Address details

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

Wednesday, 31 August 2011

Tuesday, 30 August 2011

Promotion Day about Services for People with a Disability: Inner West

Tom Foster Community Care, Marrickville and Inner West Disability Support Group are hosting an information day on services for people with a disability.

This day is aimed at residents who live in Marrickville and the Inner West areas. It’s an opportunity to come together to enjoy a free BBQ and information session.

Tom Foster Community Care
11-13 Darley Street Newtown
10 am -1 pm Thursday 22 September 2011

For more information please contact Losena Kapeli on 9335 2186 or

Source: IDEAS NSW e-News Issue 25, 29th August 2011

Monday, 29 August 2011

Relationships: from ‘being there’ to belonging

Resourcing Families event, presented by Janet Klees

Thursday 6 October 2011

West Ryde

Dreaming of a life full of meaningful connections and relationships for a person with developmental disability? 

International speaker, Janet Klees, will move beyond the theory and provide ideas and strategies for enriching the life of a person with developmental disability through relationships.

It will be a great opportunity to gain some simple and practical tips that will be useful in a whole range of contexts.

See the flier for more details about the event, and about Janet Klees.

Registrations close on Friday 23 September or when places are full.

Friday, 26 August 2011

How come you don't want one?

The Conversation is a website that encourages academics to comment on a wide range of issues "from the curious to the serious". 

Jan Gothard 's article How come you don’t want one?: Living with Down Syndrome, published today discusses her book Greater Expectations, published in March this year, and why she wrote it, in the context of how much attitudes about disability in general and Down syndrome in particular have changed (and gives some stark examples of still-alive prejudices), and how far we have to go to be truly inclusive.

Thursday, 25 August 2011

Library Thursday: new books

A parcel of new books, and some extra copies of popular titles arrived in the library this week:

A time to learn, Maureen Kreig – an introduction for parents

I have Down syndrome: taking care of myself, Jenny Bryan – information presented from the point of view about a person with Down syndrome.  For older children and teens.

The shape of the eye, George Eistrrich – a father's memooir about raising a child with Down syndrome.  Reviewed here.

Additional copies of these books have been added to the collection:

I know someone with Down syndrome
The Down Ssndrome transition handbook
Same lake different boat

Members can contact the Down Syndrome NSW library to arrange a loan

Tuesday, 23 August 2011

Literacy for Life: Speech Pathology Week 2011

Speech Pathology Australia has chosen 'Literacy for Life' as its theme for Speech Pathology Week, this week.  The first of the case studies linked from the Speech Pathology Week webpage is the story of a special school in the Riverina making a particular commitment to increasing literacy skills amongst its students, using the Four Blocks approach.
Perhaps this week would be a good time to acknowledge the difference a speech pathologist has made/is making to the person with Down syndrome that you care for, and to thank them.

Participants needed for review of social media accessibility

Media Access Australia, supported by the Australian Communications Consumer Action Network, is researching how people with disabilities use social media.

Participants are invited to share their experiences and any advice that could benefit others. This accumulated knowledge will then be turned into resources available to everyone.

The research will focus on the most common social media and blogging platforms and how people with disabilities use them, with or without assistive technology.

If you’d like to contribute to the project or would like to find out more email or tweet @mediaaccessaus by 31 August 2011

Cultivating Arts and Disability: funding opportunity

Cultivate is a new professional development fund for Australian artists with disability.
Cultivate will provide seed funding to artists who want to further develop their professional artistic practice with the aim of being better placed to pursue a professional artistic career and to compete for funding in general arts funding programs.

Grants of up to $8,000 are available for the costs associated with developing your professional practice as an artist. This could include specific skills or professional development opportunities including mentoring.

For more information about Cultivate, visit the Arts Access Australia website.

Applications close Monday the 12th of September 2011.

Applicants are encouraged to contact Arts Access Australia prior to submitting your application. They can help answer questions about your application or support material and give you information on how to put together an effective application.

