Address details

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

Tuesday, 31 May 2011

Key Word Sign Group Monthly Workshop (Hastings district - Wauchope)

Come along and join teachers, parents, grandparents, teacher’s aide, friends, therapists etc to our FREE key word signing group.

5.30pm to 7pm Wednesday 15th June 2011

3 Enterprise Place, Wauchope
(off Bago Road industrial area)

Everyone is welcome and please feel free to pass on this information. We have lots of fun, it is easy to learn – we play games, speak and sign, sign and play and it doesn’t matter if you know 1 sign or 30 or 100 you will learn about 20 – 30 new words every meeting or get to practice some forgotten signs.

Please email/ phone/ text Julie Langeveld if you are interested in coming along to our meetings and RSVP for numbers - all materials supplied.

Contact details: or 0402 729 319

Family Advocacy workshops: Let's get started

Do you have a son or daughter with developmental disability who will be starting school in the next couple of years or has recently started school?

Are you interested in them going to a mainstream school — an ordinary class with children of their own age?

This  Family Advocacy workshop aims to help families start planning a positive future and looking at what is needed to achieve an inclusive education. It is especially relevant for families of children preparing for school or in their early school years. Practical tips, strategies and ideas will be shared.

•  Belrose 28 June

•  Kingsford 29 June

•  Mittagong 30 June

•  South Hurstville 1 July

Family Advocacy flyer and registration information

Monday, 30 May 2011

Is your son or daughter with Down syndrome finishing school this year?

If your son or daughter is in Year 12, and finishing school this year, you should have been offered information about post-school programs and choices in your area, and have been offered assitance in making the transition. 

Transition Support
Support Teachers (Transition) (DET) and Transition Officers (Catholic schools) assist with the planning process for students with disabilities moving from school to post-school settings. These students may be enrolled in special schools, support classes in regular schools or in regular classes.

National Disability Coordination Officer Program (NDCO)
Provides information, coordination and referral services to assist students with a disability transition from school into post-school education, training and employment options. The NDCO program works with services to enhance supports and opportunities within the local region for people with a disability.
Northcott and NDCO poster

The process usually works very well at local levels, and is usually implemented well before this stage of Year 12.  However, we have recently heard from some parents who have not yet been offered the information they need evne when their child is enrolled in a special education class or school.

If you have not yet had access to this information you should approach your transition support teacher through your school, or your local NDCO soon. Click here for contact details for NDCO's throughout NSW.

School leaver "expos" are one useful strategy for giving families access to a lot of information and local options. They will usually be advertised through your school and other local services.

Information about  the two NSW government funded post-school programs for school leavers with disabilities - Transition to Work and Community Participation -  is available from the Ageing, Disability and Home Care website: look under the 'for individuals, families and carers' menu, in 'support for people with a disability', then 'for school leavers'. You can access all documentation for both programs, and download lists of service providers in each region. Links and contacts are also provided for further information directly from ADHC.

Family Advocacy runs information sessions for families about both Transition to Work and Community Participation , and about how they can be managed by families, from time to time, across NSW.

NSW needs an NDIS: delayed report on services released

The NSW Government has released a report by Pricewaterhouse Coopers into disability services that they say argues the case for a National Disability Insurance Scheme. Alexamandra Smith, writing in the Sydney Morning Herald today reports that Report reveals burden on carers to hit crisis point:

... The Disability Minister, Andrew Constance, said the report demonstrated the ''enormity of the challenge'' ahead. ''What we are seeing is families being put in crisis situations … some 70 families last year had to make the heart-wrenching decision to take the support for their loved ones out of their family unit,'' he said.

Mr Constance said he would ''campaign aggressively'' for a national overhaul of disability insurance, which would cover the cost of care and medical treatment for people with a disability.

The Productivity Commission in February released a draft report proposing the overhaul of disability insurance in Australia.

''We have to be honest about this. The state system is broken. It isn't meeting the needs of families, carers and people with disability across this state,'' Mr Constance said." ... read the full report online here

Saturday, 28 May 2011

An unanticipated love .....

My life so far is a series of personal stories published online by SMITH magazine. This one has the simple byline 'Fred's brother' ...

I never thought that my younger brother Fred, who sports permanently crooked eyeglasses, speaks with difficult to understand sounds and requires assistance with daily living, would be involved with a significant other: a partner, someone to relieve his not quietly fitting into this world.

In 1957, Mom and Dad authorized New York State to look after Fred at the age of four. He is now 57... read on here to see how Fred's brother's eyes were opened, and what he saw.
SMITH Magazine describes itself as "... a home for storytelling. We believe everyone has a story, and everyone should have a place to tell it."

Friday, 27 May 2011

'Follow by email' added

We've just added the new 'Follow by email' button to our right hand column (just under the Down Syndrome NSW logo).  Add your email address here for an email to be sent directly to you each time a post is added.

