Address details


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


Monday, 19 August 2013

Sydney Fringe: Inside Out in Newtown

Four performers who have Down syndrome - Emma Brodie, James Penny, Josh Gray and Joanna Rix - are collaborating with dancers who do not have a disability to perform an integrated, contemporary dance piece, Inside Out, to be performed in September, as part of the Sydney Fringe 2013.

Kirsty Fromholtz and her team from the Sydney Creative Movement will facilitate the process from rehearsal through to final performance.  The process is being filmed as a part of a feature length documentary about disability and the creative arts.


Inside Out

7 pm Saturday 21st September 2013
3 pm Sunday 22nd September 2013

New Theatre, NEWTOWN
Buy tickets online
Sydney Fringe: Sydney’s independent festival for the visual and performing arts. NSW'S largest alternative arts event, a celebration of multi-disciplines such as visual arts, film, digital arts, comedy, music, theatre, musical theatre, circus/physical theatre, dance, cabaret, books, kids and family shows, poetry and special events. Highlighting suburbs on the fringe of the city - The Fringe allows you to delve into each precinct's unique cultural offerings and explores the suburbs of Newtown, Chippendale, Surry Hills, Glebe, Marrickville/Enmore, Darlinghurst, Erskineville and Leichhardt.

    Transition for carers forum: Children's Hospital, Westmead


    This forum is for parents and carers of young people aged 14 – 18 years who have a chronic health condition and who, because of a disability, will have difficulty managing their own care as adults.

    Forum: Transition for carers 
    Tuesday, 18th October 2013
    9.15am - 2.30pm 

    The Children’s Hospital at Westmead

    Transition is the period when a child moves from adolescence to adulthood. It is a complicated process for children with chronic health conditions, but is far more complex for those who have additional issues such as an intellectual disability, cognitive impairment, autism or brain injury.

    As a part of its Carers Week activities, The Carer Support Program at the Children’s Hospital
    at Westmead invites parents and carers to attend the Transition for Carers forum and expo .

    Registration is essential - to register call 9845 3590, or email carersupport@chw.edu.au

    Registrations close on 11/10/2013 - places are limited. Note: Professionals in this field may register, but will only be offered a place if all available places have not been filled by parents and carers at close of Registration. Registration is on first come basis. REGISTRATION IS FREE.

    Morning Tea and lunch provided.

    Saturday, 17 August 2013

    Weekened reading and viewing: 17th - 18th August 2013



    Don't limit me!
    Megan Bomgaars, published 30th July 2013




    Down syndrome: where we are now
    Kelle Hampton, Enjoying the Small Things, 14th August 2013
    Brett and I have noticed over the past three years that there are great peaks in her development that will last for a few weeks where there are so many new discoveries, new words, new tasks, but that there are also plateaus where she needs time to chew on what she's learned and chill out for a while. Brains need breaks, I get it. 

    Paul Sawka, Paul's Blog, 12th August 2013
    I took a vacation to get some rest and to recharge. I also wanted to experience some new things. I had never taken a cruise before and it had been my dream for many years. I saved my money and that’s what we did.

    A Parent’s Response to “On Being Tender”, 2013
    (US) National Down Syndrome Congress, 15th August, 2013
    ... We parented her just as we did our other three children but those important advances were pivotal for her life as someone with a disability. There was and still is more specialized intervention and enrichment for her needs as her journey continues ... There is a link to the original article at the foot of the page.

    Inside an Accessible Dance Session
    Sydney Creative Movement, 16th August 2013
    Sydney Creative Movement is currently working with Catholic Care on an Accessible Dance project, with a group of young adults with intellectual disabilities. Our tutor Jodie is heading up the project, working with the group to create a performance for their family and friends at the end of the year. I went and had a sneak peak at their rehearsal this week to see how they were getting on…
    Victoria Birch, Essential Kids, 16th August 2013
    We may want our kids to grow up in an inclusive society. We may want them to view people who experience disability as potential friends, work colleagues and lovers. But how do we broach the issue without singling people out as ‘other’?

