Address details

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

Wednesday, 29 February 2012

Not quite Wordless Wednesday: meeting the Prime Minister

Tara Elliffe was pleased to meet the Prime Minister, Julia Gillard when she visited FRANS in Croydon, earlier this month, and to present her with flowers.

The local press reported that "... emotions ran high as the struggles of inner west families living with disability were heard ...." and that the PM  " ... hoped to change that sentiment with the prospect of the National Disability Insurance Scheme (NDIS)."  The transcript odf the Prime Minister's doorstep interview is here.

Arts Activated Conference, Sydney 2012: call for papers

Accessible Arts is calling for proposals for papers, performances or workshops that address the 2012 Arts Activated Conference theme and topics. Other topic ideas are welcome, but all proposals must clearly show how they address the conference theme. Submissions can be in in written, audio or video formats. Proposals from people with disability or those that involve people with disability are encouraged. 
All proposals must be received by Accessible Arts by close of business Monday 16 April 2012.
Further information about the submission process is here.
Desire and Destination30 – 31 October 2012The Concourse, Sydney 409 Victoria Avenue Chatswood NSW
The third Arts Activated Conference presents an interactive exploration of access to the Arts as a practical outcome of Australian cultural life. Artists and advocates, practitioners and producers, arts administrators and policy-makers will connect, debate and influence the vision of full social inclusion in all areas of the Arts nationwide.

Tuesday, 28 February 2012

Gillard Makes NDIS a Priority After Leadership Victory

From ProBono News, today: 

Prime Minister Julia Gillard has pledged to make the National Disability Insurance Scheme, NDIS, a priority following her resounding leadership victory in Canberra yesterday.
After the 71 to 31 vote win against Kevin Rudd, Gillard told the media that putting the framework in place for a National Disability Insurance Scheme as one of her main goals.
"As we build great new vehicles of fairness, like a National Disability Insurance Scheme, I'm impatient to get on with that work," Gillard said. "I will be getting on with that work today. We haven't got a day to lose."
However, the Prime Minister conceded that while she is very committed to building a National Disability Insurance Scheme she said she is not underestimating the complexity of the funding arrangements around the scheme ... read on here.

March 2012 events recap

March is usually busy, in the lead up to World Down Syndrome Day - this year the calendar looks especially full for both metropolitan and regional NSW.  Here's a recap of links to the events we have listed so far, for March:

World Down Syndrome Day
21st March 

UN Conference 
21st March 
New York

Down Syndrome NSW events:

T4321: across NSW

Blue Mountains parents morning tea
12th March

Playing to their strengths (at school) 
Seminar for teachers and school personnel
23rd March

Other organisations' events:

Drawn to the line
Art exhibition
until 10th March 
Goulburn, NSW

Create It! Art Classes
starts 3rd March 

How to Make and Keep Friends 
Down Syndrome Program, Boston Children's Hospital
6th March (then available online)

Supported Living seminars
(Family Advocacy and NSW CID)
1st - 7th March
Regional NSW

Trevor Parmenter Lecture
Prof Tony Holland
7th March 

Australian Association of Developmental Disability Medicine Conference
8th - 9th March 

Emergency First Aid for Carers course
7th - 8th March 
Hunter (Maitland)

More Choice and Control
Resourcing Families
9th March
West Ryde

Supported Living seinar for Arabic speaking community workers
Family Advocacy and Arab Council Australia
8th March
Canterbury, NSW

The how and why of school inclusion
Family Advocacy
13th - 16th March
Newcastle, Sydney, Wollongong

Healthier Lives seminar
15th March 
Armidale, NSW

Towards a good life for people with learning disabilities
Public lecture
21st March 
University of NSW 

After school - what then?
Family Advocacy
Throughout March 
Across NSW

Relationships and Private Stuff 
Throughout March 
Sydney and regional NSW

For information about arts events across NSW, visit Accessible Arts.

Learning Links 2012 workshops calendar

The Learning Links 2012 calendar of workshops for professionals and parents is available to download.

Each workshop description clearly indicates the intended audience. topics range from sessions on specific disorders (including Down syndrome) to more general issues about schooling, behaviour and development in children with disabilities, and support for families.

Workshops are often available at several venues across Sydney, and on several dates, to accommodate a wide audience.