Monday, 22 August 2011

A second CDS-supported event: 26th September

Living the Dream: Realising Personal Aspirations
L’Arche Australia seminar supported by Centre for Disability Studies, University of Sydney

Monday 26 September 2011
10.00 am – 12.30 pm

Contemporary disability policy gives prominence to person centredness as a mean of people with intellectual disabilities realising their full potential. In Australia, L’Arche has developed a robust personal planning process to support members with an intellectual disability to realise their aspirations. This process is underpinned by L’Arche’s foundational commitment to supporting people with and without disabilities to form and maintain mutually transforming relationships and is called ‘Remembering, Celebrating & Dreaming’.

This workshop will detail this innovative approach to person centred practices. It offers a creative, practical and celebratory response to each person as they develop a plan, which reflects who they truly are. The workshop will first place the ‘Remembering, Celebrating & Dreaming’ process in context by detailing L’Arche as an International service provider. The RCD process is designed as a longitudinal progression that incorporates both casework and case management models of service. It values individuals’ personal histories, celebrates who the person is and their talents while honouring their aspiration to lead a fulfilled life. It will also explain the fundamental principles of L’Arche. One of the people who has participated in ‘Remembering, Celebrating & Dreaming’ process will discuss their personal aspirations.

George Durner is an American and a graduate of the University of Loyola in New Orleans, Louisiana. Today, he lives with his wife, Danielle, in an L’Arche community in France and is coordinator of training for the International Federation of L’Arche communities, founded by Jean Vanier. From 1986 to 1989, George worked for the Georgia Advocacy Office in Atlanta, Georgia, and was responsible for the Citizen Advocacy program offices throughout the state.

David Treanor has just submitted his PhD thesis for examination. His thesis explores the phenomenon of friendship and how relationships between people with and without intellectual disabilities are overlooked in the research arena. David argues that meaningful friendships can and do exist between people with and without intellectual disabilities provided that both people are willing to take a transformative journey together. David is the National Co-ordinator for L’Arche in Australia.

Non-member of CDS: $22 (includes GST)
Financial member of CDS: $16.50 (includes GST)
People with disabilities and family members: No charge
(Registration includes morning tea)

Charles Blunt Conference Room, Royal Rehabilitation Centre Sydney,
227 Morrison Road, Ryde

Bookings and further information
Phone: 8878 0500  Email:  Fax: 9807 7053

CDS event 13th September

Life after school: Post Secondary Options
One day workshop
Presented by Darcy Elks & Patricia O’Brien

Tuesday 13 September 2011

10.00 am to 3.00 pm

Ryde Eastwood Leagues Club
Typically graduation from secondary school is one of the most exciting times of life. However, for many young people, men and women with intellectual disabilities it can be a time of great vulnerability. Instead of life “opening up” it may become smaller and insular.

Fortunately, this does not have to happen. Many young adults with disabilities and their families have a big and positive vision of an interesting life – with lots of exploration and opportunities to grow, meet new people, and go to new places – including accessing typical post secondary education opportunities, e.g. attending a TAFE College, University, and enrolling in Continuing Education Courses.

This workshop will:

  Give participants an opportunity to think about typical pathways and experiences that are
available upon leaving school, both in Australia and overseas
  Offer ideas on how to develop a big vision of a big life
  Share experiences that others have in pursuing a life of possibility since leaving school and in
later life
  Discuss practical ways of making a vision a reality e.g. use of personalised packages, recruitment
of others to assist – paid and unpaid supporters, etc.

Who should attend:
People with disabilities, teachers, family members, advocates

Darcy Elks is an educator, consultant, evaluator and advocate. She is passionate
about creating inclusive communities where we all are welcome and where we can
each use our gifts for the good of one another. Over the years, Darcy has
developed and taught many different workshops that focus on the roles that we
can all play in supporting people to lead valued lives. Darcy is the mother of three
children, one of whom has a disability who has graduated from high school in the
United States and who is now attending university and working.

Professor Patricia O’Brien is the Director of the Centre for Disability Studies, University of Sydney and has had experience in supporting people with intellectual
disabilities to be included within University courses both in New Zealand and

People with disabilities/Family members: $25 (includes GST)
Teachers/Advocates / other professionals: Non-member of CDS: $60 (includes GST)
Financial member of CDS: $55 (includes GST)
(Registration includes morning tea and a sandwich lunch)

Bookings and further information
Phone: 8878 0500 Email: Fax: 9807 705

Saturday, 20 August 2011

Triathlon Pink: join/support Lucy's Team

It is not unusual for people with Down syndrome to receive support from and within the community - here is a young woman who is using her particular talents and interests to demonstrate that support is a two-way street.