You'll be right up to date!

Students with Complex Needs: Who are these students? What are their Learning Needs?

10th June, 2011 – 8.30am to 3.30pm
Ourimbah Campus – Newcastle University, Brush Road, Ourimbah NSW 2258

A one day Workshop with Professor Barry Carpenter

Professor Barry Carpenter is Associate Director at the Specialist Schools and Academies Trust (SSAT), and a Fellow at the University of Oxford. He has been instrumental in raising awareness of children with complex learning difficulties, who require more sophisticated pedagogy to meet their potential.

He has over 30 years experience in special education, and established the Centre for Special Education at Westminster College, Oxford. Barry was awarded the OBE by the Queen in 2001, for services to children with special educational needs.

Specialist staff and educators of students with special needs in both mainstream schools and special education school facilities will benefit from this focussed workshop with Professor Barry Carpenter whose expertise and advice is respected internationally.

Registration for:

All NSW DET staff must Register their attendance at My PL@DET - Course No. NR01690.
NSW DET Schools contact: Daniel Hayes, Principal - North Gosford Learning Centre: phone 02 4323 2800

NSW Health Staff and Non-government Schools contact :
Helen Astolfi - School Link Coordinator, Northern Sydney Central Coast Health phone: 02 4304 7878

Source: Disability Education and Employment News No. 7, Vol 7.

Thursday, 26 May 2011

A SIBS art project

26 - 29 May 2011
Chrissie Cotter Gallery
Pidcock St, Camperdown
(nr corner Parramatta Rd and Mallet St)

Showcases the work of the many siblings involved with the Pathways Early Intervention Service.

Library Thursday: Water Under Water - a new Australian novel

Water Under Water, Peter Rix, Random House, 2011

A novel about a father-son relationship, in which the son is a young man with Down syndrome. This new book is due to be launched on 5th June in Sydney. We have not had time to review it yet, but will do so shortly.

The book is for general release through mainstream outlets, but Peter Rix is particularly interested in how families of people with Down syndrome respond to it. He would love to hear your thoughts and comments via the Water Under Water Facebook page, where you will find an opportunity to RSVP to an invitation to the launch, and two short videos in which Peter Rix talks about the book.

Library copies will be available for loan to Down Syndrome NSW members from Monday 6th June, following the launch.

Adam and Beau turn 21

Many of our members and readers have followed the adventures of identical twins, Adam and Beau Polley, from the mid-north coast of NSW over the years.  Last weekend they celebrated their 21st birthday - congratulations Adam and Beau!

Polleys party

by Alex Druce

Two fantastic young men marked a major milestone on the weekend.

Charity Creek identical twins Adam and Beau Polley celebrated their 21st birthday with 50 family and friends at the Wingham Services Club on Sunday, reflecting on what have been extraordinary lives so far.

Adam and Beau were born with Trisomy 21 Down Syndrome.

They are one of only a few known sets of [identical] twins in Australia with Down Syndrome, so when they were born there was much interest in the community about the special pair. But this interest was matched by a great level of community support – something Narelle is extremely grateful for.

“In the whole 21 years we’ve never had a bad experience – people have been fantastic in Wingham.”

Although Narelle knew she was having twins, it was a shock to discover her new born twins were born with the chromosome abnormality.

“It’s been a challenge but the rewards have outdone this challenge. They are just so loving and happy and carefree.”

Adam and Beau’s primary school years were spent mostly at Manning Gardens with a short stint at Wingham Public School which they thoroughly enjoyed.

The twins currently live with mum Narelle and dad John on the family farm at Charity Creek. They also have two older brothers Josh and Shaun, and a sister Simone.

Both lads are presently going to Breakthru Employment to learn living skills and seek part-time work.

Adam is currently doing work experience at McGrath’s Meats in Taree, and they are very impressed with the way he works. He has previously worked for Ron Crossingham Plumbing.

Beau is currently doing work experience at Coles Wingham and there is a possibility of him getting some part time work in the butcher section. Both twins have previously worked for McDonalds at Taree South.

Beau and Adam are also a great source of help on the Polley family farm.

“They are unbelievable workers,” mum Narelle said.

“People are really amazed at how much they do. They can do most work on the farm, even the milking unassisted. They soon tell you if things are not done right, there are no short cuts with them - it must be done properly.

Narelle said the boys are keen to move into to town to live on their own.

“But they want to take their mule, ute and the cows too!” she said.

Narelle said she felt extremely proud when friends and workmates of Adam and Beau spoke about them on Sunday.

“Everyone who has worked with the lads, including their carers, Tafe teachers, employers, have been amazed at their good manners, knowledge and abilities,” she said.

“They are dedicated to working hard and doing their best at all times.”