Learning Links is non-profit community based organisation providing services designed to "... enable children with disabilities and learning support needs, and their families and communities, to realise their individual potential."

Monday, 27 February 2012

Supported Living Fund seminars for Arabic speaking workers and families

to run free seminars for the Arabic speaking background community

The first seminar is targeted at Arabic speaking background community leaders and community workers to assist them to understand supported living and the Supported Living Fund so that they are well placed to assist  Arabic speaking background to apply on behalf of their son or daughter with disability.

Thursday 8 March
9:30am to 2:30pm (register from 9am)
Canterbury (venue confirmed upon registration)

This will be followed by 2 seminars for families that will be planned in conjunction with Arabic speaking background community workers who attend the first seminar.

For more information and to register, call 9869 0866 or 1800 620 588 or email enquiries@family‐
  • Flyer -  registrations close Thursday 1 March

Disability Innovators Awards

Innovators in the disability service industry will now be recognised in the inaugural NSW Disability Industry Innovation Awards.

Minister for Disability Services, Andrew Constance, launched the awards at the National Disability Services (NDS) annual state conference in Sydney.
“We are in the midst of the single biggest reform to disability services in NSW, with the system as we know it going to look vastly different following the expansion of person-centred approaches and individualised funding models,” Mr Constance said.
“A change of this magnitude requires the disability services sector to think differently and innovatively about how we approach the delivery of services in order to best respond to the needs of people with a disability, their families and carers.”
“The NSW Disability Industry Innovation Awards program will showcase and reward individuals and service providers that truly think outside the box in order to achieve real and lasting outcomes for people with a disability.”
The NSW Disability Industry Innovation Awards are an initiative of the NSW Government in partnership with National Disability Services NSW.
The particular focus of these strategies is a commitment to implementing a person-centred service system in NSW where people with a disability are at the centre of decision making, and community based non-government providers have the necessary systems and capabilities in place to make the changes that will be required.
The award categories cover innovation in getting positive outcomes for people with a disability and in organisational change.
More information about award categories and the nomination process can be found here on the NDS website.  Nominations close COB on Friday, 20 April 2012. Winners will be decided by an independent judging panel comprising industry professionals.
An awards ceremony will be held in June at Parliament House Sydney.

Saturday, 25 February 2012

Nepean/Blue Mountains Morning Tea for parents ...

... of children with Down syndrome

Second Monday of the month (next March 12th 2012) at 10.30am

For more info contact: 
 Krystle Coburn – 0421 157 907 or email
Hannah Edwards – 0412 026 548 or email

Friday, 24 February 2012

Website of the week:Joan Guthrie Medlen MEd RD

Joan Medlen, a registered dietician, and mother of a young man who has Down syndrome, autism and coeliac disease,  is the author of the highly respected and readable Down Syndrome Nutrition Handbook, popular presenter of workshops on various aspects of food, feeding, and healthy eating to families and to people with disabilities, and health advocate.  Her website provides a range of services, including two blogs, Practical Wisdom and Health Literacy, and hosts the archives of Disability Solutions magazine.

Good food - bad food? is Joan's latest blog post, on more practical and workable alternatives to the concepts of 'good food' and 'bad food' in promoting a healthy, varied diet to people with intellectual disabilities.

Two more events for the calendar

Events of interest to people with Down syndrome and their families are beginning to stack up - we'll post a recap of links to events during March early next week.

An event for Arabic-speaking families with children who have a disability 
presented by Multicultural Health/ Diversity Health Institute and ADHC
29 February 
Further enquiries should be directed to, or phone 8838 2173

Towards a good life for people with learning disabilities 
- a public lecture
21st March
4:30pm - 5:30pm
Room 119, John Goodell Building University of NSW
Further information, and link to registration here.

While there have been radical changes in policy and practice in relation to people with intellectual disabilities over the past 30 years, research has revealed that many people still lead isolated and poor lives in which they lack personal agency. This lecture draws on how we have thought about a good life philosophically to explore some of the reasons why it might be difficult for people with intellectual disabilities to attain one. The lecture considers the following questions: What does it mean to lead a good life? How do we decide when life is good for ourselves or for others? Is it possible to ‘construct a good life’ for someone else? What factors may support people with intellectual disabilities to lead a good life?

lecture will be delivered by Kelley Johnson,  Professor of Disability: Policy and Practice, Director of the Norah Fry Research Centre at the University of Bristol. 

