Address details

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

Monday, 31 August 2009

2 - 4 yr olds invited to participate in early reading / numeracy research at Macquarie university

Dr Kathy Cologon, a lecturer and researcher at the Institute of Early Childhood, Macquarie University, is currently looking for families who might be interested in participating in either an early reading or an early numeracy intervention for young children who have Down syndrome and their parents.

The interventions will build on previous research into effective reading and numeracy interventions with children who have Down syndrome. However, in this study, Kathy is seeking parents who would be interested in undertaking training in order to develop skills and understanding to enable them to implement early intervention with their children. The children need to be aged between two and a half and four years of age. If you choose to participate, you and your child will be randomly assigned to either the early numeracy or the early literacy intervention.

Parents will be provided with relevant materials, training and support throughout the intervention. The research will also involve assessments to find out the impact of the intervention on the children involved. The training and assessments will be conducted in English.

The intervention will involve four weekly training sessions, followed by four fortnightly training sessions at Macquarie University, as well as a brief parent interview and four reading, maths and language assessments of approximately 3 hours each for each child.

If you have a child with Down syndrome aged between two and a half and four years of age and you and your child might be interested in participating in this research, please contact Kathy on 9850 9864 or via email at by early September.

Family Advocacy Workshop: After School - then what?

A workshop about navigating the post school system for families of school students in years 9, 10, 11 or 12

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

The focus of the day will be on the system of funding and support. It will cover information about Commonwealth and State Government responsibilities as well as those of non government service providers who are approved to support school leavers.

Topics covered will include: 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.
  • ORANGE—Tuesday 8 September
  • DUBBO—Wednesday 9 September
  • ALBURY—Tuesday 15 September
  • WAGGA—Wednesday 16 September
The presenters at this workshop are themselves parents, family members and allies of people with developmental disability.

This is an important workshop if a person with developmental disability in your family:
is leaving school (year 12) in 2009 or is in years 9, 10 or 11 and you are planning for life after year 12.

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

Phone for more information, venue details and to register call Family Advocacy on 1800 620 588

Liberal forum on the education of students with disabilities

The Liberal Party held a "major stakeholder forum" on the education of students with disabilities last week in Melbourne, and has issued these statements:

Leader of the Opposition Opening Remarks at the Major Stakeholder Forum - Equal Access to Education

Taking students with disabilities out of the too hard basket - Joint Release from the Hon Christopher Pyne MP Shadow Minister for Education, the Hon Malcolm Turnbull MP Leader of the Opposition and Senator Mitch Fifield Shadow Parliamentary Secretary for Disabilities, Carers and the Voluntary Sector

Sunday, 30 August 2009

Living life to the Max

The Mail.Online has recently published an interview with Sandy Lewis, mother of Max (16), and author of "Living with Max". She gives some excellent advice for new families.

A link to Sandy's blog is listed in our Blogroll - scroll down the right hand column of this page.

Her book "Living with max" is available for loan to DS NSW members from our library.

Care worker's rights vs clients with disabilities' rights

A decision by a public service tribunal that seems to put the rights of a worker above the needs and rights of people with intellectual disabilities and the reaction of the Director-General of DADHC's response featured on the front page of this morning's Sun-Herald:

The head of the Department of Ageing, Disability and Home Care, Jim Moore, said his duty of care to clients gave him no option but to defy an order from the little-known Government and Related Employees Tribunal last week directing him to reinstate the residential support worker within a fortnight. ''We are incredibly concerned about the tribunal's decision,'' Mr Moore said.

Click here to read the full news report.

Friday, 28 August 2009

Counselling Support Groups: Chatswood, October - November

..... for parents of children with special needs

Carers NSW fund these groups "to enable parents to meet and tell their story, give and gain support from other families and carers.The focus is on how to take better care of ourselves and not ‘burnout’. The groups deal with issues of family and relationships, the grief process and how to cope on bad days. They can help with the feelings of loss, isolation,exhaustion and the impossible role of parenting different children."

The groups run for 2 hours, 8 consecutive weeks and are run by a counsellor who is a mum of a child with Autism.

Venue: Lizard Centre (conference Rm1)
126 Greville Street
Chatswood NSW 2067

Commencing: Monday 19th October 2009

Fees for groups are based on need, not ability to pay. Phone to discuss your circumstances.

For further information and to secure your place contact Justine 0414 237 383

Thursday, 27 August 2009

Library Thursdays: World Down Syndrome Congress

My mind is still reeling from all that I heard and saw at the conference in Dublin this week. It was wonderful to be around so many different people in the Down syndrome community. There were parents, professionals, expert researchers, children and adults with Down syndrome. There were displays as well as talks and I met people from all over the world but always I felt a huge sense of community. I have a picked up some new resources for the library (some Dave Hingsburger publications, an Italian DVD, a children's book amongst a couple others) but also was able to hear talks by many of the authors of resources already in the library. I will write in more detail over the next few weeks about what I learned from the Congress, but the highlights from the talks have been for me: 
Hearing about the post-secondary education programs going in the US and Ireland. The tertiary program at Trinity College in Dublin is particularly exciting and impressive.
Listening to Dave Hingsburger in person. He makes me laugh, cry and challenge my actions.
Hearing Dennis McGuire (one of the authors of Mental Wellness in adults with Down syndrome) speak. His knowledge, love and respect of people with Down syndrome really comes through.
David Patterson speaking on the continuing study of the genetics of Down syndrome was interesting.
The gains made in Russia with the acceptance of children with Dow
n syndrome was great to hear.
The feeling, motivation and belief in social inclusion by many speakers.
Hearing the young adults with Down syndrome speak.
There are really just too many highlights for me to go on with. I did appreciate listening to the whole range of issues concerning Down syndrome all packed into 3 days. It helps bring in all into context.