Lucy is a keen sportswoman with Down syndrome  For the second time, she is competing in an event that most of us will never do ... and she has issued an invitation to join her, either by running, swimming and cycling beside her, or by supporting her fund-raising effort for breast cancer, along with other sportswomen.

Triathlon Pink
8th October 2011
Sydney Olympic Park
A fund-raiser for breast cancer. Join Lucy’s Team in the all-female triathlon.

If Lucy, who has Down Syndrome, and her mum, who is over-55, can do it,  SO CAN YOU!

We do the Short Triathlon, which entails:
  100m swim,
  3km bike ride (no hills!)
  1km run (or walk if you prefer).

The start is by waves so there are always ladies ahead of you and others behind you…..there are all shapes, sizes and ages, it is as challenging as you want it to be!

Join Lucy’s team, enrol on-line  ...  and/or raise funds by giving details of the team web-page to your friends so they can sponsor you

Enquiries: Sarah 9440-1631

(Two weeks before this event, Lucy will be competing in the first National Down Syndrome Down Under Swimming Championship meeting Noose, Qld!)

Friday, 19 August 2011

Do you want to learn more about healthy eating? Please join our group!

Who? We are looking for people who
•   have an intellectual disability
•   are older than 16 years
•   live,  work or volunteer or study in the City of Sydney area

What? • Small group
• Group meets for 1.5 hours - group meets 8 times
• Choose a morning or afternoon group
• There will be healthy snacks and drinks
• You can bring a support person if you want to

NSW Council for Intellectual Disability
Level 1, 418A Elizabeth Street, Surry Hills NSW 2010

Cost? $2 each time or $16 total. If this cost is too much please talk to us.

Please contact Yvette Proud at NSW Council fir Intellectual Disability for more info
Phone:  9211 1611   Email:
The Healthy Eating Program is funded by the City of Sydney.  It is run by a team from COncord Hospital and NSW CID.

Thursday, 18 August 2011

Do you live in the Wagga Wagga area, or know a family that does?

Down Syndrome NSW family support manager Judy Davidson is visiting Kurrajong Early Intervention Centre at Wagga THIS SUNDAY 22nd August, from 1pm.

Families are welcome to come along, enjoy a BBQ meet Judy and other families, ask questions, and find out information on a range of topics.

The event is free, but please contact Judy on tel 02 9841 4401 or group coordinator Cathy Manning at or via Facebook to RSVP.

Down Syndrome News, August 2011: good reading!

The August 2011 issue of Down Syndrome News, published by the USA's National Down Syndrome Congress, has just been posted online.  Another great line-up of articles, including:

Yeah, that's my brother, a fifteen year old's account of attending high school alongside her brother who has Down syndrome

Ten tips for siblings of persons with intellectual and developmental disabilities, written particularly for adult siblings

Cause for celebration! (a regular column contributed by families, about the large and small celebrations families encounter)

Sexuality education is sexual abuse prevention by Terri Coewenhoven, author of Teaching children with Down syndrome about their bodies, boundaries and sexuality (available for members to borrow from the Down Syndrome NSW library)

Book Reviews: The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit (on order for our library), Off We Go! Children’s Series (social stories),  and Cooking by Color: Recipes for Independence

What talents can you bring to an employer or customer? Part 1 of 2, on looking beyond the obvious in creating and/or finding job opportunities.  Here is a tiny sample quote demonstrating deep lateral thinking:

"In addition to skills, it is important to recognize your son or daughter’s unique interests ...
I once helped a man find a job collecting golf balls at a driving range. His mother was concerned he wouldn’t find a job because he was obsessive compulsive about picking things off the ground and floor."

Library Thursday: book Q and A and a much anticipated DVD

Dymocks (the booksellers) hold a regular series of Facebook Chats with authors.  On 3rd August 2011 the featured author was Peter Rix, answering questions about his recently published novel, Water under Water.  You can access the Q and A here - just scroll down to 3rd August. The book is reviewed in the next issue of Voice, due to be published in the first week in September. Copies are available for loan to members from our library now.