Reprinted with permission from the Wingham Chronicle

Wednesday, 25 May 2011

In memoriam: Kathi Beck 1957 - 2011

We are very sad to have to let our members and readers know that our librarian, Kathi Beck, died on Monday 23rd May 2011.

Kathi will be most sadly missed by her husband Rob Grieve, her children William, Jeremy and Amy, and by her many friends and colleagues.

Kathi was a co-editor of this blog, contributing posts about our library collection.

Our thoughts are with her family.

Tuesday, 24 May 2011

Down Syndrome Australia Inc – national representation of interests

Down Syndrome Australia Inc was legally incorprated on 1st April as a national organisation representing the interests of people with Down syndrome and their families. Down Syndrome NSW President, Chris Pollock and CEO, Steve Clarke attended the first Down Syndrome Australia board meeting in Melbourne on 4th and 5th May, along with representatives from every Australian state and territory. That meeting was more than 10 years in the making.

Down Syndrome Australia will build strong strategies on its more informal network predecessor’s efforts to advocate strongly for groundbreaking developments such as a National Disability Insurance Scheme and the Better Start initiative.

Angus Graham, Head of Investor Sales at ANZ has been appointed Chairman and Dr Pollock has been appointed Treasurer. Catherine McAlpine, Executive Officer of Down Syndrome Victoria has been appointed part-time CEO of Down Syndrome Australia Inc.

Monday, 23 May 2011

Freedom Wheels

The Freedom Wheels customised bike program is a joint undertaking by TADNSW (Technical Aid to the Disabled) and Amway’s One by One Foundation, giving many children with disabilities the opportunity to ride a bike for the first time.

TADNSW assesses each child at a bike “clinic” and writes a specification for a bike that will meet their exact needs. This may include stabiliser wheels, postural supports, belts, footcups, towbars and modified handlebars.

Freedom Wheels is available to any child with a disability. Clients do not need to undergo a means test.

A new Freedom Wheels brochure includes a wonderful photo of Jarrod Nicholas, who has Down syndrome, riding his first bike earlier this year.

For more information, visit the TAD Australia website.

Behaviour Intervention Service: Symposium #12 for families, carers and clinicians

People Driving Change
9 am - 5 pm Thursday 9th June 2011
Northcott, Parramatta

Keynote address:  Gerard O'Dwyer and Maria Short - Mentoring, meaning and the Up, Up and Away Program 

Other speakers include: David Coyne, ADHC; Carolyn d'Mello and Mitch Zammit, ADHC; Sam Arnold, CDS; Tom Tutton, ASPECT

Cost: $50

To book, contact BIS Events:  or 9841 9323

Down Syndrome National Swimming Championships - Novice time requirement removed

The first Australian National Down Syndrome Swimming Championships will be held in September 2011 in Noosa.

Now the good news is that the entry times for the Novice races have been removed, making it more worthwhile for new swimmers to participate.

If anyone from NSW is thinking of going and they want more information, please email Sarah Harvey at

Information about the National Championships and about the Sixth International Championships scheduled for November 2012 in Italy is now available on the Down Syndrome Down Under Swimming Organisation’s website

Sunday, 22 May 2011

Baby Sign Playtime!

A fun play session where parents and babies can learn baby signs through songs, stories and games.

For babies with and without Down syndrome.

•  $150 per term, with eight sessions lasting 45 minutes

•  beginning in July 2011 in various Hills district locations.

For further information or enrolment, please contact: Carolyn on 0431 514 787 or

Saturday, 21 May 2011

News service on all matters disability

People with Disability Australia now provides a daily news service online, through its website. Articles are provided from Australia media. Click on the ‘daily media roundup’ button on the home page:

Wednesday, 18 May 2011

Special Olympics World Summer Games – Athens

Our very best wishes to all of the 131 athletes representing Australia at the Special Olympics World Summer Games in Athens 25th June – 4th July 2011. The Games website is very well organized, and includes a team page identifying each athlete, their sport, and their State.

We especially congratulate these athletes from NSW, who have Down syndrome, and wish them a good Games:

Softball: Andrew Mujunen, Melissa Eustace

Gymnastics: Tracie Sammut, Ashley Kuhle, Christopher Bunton, Rhianna Sinclair, Joshua Gray

Golf: Alexander Hayes

Tennis: Nick Lorenz

Please let us know if we have missed anyone!

The website also gives several options for following the team’s progress on Facebook, Twitter, You Tube, sending ‘herograms’ and to sign up for a news feed. There is no excuse for not keeping up! To start with the team, click here

Pride of Australia Medal nomination - Paul Phelan building love for sport

Congratulations to Paul Phelan (Matthew's Dad) on his voluntary work with Special Olympics, and the nomination it has earned him for a Pride of Australia Medal.
He was interviewed  with Amanda Keller by John Barker of the Daily Telegraph for the article published today:

Like many parents across Australia, Paul Phelan loves being involved in his son's sporting pursuits - but he might have reason to feel a little prouder than most.