I look forward to coming back to Australia and unpacking the library! But also unpacking my thoughts about all this.

(United by Music is pictured at right. They performed at the Congress with guest Sujeet Desai)

Wednesday, 26 August 2009

More on Health for All, Wollongong - October

The Disability Trust has issued an update on its Health for All conference to be held in Wollongong on 1st October 2009:

We are delighted to have Dr Helen Beange to open the conference. Dr Helen Beange is internationally renowned for her contribution to understanding the health needs of people with a developmental disability. Her vision, clarity of thought, diligent work and perseverance is inspirational.

Key Note Speakers are:-
• Professor Lyn Lee – Rehabilitation & Developmental Disability expert.
• Dr Meg Smith – Expert in Mental health Issues.
• Trish McClure – parent of a child with profound medical frailty & advocate.
• Jim Simpson – Senior Legal Advocate for NSW Council for Intellectual Disabilities.

Other Presenters/ Presentations include:-
• Professor Trevor Parmenter, prominent educator in Developmental Disability Services.
• Dr Irwin Pakula, Psychiatrist who has worked extensively with people with disabilities.
• Healthy Life Outcomes.
• Clinical Services in Accommodation.
• Carer Outcomes.
• Management of Hospitalisation of Non Verbal Patients.
• Workplace Health.
• Mental Health Patient Abuse in Forensic Hospitals.

More presenters/ presentations will be announced shortly and a full program will be made available prior to the conference.
The Health For All conference is suitable for all people who work in Disability Services and Health Care, People with Disabilities and Carers.

Don’t miss out!!!!
Click here for an earlier post with links to download the flyer and registration form for this event.

Tuesday, 25 August 2009

Camp Bluegum for Young Carers 8-12 years

Siblings inevitably take on some caring roles when they grow up with a brother or sister who has a disability. Young Carer events, like Camp Bluegum, are an opportunity for them to spend time with other siblings, acknowledging and valuing their caring roles, and maybe making connections with them

Saturday, 10 October 2009 to Wednesday, 14 October 2009

Springwood, Blue Mountains

Campers will have fun with lots of activities, make friends and have a break. Register by 4 September 2009.Camp Bluegum is for young carers of 8-12 years of age caring for a family member with a long term illness, disability, mental illness, drug or alcohol dependency.

Camp Bluegum is FREE. Please apply by 4 September 2009.

Note: Volunteer Camp leaders and qualified nurses are also required.

For information or a registration form contact Young Carer Team, Carers NSW, on 1800 242 636 or email You can also download a registration form from the Young Carers website.

Monday, 24 August 2009

Recent media releases from the Minister for Disability Services

Major expansion for Teen Time program 16/08/2009)
A program that gives parents of teenagers with an intellectual disability more respite so they can pursue jobs and study is to be expanded across New South Wales. Minister for Disability Services Paul Lynch said the $2.578 million Teen Time – After School and Vacation Support for Working Parents was piloted in Sydney’s north in 2007-2008. Mr Lynch said the pilot program proved so successful that the Government was providing extra money to provide a total of 460 places through 27 services around the State.
Click here for the full text of this media release.

Aboriginal Case Managers for people with a disability (14/08/2009)
The NSW Government has appointed several Aboriginal people as case managers to work with people with a disability in southern Sydney.

Minister for Disability Services Paul Lynch said at least six Aboriginal specific positions would enable the Department of Ageing, Disability and Home Care (DADHC) to develop stronger ties with the Aboriginal community in the region.
Click here for the full text of this media release.

Challenge helps people with disabilities to live independently in Tamworth (20/08/2009)
Minister for Disability Services Paul Lynch today officially opened new units for 17 people with a disability in Tamworth.

The 15 units – operated by Challenge Disability Services – support ageing people with a disability and were designed to encourage them to live independently in the community.
Click here for the full text of this media release.

DET proposed changes to support for students in mainstream enrolments

The provision of educational support in NSW State schools, for some students enrolled in mainstream classes, is undergoing change that is the subject of some controversy.

The Department of Education and Training and the NSW Teachers Federation are at odds over the direction and pace of current proposals. Many parents are left wondering exactly what changes are proposed, and how their child will be affected.

The Department of Education and Training has recently posted two documents addressing the proposed changes on its website, linked from the top right corner of the Disability Programs page, under the heading Proposed School Learning Support Program:
Some students' (but not all) needs are currently met by the Learning Assistance Program. The LAP will be absorbed into the School Learning Support Program if it is fully implemented.

This page appears to be the most recent update of the NSW Teachers Federation position. Previously, the Federation has posted a number of documents on its website addressing its concerns about current provision for students with additional educational needs (enrolled in all available settings), its demand "that the existing LAP [Learning Assistance Program] allocations and all existing programs be maintained for a further 12 months until wide consultation, evaluation of programs and a review are conducted", its concern for the more than 1800 Support Teacher (Learning Assistance) positions, and reporting on its campaign on special education leading up to the next State election.

The new DET documents address the concerns about the 1800 STLA positions - but the Federation does not appear to be entirely satisfied as yet.

