Address details

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

Tuesday, 31 January 2012

Parent and professional presentations on weaning from feeding tubes : Westmead

These events  for parents and professionals are organised by NoTube, an Austrian medical team experienced in weaning children off feeding tubes, visiting Adelaide, Melbourne and Sydney during February.  

23rd February 2012
The Children's Hospital at Westmead, 
Presentation of Notube at Grand Rounds 1-2 pm: presentation for onsite medical staff
Details on NoTube news page.
For Parents
Meeting option for families with tube dependent children: from 3 - 6 pm, at Northcott Centre, North Parramatta. Please pre-register with Karoline,  Further information on NoTube news page

You can also see more details and RSVP on Tube Fed Kids - Deserve to Eat, a social network for parents of tube fed children who wish to share their experience and resources with other parents

24th February, 2012
The Children's Hospital at Westmead, full day conference, with play picnic video and Q & A 
Information for professionals: 
Details on NoTube news page - includes flyer and registration form.

Monday, 30 January 2012

Resourcing Families: 'More Choice and Control'

Stronger Together 2, the NSW government's statement of commitment on supporting people with disability and their carers 2011 - 2016,  promises that all NSW government funded disability services will include individualised funding options by 1 July 2014.

More Choice and Control  is an opportunity to learn from families already directing their own supports in NSW to be presented by Resourcing Families. Extract from the flyer:

The future holds unprecedented opportunities for people with disability and their families to have more choice and control about how they use supports in a way that suits their interests and needs. What this could actually mean for people’s lives can be hard to imagine.  

More Choice and Control  will include families sharing their stories about how they have devised and directed their own clear plans, using community resources and funding, if available, to build a meaningful life for their family member. A good example is sometimes the best insight into what could be possible!

Friday 9 March 2012 - West Ryde

Detailed flyer and registration brochure.

School's in - have a great year!

Most NSW students return to school after the long holidays today, with kindergarteners starting later in the week.  We wish all returning students with Down syndrome and their families and teachers a very good school year.

We are especially thinking of the little ones starting 'big' school for the very first time, and adolescents embarking upon the adventure of high school ... all the very best.

Remember that now, in 2012, many have gone before you - a great deal of expertise and experience exists in schools and with individual teachers, and it will grow with your child's schooling. A generation of families have broken ground in inclusive and special education, there are many effective resources and programs to tap into, and training for teachers, and research into quality education for students with Down syndrome is ongoing.

Friday, 27 January 2012

Website of the week: Jill Sherlock Learning Assistance Library

Continuing our 'back to school theme' this week's featured website is a wonderful resource for classroom teachers and parents across NSW that many mainstream teachers do not know about. 

The Jill Sherlock Learning Assistance  Library is an initiative of the NSW Department of Education and Communities and the Jill Sherlock Memorial Trust. This state facility provides resources to teachers, allied professionals and parents to support the teaching and learning needs of students with learning difficulties, in the context of syllabus and curriculum requirements.
In practice, teachers and parents can access both the extensive catalogue and arrange loans via the website. The librarians can help to locate particular resources to help support a particular student need.  Loans are mailed to borrowers and can be returned by mail.  The library is located at Oatlands Public School, very near to the geographic centre of Sydney.
We recommend that parents bring the Jill Sherlock Library to the attention of schools and classroom teachers and learning support officers ... the collection includes many  items designed to enhance the learning of students with Down syndrome. It could be a very appropriate and freely available resource throughout a student's school life.

The library re-opens on Monday (30th January) - call on 9630 8684 or email and have them send you some brochures to distribute. Your child's teachers will thank you.

Supported Living Fund: seminars on details and how to apply

In a project funded by Ageing, Disability and Home Care, a partnership between NSW Council on Intellectual Disbaility (CID) and Family Advocacy will run a series of events for people with disability and their families/carers, providing detailed information about the NSW Supported Living Fund, and how to apply for a package for people aged 18 - 24 with disabilities.

This flier is about the events that Family Advocacy will be running for families/carers in February - March 2012.

NSW CID will run events for people with disability during April - June 2012. The CID events will be promoted at a later stage.