The much awarded documentary Monica and David, the story of two young people with Down syndrome deciding to marry, has just been released on DVD in the US, after being launched at  the annual National Down Syndrome Congress in Texas early in August.  It also won the NDSC's National Media Award for 2011. We will purchase a copy for our library collection as soon as possible.  This edition is for educational use (including additional materials) - a regular family-use edition is planned for release around the end of the year.

Read a recent guest blog here, by the director of Monica and David, Alexandra Cordina,  and a young mother's response to the film here, and a second one here.

Wednesday, 17 August 2011

Ignatian Children's Holiday Camp: applications open

We know several children with Down syndrome who have had a wonderful time at the now annual Ignatian Children's Holiday Camp (at St Ignatius College, Riverview) in December - and families who have enjoyed a break knowing that their kids will be well cared for and will have a ball. 

It's on again this year - applications are open until 31st August, for children with a physical and/or intellectual disability from 5 to 15 years of age. There is no cost to parents. the camp is sponsored by the Sony Foundation.

Wordless Wednesday

Tuesday, 16 August 2011

School leavers' event: Central Coast Vocational Support Expo

Wednesday 7th September 2011 10:00 am – 5:30 pm
The Show Room, Mingara Recreation Club, Mingara Drive, Tumbi Umbi, Central Coast NSW

For students, people with a disability, parents/carers and school staff to talk to service providers about post school pathways and options for people with a disability. Children under 18 must be accompanied by an adult.

·   Transition to Work
·   Community Participation
·   Open Employment Options
·   Disability Employment Services
·   TAFE
·   University

For further Information a go to 

Ability Technology – regional information sessions

These sessions will cover technology for personal independence. Modern technology has much to offer people with a disability, to increase their independence, productivity and connectedness.
Key frontiers are:
  • Telephones – mobile and landline
  • Portable Devices – such as iPads, iPods and similar devices
  • Home Control – options for controlling TV, lights, doors, air conditioning, etc
Wednesday SEPTEMBER 14: BEGA
Auswide Projects, Mimosa Room, 163 Auckland Street, Bega

Wagga RSL Club, Mirage Room, Dobbs Street, Wagga Wagga

Training seminar 3:00 – 4:00 pm
This is aimed at therapists and others who work with people with a disability. The seminar will cover issues and options when people seek funding for personal independence technology. There will be a small cost of $20 for attendance.

Public workshop 4:30 – 5:30 pm
This is open to all. Ability Technology will describe and demonstrate a range of new technology options that increase independence, productivity and connectedness.

A very limited number of preliminary assessments / trials of equipment will also be available, for those who book and on first-in basis, at times and venues to be negotiated. Background information must be provided in advance.


Contact Ability Technology for more information and bookings:
Phone: 02-9907-9736    Fax: 02 9907-9599
Mail: 29 Frenchs Forest Rd Seaforth 2092

Source:  IDEAS E-Bulletin Issue 23, July 2011

Monday, 15 August 2011

Disability and Ageing: lifelong planning for a better future Senate Committee's report

The NSW Council of Social Services (NCOSS) has published a useful summary of the recent Senate Affairs  Committee report: Disability and Ageing: lifelong planning for a better future

Key recommendations:
  • Identifying people with disability as a special needs group, and lowering the age of eligibility for people with disability to access aged care services.
  • Reviewing assessment tools used by Aged Care Assessment Teams (ACATs) to assess people with disability.
  • Giving specialised legal and financial support to people with disability and their loved ones.
  • Making resources available to support life-long planning for people with disability, and regulation of particular types of planning.
  • Research on the needs of disadvantaged people, including Aboriginal and Torres Strait Islander people and people living in rural and remote areas.
  • Better communication about and co-ordination of current disability services.
NCOSS summary and response:

Final report from the Senate Committee:

Oral Health Seminar – Sydney Dental Hospital

The Special Care Dentistry Department of the Sydney Dental Hospital will be holding an interactive seminar, targeting oral hygiene care for staff who are working with people with a disability.