The Teachers Federation acknowledges improvements that have been achieved in recent years, and not every concern is relevant to students with Down syndrome, but the debate will be of interest to many parents whose children are enrolled in both special education and mainstream settings.
Of particular concern to us, is how or whether the proposed changes will deliver adequate support to students with Down syndrome who are assessed by the DET as having a mild intellectual disability, and we are seeking clarification from DET.

We welcome your input if your school-aged child with Down syndrome has been assessed as having a mild intellectual disability, whether you are confident that they are currently being adequately supported or not - please contact us via

Sunday, 23 August 2009

A little weekend blog surfing

Frank Buckley, CEO of Down Syndrome Education International challenges assumptions about prenatal testing.

This report provides an update on the current status of the US company Sequenom's non-invasive prenatal test.

Patricia Bauer's Disability News commentary covered tributes to Eunice Kennedy Shriver

Jennifer Gronenberg continues to encourage parents of young children by writing about her young family.

Sandy Lewis writes about living with teenaged Max

Dave Hingsburger has submitted to having "proper"professional photograph taken, which he calls Portrait of the Activist as an Old Man

Saturday, 22 August 2009

10th World Down Syndrome Congress is in session

The 10th World Down Syndrome Congress is now in session, with an expected 2000 delegates. We haven't heard much yet, except that it is great - everyone is too busy participating and catching up with friends to email. Dave Hingsburger is one of the speakers, and has posted some blog entries about it so far at Rolling Around in My Head.

New publications: fact sheets for people with disabilities and their families or carers

Employing a private speech pathologist

The NSW Department of Ageing, Disability and Home Care has published two fact sheets "to assist families and carers to make good choices when employing a private speech pathologist" - one for parents of adults with an intellectual disability, and one for parents of children with developmental disabilities. Both can be accessed online here.

Health Fact Sheets
On 11th August, the NSW Council on Intellectual Disability launched a comprehensive series of Fact Sheets on aspects of health and health care. The Fact Sheets are available in both standard English and Easy English. Both series are available online from the NSW CID website.

Friday, 21 August 2009

Library services ....

..... will be a little slow for the next week, because this is what the library looks like at the moment:

There are about 1000 items (mostly books) packed in these crates, with another 1000 out on loan - please don't rush with your library returns this week!

The library crates are numbered by shelf and bay number and will be unpacked and re-shelved to match photos of the shelf order and arrangements that Kathi had them in at Harold Street.

This is 40 packing crates - there are 100 at Harold St, and another 100 at O'Connell St being packed for our big move next Wednesday. Each one will be numbered and cross referenced to the person whose files it contains .....

...... so that it can be matched to the floor plan and office layout at Weston Street - it should go like clockwork, but you will understand we will not be able to answer any but urgent calls for a couple of days ....

Thursday, 20 August 2009

Library Thursdays: Author of Madonna in the Suitcase interviewed in Otago Times

We previously blogged about Huberta Hellendorn's Madonna in the Suitcase. This week an article in New Zealand's Otago Daily Times interviews Hellendorn about her book and her experiences with her daughter. It mentions that a radio serial has been made from it. The interview touches on Hellendorn's view of pre-natal testing and goes on to look at another mother's experience and a discussion of Down syndrome and pre-natal testing. 
Click here to read the article.
Today is the start of the World Down Syndrome Congress in Ireland. Next week we'll blog about some of the information coming out of it. In the meantime, if you want to borrow anything, just email us. We might be a little delayed with sending out some things since we're at the event in Ireland and the office and library is moving this week, but we'll do our best.

Wednesday, 19 August 2009

We are moving!

The Down Syndrome NSW office

is relocating on 26th August 2009.

Our new address:
80 Weston Street,
Harris Park 2150

Our new phone number:

02 9841 4444

Postal address:
will remain the same for now, and will then be redirected. We will advise our new postal address as soon as it is confirmed.

All email and web addresses will remain the same.

The new premises will give us

• a more convenient and comfortable venue for families to visit support staff, the library and other programs

• the capacity to hold some DS NSW functions onsite

• more space, including a meeting room

• expanded library space

• room for all of our staff to work together, more effectively

• easier parking for visitors and staff

• proximity to Parramatta and Harris Park stations, and buses nearby

We have spent over two years searching for an appropriate and affordable location, and we are very pleased to have found 80 Weston Street, which is only a couple of km from where we have been for more than 20 years in North Parramatta.

Members, friends and supporters are very welcome to call in and inspect our new home.

The office will be closed for regular activities for two days (25th and 26th August) while we move, but urgent contacts can be made on 02 9683 4333 during that time.

Tuesday, 18 August 2009

Familes Weekend 2009 is fully booked

Families Weekend 2009 is scheduled for 6th - 8th November, at The Tops centre, Stanwell Tops. It has proved very popular with families , and is now fully booked. Thank you to all those families who have registered.

If you had planned to register but have not yet done so, you can put your name on a waiting list for a possible cancellation, but we cannot guarantee one will become available. Please direct all enquiries to

Award winning website on making decisions about amniocentesis

AmnioDex: amniocentesis decision maker explorer, a website prepared at the University of Cardiff, was awarded the ‘Best of Show’ and the ‘Gold Award’ at the 2009 Health and Science Communications Association (HeSCA) Media Festival held in St Louis, USA. reports:

Professor Glyn Elwyn, who also leads Cardiff University’s Decision Laboratory research group, said: "With existing information and support provided to women who are offered an amniocentesis widely considered to be insufficient, amnioDex has been developed to facilitate decision making by providing decisional support and unbiased information. amnioDex has been carefully designed to offer women decisional support and unbiased information, and to assist them in a difficult decision made at a time of strong emotional upheaval. We are thrilled to receive these awards which recognise our commitment to developing and evaluating high-standard decision support interventions".