As chairman of Special Olympics Australia Sydney Upper North Shore branch, his volunteer duties range far and wide.

After his second son was born with Down syndrome nine years ago, Mr Phelan thought "there wasn't much around that Matthew could do sports-wise".

Now there are 280 registered Special Olympians on the Upper North Shore "and then there are the children from the special needs school, about 300-400, who we see every week," the softly spoken father of three said.

Even as a volunteer who goes beyond the call of duty, Mr Phelan is staggered by how many "good people" are willing to help out. "We have a lot of volunteers ... and they just come down because they want to do this," he said.

It's people like Mr Phelan and all Special Olympic volunteers who TV and radio personality Amanda Keller dips her lid to in admiration.

The Talkin' 'Bout Your Generation team leader nominated Mr Phelan for a Community Spirit Medal in this year's Pride of Australia initiative.

"For people who work full-time and then devote their time to the good of the community as Paul does, well, it's hats off to him," Keller said.

She sees not only the benefit of Mr Phelan's work for Matthew but also the "transformations in the families of kids with special needs".

"Thank God people like Paul muck in," Keller said. "That's what Pride of Australia is about - to thank the people who muck in and to show the community's gratitude."

Monday, 16 May 2011

An encouraging high school story

This news article from The Tennessean reports the unexpected outcomes from a mainstream high school experience of two teenagers with Down syndrome in Ohio.  The story also comments on broader social events driving such positive experiences.

Ensuring a ‘Better Start’ from 1st of July

From 1 July this year, families of eligible children diagnosed with Down syndrome, cerebral palsy, Fragile X syndrome, or a moderate or greater vision or hearing impairment, including deaf blindness, will have access to early intervention funding and new Medicare items under the Australian Governments’s Better Start for Children with Disability initiative.

Eligible children will be able to be registered to access early intervention funding of up to $12,000 (to a maximum of $6,000 per financial year).The funding will be able to be used to pay for early intervention services including speech pathology, audiology, occupational therapy, physiotherapy, psychology and orthoptics.

In NSW, Carers NSW will deliver a dedicated Better Start Registration and Information Service, to provide the eligible families and carers with information about eligibility, entitlement to supports and services in their local area.

Note that the initiative provides funding for early intervention and other services – recipients then choose how and where to spend the funding, with registered providers. If your child already receives an early intervention service, you should still register to receive Better Start for Children with Disability funding.

The Australian Government has made clear to Down Syndrome Australia that this is new funding which can be used to purchase services on top of those parents are currently receiving. Where parents are currently accessing free or subsidised services they will be able to continue to do so.

Down Syndrome NSW CEO Steve Clarke commented that the Association’s members are looking forward to the start of Better Start, and are keen to ensure it delivers real results for families.

‘Following the introduction of the ‘Helping Children with Autism’ package three years ago this is a program Down Syndrome NSW and our members have been pushing hard for. Former Disabilities Secretary Bill Shorten, Minister Jenny Macklin and Prime Minister Gillard are to be commended for delivering on this election promise.”

‘Down Syndrome Australia and the other national disability-specific bodies representing families of children eligible for Better Start have joined together under the banner ‘First Step Alliance’ .

First Step Alliance has and will continue to act as a voice for eligible families. DSA’s Catherine McAlpine is also acting as a voice and an ear to the Australian Government as a member of the Better Start Expert Reference Group.’

Through these avenues, Down Syndrome NSW will be working to ensure this new program fulfills its obvious potential.”

From 1 July 2011, parents and carers will be able to contact Carers NSW to register their child for Better Start funding via Freecall 1800 242 636.

However, Down Syndrome NSW has been informed that with an estimated 6000 families eligible from 1st July delays are to be expected. Initially, it is likely priority will be given to older children eg 4 yrs+ , and those with an urgent need for services – families with younger children already accessing early intervention are advised to wait until the initial rush has passed.

If you have any general questions or comments about Better Start you can forward these to the Parent Support Team at Down Syndrome NSW (on or ph 9841 4401) who will collate inquiries, get responses, and inform families of those responses.

Sunday, 15 May 2011

Zumba fun fund-raiser - Medowie (Hunter)

One of the DS NSW (Hunter) mums is celebrating her birthday soon and is hosting a birthday party for herself - you are invited!

Thursday 26th May
Zumba Class - double length class

$15 -  a fundraiser for the Down Syndrome NSW
Class will be run by Glow Sticks (provided)
Dress code: fluro (or white if no fluro)

All welcome, but bookings essential due to size of venue.

Contact: Ali Binskin 0430 299 172

Sunday stuff - a run and a TV show

Did you remember that it was the Sydney Half-Marathon today?  You can still support runners fundraising for Down syndrome NSW and ACT DSA through their Everyday Hero pages:
Our thanks to those who ran -  and those who donated.