Thursday, 23 February 2012

National Year of Reading: reading research at Down Syndrome Education International

The work of Down Syndrome Education International is well known to most of our readers. These two links highlight the very substantive role DSE has played in developing knowledge about literacy skill development in children with Down syndrome, appropriate for these early days of the school year here in Australia, in this National Year of Reading:

Dr Kelly Burgoyne is a research psychologist with Down Syndrome Education International in the UK.  She gave us permission to reprint her article Reading the evidence, an overview of the latest research into reading skills development in children with Down syndrome, in the June 2011 issue of our quarterly journal  Voice (published in collaboration with Down Syndrome Victoria).

Professor Sue Buckley is another internationally renowned research psychologist at Down Syndrome Education International.  Video and presentation notes from a full day presentation for the Down Syndrome Association of Northern Virginia in July 2008, including segments on literacy development are available here on the Blueberry Shoes website.

The latest updates on current and ongoing research at Down Syndrome Education International are regularly presented on their website and via webinars, accessible world-wide, and at face-to-face events.

If you have a story about reading and a person with Down syndrome that you would like to share, we'd like to hear it - contact us via

Library Thursday

These two new resources of particular interest to families and those who support families are on order for our library - we will notify you when they have arrived.  Annotated lists of our entire collection are available here. Contact our library:

  • Bloom - finding beauty in the unexpected,  by Kelle Hampton, is scheduled for publication early in April, by Harper Collins.  It is described as a memoir of the year of her daughter who has Down syndrome.  From the publisher's note:

... From the outside looking in, Kelle Hampton had the perfect life: a beautiful two-year-old daughter, a loving husband, a thriving photography career, and great friends. When she learned she was pregnant with her second child, she and her husband, Brett, were ecstatic. Her pregnancy went smoothly and the ultrasounds showed a beautiful, healthy, high-kicking baby girl.

But when her new daughter was placed in her arms in the delivery room, Kelle knew instantly that something was wrong. Nella looked different than her two-year-old sister, Lainey, had at birth. As she watched friends and family celebrate with champagne toasts and endless photographs, a terrified Kelle was certain that Nella had Down syndrome — a fear her pediatrician soon confirmed. Yet gradually Kelle's fear and pain were vanquished by joy ...

A video preview is available here.  

Kelle Hampton's blog, Enjoying the small things is here - she's a professional photographer so as you would expect, the images she posts are stunning.  It's not all about babies ... take a look at this fabulous photo essay about a Valentines Day dance last week. Highly recommended. (The site is now listed in our Blogroll, so you can visit it often - scroll down the right hand column ->)

  • Stronger Siblings DVD, produced by Siblings Australia (2011)
As promised late last year,  Stronger Siblings can now be previewed online here. Copies have been ordered for our library, and will be available for loan to members shortly. 

Visit Siblings Australia website to download an order form to purchase your own copy.

Wednesday, 22 February 2012


We're barely into the new year, but it is time to start preparing the Down Syndrome NSW Calendar for 2013

As we have for the last 12 years, we invite Down Syndrome NSW members to send in your beautiful and amazing photos with a brief description to Hanna at for them to be in the 2013 calendar. But send them in quick as you only have till 20th April 2012 to do so. 

Please send your photo(s) unedited (we'll do that during the design process) - the best resolution and largest file size you can send will produce the best print results. If you send more than 3 we can't guarantee to use them all, but we'll try to accommodate them all.

Here are just some suggestions for photos you might already have taken, or be able to line up ... at play, at work, at school, summer fun, winter sports, with grandparents, siblings, cousins, with Mum and/or Dad,  friends, receiving an award, just hanging about, dancing (we know you have them!), school formals, sport,  helping at home, with a pet, this year's portrait, Christmas, celebrations, weddings, any party at all.  Or just your favourite photo for the year - can you pick one (or two, or three ...)?