    Students with disability must remain a key focus of national education reform
    Stephanie Gotlib, No Fibs - Citizen Journalism, August 11, 2013
    ... Following the passing of the Australian Education Act 2013, a new funding model will be rolled out in participating states at the beginning of the 2014 school year, with a core amount per student, and additional funding loadings for disadvantaged students. ... Let’s get this reform right for students with disability by using this unique opportunity to create an education system that provides equal opportunity, value and respect to students with disability ... Stephanie Gotlib is the Executive Officer, Children with Disability Australia (CDA), the national peak body representing children and young people with disability.

    An alternative way to tie shoes easily
    Ross Elementary PTA, 7th August 2013
    On the "wish list" of many Kindergarten, 1st grade, and PE teachers are students who know how to tie their shoes! If your little one is having a hard time mastering this skill, here is quick alternative to traditional tying.



    Friday, 16 August 2013

    Teaching reading to people with Down syndrome: Busting the myths - Myth #6: Reading for meaning

    This is the final post in this series of six - our grateful thanks to Dr Kathy Cologon for taking the time to write about her work for a wide audience, and for generously sharing it with us here.

    Myth buster #6: Reading for meaning  
    Kathy Cologon, Macquarie University

    In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

    James reading at school with his teacher
    Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

    While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

    There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1)receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning,(4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

    In this final blog post of the series I will discuss the development of reading comprehension.

    Reading Comprehension

    Myth #6: People with Down syndrome cannot understand what they are reading.
    Reality: People with Down syndrome can understand what they read. However, appropriate educational opportunities supporting reading comprehension development are essential.

    In the past it was incorrectly assumed that people with Down syndrome do not comprehend what they read and instead recall words by rote as meaningless memorised sequences of letters – referred to as ‘barking at print’. In reality, research provides clear evidence that people with Down syndrome can and do comprehend what they read. Reading comprehension is an area, however, where people with Down syndrome may need particular support for learning. 

    One issue for reading comprehension lies with the extent to which methods of measuring comprehension rely on spoken language. It is essential to carefully consider whether the approach used for measuring reading comprehension is actually measuring reading comprehension or whether it is in fact measuring expressive (spoken) language. 

    Engaging in a wide range of meaningful, personally relevant, fun, and contextualised literacy experiences is important for all people in learning to read. People with Down syndrome often need ongoing support for developing listening and reading comprehension through meaningful and broad engagement with the world. Supporting reading comprehension development requires carefully reflecting on the activities we engage students in, to make sure that we are in fact teaching and not testing. Teaching new concepts as they are introduced is important rather that a) assuming they are understood without teaching, checking or reminding, or b) assuming that they are not understood and therefore can’t be read. Teaching strategies to check for meaning, drawing on context and clues within the text and connecting with and building on current experiences and knowledge, are important for reading comprehension.

    There are considerable negative implications if the myths discussed in this series of blog posts are perpetuated – including that the myths may become self-fulfilling prophecies. People with Down syndrome may find that developing reading comprehension skills is particularly difficult given:
    • A lack of phonological awareness and phonic decoding instruction (instruction to support development of awareness of sounds and applying these to reading) limits capacity for a person to develop the ability to read unknown words; 
    • Measurement of reading comprehension generally relies on expressive communication, which is not a true reflection of understanding (comprehension);
    • What a person knows or comprehends now is not what they are capable of learning (no matter a person’s age, the time for learning is now!);
    • Reading comprehension includes, but is not limited to, understanding a bus timetable – it is crucial for reading for learning and pleasure – but reading instruction is often limited to functional reading;
    • On the basis of assumptions regarding ‘reading readiness’ or linear development people are often held back with reading until they meet a required assessment level on a reading comprehension measure.
    People can be very frustrated and unhappy about being held back, but are sometimes not supported to express this. For example, as illustrated in a case study by Julie Hooton and Anna Westaway [LINK TO http://www.down-syndrome.org/practice/2064/] when a learner does not reach scores required on a reading comprehension test and is therefore kept back at the same reading level, this is frustrating and demotivating for the learner. This also limits reading development.

    On the other hand, piercing the glass ceilings – or approaching literacy learning opportunities free of myths – can have very positive results. A growing body of research demonstrates that advanced reading ability is a possibility when opportunities for learning to read – including an emphasis on making meaning and on phonological awareness and phonic decoding – are provided. Case study evidence demonstrates that supporting people to continue with reading development and supporting reading comprehension along the way can be highly successful (see the case study in the paper I am drawing from for this series of blog posts [LINK TO http://ro.ecu.edu.au/ajte/vol38/iss3/9/]). This involves making connections with meaning – rather than holding a person back on reading levels.