Events for families and carers will be held across NSW:

Wed Feb 15  Dubbo
Thurs Feb 16  Bathurst
Mon Feb 20   Kingsford
Tues Feb 21  Blacktown
Wed Feb 22   Burwood
Thurs Feb 23  Hornsby
Tues Feb 28  Lismore & Wollongong
Wed Feb 29  Coffs Harbour & Liverpool
Thurs March 1  Armidale & Newcastle
Fri March 2  Wyong
Mon March 5  Wagga Wagga
Wed March 7  Campbelltown

The seminars are free.

Phone: 02 9869 0866 or 1800 620 588 (NSW non metro callers)
Fax: 02 9869 0722

For more information: 

Thursday, 26 January 2012

Library Thursday: some useful resources for the new school year

Now that the start of the 2012 school year is just days away, it really isn't too soon to be thinking about resources for supporting students with Down syndrome at school this year (does it feel like the fourth week of January already?):
  • This post from July 2009 is worth revisiting ... it links to two books (one of them also available as an app) that can help to explain Down syndrome to other children, which is sometimes a good idea at this time of the year.
  • If you have a child with Down syndrome entering high school this year, we recommend Late, Lost and Unprepared as background reading. It is available for loan to Down Syndrome NSW members from our library.

The Why and How of School Inclusion

A Family Advocacy workshop presented by Dr Bob Jackson -

Newcastle: 13 March 2012
Ryde: 14 March 2012
Hurstville: 15 March 2012
Wollongong: 16 March 2012

The workshop will be useful for family members, friends and educators of a student with developmental disability exploring the possibilities of an inclusive and successful mainstream school education.

Wednesday, 25 January 2012

Wordless Wednesday

$48m to train teachers of students with disabilities

The Prime Minister and NSW Premier yesterday announced plans for spending NSW's share of $200 million pledged last year to support students with disabilities:

As reported in the Sydney Morning Herald today:

Almost $48 million of federal money to help children with disabilities in NSW schools will be spent on teacher training, the Premier, Barry O'Farrell, said.

The money is part of a $200 million program to improve resources for disabled students announced in the federal budget last year, the Prime Minister, Julia Gillard, said yesterday.

Under the agreement, which NSW is the first state to sign, the money can be spent on technical aids, teacher training or additional staff.

The funding will be provided over the next two school years.

Mr O'Farrell said the money would ensure NSW teachers had improved access to training so they were better equipped to help students with disabilities such as dyslexia and autism.

''This scheme is very cleverly designed to enable states to focus on their particular needs … and certainly in NSW one of our key focus areas is on the teacher skills,'' Mr O'Farrell said.

How to raise a child with Down syndrome: a nice overview

Amy Julia Becker often writes about her daughter Penny, who has Down syndrome in her blog, Thin Places.  She also writes occasionally for newspapers, magazines and other blogs as well, and has written a number of books.  

How to Raise a Child With Down Syndrome: Advice and Resources, 
her article is published this month by Parents magazine (US edition).  It is a nicely organised overview, that might help a new family, or one with a prenatal diagnosis, to organise their thoughts without too much overwhelming detail. It would be a useful place to refer other family members and friends to, as a  "this is where we need to start" answer to their "what can we do?" questions.

And there is a beautiful photo to go with it ...

Tuesday, 24 January 2012

Modelling opportunity for young children with Down syndrome, Sydney

Online clothing company Rock Your Baby is looking for a model for a photographic shoot in Sydney on 4th/5th February. Specifically they are looking for boys aged 6 months to 1 yr and girls aged 2-3 yrs, and need to receive your photos by the end of this week.

From Joh Walsh at Rock Your Baby:

We would be more than happy to use a little child with Down syndrome as a Rock Your Baby model. I would not be comfortable with just doing it for publicity but more to promote that all children are beautiful and need to be embraced into society no matter what their disability is.    

If you know of any families who would like to take part in our shoot (4th/5th Feb – at Botany, Sydney) then we would be more than happy to do this. They can send photos in to me at 

The shoot is with a well-known children’s photographer and will be all done in a photographic studio. We would only need the child for no more than 30 mins – 1 hr. 

Please note that the photographer also happens to be the official photographer for the Down Syndrome Society (of South Australia), and she is fantastic with children.

If you have any further questions please feel free to email me or you can contact me on 0425 306 907.