ADHC announces Ability Links

Ability Links NSW an $82 million five-year commitment to expand support services for people with a disability, their families and carers. Ageing, Disability and Home Care has published this Fact Sheet on the initiative.
Minister for Disability Services, Andrew Constance, made the announcement at the National Disability Services (NDS) state conference in Sydney last week.
"248 Ability Links NSW coordinators will be located throughout the state to help people with a disability, their families and carers to plan for their future and support them to achieve their goals by building new networks and accessing supports and services in their community."
"Ability Links NSW is designed to work with people with disabilities under the age of 65 years to build resilience, maintain support networks and access mainstream services enabling them to live a life of their choosing," Mr Constance said.
"It is also designed to build the capacity of local services and community groups to involve people with disabilities in their services and activities on an ongoing basis."
Ability Links NSW will be delivered by non-government organisations with tenders currently open, to be called from suitable providers this month and awarded mid-year.

For further information regarding Ability Links NSW please contact: 1800 605 489.

Tuesday, 21 February 2012

Recent questions and answers on the NDIS in the media

Senator Mitch Fifield (Shadow Minister for Disabilities, Carers and the Voluntary Sector) defends Opposition Leader Tony Abbot's recent remarks about the affordability of a National Disability Insurance Scheme on Ramp Up, yesterday. 

Questions on the NDIS were also put to politicians from both the Government and Opposition on the Q and A panel on ABC TV last night - video here.

Disability Employment Services-Employment Support Service: tenders open

Overshadowed by media attention to the release of the Gonski Report yesterday, Kate Ellis, Minister for Employment Participation, announced the opening of a tender process intended to "strengthen employment services for job seekers with disability": 

Delivering the best possible employment services for Australians with disability

In the 2011-12 Budget the Australian Government announced unprecedented investment in these services and confirmed a competitive tender process for Disability Employment Services-Employment Support Service would be undertaken.

Putting Disability Employment Services out to tender is an open and transparent way of ensuring that the best possible providers are delivering the most effective services to job seekers with disability.

The highest performing providers, those who are operating at a 4 or 5 star level, will be retained with contract extensions but will also be given the opportunity to expand and assist more job seekers in new areas.

The Australian Federation of Disability Organisations and other disability consumer organisations have supported the Government's approach.

The exposure Draft released for public comment today details the arrangements and information on the transition to the new contract in March next year.

The consultations sessions will take place in state capitals and some regional centres from 27 February through to 7 March.

The Employment Support Service is designed to provide immediate access to tailored services for job seekers with disability to help them secure suitable employment.

"We want to give employment service providers new tools, new supports and new ways to assist people with disability to find work and to deliver the best possible employment services for job seekers with a disability," Ms Ellis said.

For information on dates and locations for the consultation sessions from the Exposure Draft visit or call the Employment Services Purchasing Hotline on 1300 733 514.

Stakeholders are encouraged to provide feedback on the Exposure Draft by 5pm (AEDT) Tuesday, 20 March 2012 by email to:

Source: extracted from Minister's media release, 20th February 2012

Video invitation to World Down Syndrome Congress: August 2012, South Africa

Monday, 20 February 2012

Gonski Review released: on funding Australian schools

Today, the Australian Government has released the final report of its Review of  Funding for Schooling, produced by an expert panel chaired by businessman David Gonski, and commonly known as the Gonski Review. At 319 pages, the report will take some digesting. We will monitor the media and other sources for commentary and responses that could impact on students with Down syndrome in particular.

Judith Ireland has compiled 'Gonski Review at a glance' for the Sydney Morning Herald ... here are the parts of her summary that specifically relate to students with disabilities at first glance :

National disability data needed
Gonski says: The National Schools Resourcing Body should determine resourcing needs of special schools catering for students with disability. The government "as a matter of priority" should progress work on collecting nationally consistent data on students with disability.
Government says: More work required. Minister for Human Services Brendan O'Connor will lead the work on students with disabilities.

Establish a Schooling Resource Standard (SRS)
Gonski says: The Australian government [in consultation with other stakeholders] should develop and implement a school resource standard as the basis of government funding. This would include general funding and loadings for additional costs, such as disability and English language proficiency.
Government says: More work required. Education ministers to form reference group to "confirm whether the elements of the Schooling Resource Standard architecture are designed to deliver the highest standards".

Read more here.