And a reminder that ABC TV's Compass tonight will feature the Merry Makers in Dancing to Disney.
10 pm, ABC 1.

Disability and faith - event for Catholic families

Made in God’s image
an evening for parents of children with a disability and their families and friends.

7.00 - 8.30 pm, Tuesday, 7th June 2011
Our Lady of Fatima Catholic Parish Hall and Church
89 Shaw St, Kingsgrove

Trish and Glenn Mowbray from Canberra will present the evening – they are very experienced in the area of disability and faith. Glenn is a member of the Australian Catholic Disability Council and Trish is employed by the Australian Catholic Bishops Conference as its Disability Projects Officer. They have three children of their own with Down syndrome and will focus on nurturing and supporting your child’s faith and how the Church can encourage and celebrate the participation and spirituality of children with disability.

Further information: Mary Joseph
Life, Marriage and Family Centre
Catholic Archdiocese of Sydney
T: 02 9390 5283

Saturday, 14 May 2011

MInister: NSW will have strongest client focussed disability and ageing system by 2015

The O'Farrell Government intends to build the strongest client-focussed service arrangements for ageing and disability in the country during its first term in office.

The Minister for Disability and Minister for Ageing, Andrew Constance, addressed the 2011 NSW HACC and Community Care Conference in Sydney on 2nd May, and said: "The NSW Government is committed to expanding and enhancing the community care and disability service system, and I am personally committed to ensuring that the second phase of Stronger Together is even stronger and more effective for people with a disability, their families and carers."

Stronger Together is the Government's 10 year strategy to expand disability services throughout NSW. The O'Farrell Government is pushing ahead with its agenda of person centred approaches and packages of individualised funding to give control back to individuals and their families. Mr Constance said the Government was also committed to improving outcomes and opportunities for people in rural and regional areas and to ensuring that services met the needs of those from culturally and linguistically diverse backgrounds.

"With more people accessing community care services it is important that the service system is person-centred and enables everyone to reach their full potential. I want to see more tangible benefits for individuals, their carers, their families and local communities," he said.

Source: Media release, 2 May 2011

Information on health and people with Down syndrome for GPs

The April 2011 issue (Vol 40, (4) 177 - 256)) of Australian Family Physician has a focus on disability and general practice.  The relevant articles include Australians with Down syndrome : Health matters  by Dr Jane Tracy. The publication is aimed at a professional, rather than lay audience, but it could be useful to alert your GP to this and some of the other articles on disability for reference.  

Australian Family Physician is the official journal of the Royal Australian College of General Practitioners.

Nominations for the 2011 National Disability Awards are now open

The National Disability Awards recognise people with disability who have achieved something remarkable or made a significant contribution to their community, and people or groups within the community who have contributed to the disability sector or improved access and inclusion.

Does someone outstanding spring to mind? Entering is easy. Download a nomination form and nomination guidelines at  or call 1800 440 385 to order hard copies.

The 2011 Award categories are:

§ Minister’s Lifelong Achievement Award recognises people who have advanced the rights of people with disability over a prolonged period of time.

§ Young Disability Challenge Award recognises young people aged 12-25 years who have advanced the rights of people with disability.

§ Business Award recognises organisations that have improved access to employment, or created increased employment opportunities for people with disability.

§ Local Government Award recognises work in a community that provides opportunities for full inclusion of people with disability.

§ Social Inclusion Award recognises schools, universities, employment and training providers and advocacy services who have enabled equal participation of people with disability in a range of areas in life.

§ Inclusive and Accessible Communities Award recognises work by developers, builders and others in the building sector to create accessible buildings or facilities for people with disability.

§ Health and Wellbeing Award recognises health and wellbeing services that are creating equal access for people with disability.

Nominations close 5pm AEST Thursday 30 June 2011.

The 2011 National Disability Award categories are aligned with the National Disability Strategy priority areas, a 10 year strategy to improve the lives of people with disability, their families and carers.

The National Disability Awards are part of the Australian Government’s celebration of International Day of People with Disability. Show your support for the Awards and International Day of People with Disability by becoming a Facebook fan at  or following along on Twitter at

Wednesday, 11 May 2011

Rawcus flashmob

Here's a great way to start the day - video of a flashmob,  involving people with Down syndrome and other disabilities.

"400 people with and without disabilities descend on Federation Square, Melbourne, for the Rawcus flashmob.

Part of the City of Port Phillip YouTube Project supported by the Victorian Department of Human Services, Southern Region. The flashmob was conceived by Rawcus. Directed by Kate Sulan (Rawcus) and Clair Korobacz (One Step At a Time, Like This).  Project management by Rosemary Joy."

Make sure you watch right up to the last to see how much the "mob" enjoyed it. Might it spread?