The Dental Hospital intend to hold the activity FREE OF CHARGE at the Sydney Dental Hospital (located opposite Central Railway Station) on Wednesday 31st August 2011 between 9:30am and 2:00pm.

Topics will include:

  • How to prevent tooth decay
  • How to prevent gum disease
  • How poor general health/chronic disease can influence oral health
  • How to care for dependant people and motivate them to cooperate
  • Diet and oral care
Interested persons are asked to contact Ms Louise Pettit by telephone on (02) 9293 3313, fax on 9293 3252 or email at: by Friday 19th August, 2011.

If you need further information, please contact Drs Natalie Oprea or Ranbeer Kaur on 9293 3283.

Sunday, 14 August 2011

Community Participation open days - this week, Ashfield and Lakemba

Open Days - the Australian Foundation for Disability (AFFORD)

AFFORD are holding two open days in at their Ashfield and Lakemba Community Participation Programs.

Meet the great staff and clients
Wednesday 17 August
10.00am to 6.00pm
14 Bruce Street Ashfield

For more information call Angela Wilkinson on 0417 250 430

Meet the great staff and clients
Thursday 18 August
10.00am to 6.00pm
38 Croydon Street Lakemba

For more information call Laura Peterson on 0409 911 293

Saturday, 13 August 2011

Softball – A Game for All: Orange, NSW

Join a team or bring a team and have some fun !!
Modified to suit all abilities (10+ yrs)
Softball a game for all aims to enhance and develop skills, coordination and stability for people with a disability. This is a joint project with Orange & District Softball Association and Sport and Recreation.

The program will include:

•  Weekly skill development sessions
21 August – 11 September (Sunday 10am)

•  Competition
22 October – 10 December
at Sir Jack Brabham Park, Orange (Saturday 12 noon)

•  Costs $60 per person

Program includes skill development, equipment use, team uniform for competition and trophy (weekly payment option - $5/wk)


For further information please  contact: Craig Myers 0429 623 252Sport & Rec, McNamara Lane, Orange  6362 6623

Friday, 12 August 2011

Website of the week: Every Australian Counts

This week's Website of the Week has to be Every Australian Counts! after a very successful campaign.

The commitment by the Australian Government to implement the National Disability Insurance Scheme has been a historical shift, but the campaign to see it through is not over yet.  Every Australian Counts is the place to keep up with responses to the announcement, developments in its implementation, analysis on the Productivity Commission's Report into Disability Care and Support, and the media surrounding every aspect of it.

It is here that you will be able to keep track of events, and media such as:

Radio National's Rear Vision podcast and transcript from 10th August, on the history of disability in Australia, in light of the NDIS.

Q & A (ABC TV) on Monday 15th August:  Stella Young from Ramp Up will be a guest.

Transitions in Education Inquiry: submission date extended to 26th August

Submissions to the NSW Government's inquiry into Transition support for students with additional or complex needs and their families between stages in education will now be accepted until 26th August, rather than closing today (12th August) - giving us all an extra two weeks to gather our thoughts, and have our say.

If you would like to contribute to the Down Syndrome NSW submission, you can still do so:  email, by 19th August.

The Inquiry's home page has all details on how to make a submission, and time lines.

Thursday, 11 August 2011

Library Thursday: In the journals

Our library collection includes not only books and videos, but a small collection of journals that publish material of interest to people with Down syndrome and their families.

As an information service, we also monitor the the literature related to Down syndrome from various sources internationally, to help us to answer your inquiries. Journal articles tend to be more up-to-date (because the publishing time is shorter than for most books), and more narrowly focused, so they are a useful addition to other resources.

An annotated list of recent journal articles is published regularly in our quarterly members' journal, Voice. The 'In the journals' pages up to the most recent issue are now available online here. Members can contact the library to arrange access to journal articles.

One of our favourite magazines Down Syndrome News, published by the National Down Syndrome Congress (a US organisation) is now available online, from the June 2011 (Vol 34 #3) issue. It always includes articles from both families and from well-known professionals, aimed at a family readership.  It is one of the journals Down Syndrome NSW subscribes to, so print copies are in our collection.