AmnioDex explains its aims on the website:

Our aim was to examine and address the information and decision needs of women when considering amniocentesis testing. In order to do so, we developed a website, amnioDex, which contains evidence based information about the potential harms and benefits associated with amniocentesis testing and video clips of women’s experience and professionals explanations. Explores every aspect of making a decision about amniocentesis.

A link to AmnioDex has been posted on the Down Syndrome NSW website, on the Prenatal Diagnosis page.

Monday, 17 August 2009

Inquiry into the migration treatment of disability: submission called for by 28th October 2009

From the Parliament of Australia Joint Committee website:

Joint Standing Committee on Migration
The Joint Standing Committee on Migration conducts inquiries into matters referred to it by the Parliament or a Minister of the Commonwealth Government.

The Minister for Immigration and Citizenship, Senator the Hon Chris Evans, and the Parliamentary Secretary for Disabilities and Children's Services, the Hon Bill Shorten, have asked the Committee to undertake an inquiry relating to the health requirement in the Migration Act.

Every year, millions of people apply to visit or migrate to Australia, and grant of a visa is conditional on a person satisfying the health requirement specified in the Migration Regulations. The health requirement is designed to protect Australia from public health risks, contain public expenditure on health and community services, and maintain access of Australian residents to those services.

Disability does not in itself mean that a person or a family will be refused a visa. However, as part of the health test, applicants with a ‘disease or condition’ are assessed on the potential cost and impact on Australian health and community services.

The Committee will investigate the assessment of the health and community costs associated with a disability as part of visa processing in Australia.

The Committee is now calling for submissions from interested individuals and organisations. The terms of reference for the inquiry and information about making a submission are available through the links below.

Following the submission period, the Committee may conduct visits to learn more or call for individuals or organisations to provide further evidence at public hearings or roundtables.

If you would like to keep informed of the progress of the inquiry, email to request to be added to an electronic mailing list for all media releases associated with this inquiry.

Useful links

The Department of Immigration and Citizenship’s fact sheet on the health requirement is available here.

Submitters may wish to refer to Schedule 4 of the Migration Regulations 1994, which outlines the public interest criteria relating to health.

Terms of reference


Public hearings

Media releases


The Committee invites interested persons and organisations to make submissions addressing the terms of reference by Wednesday 28th October 2009

Sunday, 16 August 2009

Down syndrome: a family perspective

Fiona Place's website, Down syndrome: a family perspective has moved and the name is slightly altered.
Fiona "writes about the issues facing parents raising a child with an intellectual disability. She is the mother to Fraser, a delightful young man who happens to have Down syndrome."

Well worth a place on the favourites list. There is a link in the right hand column of this page, under "Our favourite websites"

Obstructive Sleep Apnea is Prevalent in Adults with Down Syndrome

It is not a new finding that obstructive sleep apnoea is common in adults with Down syndrome - but this new study, published yesterday, has found a very high incidence among its small sample, and addresses the under-diagnosis and under-treatment of a significant health problem.

Trois, MS, Capone, GT et al, Obstructive Sleep Apnea in Adults with Down Syndrome, Journal of Clinical Sleep Medicine, Vol 5, Issue 4, 15th August 2009

The abstract is currently online, and it appears that the full text will be freely available six months after publication under the journal's open access policy. In the meantime, our library will seek a print copy. Amongst the researcher's conclusions:

We speculate that the complications of untreated OSAS (cardiovascular disease, increased mortality, and neurobehavioral morbidities including daytime sleepiness and impaired cognitive function) commonly overlap with the manifestations of DS and therefore may not elicit a prompt investigation in these patients. We speculate that OSAS is an important, but potentially treatable, cause of morbidity in adults with DS.

Inscience has published an excellent summary of the study, with comments by one of the authors, Dr Carole Marcus.

The Spring 2009 issue of the Down Syndrome NSW Newsletter (to be published on 1st September 2009) includes an article about the experience of one young man with Down syndrome in dealing with severe obstructive sleep apnoea, and the benefits of his treatment.

If you are interested in further information about obstructive sleep apnoea in people with Down syndrome of any age, you are welcome to contact us via

Case studies - addressing challenging behaviour

Young children with Down syndrome and their parents can face numerous challenges arising form developmental, cognitive and communication impairments leading to behaviour that is outside the norm for the child's chronological age. Communication development can be more delayed than cognitive development, leading to behaviour arising from frustration with communication.

Parents and early childhood professionals will find this paper useful in providing strategies to support the child, eliminate or prevent behaviour that is often described as "challenging", and describing real cases where particular strategies have been applied in managing particular behaviours:

Kathleen Feeley and Emily Jones, Strategies to address challenging behaviour in young children with Down syndrome, Down Syndrome Research and Practice, Volume 12, Issue 2, October 2008

It is one of many excellent resources freely available online from Down Syndrome Education International's online library:

Saturday, 15 August 2009

Packed to the Rafters

A preview from the Spring 2009 issue of the DS NSW Newsletter (to be published on 1st September, 2009) ~ 5 year old Sarah's mother Mary, has written an account of their starring efforts on Packed to the Rafters (Channel 7):

Back in March our coffee morning group of parents and children were invited to be extras in an episode of channel 7's "Packed to the Rafter's". The producer contacted DS NSW briefly discussing the script and seeking a bunch of children with Down syndrome to be in a playground scene.
The main characters, Julie and Dave Rafter are discussing a high risk assessment of their on screen baby being born with Down syndrome. Lucky for us our group was selected as the outdoor scenes are filmed at Carss Park in the St George Shire. It was exciting to be apart of a TV series in the making, the way it is literally pieced together, and to witness its considered and slow process. The children were consummate performers for the first hour before the cameras were rolling! However by the end of the second hour they were tiring and quite grubby!