Interview with Sarah Gordy, UK actor

This substantial interview with actor, Sarah Gordy was published by the UK Mail Online yesterday. You will recall that Sarah had a role in the last episode of the new TV series Upstairs, Downstairs broadcast on ABC TV the week before Christmas (see this post).

Sarah's own website is here, including links to press about her latest role.

Her role continues in the second series (six episodes this time), about to be screened in the UK. We'll look out for it on local TV schedules.

Australian Association of Developmental Disability Medicine conference, March 2012: family bursaries

Australian Association of Developmental Disability Medicine (AADDM) 2012 Conference, will be held in Sydney on March 8-10, 2012.

AADDM is making available a number of bursaries for family members/carers to attend the conference. The bursary would pay for the registration (single day or 3 days).  

Application for the bursaries is through the conference website:  click on 'bursaries' in the left hand column. The full conference program is also on the website.

President's welcome (from the conference website)
Welcome to the Australian Association of Developmental Disability Medicine (AADDM) 2012 Conference. AADDM is delighted to bring people from diverse backgrounds together to share ideas, and to support and inspire each other.  AADDM was formed in 2002 as a network of medical practitioners aiming to improve the health status of people with intellectual and developmental disability. The association has a substantial track record of contributing to improvements in healthcare through the support of health and disability professionals, as well as through our major contributions to evidence based health policy and practice changes, at the state and national level.
We are delighted to have attracted speakers who are international leaders in their fields and who will no doubt enthuse and encourage ideas and discussion as they explore our three major themes of mental health, physical health through the life span, and health service development.
I hope that the conference progresses the association’s mission to improve the health of people with developmental disabilities throughout Australia; not only by facilitating the transfer of skills and knowledge, but also by delivering you a timely and inspired revitalization. I welcome the diverse backgrounds of the conference delegates and wish to acknowledge how each of you are working to make a real difference to the lives of people with developmental disability.
Nick Lennox
President, Australian Association of Developmental Disability Medicine

United Nations Conference on World Down Syndrome Day

Most of us will not be be present in New York when the first UN observed World Down Syndrome Day is marked but it is good to know what is will happen on our behalf.  Down Syndrome International has issued a press release with the program for the day at the UN.  Please let us know if you are  going to be there!

World Down Syndrome Day at the UN - 3/21 
"Building our Future"  
 Conference to be held at United Nations on 21 March 2012
The first United Nations observed World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in New York, USA, on 21 March 2012 (3/21), with the Conference “Building Our Future”.
Inclusive education, human rights, political participation, changing society attitudes, independent living, how to work with the media and research are some of the topics that will be discussed.
See below the current programme:

World Down Syndrome Day at the UN - 3/21 - “Building Our Future” Conference Room 2 - United Nations Headquarters - New York, USA - 10.00 to 14:30
10.00 to 10:30 - Opening
Welcome and Introductions Penny Robertson OAM, Chair of Board, Down Syndrome International (DSi)
UN Secretary General Ban-Ki Moon - Message on WDSD (to be confirmed)
Head of Brazilian and Polish Missions
Co-sponsor Organisations
10:30 to 11.00 - UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion - The Importance of Global Coordination Effort to Socialize the Convention
Rosangela Berman-Bieler - Senior Adviser on Children with Disabilities, UNICEF
Penny Robertson - Promoting inclusion in schools in Indonesia
Shona Robertson - Australia - Self-advocate - on her education experience
Beatriz Paiva - Brazil - Self-advocate - Carpe Diem Association - Co-author of book on communication accessibility
11.00 to 11:30 - Human Rights and Political Participation of Self-Advocates
Daniela Bas - Director of Division for Social Policy and Development (DESA), UN
Maria Alejandra Villanueva Contreras- Peru - Self-advocate - Fighting for her right to vote
David Egan - USA - Self-advocate - Lobbying for his rights at the US Congress
Ester Nadal Tarrago - Spain - Self-advocate who participated on book on the Convention
11:30 to 12:30 - Changing Society Attitudes - From Neglect and Institutionalization to Protagonist and Living in the Community
Rose Mordi - Nigeria - President of Down Syndrome Foundation Nigeria
K.S. Sripathi - India - State Chief Information Commissioner, Tamil Nadu Government, Down Syndrome Association of Tamil Nadu
Jason Kingsley - USA - Self-advocate, Co-author of book “Count Us In: Growing Up With Down Syndrome”
Emily Perl Kingsley - USA - Mother, writer, activist, author of “Welcome to Holland”
Tom Forester - USA - Director of Residential Services - Association for Children with Down Syndrome (ACDS), Long Island, NY
Michael Brennan - USA - ACDS Group Home Resident
12:30 to 13:00 - The Power of Media - A Guide to Work with the Media to Promote Inclusion
Michelle Whitten - USA - Global Down Syndrome Foundation - How to get media’s attention in a positive, constructive way
Patricia Almeida - Brazil - MetaSocial Institute - Brazil’s experience with WDSD and inclusive actions in collaboration with the Media
Tatiana Heiderich - Brazil/Holland - Self-advocate on her experience as a TV reporter
13:00 to 14:00 - Care, Treatment and Research - What’s new on the DS front
Dr. Jose Florez - Director, Mass General Hospital Down Syndrome Clinic; Director, NDSC; Clinical Advisory Board, NDSS
Dr. Brian Chicoine - Medical Director, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Dennis McGuire - Director of Psychosocial Services, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Edward McCabe - Executive Director, Linda Crnic Institute for Down Syndrome
Margie Doyle - Down Syndrome Research and Treatment Foundation (DSRTF) - Latest on research and how to help studies move faster
14:00 to 14.30 – Launch:
1) DSi 2012 WDSD Global Video Event
2) New WDSD Website
3) DSi UN Convention Global Outreach Programme
4) Book “Change the way you speak and I will change my way of understanding”- By Carolina Yuki Fijihira, Ana Beatriz Pierre Paiva, Beatriz Ananias Giordano, Carolina de Vecchio Maia, Carolina Reis Costa Golebski, Claudio Aleoni Arruda, Thiago Rodrigues, from Carpe Diem Association, Brazil
5) Book “The United Nations International Convention on the Rights of Persons with Disabilities commented by its Protagonists” – By Down España
14:30 – Closing
The event is sponsored by the Missions of Brazil and Poland to the UN and organised by Down Syndrome International with the collaboration of the Brazilian Federation of Associations of Down Syndrome (FBASD), Down España, Down Syndrome Research and Treatment Foundation (DSRTF), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), Special Olympics and the UN Secretariat for the Convention on the Rights of Persons with Disabilities.
Participants from all around the world are welcome, especially those with Down syndrome.
There is no cost for registration. Confirmation to attend the event can be made by the email to
Please inform name, email, age, nationality, relation to Down syndrome (self, parent, relative, professional, teacher, student, friend or other-specify), document number (passport, driver’s license, student´s ID), whether you have a disability and what kind and if you need a disability-related accommodation or service.
Only participants with their names on the list and an ID will be allowed in the building. Space is limited.
About Down syndrome
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues.
About World Down Syndrome Day
World Down Syndrome Day (WDSD) was established by Down Syndrome International in 2006 and has been observed in over 60 countries worldwide to date. It is held on 21 March (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes the genetic condition.
The aim of the day is to raise awareness and understanding about Down syndrome, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.
A resolution to designate 21/3 as “World Down Syndrome Day”, to be observed every year beginning in 2012, was adopted by consensus by the United Nations General Assembly in December 2011. The resolution was proposed and promoted by Brazil, and co-sponsored by 78 UN Member States. From 2012 onwards, the date will be celebrated by all 192 UN countries. To learn more about the resolution process at the UN, visit
For further information on World Down Syndrome Day (WDSD), please visit the DSi website or the WDSD website

Sunday, 19 February 2012

David Allen: Sydney half-marathon runner supporting Down Syndrome NSW

Here is the Everyday Hero page for David Allen who has generously decided to fund-raise for Down Syndrome NSW when he runs the Sydney Half Marathon on 20th May.

David says he is not very fit yet, so some donations would encourage him! He chose Down Syndrome NSW in honour of his cousin Andrew who has Down syndrome.

Thanks you David, and all of your supporters.

How do others in the Australian community see people with disabilities?

The Australian Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) has released a report it commissioned on Community attitudes to people with disability.
"... It was an initial step towards building an evidence base on Australian community attitudes to people with disability, on the impact of these attitudes on outcomes for people with disability and on effective policies for improving community attitudes towards them."