Disabling Justice: Social Justice, Human Rights and Mental and Cognitive Disability in the Criminal Justice System

Professor Eileen Baldry, NCOSS (NSW Council of Social Services) President is presenting a lecture on "Disabling Justice: Social Justice, Human Rights and Mental and Cognitive Disability in the Criminal Justice System”. 
6 pm, 15th September 2011
University of NSW, Kensington

More information: Flyer

Wednesday, 10 August 2011

NDIS endorsement and implementation

A very significant day for people with disabilities, their families, carers and the 'disability system' across Australia - the Australian Government has released the final report from the Productivity Commission's Inquiry into Disability Care and Support, and in a press event in Melbourne has announced how it will implement the recommendations to establish a National Disability Insurance Scheme.

The joint press release making the announcement from the Prime Minister, Minister for Community Services, Assistant Treasurer and parliamentary Secretary for Disabilities and Carers

The response from Every Australian Counts, the campaign that has largely been responsible for lobbying for an NDIS.

A new graphic from Every Australian Counts

The final Productivity Commission report is available to download here.   The Key Points are summarised here. An Executive Summary, Plain English and Easy English editions are available online, and print editions can be purchased.

State Government responses to the announcement

How it's being reported in the media:

The Australian
ABC News (TV)
ABC News (web)

Other responses:

People with Disability (Australia)
Federal Shadow Minister for Disabilities (Mitch Fifield)
National Disability Services
Australian Council of Trade Unions
Down Syndrome Victoria

Wordless Wednesday

Tuesday, 9 August 2011

Buddy Walk - Australia 2011: Newcastle

Just a few days to City2Surf 2011: you can still sponsor 'our' runners

Congratulations to those have registered for this year’s City 2 Surf, and have set up their ‘hero’ pages to raise valuable funds for Down Syndrome NSW. Click on their links below to sponsor them.

If you have difficulties or questions, just call Priscilla on 02 9841 4404 or email
All the best for your training and on the day!

Monday, 8 August 2011

Media: cabinet discussion of NDIS today; pension reform

The Sydney Morning Herald reports today that "... Federal cabinet is due to discuss the (proposed National Disability Insurance Scheme) today and it is expected to go beyond original expectations of a trial scheme in one state," and that NSW is now expected to be part of the trial. Read more: here.

The Weekend Australian published an in-depth background report on the NDIS by Sue O'Reilly, highlighting the roles of John Walsh in Sydney, and Bruce Bonyhady in Melbourne in putting together the current proposal leading to the Productivity Commission's inquiry, starting from a personal profile of John Walsh, and his personal experience of disability.

Today's Australian reports on reform to Disability Support Pension eligibility here.  It is not anticipated that the reforms will affect most people with Down syndrome, but the reforms will be monitored closely by the National Welfare Rights Network and disability organisations. Currently people with Down syndrome are among those who can apply for a Disability Support Pension from 16 years of age.

Family Getaway - Chinese families

Chinese Parents Association - Children with Disabilities Inc
Family Getaway

7th - 9th October 2011
Friday 4pm to Sunday 3pm

Milson Island, Hawkesbury River via Brooklyn, 2083

Booking is essential, closing date for registration:15/9/2011
Accommodation limited, first in first served

Enquiries:9784 8120 Tues & Thurs 10am-3pm or 0406 233 222 (Mandy)
Bilingual flier

Saturday, 6 August 2011

Art exhibitions: August/September: Chatswood, Grafton, Sydney

Inspiration Explored art exhibition by people with intellectual disability

6 - 16 August, 2011

Hosted by Chinese Parents Association - Children With Disabilities Inc, assisted by Australian College Of Chinese Painting And Calligraphy and sponsored by Northside Community Forum Inc.
Chinese Cultural Centre NSW, Garden Level, Citadel Tower,
799 Pacific Highway corner of Thomas St, Chatswood.
Bilingual flier.

Fairytales in Fairyland showcases the work of twelve artists from the North Coast of New South Wales who provide contemporary visual twists in their use of the fairytale set in Australia.
The paintings, prints, ceramics and sculpture include interactive works to allow access for people with disability.
Grafton Regional Gallery until 28th August
Details here.

