Address details

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

Tuesday, 30 June 2009

Auslan flashcards, game cards

In addition to teaching and publishing, Hands Can Talk produces a range of resources to assist families learning to use sign and maintaining sign skills to support communication. The latest products are card sets, designed to teach signs in various categories, suitable to be used as flashcards or for memory games, and an Animal Lotto game incorporating photos and signs.

The Hands Can Talk website is currently undergoing a comprehensive overhaul, and will be relaunched shortly. The new products will be available through the new website, but meanwhile, contact Hands Can Talk by phone or email for further information on formats and costs.

Contact details for Hands Can Talk:

Phone 02 9824 8332

Fax 02 9824 8112


10th World Down Syndrome Congress - 7 weeks to go

A reminder that the 10th World Down Syndrome Congress will be held in Dublin, Ireland from 19th - 22nd August 2009 - that's just seven weeks away, but you still have time to register. We know that a number of NSW families are planning to be there, and two DS NSW staff members are attending.

The Congress has a comprehensive website, providing full details for registration and programs, including the first International Synod of People with Down Syndrome, adressing the topics of Employment Opportunities and Living in the Community:

The theme for the Congress is "Lifelong Living and Learning". We have chosen this theme to stress the fact that people with Down syndrome and their families develop right throughout their lives. We are constantly encountering new experiences and personal demands, in circumstances that can be both challenging and fulfilling for each individual, family and community.

Playschool, Tuesday 7th July

ABC TV perennial Play School will feature Matilda, who has Down syndrome, on Tuesday 7th July, in the morning episode (a different episode will be broadcast in the afternoon time slot).

Monday, 29 June 2009

Post School Options Expos: for Students with Disabilities

North Sydney Post School Expo

Date: Thursday 6 August 2009

Time: 3.00pm - 5.45pm

Venue: Dougherty Community Centre 7 Victor St, Chatswood

Find Out About

  • Transition to Work
  • Community Participation
  • Open Employment Options
  • Australian Disability Enterprises

For more information contact:

Sue Werner on
9413 3400

Eileen Lyons on
9416 1087

Timothy Hart on
8878 0514

Post School Options Expos are also scheduled for:

7 July 4.00 – 7.00pm, Windsor HS - Mulgrave Rd McGraths Hill

3 August 4.00 – 7.00pm, Crestwood HS - Chapel Lane Baulkham Hills

11 August 4.00 – 7.00pm, Nepean HS

Source: Disability Education and Employment News: No. 10, Vol 5.

"Making friends: Strategies for supporting friendship development"

A workshop for parents of a pre teen or young adult with Down syndrome

9:30am - 4:30pm
Saturday 19th, September 2009

The Commercial Club
618 Dean Street

Cost - $55 per person, adult siblings free (Includes morning tea, light lunch, GST)
Guest Speaker: Liz Dore,
Relationships and Private Stuff

This workshop will give parents ideas and strategies when supporting their child to:

  • Feel good about themselves

  • Build communication skills

  • Recognise different types of relationships

  • Develop positive and long term friendships

  • Think about others while taking care of themselves
The workshop will include discussion, group activities and reviewing resources.

Enquiries to Siena O’Brien at or phone 9683 4333

Thursday, 25 June 2009

Research participants required - Bond University, online survey

The latest issue of Infoxchange Australia's Disability News includes an invitation from Melissa Reardon, a postgraduate psychology student at Bond University in Queensland for parents to participate in an online research survey:

The aim of the study is to explore levels of parental well-being of parents raising a child with a disability. Parents will be required to answer questions relating to the behaviour of their child, their feelings as a parent, the quality of the relationship with their child, and service provision. The benefit of the study is to assist in the development of resources and support services for parents of children with disabilities and to further expand research into this area.

Click here for the Infoxchange item, with a full description of the project and links to the student, her supervisor and the relevant ethics committee.

Library Thursdays: Getting Started!!! Using Visual Systems to promote Communication

We have previously blogged about the benefits of using visuals to aid communication for people with Down syndrome. Dolly Bhargava and Carson Street School in Perth have produced a manual and DVD on the basics of creating and using visuals, Getting Started!!! Using Visual Systems to promote Communication. The book shows many examples and gives many tips to help with creating visuals as well as to help with communication. It is a useful resource for teachers as well as parents. They have sent us copies of their book to give away to anyone who would find it useful. If you would like a copy, please come and pick one up, email us or call our office and we'll send it out to you. We can post it out with any library books you may want to borrow.