    Providing support to enhance the development of reading comprehension is important. This requires placing emphasis on meaningful literacy experiences and linking reading to the learner’s everyday experiences and interests. 

    The last word…

    A holistic approach to literacy learning is important for all learners – including people who have Down syndrome. This requires building on the interests and strengths of the learner and engaging with quality literature, environmental print, experimental literacy and all forms of exchange of human communication through the rich experience of literacy learning. 

    People with Down syndrome commonly have a relative strength in reading, but realising this strength requires learning opportunities and appropriate expectations. People with Down syndrome can develop advanced early reading abilities, but can also learn to read later in life. People with Down syndrome can develop phonological awareness and phonic decoding skills. People with Down syndrome are capable of understanding what they read. People with Down syndrome can be exceptional readers and can engage in reading alongside their peers in inclusive educational settings. However, the continuing discrepancy between what is possible and what occurs for many needs to be addressed.  

    As Professor Sue Buckley of Down Syndrome Education International has written, “the only way to find out what level of literacy each child is able to achieve is to give him or her every opportunity to learn, with well-planned teaching activities from preschool years to adult life”. 

    For full details of the research I am drawing from see: Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

    Thursday, 15 August 2013

    School-Link Newsletter, August 2013 issue: mental health and intellectual disability in children

    School-Link Newsletter, Volume 4, Issue 2 (August 2013) published by the Children’s Hospital at Westmead’s School-Link project (on mental health and intellectual/ developmental disability in children and adolescents) is now available on the School-Link website.

    Highlights include:
    • Health Economics for Mental Health and Intellectual Disability by Associate Professor David Dossetor
    • Getting Students Ready for School by Michelle Hayter-Falconer and Nicole Ison
    • An Interview with Professor Les White by Hebah Saleh
    • The Medicine Cabinet: Quetiapine – a weak antipsychotic that is a great anxiolytic and excellent for acute agitation by Judith Longworth and Kenneth Nunn.
    • The National Roundtable on the Mental Health of People with Intellectual Disability: A Summary by Associate Professor David Dossetor.
    • Conference Reviews, Reviews, Upcoming Training and much more.
    School-Link Co-ordinator, Jodie Caruana says, 
    Please circulate the newsletter to your networks or anyone else who may be interested and encourage them to receive their own copy by signing up online here. 

    Library Thursday, 15th August 2013


    • Several titles from the UK Books Beyond Words series are in our library collection.  This promotional video explains why they were published, and how they can be used to support people with intellectual disabilities.  5m 53s
    • Another new resource of interest to older people with Down syndrome and their carers - This is our space: ageing with disability is a booklet newly released by Dept of Families, Housing, Community Services and Indigenous Affairs. It addresses how community organisations can welcome older people with all kinds of disabilities into their groups and activities. It is free to download in several formats.
    • Powerpoint presentations and photos from the Global Down Syndrome Foundation's Research & Medical Care Roundtable on held at the (US) National Down Syndrome Congress annual Convention in July are now up on the Foundation's website - free to download.
    • The Down Syndrome Research Foundation in Canada, currently has available three online videos on reading, Successful Strategies for Beginning Readers with Down Syndrome, accompanied by a set of free, downloadable, printable resources.

    Wednesday, 14 August 2013

    New website: Intellectual Disability and Ageing


    The content of the new website Intellectual Disability and Ageing is produced by the Australian Catholic University in conjunction with La Trobe University Australia and The University of Wisconsin-Madison.
    The Victorian Department of Human Services (DHS) saw merit in the staff health manual and the training manual developed as part of a 2010 - 2012 research project having a broader audience. ... (DHS) agreed to fund the development of a website on intellectual disability and ageing, that would include the materials used in the research project, together with additional information, exercises and links to further resources for improving support for ageing people with an intellectual disability. The peak body National Disability Services (NDS) Victoria agreed to host the website on the NDS website. (Intellectual Disability & Ageing - home page)
    While the website refers to some services and processes that are specific to Victorian health and disability services, there is much that will be useful to residential staff working in other States, making it a useful addition to the growing body of knowledge and resources available in this field. 