Studio ARTES exhibition at The Mint 10 Macquarie St, Sydney
Opening 1 Sep 2011, public exhibition  2nd September - 27th October 2011
Experience a variety of Historic Houses Trust sites through the work of artists from Studio ARTES Northside Inc. Following the success of their profile exhibition within the 2009 Garden Music Festival, members from Studio ARTES were invited to undertake another residency with the HHT. The opportunity to work onsite has enabled this collective of artists to produce a body of work which reflects both their fresh vision and a sense of the relationship each member developed with the historic venues in which they worked. All paintings available for purchase.  Details here.

Source: Accessible Arts NSW

Growing older with Down syndrome

There were a lot of stories and and lots of experience shared at our third Growing older with Down syndrome seminar, with 35 family members attending on Saturday (30th July).  We covered a lot of ground, including health matters. Our thanks to Danielle White from Alzheimer's Australia NSW for joining us for part of the day to discuss the difficult issues raised by the increased risk of developing dementia faced by older people with Down syndrome and their families.

A listing of specialist health care services for people with developmental disabilities in NSW is available from our website, here.

The Growing older with Down syndrome pages on our website are here, including online editions of our Growing older with Down syndrome newssheet (print copies are available upon request - contact Miriam Parker at Down Syndrome NSW, on 02 9841 4407 or )

Friday, 5 August 2011

Website of the week: (US) National Down Syndrome Congress

The National Down Syndrome Congress (NDSC) is a US organisation, based in Atlanta, Georgia.  This weekend their annual 39th annual Convention is being held in San Antonio, Texas, and will attract up to delegates, most of them families with a member who has Down syndrome.  The extensive programs includes presentations by some of the best known names in the international Down syndrome community. So it is timely to highlight their website - and we'll be looking out for new additions from the Convention.

Like many websites about Down syndrome, there is a range of excellent information pages, many of them written by well known and respected US experts, as well as information about local events and campaigns.  At Down Syndrome NSW, we draw on NDSC information resources regularly, including the magazine, Down Syndrome News, which is now available online.

One of the outstanding features of the NDSC website is the Physicians Guide - a series of print and video resources for physicians in preparation for delivering the diagnosis of Down syndrome to families, based on the research and experience of Dr Brian Skotko, who presents some of the advice.

Online survey: Tellus and you could win an iPad!

Purple Orange is the shopfront of the Julia Farr Association. Through research and dialogue with people living with disability, Purple Orange develops policy and practice in support of people living with disability getting a fair go at everything that life has to offer.

We are seeking your assistance with our second Tellus survey – developed by Purple Orange to gather information from people living with disability about their lives. 

Tellus was born from our desire to build a collective understanding of the lived experience and views of people living with disability, and to use this information to influence positive change.

Findings from the first Tellus survey informed a number of policy submissions and produced three Tellus reports; Having Choice and Control, Accessibility, and Disability Funding – Where should it go?

Everyone who has completed the current survey by 15 August 2011 will have a chance to win an iPad. Any person living with disability or any member of the disability community is invited to participate, and all information will be treated in a confidential manner.

There are several ways to participate:

·  You can complete the survey online by clicking here or cutting and pasting the following link into your browser -

·  You can call Purple Orange and give your answers verbally over the phone.

·  You can obtain an electronic version from Purple Orange which can be completed on a computer, saved on a CD and returned to us.

·  You can obtain a hard copy version and a reply paid envelope from Purple Orange.

If you have any questions about participation or the way that information is collected, stored or used, or would like to make a comment about the survey’s content, please contact Alicia Fidock on (08) 8373 8333, freecall 1300 857 327, or email

Source: Julia Farr e-Newsletter  Issue 5, 4th August 2011

Two Nations: The Case for a National Disability Insurance Scheme

This  long article by Anne Manne  published free online by The Monthly, is well worth the reading, very well written. There have been a lot of media stories about an NDIS, many of them excellent, especially with the delivery of the Productivity Commission's final report to government on 31st July - this is one of the best. Check in to www.everyaustralian for all the campaign news.

Thursday, 4 August 2011

2 temporary full time Speech Pathology positions available NOW for 6 months (Parramatta)!

Mother and child with staff memberAre you interested in working with children and young people with intellectual disabilities?
Do you enjoy working within a team of professionals like occupational therapists, psychologists, physiotherapists and behaviour clinicians?