Vision and Down syndrome: Children's Hospital Boston Speakers Program 2012

The excellent Allen C Crocker Speakers Program  on children with Down syndrome at Children's Hospital Boston is continuing in 2012. The monthly talks, designed to provide health information to families are genersously made available online for the benefit of families everywhere.

Vision Issues and Down syndrome, the first event of the year (from 3rd January) is available to view online, along with all past talks, from 2010 and 2011. 
Topics to June 2012:
February 27, 2012  - Down syndrome and Thyroid Dysfunction
March 6, 2012  - Secrets to Social Success: How to Make and Keep Friends 
April - to be announced
May 1, 2012  - Augmentative Communication Strategies 
June 5, 2012  - IEP and School Wide Strategies to Prevent Bullying of Students with Disabilities 

Monday, 23 January 2012

On exhibition: Goulburn, NSW

Drawn to the Line is a selection of drawings from the Peter Fay collection, now on exhibition at the Goulburn Regional Art Gallery.  It includes a drawing by 15 yr old artist, Fraser Pollock (who is also profiled in the current issue of Voice).

18 January - 10 March 2012 
Peter Fay floor talk: Thursday 1 March 2012 12.30pm

Cnr Church & Bourke Sts. Goulburn NSW 2580
t 48 234494 | f 48 234456 | e
Open Monday-Friday, 10 am – 5pm Free entry. Saturday 1-4pm

WDSC program and pre-conference

Notifications for upcoming events are starting to come through, and we'll begin posting them this week, starting with the big one for the international Down syndrome community:  the 11th World Down Syndrome Congress in Cape Town, South Africa, in August.

Draft programs are now available to download here.

The main program is scheduled for 
15th - 17th August 2012
with additional events for people with Down syndrome (over 18 years) on Tuesday 14th August
a medical symposium on Tuesday 14th August
and an education symposium (to be confirmed) on Saturday 18th August.

Friday, 20 January 2012

Positions vacant at Down Syndrome NSW

Down Syndrome NSW and Down Syndrome Victoria are currently advertising two vacant positions:

The Journal Managing Editor is responsible for managing VOICE, the member journal of Down Syndrome NSW and Down Syndrome Victoria.

The Information Coordinator, will be responsible for developing, consolidating and administering the combined Down Syndrome NSW/Down Syndrome Victoria knowledge and information database, publications and resources.

To inquire further or obtain position information kits for the above please contact Steve Clarke, Chief Execuitve Officer on (02) 9841 4408 or 042 4044 930 or .
Applications addressing the selection criteria to 

  • LIBRARY COORDINATOR,  14 hours per week
Down Syndrome NSW is seeking a Library Coordinator to work within its Family Support Team based at our Harris Park office. 

The Library Coordinator will organise, maintain and expand the library and resource collection, and manage the lending collection and database and facilitate borrowings by members.

The Library Coordinator will advise parents, members and staff regarding available resources and information sources; access, assess and disseminate information from journals, articles and websites as required.

The Library Coordinator will not necessarily be a formally trained librarian but will have very good understanding of Down syndrome and issues facing parents and families; good computer, internet and research skills; and is very likely to be a parent of a child with Down syndrome.

Inquiries and applications to   Judy Davidson, Manager – Family Support,   02 9841 4401, or Steve Clarke, CEO, 02 9841 4408 or

More from siblings ...

Agnieszka aged 9 and Magdalena aged 5 (who has Down syndrome) live in rural Wales, and are home schooled.  Agnieszka is a very keen and skilled young filmmaker, who is documenting her life with her sister.  Part 1, a short (2 m 55 s) video, was released a year ago:

Agnieszka released Part 2, documenting 2011, this week - it is a 15 minute video, remarkable for its quality and depth.   She plans to release an update each year.  

Magdalena only began to walk and to talk at age 4, and has made remarkable progress. Agnieszka is an excellent narrator.  There are many delightful moments here, as well as a well as a very cohesive overall picture of the sisters, from their own perspective. 