An extract from the Executive Summary:

The literature review investigated the following aspects of community attitudes to people with disability: 
  • community attitudes towards people with disability in general and towards specific groups of people;
  • the relationship between attitudes and the outcomes for people with disability; 
  • the effect of these attitudes on people’s inclusion in specific life domains and attitudes held by groups of people in these domains (education, employment, housing, health, social networks and corrective services); 
  • and initiatives for changing attitudes.

The review found a lot of information about both attitudes and outcomes, but very little about the relationship between the two. Younger people and people with more education tend to have more positive attitudes. It seems clear that negative attitudes, along with misconceptions and lack of awareness, present barriers to social inclusion in various life domains such as education, employment and community participation. Lack of knowledge or training among professionals can make people’s access to services difficult. Familiarity with people with disability—that is, knowing them personally as acquaintances, friends and colleagues—seems the most promising way to increase respect and inclusion, especially if exposure is consistent and recent.

The literature about community attitudes towards specific groups of people with disability indicates that women seem to be more disadvantaged, particularly in the workforce, compared to men, and that people without disability were less comfortable with people with psychiatric disability than with those with physical disability.

This review uncovered little research on links between attitudes and outcomes for people with disability. One study in the US found that lower wage rates for men with physical disability were probably partly a result of prejudice.

In relation to the effect of community attitudes on education, the literature review found that negative attitudes among both teachers and student peers constitute a barrier to inclusive education. Special training for teachers helps to combat these negative attitudes. Some teachers are reluctant to include students with disability in their classrooms, while others are in favour of including students with disability but need training and support to make this possible.

In relation to employment, this review found that negative attitudes and misconceptions among employers prove an important barrier to inclusion, as does the general tendency in society to equate social recognition with paid employment. Many employers feel ill-prepared to employ people with disability, especially those with a mental illness, although they are more ready to support current employees who acquire a disability.

Regarding housing, the attitudes of staff in supported accommodation and of neighbours living close to supported housing can influence the extent to which people with disability participate in the community, rather than simply being physically present.

In the area of health, this review found that negative attitudes can make people’s access to treatment, preventive screening and health promotion difficult. Health professionals sometimes lack training and awareness about disability; for example, they may not know about the physical and mental health needs of people with intellectual disability.

In the case of social networks, studies showed that social inclusion in the community requires active support to establish and maintain connections with family, friends, carers and community members. Informal carers’ attitudes towards the people with disability they care for can vary widely.

Finally, corrective services were included in the literature review because research suggests that people with intellectual and psychiatric disability are over-represented among the prison population. The extent to which this over-representation is an outcome of negative attitudes is unknown.

Changing community attitudes towards disability requires complementary methods, including information and extended personal contact. Policies for changing attitudes are reviewed in Sections 4–7 of this report.

Click here to download the full text of the report (112 pages).

Friday, 17 February 2012

Research: stem cells donated by people with Down syndrome sed to model Alzheimer’s

A good example of how people with Down syndrome are helping to develop knowledge about conditions that will benefit both those and without Down syndrome:

Innovative way to study Alzheimer's disease developed by Cambridge and Boston scientists.

Scientists at the University of Cambridge have developed a new and innovative way to study Alzheimer’s disease in the lab. The stem cell technique, which allows researchers to track the disease over a matter of weeks, could provide a valuable tool for scientists to unravel the complexity of Alzheimer’s and test potential new treatments. The findings, funded by Alzheimer’s Research UK and the Wellcome Trust, will be published today in the journal Science Translational Medicine.

The scientists used skin cells donated from healthy volunteers and those with Down’s syndrome and turned them into stem cells. These stem cells were then used to generate networks of functioning nerve cells in the lab, which resemble the complex wiring of cells in the human cerebral cortex. The cortex, which makes up over three quarters of the brain, houses many of the nerve cells involved in memory and thinking and suffers particular damage during Alzheimer’s.  ... read on at University of Cambridge Research News.    