Growing older with Down syndrome: for parents and family carers, 30th July 2011

Billy Schulz set a visual riddle for his blog readers to guess his age
(photo used with permission, © 2011 Mary de Wit, in2Wit, LLC)

Growing older with Down syndrome - an information/support event for parents and family carers of people with Down syndrome 35 years and over.  Families have raised these questions to be addressed:

How might growing older impact on our son or daughter?
What do we need to know?
What support might we need, and where will we fi nd it?
Just how common is dementia? What should we look for?

9.30 am - 2.00 pm,  Saturday 30th July 2011
(morning tea and lunch will be provided)

Rydges Hotel, 116-118 James Ruse Drive, ROSEHILL

There is no charge for this event, but booking is essential for catering.
Note: this is a repeat of the event held on 26th February at North Sydney

Contact Down Syndrome NSW on 9841 4411 or 9841 4407, or email for further information or to register.

Tuesday, 10 May 2011

Dancing to Disney: ABC 1 Sunday 15th May

From rehearsals to the big day, Compass follows Australia's much loved dance troupe, The Merry Makers as they rehearse and make their way to Disneyland in California for their first overseas performance,  Nearly all the troupe - up to 70 dancers - plus their parents, carers and helpers are going on the tour. Many are calling it "an adventure of a lifetime".  Compass follows their inspiring journey from rehearsals to the big day through the eyes and lives of the Merry Makers and their extended entourage.

ABC 1 Sunday 15th May, 10 pm

Monday, 9 May 2011

Sydney Half Marathon 15th May: more runners for DS NSW

Michelle Stuckey-Paini is running the Sydney Half Marathon next Sunday 15th May 2011, and raising funds for Down Syndrome NSW and ACT DSA, in honour of her daughter Chloe who “... has taught us life is for living and loving, and that a person’s real ‘value’ is in the love in their heart, the joy in their soul, and their true self.”

You can support her via her Everyday Hero page:

Also fundraising for DS NSW in the Sydney Half Marathon:

•  Tanya Amarasingham:  
•  Salt and Pepper:  
•  Anastasia Morris:  

Preparing for school workshop: 26th June

Preparing for school - a workshop for parents of children with Down syndrome who will enrol in Kindergarten in 2012 or 2013, on

•  Choosing a school
•  Enrolment procedures
•  Practical tips for preparing your child for 'big' school'

1.30 - 4.30 pm, Sunday 26th June

Down Syndrome NSW, 80 Weston Street, Harris Park

There is no charge for this event, but booking is required. Contact Lynn or Judy at Down Syndrome NSW on 9841 4401 or  for further information and/or to register.

Sunday, 8 May 2011

Mothers' Day

Saturday, 7 May 2011

"We need to kick (the door to change) off its hinges"

Stella Young, editor of the ABC's Ramp Up site, in summing up what she wants for people with disabilities ....

"... Bill Shorten said in his opening address on Monday (at the National Disability and Carer Congress in Melbourne), "the door to change is ajar".

We will not be able to waltz through it. We need to kick it off its hinges.

This is the best chance we have ever had and we cannot afford to waste it."

John Della Bosca's (Director NDIS campaign) speech to the Congress is on You Tube, in two parts:

Friday, 6 May 2011

Free online events: introducing new "See and Learn" programs

Two Down Syndrome Education International online events in May have been timed for the convenience of participants around the world, including in Australia:

Introducing See and Learn Language and Reading

See and Learn Language and Reading provides graded activities that are designed to develop spoken language and reading skills. Building on typical strengths in visual learning, it emphasises the visual presentation of language through reading.

Find out more at one of the following events:

17 May 2011
9.00am UK/BST (10.00am Paris, 1.30pm New Delhi, 4.00pm Singapore, 6.00pm Sydney, 8.00pm Auckland)  Click here to register

18 May 2011
 6.00pm UK/BST (10.00am Los Angeles, 1.00pm New York, 7.00pm Paris) Click here to register

Introducing See and Learn Speech
Building on the success of the See and Learn Language and Reading programme, the new See and Learn Speech programme offers designed to help children with Down syndrome improve speech discrimination skills and develop clearer speech production.

7 June 2011
6.00pm UK/BST (10.00am Los Angeles, 1.00pm New York, 7.00pm Paris) Click here to register

8 June 2011
9.30am UK/BST (10.30am Paris, 2.00pm New Delhi, 4.30pm Singapore, 6.30pm Sydney, 8.30pm Auckland) Click here to register

Thursday, 5 May 2011

Some good online reading ...

Let’s talk about hearing and Down syndrome! is today's post from Communication Skills for Life.  Did you know that hearing is one of the prime influences on how well a person with Down syndrome speaks? 

Accessible Arts Newsletter #3 2011 is now online - lots of good reading, including news about a number of people with Down syndrome active in the arts, and some great pictures. Sign up for email delivery if you have an interest in the arts scene, as a participant or as an audience member.