Thursday, 19 January 2012

Library Thursday: new books scheduled for release in 2012, an interview and a video

A heads up on some new titles from specialist publishers Woodbine House in 2012, all of them aimed at a family readership:

available now
Down Syndrome Parenting 101: Must–Have Advice for Making Your Life Easier, by Natalie Hale

due to be released in March
Speaking of dyspraxia, by Leslie Lindsay

due to be released in May
Early Communication Skills for Children with Down Syndrome: 
A Guide for Parents and Professionals, Third Edition, by Libby Kumin

due to be released in June
Try Reading Again: How to Motivate and Teach Older Beginners, Age 10 and Up, by DeAnna Horstmeier

We'll let you know when we have copies in our library. If you are interested in purchasing your own copy, Woodbine House does not accept online orders from Australia, but you could try advance ordering from The Book Depository or Fishpond.

An earlier interview with John C McGinley
From Ability magazine's Facebook page:
While John C McGinley is ABILITY Magazine’s Dec/Jan 2011-12 cover story (the link is in this blog post), here’s a fun look at the past where we spoke to McGinley about his “personal experiences of 9/11, the hilarity of his life as Dr. Perry Cox and his very personal experiences of raising a child with Down syndrome.”  How time flies by… 

A siblings' video
This online video, made by two siblings, one of them a young man with Down syndrome is proving very popular this week:

Wednesday, 18 January 2012

Wordless Wednesday

Adult Down Syndrome Clinic marks 20th Anniversary

The Adult Down Syndrome Centre in Chicago is this month celebrating its twentieth anniversary as a specialist health care service for people with Down syndrome.  The ADSC has developed a depth of experience and expertise that is highly regarded not only by its patients, but worldwide. The staff and services have expanded, and a new building is currently under construction.

The directors, Dr Brian Chicoine (a general practitioner) and Dr Dennis McGuire (a clinical psychologist) have generously shared worldwide their expertise through many, many presentations at local, national and international meetings of both professionals and families, through social media, and very significantly through their two book, Mental Wellness in Adults with Down Syndrome, and the Guide to Good Health for Teens and Adults with Down Syndrome (both can be borrowed from our library by members, but we know that many families have purchased their own copies.)

To mark the anniversary, A Center for Adults and Adolescents with Down Syndrome: Twenty Years of Experience, describing and summarising the ADSC's experience and plans for the future has been published online.

Dr McGuire is also the author of the very popular If People with Down Syndrome Ruled the World.

If you would like to send your congratulations to the ADSC, you can do so on their Facebook page.

Tuesday, 17 January 2012

Is it too soon to start talking about school?

Still two weeks before the 2012 school year starts for most students in NSW, so is it too early to be thinking about school? If it is, just ignore this post for now ... 

The NSW Government has brought together the NSW Department of Education and Training with Children's Services and Communities NSW to create the Department of Education and Communities (DEC). The website for NSW Public Schools is the same - only the terminology is changing.  Information specifically related to students with disabilities is located here, and regional office contacts are here.  

Learners with Down syndrome is a comprehensive introduction for teachers who have students with Down syndrome in their classes, published by Down Syndrome Victoria. It is compiled from the work of a number of well known specialist educators around the world. While comprehensive, it is also brief enough to be easily digested by a busy teacher, as a very useful introduction to the possible impacts of Down syndrome on their student, and to the body of evidence and resources on how best to support their learning.

It is now available both  as a .pdf document to read online or download (free) or in print (to purchase). Your child's teacher and/or learning support assistant might find it very useful to have on hand from very early in the school year.

Monday, 16 January 2012

Supported Living Fund: expressions of interest now open

In addition to the expansion of the Independent Living Support Initiative in the previous post, NSW Ageing, Disability and Home Care is beginning to 'roll out' the Supported Living Fund packages promised in Stronger Together 2. Expressions of interest are now open. Information and contact details are available from the ADHC website, and the expression of interest form can be downloaded:
The Supported Living Fund is an initiative that aims to provide people with a disability, their families and carers greater opportunity to create a good life, and build person centred and sustainable living arrangements. The focus is on giving people with a disability, their families and carers a truly flexible and individualised option in the planning of ongoing living supports.
Ageing, Disability and Home Care (ADHC) through Stronger Together Two, commits a total of 300 Supported Living Fund packages across NSW (100 each in 2011/12, 2012/13 and 2013/14), totalling $60 million  over five years.
The opportunity to formally register an interest in accessing a Supported Living Fund package is now open. People with a disability who are planning or considering moving to a supported living arrangement are encouraged to register with ADHC.