    The new Minister for Disability Services (NSW)

    The Hon Andrew Constance was recently moved from the position of NSW Minister for Disability Services, to become Minister for Finance and Services.

    The new Minister for Disability Services and Ageing and Minister for the Illawarra, the Hon John Ajaka MLC, takes some time out to introduce himself.



    Tuesday, 13 August 2013

    Research news update #6 for 2013

    It's National Science Week - a good time to catch up on research related to people with Down syndrome.

    UK and Europe Down Syndrome Research Forum 2013
    The Down Syndrome Research Forum is a regular event, sponsored by Down Syndrome Education International, at which researchers active in areas related to Down syndrome can meet, share ideas and discuss recent findings.

    The UK and Europe Down Syndrome Research Forum 2013 will be held at the University of Bristol on 17 and 18 September 2013. The  Forum offers a regular opportunity to share work in progress and seek support and advice from others working or interested in Down syndrome research. Researchers and postgraduate students from throughout the UK and Europe are invited to attend.

    Presentations are accepted on a variety of topics - for example, attention, speech-motor development, sleep, behaviour, early reading development, school reading interventions, memory training, language development, autism, early family communication, and more.

    Could Down syndrome hold the key to defeating Alzheimer's?
    Lachlan Mackintosh ABC Radio 612, 1st August 2013
    Could Down syndrome hold the key to defeating Alzheimer's? Queensland scientists have found a connection between the two using stem cell technology. Associate Professor, Ernst Wolvetang, from the University of Queensland's Institute for Bioengineering and Nanotechnology joined the program to explain. Audio file to download 6m22s

    DNA From Those With Down Syndrome Helps In Autoimmune Disease Research
    CBS Denver, July 15, 2013
    “People with Down syndrome get autoimmune diseases at a very high rate; almost a half of people with Down syndrome ... By studying people with Down syndrome we’ll be able to understand not only what causes autoimmune disease in Down syndrome, but also in the general population” ...

    Abide Therapeutics and UC San Diego awarded grant from Cure Alzheimer’s Fund to validate therapeutic target
    Abide Therapeutics, 16th July 2013
    “The results of this study will help better fit the pieces of the Alzheimer’s puzzle together,” said Tim Armour, president and CEO of the Cure Alzheimer’s Fund. Down syndrome is caused by chromosome 21 trisomy, which contains genes involved in Alzheimer’s disease, such as amyloid precursor protein (APP).

    Looking into Language: A Study of How Medical Students View Disability
    Rachel Cohen-Rottenberg, Disability and Representation, 26th July 2012
    In the paper “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability,’” Margaret Byron and her colleagues discuss a study they carried out to assess the concepts, descriptors, and images that medical students associate with disability.
    William Mobley, Global Down Syndrome Foundation Research & Medical Care Roundtable, 18th July 2013
    Basic Research Panel Presentation. William Mobley, MD, PhD, is Executive Director, Down Syndrome Center for Research and Treatment, UC San Diego.

    A fine portrait

    A portrait of Matthew Calandra, a Studio ARTES artist (who has Down syndrome), has been selected as a finalist in the prestigious Black Swan Prize for Portraiture, in Perth. The artist, Ben Rak, is a printmaking tutor at the College Of Fine Arts (UNSW) in Sydney. He choose to do a portrait of Matt after commissioning a portrait of himself from Matt last year. 

    Ben's portrait of Matt is fourth from the left, top row in this online gallery previewing the Black Swan finalists. The finalists' works will be exhibited from 20th - 30th September, 2013 in Perth.  

    Congratulations to both Ben Rak and Matt Calandra, and to Studio ARTES for introducing them.

    Monday, 12 August 2013

    News, commentary and resources related to the NDIS (DisabilityCare Australia) (5)

    Booklet: One big difference to lot of lives — An introduction to DisabilityCare Australia
    Videos and transcripts from the conference in Melbourne in June 2013

    Launch of DisabilityCare Australia in Western Australia
    Prime Minister and Minister for Disability Reform, Media release, 4th August 2013
    DisabilityCare Australia, the national disability insurance scheme, will become a truly national scheme with the historic agreement today between the Commonwealth and Western Australian Governments to a two year launch, commencing from July 2014.