Do you have a driver's licence?

 Well this is the job for you!

Please contact Melissa Klobucar on 9841 9557
Ageing, Disability and Home Care
Department of Family and Community Services

Draft legislation: Making it Easier to Contribute to Special Disability Trusts

People with severe disability and their carers are being asked to comment on draft legislation that will remove income tax barriers to make it easier for people to contribute to a Special Disability Trust (SDT).  Comments close on 12th August.  Press release from Assistant Treasurer Bill Shorten and Senator Jan McLucas:

In releasing the exposure draft legislation and draft explanatory material today, the Assistant Treasurer, Bill Shorten said "These measures deliver on the Government's commitment to help support people with severe disability, their families and carers."
The amendments make SDTs more beneficial for families by:
  • Providing a capital gains tax (CGT) exemption for assets transferred into an SDT for no consideration
  • Extending the CGT main residence exemption to SDTs
  • Providing a CGT exemption for the recipient of the principal beneficiary's main residence, if their ownership interest ends within two years of the principal beneficiary's death
  • Ensuring equivalent taxation treatment amongst SDTs established under different Acts.
These changes will apply from the 2006-07 income year, to align with when SDTs were first able to be established.

Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas, said "Special Disability Trusts are another tool for carers and families of people with a disability to assist in future planning to support their loved one," Mr Shorten said "The Government remains committed to a strong process of consultation on tax measures and is conducting a two-week consultation period on this legislation to ensure it is introduced into Parliament as soon as possible."

Copies of the consultation materials are available from the Treasury website. Consultation closes on 12 August 2011.

Wednesday, 3 August 2011

NSW budget and health of people with intellectual disability

The NSW State Budget is due to be delivered on 6th September. NSW Council for Intellectual Disability is asking for our support:

Now is the time to influence the 2011 NSW budget. Could you send an email to Health Minister Skinner urging the Government to fund more intellectual disability health services?

You could make these points:

§   The $500,000 in the 2010 budget was a small first step towards the statewide network of intellectual disability health services that is needed to backup mainstream health services. It provides one new small service in the Illawarra.

§   The Government needs to steadily build on this initiative by providing additional funding each year.

§   Anything relevant to your situation and local area, eg there is no service near you, the benefit you have seen to people with intellectual disability when they can access specialised services for complex health problems.

Please copy NSW Council for Intellectual Disability into emails that you send –

Mrs Jillian Skinner, MP
Minister for Health
Level 31 Governor Macquarie Tower
1 Farrer Place

Phone: (02) 9228 5229, Fax: (02) 9228 5877,

Tuesday, 2 August 2011

Media on the National Disability Insurance Scheme

Carers welcome path to better quality of life
A lovely photo of Emma Breen, with her sister and her mother (taken by Jane Dempster), accompanies this well-told story of the concerns of carers of older people with disabilities  (written by Stephen Lunn) in today's Australian, and their hopes of an NDIS, following the Productivity Commission's inquiry and delivery of their report.

Opinion piece by Every Australian Counts Campaign EO, John Della Bosca, from the Sydney Morning Herald

Down Syndrome NSW Calendar 2012 - orders now open

... is being printed, and will be available early in August.
Download an order form here, or you can order online.

Monday, 1 August 2011

Productivity Commission's final report into Disability Care and Support was delivered to the Australian Government yesterday (31st July). The Inquiry's website says that it will be released to the public at the determination of the Government. It is thought that the implementation  of the report will provide a National Disability Insurance Scheme, that will be trialled in Victoria.

Did you email us between Thursday 28th and Monday 1st (this morning)?

We had a problem receiving email via our email addresses late last week.  If you emailed us between Thursday afternoon and the weekend, we might not have received it, and you will not have been notified by a "bounceback".  

Our email functions are now all back to normal, so if can send your message again, we will attend to your enquiry.

(image courtesy of

We apologise for any inconvenience.

Fit Plus: Oatley

Recreation Sports and Aquatics Club (RSAC) is running a new 6 week series of fitness and health classes for people with disabilities and their carers:
Fit Plus
BodyHealth Fitness Centre, Oatley

...  starts August 12th

Bookings and further information:  Regina 9580 8855 or RSAC 9790 500