Please note that Expressions of Interest for this intake round will close on Friday the 27th January, 2012. Note, there will be further rounds later in 2012, and also in 2013.
... Click here to read more and to access links to further information and the Expression of Interest form. 
Family Advocacy took the lead in campaigning for the implementation of a Supported Living Fund in NSW.  Their Supported Living website provides excellent information on the concept and its realisation for individual people.

Friday, 13 January 2012

Funding boost for the Independent Living Support Initiative

NSW Minister for Disability Services Andrew Constance has announced the state-wide expansion of a program to help people with a disability live more independently in the community.

$4.26 million is being delivered to service providers across NSW for the Independent Living Support Initiative, which will help 58 people plan for their long term living arrangements and learn the necessary skills to be more independent.

“Service providers will work one-on-one with ILSI participants for up to 35-hours a week to develop their everyday skills,” Mr Constance said.

“Some of the skills training provided in the program could be anything from cooking, money management, washing, shopping, personal health and safety, or communication.”

“Once the person with a disability builds on their strengths and skills, they may choose to move out into a granny flat, share a house with friends or siblings or remain in the family home but be less reliant on help from their ageing parents.”

Service providers across NSW receiving new ILSI funding include:
  • Endeavour Industries Ltd and Mai-Wel Group (consortium) in Hunter/Maitland, Muswellbrook and Hunter/Cessnock - $367,500 to support 5 people.
  • House With No Steps on the Central Coast and in the Illawarra - $588,000 to support 8 people.
  • Lifestyle Solutions in Cumberland Prospect - $735,000 to support 10 people.
  • Sunnyfield in Nepean and New England/Armidale - $588,000 to support 8 people.
  • Sunshine in Northern Sydney - $367,500 to support 5 people.
  • Uniting Care Disability Services in the Inner West - $735,000 to support 10 people.
  • Coffs Harbour Support Services on the Mid North Coast - $294,000 to support 4 people.
  • Caringa Enterprises on the Far North Coast - $220,500 to support 3 people.
  • Kurrajong Waratah in the Riverina/Murray, Bland, Leeton, Narrandera, Temora - $367,500 to support 5 people.
This boost in new growth funding now sees the ILSI program reach $5 million per annum assisting 68 people with a disability, their families and carers across NSW.

Interested applicants should contact Mr Scott Bridges, ILSI Project Manager, Down Syndrome NSW on 02 9841 4414 or to find out further details about the initiative.

Individuals are expected to start in the ILSI program in March 2012.

Mr Constance said that the ILSI program falls within the policy direction of Stronger Together 2; the O’Farrell Government’s $2 billion plan to expand and improve disability services in NSW.

ILSI Carer-Client Fact Sheet
ILSI Expression of Interest

Website of the week: Accessible Arts

If you have any interest in the arts and in a person with a disability living in NSW, Accessible Arts needs to be on your 'favourites' list.

Accessible Arts promotes and provides opportunities for people with disabilities to participate in arts and cultural activities either as audience members; through attending galleries, theatres, museums and festivals; or as participants in art, drama, music, dance and multimedia activities; and by developing as professional artists.

Our vision is a society in which people with disabilities can contribute to and fully experience the arts and cultural life.

The website is easy to navigate and full of information that is well organised - dates, times, places, costs, venue accessibility are all addressed.  Subscribe to the monthly e-Newsletter so that you don't miss out on anything.  You will often see stories about people with Down syndrome involved a wide range of activities.  Information is provided about events and activities designed especially for people with disabilities, and about people with disabilities participating in mainstream events and activities, right across NSW.
If you want to know what's on, what's in the planning, what opportunities are open, how to make an event or activity accessible, or who's doing what, when and where, Accessible Arts is the place to find out. Accessible Arts is also on Facebook and Twitter - these people are connected, and they really know what they are doing.

Thursday, 12 January 2012

Library Thursday: National Year of Reading

2012 has been declared the National Year of Reading in Australia.  Reading has great relevance for people with Down syndrome and those who care for them - as a skill for all aspects of living, and as a valuable source of information, and pleasure.

The National Year of Reading has a website, a calendar events and activities, a newsletter, opportunities for involvement, and much more. The official launch is scheduled for 14th February, 2012.