    DisabilityCare Australia e-news
    Issue 1, 30 July 2013
    In this issue:  Message from the Chair; Open for business!; Why are we gradually rolling out DisabilityCare Australia, and what does it mean for you?; Regional reflections from Tassie and the Hunter; Meet DisabilityCare Australia’s staff; Results of the Practical Design Fund projects; What’s interesting on the website?; Sign up for updates.


    The Promise
    New web pages set up by the Every Australian Counts campaign for the NDIS, in preparation for the federal election - includes information about the NDIS, and links to candidates and policies from all parties, related to the NDIS.

    Dr George Taleporos, Ramp Up, 29th July 2013
    Three weeks after the launch, Dr George Taleporos reviews DisabilityCare Australia's glossy brochures and sexy website. He also speaks to one of its first participants and asks the Minister for Disability Reform, Jenny Macklin, for her first impressions about the implementation of Australia's most significant reform to disability services in our history.

    NDIS Engagement Project Roundtable Reports now availableCarers Australia, 30th July 2013
    The National Disability and Carer Alliance (has) completed the final phase of the NDIS Engagement Project ... Between August 2012 and July 2013 the Alliance (has) been speaking to people with disability, their families, carers and service providers about what matters to them in the design and implementation of DisabilityCare Australia, ... The final phase of this project involved a series of roundtable meetings to investigate how DisabilityCare Australia should meet the needs of certain groups within the community. These Roundtable Reports are now available for download, here.

    Gaps in disability housing the next challenge
    ABC News, 2nd July 2013
    As the excitement of yesterday's Hunter launch of DisabilityCare turns to action, there are calls to address immediately the gaps in adequate housing for young people with disabilities.

    $34 an hour won't cover expenses, provider warns
    Daniela Ongaro, The Daily Telegraph, 5th August 2013
    Disability services provider Andrew Richardson was "bemused" by the $34.05 hourly rate to provide disability services, which he said was not even enough to cover running costs ... "Everyone is working in good faith so we are confident (DCA) will work as fast as they can and come back with the revised pricing quickly."

    Saturday, 10 August 2013

    Weekend reading and viewing: 10th - 11th August 2013


    Improving Interface Design for People with Down Syndrome
    Jonathon Lazar. Published 3rd August 2013 Video 36m26s
    Presentation given by Dr. Jonathan Lazar, of Harvard University and Towson University, at the Tufts University Department of Computer Science, on February 28, 2013, related to Computer Interface Design for People with Down Syndrome

    The problem with Down syndrome, Parts 2 - 4
    Jisun Lee, Kimche Latkes, 2nd, 5th and 9th August
    A mother continues her reflections (she calls it ranting), on just why Down syndrome is considered such a problem. Part 1 appeared on 31st July 2013.

    Born with Down syndrome, Newark man wins respect powerlifting
    Kelly Bothum, The News Journal and Delawareonline.com 5th August 2013
    Friends and family say Jon, who was born with Down syndrome, is an example of what is possible when people aren’t tethered by labels.

    A Special Needs Guide to Haircuts and Fingernail Trimming
    Karen Wang,  Friendship Circle, 31st July 2013
    Do you dread the day that your loved one needs to have fingernails trimmed or get a haircut? Do you put it off until the broken nails leave scratch marks and the hair becomes matted? If so, you’re not alone.

    Election 2013 - four priorities for the 44th Parliament
    Craig Wallace, Ramp Up, 7th August 2013
    People with Disability Australia President, Craig Wallace, shares what he believes are the four key disability priorities for the next Federal Parliament.

    How to talk to your kids about special needs
    Gillian Marchenko, Chicago Parent, 5th August 2013
    It's great when parents initiate open, informative and loving conversations about special needs with their kids at home. But how many take the time to talk to their kids about disability? How many parents know what to say?

    Friday, 9 August 2013

    Teaching reading to people with Down syndrome: Busting the myths - Myth #5: The time for literacy learning is now!

    Fifth of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.

    Myth buster #5: The time for literacy learning is now!  
    Kathy Cologon, Macquarie University

    In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

    Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

    While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

    There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1)receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning,(4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

    In this blog I will discuss the notion of an optimal learning age.


    Optimal Learning Age

    Myth #5: If a child does not learn to read in his/her early years then it is too late for reading development.
    Reality: It is never too late to learn to read! Literacy experiences are very important in the early years, but if a person does not learn to read during childhood they can learn as an adolescent or as an adult.