The director Cherie Nowlan and crew were appreciative of our time & thanked us for our involvement. Actors Rebecca Gibney and Erik Thomson met with the parents and children and joined in conversation. They seemed unpretentious and down to earth, not too unlike the characters they play on the show. Apart from their professional accolades it was evident by their manner that they each have young children, Rebecca a 5yr old and Erik a 2yr old. They were genuinely interested in our families and naturally we were happy to showcase our children, whom they described as being gorgeous and patient, (mmm not always! We thought).
We were pleased to have the opportunity to discuss social stereotyping, and the misconceptions the community can have of our children through outdated information. We were somewhat nervous about the scene going to air, not because of our lack of acting skills and lack of stage makeup! But we hoped a positive view would be presented. Overall Rebecca's line: "I'm sick to death of this good result, bad result thing. We are talking about a child. Stop judging the kid before it's even born" put our minds at ease and we were happy with our 1 minute and 17 seconds of fame!

The next morning on Channel 7's Sunrise the topic of choosing to have a baby with Down syndrome was commented on,

"'s a personal choice, whether to terminate" one compere said.

I felt they did not echo the balanced and positive view presented in the episode, so I sent an email, I was not alone. To quote Siobhan parent of Joel, "the personal choice, needs to be an informed choice." What surprised and pleased us is the number of people who saw the show and the dialogue it has encouraged.

Sarah now wears her sunglasses when we go to the shops!
Packed to the Rafters Episode 27 aired on 28 July. Viewer's comments following the Sunrise segment are here.

Friday, 14 August 2009

Public Service Traineeship launched for People with Intellectual Disability

Parliamentary Secretary for Disabilities Bill Shorten welcomed the launch of the first public service traineeship program for people with intellectual disability on 11th August 2009.

The Australian Public Service Traineeship Program begins today and will see five people with intellectual disability working for 18 months on general administration tasks at the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) in Canberra.

Full text of the joint media release from Bill Shorten and Jenny Macklin (Community Services Minister)

News this week

Events and issues relevant to people with disabilities and their families generally, and those with Down syndrome and their families in particular, have featured in the international and local press this last week. Here is a summary of the week's major news:

Eunice Kennedy Shriver 1921 - 2009 - tributes to the founder of Special Olympics

Prenatal testing has featured in the British press this week, as clinical trials of new, non-invasive tests for Down syndrome are announced:

Prenatal tests - health care or eugenics? - a letter from Frank Buckley, CEO of Down Syndrome Education International, to The Guardian

Blood test for mothers could save lives of hundreds of unborn babies - the Guardian article that stimulated Frank Buckley's response

Why the mother that struggled to love her Down's syndrome baby would never use the new test that detects the condition - one UK family's experience shapes their views

A major report on the needs of people with disabilities and their families was released and commented upon:

No longer shut away, people with a disability are still shut out - Rhonda Galbally's commentary on the report, Shut Out

Disabilities report exposes exclusion, neglect - one family's response to the report Shut Out

Good and not so good news on employment:

Burnt fingers, dashed hopes for disabled - Michael Duffy's report on the difficulties being experienced by Cumberland Industries

New push to find work for disabled - a jobs compact for people with disabilities is being prepared by the Federal Government

EarlyEd is turning 30!

Way back, EarlyEd was officially called The Early Education Clinic (although we all called it EarlyEd even then ..... if your son or daughter attended early intervention at either the North Sydney or Parramatta (later Rosehill) programs, this message is for you.

We are planning a birthday celebration on November 8th, 2009.

We would love to hear from any EarlyEd graduates and their families.

Please email
with your contact details.

Thursday, 13 August 2009

Library Thursdays: Primary school library resources

Our library aims to not only provide useful resources for our members to borrow but also make known the resources that will be of benefit to anyone who wants to know about Down syndrome and the things related to it. Primary school libraries, especially those in schools who have children with Down syndrome in their community, are particularly in need of resources on Down syndrome. We have collated a list of books for students for those libraries who would like to add some books to their collection.
The list in .pdf format can be downloaded here.  You may like to give a copy to your school library to promote awareness within your community.  Members may borrow the books of interest to show to the librarian before purchase.

Other resources and websites can be found in the Learning, Education and Schooling link in the Information Menu on the Down Syndrome NSW website.

Wednesday, 12 August 2009

Opinion: Rhonda Galbally on "Shut Out" report

Rhonda Galbally's commentary on the NCPDC report Shut Out, was published in the Fairfax press earlier this week:

The trouble with disabilities is that most Australians think they happen to someone else. Recently I was talking to a man whose partner was disabled by a recent accident and he told me: "I just didn't realise how bad things were for people with a disability - until it happened to us."

He is not alone. Without first-hand experience of disability, most people assume things are better than they used to be - or at least that they are getting better.

