshop)
 West RydeContact: Margaret Carrick, Phone: (02) 9036 3600,  Fax: (02) 9036 3613

Wednesday, 3 April 2013

Dylan Hitchcock: regional NSW fire fighter

The weekend before Easter, one-hundred fire fighters from across the state battled it out in Tumut, for the regional NSW Fire and Rescue championships.

As this short Prime 7 News video shows, Dylan Hitchcock, an honorary member of his local Dorrigo fire brigade was right in there representing his community, and exercising his skills.

The Man Who Planted Trees: access performance at the Opera House

As part of Sydney Opera House’s commitment to improving disability access we are delighted to announce our program now includes a number of inclusive performances for young people with a disability. Our aim is to ensure that all young people and their families, carers and friends have an opportunity to experience the magic of live performances and creative play at Sydney Opera House.

The Man Who Planted Trees
Saturday 6 April, 11am

AUSLAN and Audio Described; recommended for children 7+
Pre-performance touch-tour at 10.30am

Tuesday, 2 April 2013

Scrapheap Adventure Ride 2013: the pictures

Visit the Scrapheap Adventure Ride 2013 Facebook page to see photos from the ride to the back o' Bourke this Easter ... lots of red dirt roads, spectacular colours of the outback, and of course, the bikes and their riders.  Look for more over the next few days.

Thank you the riders, support teams, donors and all supporters!

News from NSW Ageing, Disability and Home Care

11 March 2013
Minister for Ageing and Disability Services, Andrew Constance, today announced the appointment of Michael Woodhouse to the role of Executive Director, Carers, Ageing and Disability Inclusion.
“One of Michael’s many achievements as Executive Director of the Office for Ageing has been the launch of the NSW Ageing Strategy in July last year,” Mr Constance said.
“This new expanded role will see him lead the implementation of the strategy and also focus on greater inclusion for people with disability and carers.” 
Mr Woodhouse has 15 years experience in the health and human services sectors, working with State and Commonwealth Governments and the non-government sector.
He has a law degree and has worked in policy and management positions in NSW and the Northern Territory. 
“I am passionate about making a difference to people who are too often sidelined in our society because too little is understood about their needs and the supports which will help them live the life they want,” Mr Woodhouse said.
“I’m looking forward to working towards better outcomes for carers, people with disability and seniors who contribute so much to the community.” 
Full text of media release

Establishment of University Chair
22 March 2013
Minister for Disability Services Andrew Constance has announced $1.75 million for the establishment of the University Chair in Intellectual Disability and Behaviour Support at the University of NSW. 
The University Chair will lead research in the field of behaviour support and seek to increase the capacity of a wide range of disciplines that work with people with an intellectual disability who have complex needs and challenging behaviours. 
Practice in a broad range of disciplines such as special education, psychology, medicine, social work, health and law will benefit from the work of the University Chair. 
.... The Chair will initially be funded for three years and will work closely with the existing University Chair in Intellectual Disability/Mental Health, also based at the University of NSW and funded under Stronger Together. 
Full text of media release

First Living Life My Way ambassadors and champions announced
25 March 2013
Minister for Disability Services Andrew Constance has announced the first round of Living Life My Way (LLMW) Ambassadors and Champions, who will help raise community awareness about disability reform in NSW. 
"This is an extraordinary group of people, who have truly inspiring stories to share with others," Mr Constance said. 
"All 19 have first-hand experience of living with disability, and they all share the common desire to make a lasting and positive difference in the lives of others. 
Full text of media release

NDIS Practical Design Fund Project: 2 day workshops

 Future by Design has been funded by the NDIS Practical Design Fund Project to deliver a number of 2 day workshops designed for people with disability, families and support workers:

The workshop will provide an update on the NDIS, explore the NDIS as a living system 
and ways to influence and shape your own future within the system, and a process for 
turning good ideas into action.

Newcastle  9-10 April 2013 
Kogarah  11-12 April 2013
Wollongong  15-16 April 2013

Numbers are limited. so booking is essential no later than at least one week before your workshop

Monday, 1 April 2013

Events in April 2013

Playing to their strengths
Down Syndrome NSW event
3rd April 2013

The Man Who Planted Trees
Access Performance, recommended for children 7+
Saturday 6 April, 11am
Sydney Opera House

'It's all about me' workshops  
Disability Support Organisation for the Hunter events
Charlestown   Wednesday 3 April
Maitland   Tuesday, 9 April
Waratah   Wednesday, 10 April

NDIS Practical Design Fund Project: 2 day workshops
Designed for people with disability, families and support workers; delivered by Future by Design
Newcastle  9-10 April 2013 
Kogarah  11-12 April 2013
Wollongong  15-16 April 2013

Resourcing Families event
11 April 2013

Arabic speaking parents network
Coordinated by ADHC
19th April 2013

Puberty, sexuality and relationships: workshop for parents
Family Planning NSW event
22nd April 2013

PATH and Graphic Facilitation: workshop for professionals
Centre for Disability Studies event
University of Sydney, Camperdown
22nd - 23rd April 2013

Working together to build social connections: workshop for people with disabilities and community support workers

Centre for Disability Studies event
University of Sydney, Camperdown
24th April 2013

Sutherland Shire and St George school holiday meet-up
Down Syndrome NSW event
28th April 2013

Working together to build social connections: workshop for people with disabilities and community support workers

The Centre for Disability Studies presents a collaborative workshop for support staff and people with

This workshop will take up the challenge of supporting people to lead lives that includes fulfillment
through being connected with others in their surrounding communities. Support staff are encouraged to invite a person with disability to join them to attend the workshop where together they will explore increased opportunities to socially connect with their local communities. 

Wednesday 24th April 2013

Auditorium (ground floor, accessible from outside courtyard)
Medical Foundation Building, 92-94 Parramatta Road

$160 + GST for staff and $20 + GST per person with disability

Contact for further information, flier and registration:
Margaret Carrick  Phone: (02) 9036 3600 Fax: (02) 9036 3613