Wednesday, 4 May 2011

DS NSW e-Update, May 2011

Our CEO, Steve Clarke writes a message to members each month, keeping us up to date with current activities.  He's been particularly busy recently, with some major events and changes in the national arena, as well as local events, so we thought we'd share his thoughts more widely. 

CEO Steve Clarke's introductory letter circulated to email subscribers, 3rd May 2011:

Today I write to you from the National Disability and Carer Congress in Melbourne where the main theme is “Make Every Australian Count”

“Make Every Australian Count”  is the inspirational campaign (please sign up if you haven’t already) in support of the National Disability Insurance Scheme (NDIS) The NDIS has been proposed as a universal scheme, similar to Medicare that will cover all Australians today and those born tomorrow. It will transform the way services and support for people with disabilities are funded and delivered. It will ensure that people are not just better supported but have greater individual choice and control over how, when and what services they decide to use.

The Productivity Commission has been inquiring into an NDIS at the request of the Federal Government and earlier this year released a thoughtful and well argued report (you can see a summary here ). The draft report strongly recommends the introduction of an NDIS, at a cost of approx $6 Billion, not just because adequate support to lead a dignified and inclusive life (‘an ordinary life’) is a basic human right and core responsibility of government but also because it is actually a good investment to do so – an investment that will make society more productive, reduce inefficiencies and strengthen our communities – in short that will make the world a better place!

It has been hugely encouraging to hear enthusiastic support for an NDIS during the conference across the political spectrum from assistant treasurer Bill Shorten, Parliamentary Secretary for Disabilities Jan McLucas, opposition spokesman Mitch Fifield, the Greens, as well as from such luminaries as Australian of the Year Simon McKeon.

I shall carry this inspiration with me into the first meeting of Down Syndrome Australia tomorrow – a meeting more than 10 years in the making. Here, plans will be developed for our new formed national body – Down Syndrome Australia will continue as it did as a more informal network to advocate strongly for groundbreaking developments such as an NDIS. We will continue to exercise a strong voice in the implementation of new programs such as Better Start which from 1st July will provide individual funding for early intervention for all children with Down syndrome and a number of other congenital conditions  Down Syndrome Australia has a representative, Catherine McAlpine, on the Expert Reference Group for Better Start, and will be working hard to make sure that it is indeed a better start for families and not just another bureaucratic “challenge” for parents to overcome.

Talking about inspiration – tomorrow’s national gathering will cap off for me a couple of weeks of amazing events not least was meeting up with a crowd of over 100 at the remote outpost of Cameron Corner – where three states meet. This was the final destination of the Scrapheap Adventure Ride 2011 – a most remarkable event involving some most remarkable people which has so far raised close to $60,000 in support of Down Syndrome NSW.

My huge thanks to all riders, crew, supporters and sponsors and in particular to Perry Gilsenan, the ‘father of the Scrapheap’ for devising and putting together this event like no other. Please follow the links in the update to read all the reports.

Last but not least in the inspiration stakes, I was privileged to attend the formal launch of Up, Up, Toastmasters last weekend – a public speaking group for adults with Down syndrome. We already knew people with Down syndrome have a lot to say if given an opportunity and this group has given many a forum to have that say and to build their confidence and skills in doing so. To find out more about Up, Up, Toastmasters please drop me a line or contact Maria Short at Down Syndrome NSW.

You will find some of this and much more in this month’s e-Update

CEO, Down Syndrome NSW

Tuesday, 3 May 2011

$200 million additional funding for students with disabilities in federal budget

Prime Minister Julia Gillard today announced new budget funding of $200 million to provide extra support for students with disability in Australian schools.

The Prime Minister said that every student in every school deserves a great education and this extra funding will help ensure that students with disability get that same opportunity.

The Prime Minister made the announcement today with the Minister for School Education Peter Garrett at Harrison School in Canberra.

There are more than 164,000 students with disabilities currently attending Australian schools.

The More Support for Students with Disabilities initiative will deliver new services, equipment and support. This will make a significant difference for thousands of children with disabilities at school and their families.

The Prime Minister said this budget will be tough but the Government is determined to ensure that funding is available where it can make the most difference in vital areas like health and education.

The Gillard Government initiative will provide many benefits for students with disability and their families including:
  • new services such as speech and occupational therapy delivered at school by health and student welfare professionals
  • access to special equipment in classrooms such as audio and visual technology so that students can more easily learn and engage with their classmates and teachers
  • additional hours of in-class support from staff including teachers aides, health and allied health professionals as well as enhanced support through team teaching
  • adapted curriculum tailored to their needs based on the latest research and expert advice.
It will also improve support for teachers so they can:
  • improve the planning and delivery of programs, lessons and activities that enhance the way students with disabilities learn and are included in the classroom
  • better engage support staff, health and allied health professionals and curriculum experts to assist them in providing appropriate support for students
  •  access expert advice to learn the latest skills and strategies to improve the education of students with disabilities.
Government, Catholic and Independent schools that teach students with a disability are eligible so that students can benefit no matter what their background or circumstances.