Click here for the full text published in The Age

Eunice Kennedy Shriver 1921 - 2009

Patiricia Bauer's Disability News blog links to the many tributes published about the death of Eunice Kennedy Shriver, founder of Special Olympics, today (11th August, in the USA):

International champion for people with developmental disabilities and Special Olympics founder Eunice Kennedy Shriver, 88, died this morning at a hospital in Hyannis, Mass. Shriver was the fifth of nine children in the Kennedy clan which included President John F. Kennedy and Sens. Robert F. Kennedy and Edward M. Kennedy.

Mrs. Shriver was credited with changing the public’s perception of people with intellectual disabilities by publicly acknowledging her sister with developmental disabilities, Rosemary, and founding the Special Olympics in 1968.

Patricia Bauer, 11th August 2009

Special Olympics Australia has posted news and tributes.

One Woman's Vision

Buddy Walk - Australia 2009 - it's a G.A.S.

We are making FUNdraising easy and fun again this year with our Buddy Walk Hero Page! Bookmark it to keep up with all the news about Buddy Walk events around Australia.

You and/or someone close to you can easily become a Buddy Walk Hero by setting up your own Buddy Walk Hero webpage for yourself, a family member or friend in just a few minutes.

You can then email your Buddy Walk Hero Page to friends, colleagues, family, schoolmates around Australia and the world to give them the chance to sponsor you for this year's Buddy Walk.

To set up your own Buddy Walk Hero Page please
click here then click the big button that says Register Here.

And we have our first Buddy Walk 2009 Hero ..... Addison Quinn

It only takes a few minutes to create your Hero Page – you can upload a photo and some info about your Hero and team. If you have any trouble or are completely computer-phobic please just let us know, and we can help you through it, or set up a Hero page for you. Contact us on

This year, as an extra way of saying ‘thank you’, each Buddy Walk Hero will receive a gift of a special Buddy Walk backpack perfect for taking on Buddy Walk with you.

Each year, Buddy Walk has a new fundraising theme.

Previous themes have been:
2008 - AAA - ‘Access All Areas’
2007 - D.A.D.S - ‘Dads Appreciating Down Syndrome’

Funds raised by our previous Buddy Walk Heroes have gone to such activities as workshops for Dads, and better access to services in regional areas

And the theme for 2009 is ......

Buddy Walk 2009 – It’s a GAS! (Grandparents And Siblings)

This year, we celebrate the very important role grandparents, brothers and sisters play in the lives of many people with Down syndrome. The constitution of Down Syndrome NSW was amended to allow grandparents and siblings to become full members for the first time – until then only people with Down syndrome and their parents could become full voting members. We will be holding our first workshop specifically for grandparents and also have some UP!Club and other special events planned for siblings. We will be working on further ways we can involve and support grandparents and siblings in the months ahead.

Of course, there are often many other important people in the lives of a person with Down syndrome – friends, aunties, uncles, employers, teachers – all are welcome and celebrated at Buddy Walk – Australia 2009!

News on National Disability Insurance Scheme

The National Disability Insurance Scheme website now has a news column covering media about the concept and its place in the development of the National Disability Strategy. You can subscribe to a news feed to keep up with the discussion and action.

Accessible Arts Newsletter - AUgust

The August issue of Accessible Arts Newsletter kicks off with a photo of Audrey O'Connor and Gerard O'Dwyer participating in a 48 hour short-film making event - the story is a bit further down the page. Click here for all the arts news for August.

Tuesday, 11 August 2009

City to Surfers - congratulations and many thanks!

Congratulations to all who ran the City to Surf. What a sight those 75,000 runners were heading down William Street, and stringing out to Bondi. That seven of them were running for DS NSW was wonderful! Thank you Brad Dewhurst; Tamzyn Bielecka; Joe Hedger; Daniel Fleming; Allan Le; Shmulik Kachlon and Andrew Rojas.

Tamzyn was proud to finish and receive her medal:

Thank you so much for your words of encouragement. I used them when I woke up at 7am on Sunday morning to remind me that I wasn't just doing it for me. I'm so glad that I raised this money for such a worth wild charity, I even surprised myself with the amount.

Over the last 18 months I have been getting to know Tom [a young man with Down syndrome] and he is the main reason I choose this charity. We go to Trivia nights and football. We have an on-going Monday night spaghetti bolognaise and football game dinner at my house. He's a brilliant bundle of energy who make events exciting and refreshingly fun.

The whole city to surf experience was an amazing. I just did it all out of admiration for a bunch of people with great hearts.

Thanks again and hopefully I can raise more money next year!

Monday, 10 August 2009

Disabilities report exposes exclusion, neglect

The Age (Melbourne), this morning followed up the release of the National Disabilities Strategy Consultation Report, Shut Out (see this post from last Wednesday) with the view of a real family:

Julian McAlpine is a happy eight-year-old boy living with Down syndrome. He goes to school, has plenty of friends and attends scouts with his brothers - but Julian's mother fears for his future.

''I want the same thing for Julian as my other sons. I want him to have somewhere to live, I want him to have someone to love, I want him to have a job, I want him to live an ordinary life,'' Catherine McAlpine says.

''But it's scary. You talk to other parents with adult offspring and it really is difficult to achieve all of those things.''

Click here for the full text of Julia Medew's report, and a beautiful photograph of Julian and Catherine McAlpine. Catherine is the CEO of Down Syndrome Victoria

Christian Pueschel Memorial Awards

Christian Pueschel was the much loved son of a well known family in the Down syndrome community. Two awards in his memory have recently been bestowed for 2009, in the USA, at the 37th Annual national Down Syndrome Congress Convention in Sacramento, California.