Online abstract of the research paper published by Science Translational Medicine, Rapid Publication, 15th February 2012, Vol 4 # 121:

A Human Stem Cell Model of Early Alzheimer’s Disease Pathology in Down Syndrome, Yichen Shi, Peter Kirwan, James Smith, Glenn MacLean, Stuart H. Orkin and Frederick J. Livesey 

An article published last week by University of Cambridge Research News describes another current study investigating why people with Down syndrome are more likely to develop dementia earlier, under the supervision of Prof Tony Holland, who will deliver the Trevor Parmenter Lecture in Sydney in March.      

Thursday, 16 February 2012

Library Thursday: your input invited

In a bit of a twist for a Library Thursday post, Woodbine House, publisher of many of the most popular titles in our collection has advised about an opportunity for families to have input to an upcoming title about boys and puberty - we know that will be a popular one too!

If you're the parent (or educator or therapist) of a boy with an intellectual disability, please participate in author Terri Couwenhoven's survey to gather input about boys ages 8-18 for her forthcoming book on puberty issues. 

Terri is the author of the recently published The Girls' Guide to Growing up and Teaching Children with Down Syndrome About Their Bodies, Boundaries and Sexuality.

We keep up with news from Woodbine House about publications, authors and planned releases via their Facebook page, where we also found the link to these very positive recent reviews of The Girls' Guide to Growing Up.

Wednesday, 15 February 2012

What I did this summer ...

Kevin (Second from left, front row) attended the opening of the new Riding for the Disabled facility at Marsfield Park, in Sydney, where he has been riding for 15 years. He introduced special guest, Paralympics equestrian, Jan Pyke (second right, front)

Karly enjoyed a holiday at the beach with family and friends ... lots of rain, but it was fun!

Matt surfed with Disabled Surfers Australia at beautiful Toowoon Bay

Dominic had a holiday on the coast (Coffs Harbour - the week before rain and flooding) and in the country (Tamworth)

And Emma began walking!

Discussion about education for students with special needs in NSW: Thursday 16th February

Parent/activist Jane Salmon has asked us to pass details of this meeting on:
I'm a parent of children with additional needs concerned about the state of special needs education in NSW.  I am hoping that parents, therapists and staff with concerns about special needs education (including the imminent rollout of a scheme trialled in the Illawarra region) will come together to discuss solutions.

Hoping for a rosy future for Special Needs Education?

Want to end dysfunction and cuts?

Want to show your support for teachers aides and learning assistance in mainstream settings?

Are you a parent, aide, teacher, principal, unionist, lawyer, therapist, politician, itinerant support teacher or counsellor wanting a brighter future? You'll be in good company.

We're stronger together.

Bring your ideas and info along to a public meeting on 

Thursday 16th February at 1pm and/or 7pm.

Parliamentary Theatrette
Parliament of NSW
6 Macquarie Street

Tel: 0417 919 354 or email upstream2005 at for information.

Tuesday, 14 February 2012

Playing to their strengths: workshop for teachers, 23rd March, Rosehill

Playing to their strengths
A workshop for teachers and school personnel working with students who have Down syndrome in Primary School.

• The potential impact of Down syndrome on students - what does the developmental profile look like?
• Supporting communication for students with Down syndrome at school
• Short term auditory memory impairment – management
• Using visual tools to support learning, communication and behaviour
• Resources for teachers and students
• Examples from practice

Speaker: Judy Davidson, Parent Support Manager, Down Syndrome NSW

9.30 am - 3.00 pm, Friday 23rd March 2012
Rydges Hotel, 116 James Ruse Drive, Rosehill

$99 per person (DS NSW members); $132 per person (non-members)
Includes GST, morning tea and lunch
Prior registration is essential.

Enquiries: Down Syndrome NSW on 9841 4401 or email

Click here to download a brochure and registration form or register online here
Registrations close 19th March 2012

After school - what then? Family Advocacy workshops in Newcastle, Gosford, Blacktown and Burwood

This workshop is about preparation and planning for when a student with disability, who will need ongoing support, leaves school.

It is suitable for families of students who are approaching the end of high school.
Click here to view the flier with registration details for events across NSW in March 2012

Our members who have attended After school - what then workshops with Family Advocacy recommend them to other families.

Accessible Arts Newsletter #1, 2012

The first Accessible Arts Newsletter for 2012 is now available online.  Well worth reading for information about all aspects of the arts in NSW:  events, people, programs, courses, classes, opportunities ... everything you want to know!