Tuesday, 23 June 2009

Research on sleep in children with Down syndrome - online survey

A Scottish research student at the University of Glasgow is seeking parental input on sleep disorders and children with Down syndrome or an Autism Spectrum Disorder (aged 5 - 11 years). The DSA (UK) is co-operating with recruitment through their website, and Jane Macquarrie has emailed DS NSW directly to enlist further assistance:

My name is Jane MacQuarrie and I am researching parent's views about their child's sleep problems, in parents of children with Down Syndrome or an Autism Spectrum Disorder. I am undertaking this research as part of my Clinical Psychology training at the University of Glasgow in Scotland.To complete my research, I am asking parents to complete a questionnaire on-line.

Click here for a flier about Jane Macquarrie's research
Click here to go to the letter of invitation and to the online survey

Monday, 22 June 2009

DADHC 2009 - 2010 Budget

The NSW Dept of Ageing, Disability and Home Care has published a summary of its budget for 2009 - 2010 following release of the NSW State Budget last week.

Further detail of funding for services in regional NSW is summarised in this press release, and detailed in a series of more specific releases (dated 16th June 2009) that can be accessed here.

National Disability Services (NDS) NSW budget commentary is available in its 17th June News Update.

The Council of Social Services of NSW ( NCOSS) 2009 - 2010 budget analysis is here.

Interview with a celebrity sibling

Eva Longoria Parker (of TV series Desperate Housewives) recently spoke to the UK Daily Mail's Gabrielle Donnelly about her sister, Elizabeth, who has Down syndrome. Click here to read the interview.

Friday, 19 June 2009

Which workshop was that?

It's good to see so many opportunities to tap into others' expertise and experience. We have posted about a number of workshops and seminars recently - here is a summary and links to those occurring in the next few weeks to help you keep track:

Dating Skills Workshops - adults 25+ (Saturday 20th and 27th June. Relationships and Private Stuff )

Workshop for teachers in special education (Wednesday 1st July. Down Syndrome NSW)

Updates in Developmental Disability Health (Thursday 9th July, 2009. Centre for Developmental Disability Studies, University of Sydney)

DADHC workshops available to Northern Metro families (various locations during July, Dept Ageing Disability and Home Care, Behaviour Intervention Service, Metro North)

After school - what then? (various metropolitan locations, late July. Family Advocacy

Planning for the Future (Saturday 8th August, 2009. Family Advocacy)

Healthier Lives – pathways to better health for people with intellectual disability (Sydney City, Tuesday 11 August, NSW Council on Intellectual Disability)

Thursday, 18 June 2009

Library Thursdays: Facing the Crowd

Facing the Crowd: Managing other people's insensitivities to your disabled child by Deborah Fulwood & Peter Cronin has been around for many years. It was first published in 1986 and the reprint in our library was done in 1997. But despite increased inclusion of people with Down syndrome in society, it is still relevant in 2009.  Many new parents are bewildered how to respond to people's remarks about their child. Fulwood & Cronin look at the types of remarks made as well as the types of people making them (loved ones, people you need on side, people you are stuck with and other children). They relate other people's experiences and give strategies and set responses to use.
This is a practical, easy book to read and recommended for anyone who feels weighed down by other people's remarks.
Fiona Place's article in this quarter's newsletter about the use of the R word is also relevant and helpful.
To borrow this book or if you have any queries about the library, call or email us.

Wednesday, 17 June 2009

Family Advocacy Workshop: Planning for the future

8th August - Sydney

Presenter: Jeremy Ward

One of the most common concerns for families is the uncertainty about the future for their family member with disability.This workshop will identify the ways families can plan for and provide a secure future.

It discusses ideas about creating a vision, making a plan and developing a circle of support.

This workshop will be helpful for a parent, adult brother, sister, other relative or friend of a person with developmental disability.

For further details, contact
Family Advocacy directly:

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

Tuesday, 16 June 2009

Revised DADHC policy on respite capacity

The NSW Department of Ageing Disability and Home Care issued a draft policy "Maintaining Respite Capacity" in late 2008 that drew so much criticism that the Minister withdrew it for revision in light of the commentary (see these posts from 10th August 2008; 27th August 2008; 16th October 2008). The revised policy has now been issued, and can be downloaded from the DADHC website here (scroll halfway down the page to April 2009, Maintaining Respite Policy).

A number of associated documents about the revision process are also available from this web page, with these comments:

DADHC has reviewed and taken into consideration the many submissions made in relation to the two draft policy during the six week consultation process.

The Minister requested that the draft policy be re-drafted to take account of this initial feedback. The policy reflects the concerns and suggestions made by many people including carers, advocates and service providers. It reflects how we can work together to support families who have made the difficult decision that they can no longer support their family member at home. The Department acknowledges that any family who has had to make such a decision has not done so lightly.

DADHC is currently seeking responses to a discussion paper, "New Directions for Respite Services in NSW", with submissions closing next week, on Friday 26th June (see this post for more information and links).

DADHC workshops available to Northern Metro families

Department of Ageing, Disability & Home Care (DADHC) Metro North Regional Behaviour Intervention and Support Team provides a calendar of workshops designed to be easily accessible to a variety of people working in the area of behaviour support work, from direct care staff to managers, from families to clinicians.