As recently as a generation ago, few people believed that those with Down syndrome could learn to read (or could learn other 'academic' skills) - so they were often not given the opportunity, and predictably few did read.  Expectations and approaches are very different now, and research continues to provide new information about how people with Down syndrome of all ages develop literacy skills, and how we might better teach them.

With that in mind, we are planning to making the National Year of Reading a theme for this blog in 2012, highlighting various aspects of 'reading and people with Down syndrome' throughout the year.  Our regular library posts will continue, along with contributions such as
  • family stories about reading 
  • what people with Down syndrome think about reading
  • resources for teaching and supporting reading skills at school and at home 
  • other libraries
  • articles and reviews
  • news about research into reading skills development
  • information about apps
  • ideas for improving your local library's resources about people with Down syndrome
  • links
  • guest bloggers
  • and of course pictures to illustrate it all
Your suggestions are welcome.

Here is a a cool little animation of books having fun - the kids might like it too (nothing at all to do with Down syndrome).

The Down Syndrome NSW library collection is available for loan to members (click here to find out how to do it). The collection includes books and DVDs designed for families and carers, and for children and adults with Down syndrome.

Wednesday, 11 January 2012

Memantine study: no effect on dementia in people with Down syndrome

The report from a UK study of  the drug memantine (Nemanda) as a treatment for Alzheimer's disease in people with Down syndrome has shown no significant effects.

Read the news report and commentary in Family Practice News here.

Adult Down Syndrome Clinic comments and link to to the abstract of the research report published in the The Lancet.

If you need information about people with Down syndrome and Alzheimer's disease in Australia, you are welcome to visit our web pages on Growing Older with Down Syndrome for information, links and contact details for our support staff.

Wordless Wednesday: January = sun + sand + water

Tuesday, 10 January 2012

Families, holidays and life

Easing gently into a new year of blog-reading, you might like some recent posts from some of our favourites, and a new (to us) family blog that promises fun:

Let's Talk Down Syndrome - Home Made Holiday - some ideas for everyday fun in the holidays

Elysha and Jake (her companion dog) - how a companion dog fits into a young woman's life, and understands sign language!

The top ten things I learned from (18 yr old) Alex in 2011 - Alex's Mum says she learns many more than 10 things every year ... these are some 2011 highlights.

And a newly discovered blog to follow, April Anecdotes from a family who have six adult and teenage children - three of them with Down syndrome (you might recognise one of the writers, Jennifer, as Ms Bekins from Let's Talk Down Syndrome!) - this one is now on our updated and revamped list of 'Blogs we read'.

Monday, 9 January 2012

Here we are in 2012 already - time to kickstart this blog for the year and to Keep Up!

The Down Syndrome NSW office re-opens from today.

Self managed support - one young woman's experience

Services and government funding for people with disabilities in NSW are moving towards giving those who wish to consider it, the option of managing their own services (all funded services by 2014).  Ability Options' quarterly newsletter, Able Cable - Summer 2011 recounts Bridget Parker's experience with a self managed support package. Bridget has Down syndrome, and lives with significant communication challenges:

For the past two years, twenty-three-year-old Bridget Parker and her family have worked in partnership with staff at Ability Options Self-Managed Services to further Bridget’s interests, meet her needs and achieve her goals ...

Bridget leads an active life.

“I like going to the Merry Makers ... and dance classes ... going to the gym ... working at Penrith Disability Resource Centre and Life Line Op Shop ... I am learning to type, said Bridget. "I am happy now!" 

Read the full article online here (p 10).

Value of the ordinary

Rolling Around in My Head has been one of our favourite blogs since Dave Hingsburger, one of our favourite writers, started writing it in October, 2006, with these words:

What I want to do here on this blog is to think, aloud, about what it is to be in a position of service and a position of power at the same time. About those I've met along the way. This blog is about remembering as well as about imagining.

Five years and some 2000 entries later, its still on the daily 'must read' list. In this post, But only I was there, the ever-eloquent Dave Hingsburger paints three vignettes from his casual observations of people just going about their ordinary lives that would have been great lessons for anyone inclined to limit the value of the lives of people with intellectual disabilities, including Down syndrome.