Christian Pueschel Memorial Research Award
On August 1, 2009, The Down Syndrome Research and Treatment Foundation (DSRTF) was awarded the prestigious 2009 Christian Pueschel Memorial Research Award from the National Down Syndrome Congress (NDSC). The award was presented to DSRTF’s CEO, Dr. Michael Harpold, by Dr. Sigfried Pueschel at an awards banquet during the NDSC Convention in Sacramento.

We are honoring DSRTF for supporting research which contributes to a greater knowledge and understanding of Down syndrome,” said Brooks Robinson, national president of NDSC. “We salute them for their focus on funding essential research that will improve cognition and their commitment to seeing the results of this research translated into effective treatments.”

DSRTF is deeply honored and grateful to have been selected and recognized by NDSC to receive this prestigious award,” said Dr. Harpold. “It is especially meaningful for DSRTF, as a national organization only recently founded in 2004 with an exclusive mission and focus on Down syndrome biomedical research, to receive this significant recognition from our friends at NDSC. NDSC is one of the longest standing nonprofit organizations serving the Down syndrome community with a complementary focus on establishing a world with equal rights and opportunities for people with Down syndrome. Historically, Down syndrome biomedical research and the development of effective new therapeutics, particularly related to cognition, has remained a disproportionately under-addressed and severely under-funded key approach in creating meaningful new opportunities for children and adults with Down syndrome. We are extremely proud that this year’s Christian Pueschel Memorial Research Award recognizes the rapid and unprecedented progress that has been, and continues to be, accomplished through DSRTF-supported research and the unique and essential role DSRTF is serving in creating new opportunities for all people with Down syndrome.”

The Christian Pueschel Memorial Research Award is given in honor of the late Christian Pueschel, son of Sig Pueschel, M.D., Ph.D., J.D. Dr. Pueschel, who lives in Rhode Island, has devoted his career to improving the lives of people with Down syndrome. This award recognizes that the value of people with Down syndrome is intrinsically rooted in their humanity and uniqueness as human beings.

Two DSRTF-supported researchers have previously received NDSC research awards. Dr. William Mobley, currently Chair and Professor, Department of Neurosciences at the University of California, San Diego School of Medicine, received the Christian Pueschel Memorial Research Award in 2007, and Dr. Roger Reeves, Professor, Department of Physiology at Johns Hopkins University School of Medicine, received the Theodore D. Tjossem Memorial Research Award in 2008.
Dr. Harpold additionally provided a comprehensive update to the NDSC Convention attendees concerning DSRTF and the DSRTF-supported research advances in a presentation entitled, “Down Syndrome Cognition Research: ‘Unprecedented’ Progress and promising New Therapeutic Strategies and Opportunities”. Also, during this year’s convention, Dr. Mobley further detailed the results of the DSRTF-supported research in his laboratory in a presentation entitled, “Exploring the Neurobiology of Down Syndrome: From Science to Medicine”.

The Down Syndrome Research and Treatment Foundation was founded in 2004 as a national organization and is dedicated to its mission: To stimulate biomedical research that will accelerate development of treatments to significantly improve cognition, including memory, learning and speech, for children and adults with Down syndrome. The goal is to create new opportunities for all individuals with Down syndrome to:Participate more successfully in school;Lead more active and independent lives; and Prevent early cognitive decline with aging."

Source: Down Syndrome Research and Treatment Foundation

Christian Pueschel Memorial Citizen Award
Katy Wilson, a Special Olympics Georgia (SOGA) athlete, board member and spokeswoman, received the 2009 Christian Pueschel Memorial Citizen Award from the National Down Syndrome Congress (NDSC) at its annual convention in Sacramento, Ca.

The award recognizes an individual with Down Syndrome whose achievements, service, and contributions have enhanced the value and dignity of people with Down Syndrome and their families.

"Katy Wilson's work on behalf of her peers has been exceptional. She has made an impact, whether as a Special Olympics Global Messenger, a valued employee at Ryan's, as a regular speaker to aspiring teachers at Agnes Scott College, or in countless other ways," said National Down Syndrome Congress President F. Brooks Robinson.

Wilson, of Gainesville, Ga., is a Special Olympics gold medalist in gymnastics. In addition to being a mentor, Wilson is also the athlete representative on SOGA's board of directors where she is a policy maker and gives feedback to the board on decisions that affect the 22,769 children and adult athletes in Georgia. She also reviews the organization's quarterly budgets.

As a SOGA spokeswoman, Wilson is a poised individual who serves as a role model, said SOGA CEO Georgia Milton-Sheats. "As a successful and positive person, she is articulate in telling her story, and she has touched many lives," said Milton-Sheats.

Wilson recently helped train five athletes - including two with Down Syndrome - in public speaking, so they can also travel with other SOGA representatives to recruit volunteers and donations around the state. Last March, she traveled to Washington, D.C. with SOGA staff for Capitol Hill Day for Special Olympics Inc., where she talked with elected officials about how Special Olympics improves the lives of people with intellectual disabilities.

Wilson was nominated by her sister, Melinda Wilson Klinect, a teacher at Brookwood High School in Snellville. "My sister Katy is a well-rounded young person who is busy and happy and loving her life. Katy believes that anything is possible," she said.

SOURCE Special Olympics Georgia

Dance 4 Down syndrome

A new event planned for World Down Syndrome Day 2010

..... stay tuned .....

Sunday, 9 August 2009

Difficulties at Cumberland Industries.