Workshops that could be relevant to families of people with Down syndrome offered in the July calendar include:

Makaton Basic Workshop
9:00am - 4:30pm Monday 13th July 2009
Achieve Foundation Eastwood, Level 4 – 2 Rowe Street, Eastwood

Working with Challenging Behaviours
9.30 am - 1.30 pm Wednesday 15th July 2009
DADHC Office Level 2 – 93 George Street, Parramatta

Wills & Trusts. Planning for the Future
9.30 am - 12.30 pm, Friday 24th July 2009
DADHC Office Level 2 – 93 George Street, Parramatta

Music Therapy for People with Disability
10:00am - 12:00 pm Tuesday 28th July 2009
The Golden Stave Music Therapy Centre, Kingswood

Families / non paid carers will be given priority where possible. In most instances morning / afternoon tea will be provided. Sessions are at a cost of a gold coin donation, to cover refreshments and materials.

Contact Down Syndrome NSW on 9683 4333 or email for a calendar with full details of each workshop and booking procedures (which are handled directly by the Behaviour Support Team).

Monday, 15 June 2009

NSW Council for Intellectual Disability Forum on Healthier Lives

– pathways to better health for people with intellectual disability

9.30am – 4.30pm, Tuesday 11 August 2009

Sydney Masonic Centre,
66 Goulburn Street,

Cost: $30 for service providers and professionals, free for people with intellectual disability, family members and carers. Lunch and refreshments will be provided

Keynote Speaker: Ass Prof Nick Lennox, Director Queensland Centre for Intellectual and Developmental Disability; President of the Australian Association of Developmental Disability Medicine

An important health forum discussing health outcomes for people with intellectual disability, strategies for improving people’s health and an introduction to NSW CID’s Health Fact Sheet Project.

For further information, an up-to-date program and registration brochure, visit : , and go to the “Future Events” menu; or phone NSW CID on 9211 1611

Thursday, 11 June 2009

Library Thursdays: Competition and The Madonna in the Suitcase

The arrival to the library this week of a New Zealand mother's story* written to her 40+ year old daughter with Down syndrome coincided with the arrival of a box of donated new books. This, in addition to the flux of sibling stories recently, made me think we should run a competition to collect some of our own stories.  We'd like you to send in a story about your family member or friend with Down syndrome and go in the running for free books. There are various current fiction titles for all ages.  Send your stories in to Down Syndrome NSW Attn: Library,  P.O. Box 2356, North Parramatta 1750 or email to and we will select winners and mail prizes. Your stories may be published in whole or excerpted form unless you request otherwise. 

* The Madonna in the Suitcase by Huberta Hellendoorn is a mother's love story to her daughter with Down syndrome, Miriam, who became an excellent artist. It tells the story of migrants finding their place in New Zealand, having a child with Down syndrome in the 60s, encouraging independence and dealing with and deciphering health issues. The photos and Miriam's beautiful paintings really add to the story. This book may be of interest to those interested in artists with Down syndrome as well as those wanting to read about a family who dealt with many issues.

Other links about The Madonna in the Suitcase:

To borrow this book or any other, email us or call the DS NSW office (02)9683 4333.

Tuesday, 9 June 2009

New blog on sign language, particularly its use by people with disability

sign language: Auslan Makaton Key Word signing is Aileen Ryan's new blog, Aileen has run her business Hands Can Talk for some years, and it will be familiar to many families and professionals in NSW with an interest in people with disabilities such as Down syndrome. The Hands Can Talk website is currently undergoing extensive revision. It will be re-launched shortly, and linked from the blog, of course.

In the new blog, Aileen will post about issues to do with everyday use of sign, teaching and learning sign, and its use within education here in NSW. She can answer questions through reader comments, and debate can follow.

Aileen has many years of experience as a sign teacher, author, workshop presenter, and as the mother of four grown up children, including 16 yr old Elysha, who has Down syndrome.

Sunday, 7 June 2009

After school - what then?

A Family Advocacy workshop about navigating the post school system for families of school students in years 11 or 12 or planning ahead!

NORTH SHORE: Tuesday 28 July

PENRITH: Wednesday 29 July

CAMPBELLTOWN: Thursday 30 July

FAIRFIELD: Friday 31 July

The focus of the day will be on the system of funding and support - Commonwealth and State Government responsibilities and non government service providers approved to support school leavers, including:

  • achieving a positive future for young people leaving school
  • what other young people have achieved with their funding
  • levels of funding and how it is allocated
  • the different forms of support arrangements that are available
  • how to make informed choices about the future
  • government guidelines and how they affect school leavers.