The Prime Minister said every parent has an expectation that their children will realise their potential at school and achieve the results of which they are capable.

Mr Garrett said that under this new initiative, schools will work with families, support agencies and health and student welfare professionals to focus on students’ needs.

He said that the package has been developed after extensive consultations with school principals, disability organisations, unions, communities and other educational professionals.

The Gillard Government will immediately work with the States, Territories and education authorities on how the new funding can be delivered to achieve maximum benefit for students with disability.

Students will receive the benefits of the initiative by the time school starts next year.

Funding arrangements to support students with disability are also being considered by the independent Review of School Funding, which will report later this year.

Source:  Joint media release, Prime Minister Julia Gillard and Minister for School Education, Peter Garrett, 3rd May 2011

The Australian Education Union welcomed the extra funding:

There is no doubt special education has been one of the most neglected areas of education.

Overall, public schools educate 80 per cent of students with disabilities, including students with the most severe disabilities. We anticipate and expect the distribution of funding would reflect that.
Schools require ongoing targeted funding to address the needs of students with disabilities.

Source:  Australian Education Union media release, 3rd May 2011

Scrapheap pictures, reports and fundraising

The Scrapheapers are emerging from recovery mode and sharing their adventures. 

The fund raising total has gone up to $60,000 - how good is that?

You can follow the reports and pictures on Facebook, and/or visit Narelle Rimmer's blog post "A short ride in the countryside for the full story of her trip with her mate Tina,  from Queensland to Cameron Corner and back, the strays and characters they met along the way, the hospitality they enjoyed, and their plans already forming for next year.  Either way, keep scrolling down until you come across the words "pink tutu" and check out the picture!

Monday, 2 May 2011

Good luck, Karley!

Karley Moran is swimming at the Sydney International Aquatic Centre at Homebush today, where she willl compete in the 50 m freestyle and backstroke events, at the NSW Combined Catholic Colleges swiming champioships 2011.  Karley is representing her school, All Saints College (St Peters campus) Maitland. She needs to meets certain time limits to get through to the next stage.

Karley also competes with Special Olympics NSW and attends squad training.

Good luck today Karley!

Spectronics on the road in 2011: Register now for full day workshops

Spectronics is Australia and New Zealand’s largest supplier of inclusive learning technologies:

The Spectronics team are about to hit the road for another series of popular workshops in Brisbane, Sydney and Melbourne. Workshops for Auckland and Wellington in November of this year are currently being finalised too. It would be great if you could join us!

What are they covering in their full-day workshops?
Workshop One:
Augmentative and Alternative Communication (AAC) in the Special Education Classroom

Workshop Two:
Assistive Technology for Secondary Students who Struggle with Literacy

Workshop Three:
Developing Literacy in Primary and Special Needs Classrooms

Workshop Four:
Integrating Assistive Technologies Throughout the Curriculum in Special Education Classrooms

And just added! The workshops have been expanded to include some discussion of Apps for iPhones and iPads in response to the frequent questions we are fielding now re Apps for special ed, for AAC and for literacy support at both primary school and secondary school level. While this will not be the main focus of the sessions, we appreciate that discussing some Apps will allow you to compare them with the other technology options presented in each session.

When and Where?
Sydney: Monday 18th July (Pupil-free day) and Tuesday 19th July 2011
Melbourne: Monday 10th October (Day One Term 4) and Tuesday 11th October 2011

How much do they cost?
$180 per day or $295 for both days

For more information visit Spectronics here  or contact Eliza Bale, Spectronics’ Events and Marketing Coordinator on  or phone (07) 3808 6833

Texthelp Australian Tour June 2011, Sydney

Source: Disability Education and Employment News: No. 5, Vol 7. published by the National Disability Coordination Officer Program

Sunday, 1 May 2011

Key Word Sign Group Workshop: Wauchope NSW

Come along and join teachers, parents, grandparents, teacher’s aide, friends, therapists etc to our FREE key word signing group

5.30pm to 7pm Wednesday 18th May

3 Enterprise Place, Wauchope
off Bago Road industrial area

Everyone is welcome and please feel free to pass on information. We have lots of fun, it is easy to learn – we play games, speak and sign, sign and play - and it doesn’t matter if you know 1 sign or 30 or 100 you will learn about 20 – 30 new words every meeting or get to practise some forgotten signs.

Please email/ phone/ Text Julie Langeveld if you are interested in coming along to our meetings and RSVP for numbers. All materials supplied.

Contact: or 0402 729 319