Cumberland Industries, a well known , large employer of people with disabilities in Sydney is in financial difficulties, and has been under voluntary financial administration for some weeks. This article by Michael Duffy that appeared in yesterday's Fairfax papers is the first media report we have seen, and gives assurance that the jobs of the 600+ people with disabilities employed in supported business enterprises (and funded by the Federal Government) will be safe, although those enterprises might be managed by other services.

We know that many Cumberland employees are people with Down syndrome, who value their jobs and gain great satisfaction from them. Some have worked at their current jobs for several years. We understand that they and their families have been kept informed about possible changes, and reassured about their jobs.

Saturday, 8 August 2009

City-to-Surf 2009 is tomorrow !

The big weekend is here already - the race is tomorrow, the training is done, the adrenaline is running high. It's not too late to pledge a donation - click on the name of your chosen runner to go to their Every Day Hero page, and leave your message of encouragement and financial support:

Good luck to each of the runners fundraising for Down Syndrome NSW - we really appreciate your efforts, and your help in raising awareness about people with Down syndrome in our lives, and in our community.

Friday, 7 August 2009

New push to find work for disabled

Stephanie Peatling, Workplace Correspondent, reported in today's Sydney Morning Herald:

A jobs compact for people with disabilities is being prepared by the Federal Government.

Nearly 30 private companies are believed to have signed up to the compact, which, according to government sources, is likely to be announced this month.

It is based on a similar pledge made by the Government last year to pay for any training costs incurred by businesses that employ indigenous people.

The compact follows the release this week of a discussion paper calling for a new national strategy for people with disabilities. The Parliamentary Secretary for Disabilities, Bill Shorten, said he believed a new approach was necessary in order for people to have the same access to services and jobs as people without disabilities.

Click here to read the full story.

Thursday, 6 August 2009

Library Thursdays: Dave Hingsburger

It is 2 weeks until the World Down Syndrome Congress in Dublin. One of the highlight speakers will be Dave Hingsburger (seated on the left). He will be speaking about self concept, sexuality and also doing workshops with young people with Down syndrome. This blog often refers to some great entries from his blog, but we also have many of his writings and a recording of a lecture in our library.
Hingsburger has worked for years in the field of education for people with intellectual disabilities and those who work with them. He has done a lot of work in the field of sexuality and advocacy. He has a great style and uses his experiences to relate what he's learned, how he views the world and how people with disabilities are affected. He is refreshingly open and discusses his life, struggles and interactions honestly, humorously, and passionately. The worst thing about reading his blog and books is that they are so engaging that you just cannot stop reading them.

Resources by Dave Hingsburger in our library:
The are "R" Word: How people with disabilities can cope with name calling and other negative reactions to their disabilities
Tall Tales: Self concept and people with learning disabilities: Audio CD of a lecture about interactions with people with developmental disabilities and ho
w to increase their self-worth. Humorous and insightful.
First Contact: charting inner space
Real eyes: lessons in humanity, humility and human services
I Openers: parents ask questions about sexuality and children with developmental disabilities
Just Say Know!: Understanding and Reducing the Risk of Sexual Victimization of People with Developmental Disabilities - looks at how people with intellectual disabilities can protect themselves and a way to look at the indicators of sexual abuse.
In:Difference(a little book about diversity)
Black Ink
A little Behind: articles for challenge, change and catching up
A Real Nice But: articles that inspire, inform
Power Tools
Behaviour Self
Upping the anti

Read more about these titles at the Diverse City Press site.
Most of these are similar to the blog in that they have short bits that relate stories of interactions from which we can learn. Do? Be? Do? is more of a manual on how to look at teaching in a different way (not just teaching to do...) The Tall Tales CD is great as it covers alot of the ideas in the other books on the 3 CDs.

A short Powerpoint presentation gives a little more on Dave Hingsburger but borrow his books to get a good view of his great approach to life and interacting with all people.

Wednesday, 5 August 2009

Shut Out: the experience of people with disabilities and their families in Australia

Call to lift disabled out of ‘exile’
Stephanie Peatling, Sydney Morning Herald, August 5, 2009 .

A national insurance scheme that would cover the costs of those with disabilities should be investigated, says the parliamentary secretary for disabilities and children’s services, Bill Shorten.

The scheme would provide someone born with a disability or who incurred one through accident or illness with consistent funds throughout their life. ‘‘Many Australians with disabilities remain in internal exile,’’ he said.

Mr Shorten will today make public a discussion paper calling for a national plan for those with disabilities. It argues that the existing system of providing services to those with disabilities is too flawed to be fixed and needs to be replaced.

Instead of a ‘‘welfare model’’ the paper calls for more individually tailored programs to help people participate fully in the community.

As well as improving care and support services, Mr Shorten wants a national system to focus on people being given enough help to to find and maintain work.

Better access to public buildings and transport was also essential, he said. ‘‘You go to some suburbs and the shops are inaccessible, not just to people with disabilities but young mums and older people. I don’t know how some buildings get approved.’’

Click here for the story in the Herald online.

The report was prepared by the National People with Disabilities and Carer Council. The Council's Deputy Chair, Kirsten Deane, is acknowledged and thanked "as the primary author of this report". Kirsten is the current President of Down Syndomre Victoria, and mother of a young daughter with Down syndrome.

  • The report, Shout Out: the experience of people with disabilities and their families in Australia is available to download here in a number of formats. An Easy English version is available upon request to FAHCSIA. Phone 1800 050 009, TTY 1800 555 677 and ask for 1800 050 009, email