Cost to attend: $10.00 per person (GST inclusive and covers morning tea, lunch and materials)

Please phone to register before Thursday 16 July 2009

DS NSW members who have attended this workshop previously highly recommend it.

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


Saturday, 6 June 2009

Cricket Day for people of all-abilities: advance notice


Cricket NSW is conducting a skills development and games day for people with a disability. There are no prerequisites and people of all ages and abilities are welcome to join in the fun!


SCG Indoor Centre, Driver Ave, Moore Park (Parking - MP1 on Driver Ave and entry to Indoor Centre via Venue Services at the main gate of the Sydney Football Stadium)

Skill development: 10.30am - 12.00 noon
Lunch: 12.00pm -1.00pm
Game: 1.00pm - 3.30pm

$30 per person and all equipment supplied (bring your own if you wish!)

Click here for a registration form

For more information please contact:
Donna Little at Cricket NSW on email:

Friday, 5 June 2009

Graduation tribute

It's graduation time in US high schools. There have been a number of media reports about students with Down syndrome graduating.

This one, a tribute to his daughter Jillian, from Paul Daugherty, a sports writer with the Cincinnati Enquirer, is featured in Patricia Bauer's News Commentary blog.

Thursday, 4 June 2009

Library Thursdays: Thicker Than Water

Not long after the arrival of Brian Skotko and Susan Levine's great book for teenage siblings of people with Down syndrome(Fasten your Seatbelt), a new book, Thicker than Water: Essays by Adult Siblings of People with Disabilities (edited by Don Meyer, Woodbine House 2009) has been published. The stories are about people with various disabilities. There are several by siblings of people with Down syndrome and most are siblings of people with some intellectual disability. Many of the authors work in the disability or health sector. Brian Skotko, Kate Strohm (founder of Siblings Australia), Rachel Simon (author of Riding the Bus with My Sister), and Jennifer Owensby (creator of The Teachings of Jon documentary) all contribute to this book. It is an interesting look into the feelings of sometimes an overlooked group who, most likely, as is noted in the introduction, will have a longer relationship with their brother or sister than anyone else including their parents. The essays cover a range of experiences, feelings and reactions. It gives much to relate to for siblings and much to think about for parents in how they deal with all the family and plan for the future.

Also arrived this week is My Sister Alicia, the beautiful picture book written from a sibling's point of view about her 6 year old sister with Down syndrome, mentioned in an earlier blog. This book would be great for primary school aged siblings.

Related links:

Other sibling resources by age:
Let's Paint the Octopus Red for young siblings of babies with Down syndrome
The Worst Best Brother picture book for siblings of pre-schoolers with Down syndrome
Oh Brother! for older primary to early high school aged siblings
Fasten your seatbelt for high school aged siblings

If you are interested in borrowing any of the resources, just email us.

Wednesday, 3 June 2009

Commentary on recent research into cancer prevention

Here are two media articles following up reports of the research into cancer prevention related to Down syndrome (See this post from 22nd May) - the first gives more background to the study, the second is a commentary on how we value people with disabilities, Down syndrome in particular.

A medical puzzle yields cancer clue, Boston Globe June 1 2009, Stephen Smith

Remember that every life has value,, June 03, 2009, Ashley Sanchez

Tuesday, 2 June 2009

Updates in Developmental Disability Health

Proudly presented by Centre for Disability Studies, The University of Sydney

This seminar will focus on some of the recent developments in the assessment and management of health conditions in people with developmental disability. Current trends in health service provision for people with developmental disability in Australia and overseas will also be explored.

The seminar is open to health care professionals, professionals in disability services, and family carers.

Keynote speaker:

Dr Henny van Schrojenstein Lantman-de Valk
Maastricht University, The Netherlands

9.00 am – 5.00 pm, Thursday 9th July, 2009

Charles Blunt Conference Room
Royal Rehabilitation Centre Sydney
59 Charles Street, Ryde, 2112

Non members of CDDS $132.00
Financial members of CDDS $121.00

Click here to download the brochure including the day's program and registration form.

Closing date for registration Thursday 2nd July 2009

All enquiries to CDDS: Margaret on (02) 8878 0500 or E-mail:

PWD budget analysis

Peak disability organisation People With Disability has published a Special Edition E-Bulletin, Issue 53, on the Australian Government Budget 2009/2010

This E-Bulletin talks about:

  • Social Security Payments
  • Disability Services and Programs
  • Employment
  • Health
  • International Aid

Monday, 1 June 2009

iPhone application useful for people with communication impairment

Patricia Bauer reports about new Apple iPhone application that allows the device to be used as an assistive communication device at much less cost than existing dedicated devices.

See here for a previous post about an Auslan sign language application.

June 2009 Update; Winter 2009 Newsletter; Speak UP! Issue 33

Down Syndrome NSW monthly and quarterly publications are released today. Web editions are located here:
Print editions will be posted to subscribers this week.