    In the past few decades, we have heard much about the impact of early experiences on brain development, and thus the great importance of the early years of life. Economic modelling from Nobel laureate James Heckman demonstrating the gain-per-dollar-spent being greatest in the early childhood years, along with research into benefits of early intervention, has led to increased interest in research and practice in the early childhood years. 

    Early childhood experiences are very important for ongoing development and it is clearly imperative to support all children in having the best possible early childhood experiences. However, learning is an ongoing part of life – including literacy learning. Research with teenagers and adults who have Down syndrome provides evidence that learning to read is possible well into adulthood. We can conclude that the notion of a ‘plateau’ or point at which reading development ceases is another myth or ‘glass ceiling’. If someone does not learn to read when she or he is young they can still learn to read as an adolescent or an adult (as long as learning opportunities are provided).

    Many children need ongoing support for reading development throughout childhood and beyond – and it is never too late to learn. Ongoing opportunities for literacy learning beyond the early years, utilising age-appropriate materials that draw on a person’s interests, are essential. 

    Having said that, case study research has provided evidence to demonstrate that some children with Down syndrome develop reading ability at a very early age and that early reading development can have benefits for ongoing language development. Given the particular benefits that learning to read may have for spoken language development in children with Down syndrome, the opportunity to learn to read at an earlier age than expected for the general population may be developmentally important. Additionally, it has been shown that early literacy instruction leads to higher levels of later reading achievement in children with Down syndrome.

    In short, for a person who has not yet learnt to read (whatever his/her age), the time to get started on supporting reading development is now!

    For full details of the research I am drawing from see: Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

    In the news


    Kinda circus workshop on Tuesday 
    Sally Willoughby, Parramatta Holroyd Sun, 30th July 2013
    Special Olympics gold medal-winning gymnast Chris Bunton is sharing his skills by spinning plates and throwing circus sticks in a series of Kinda Circus workshops. The Olympian, who is also a member of Beyond the Square's ruckus ensemble, is an assistant tutor for the workshops for two to five-year-olds.

    Baby from Honduras gets life-saving surgery
    AnneMarie Harper, 9News. com, 25th July 2013
    Doctors say it is unlikely Sergio would have ever lived past his teenage years, so he and his mother were flown to Colorado. Dr. Steve Leonard, a pediatric heart surgeon at Rocky Mountain Hospital for Children, performed the six hour procedure to save his life. (TV news story and transcript)

    Mentor to thousands acclaimed by many
    Justin Whealing, Lawyers Weekly, 30th July 2013
    Legend is a term bandied about far too frequently, but it is an appropriate moniker to describe this year’s Michael Kirby Lifetime Achievement Award winner. Emeritus professor Ron McCallum received a standing ovation from nearly 200 people gathered at Melbourne’s Crown Casino on Friday night (26 July) when accepting the Michael Kirby Lifetime Achievement Award at this year’s Lawyers Weekly Australian Law Awards ...

    Push to expand intellectually disabled workforce
    Airie Ward, 7.30 Tasmania, 2nd August 2013
    Ability Tasmania is working to match intellectually disabled workers with suitable employers. Video: 8min 19sec

    Fairer treatment needed in the justice system for people with disability
    Nance Haxton, AM (ABC Radio), 8th August 2013
    A report released today by the Australian Human Rights Commission shows millions of dollars could be saved in the justice system around the country if people with a disability were more fairly treated. The report found that many people with a disability were unnecessarily put through the courts and ultimately sent to jail when early intervention programs would have had far better social and economic outcomes. Audio file and transcript.

    Thursday, 8 August 2013

    Easy English Guides: enrolling to vote and voting at the election

    The Australian Electoral Commisssion provides Easy English Guides for voter registration and voting procedures, online here.

    Voters must be registered on the electoral roll by 8 pm on Monday 12th August to be eligible to vote in the Federal Election scheduled for 7th September 2013.

    In the news: Justice for Jenny

    Big ideas, well stated, in Dave Hingsburger's commentary on a guardianship case in the US this week that determined that a woman with Down syndrome was quite capable of choosing where she lived, and with whom. A link to a post by the American Civil Liberties Union follows:
    Dave Hingsburger, Rolling Around in My Head, 13th August 2013
    ... Jenny and her single, strong, voice made it clear that she would be heard. And she was. She won her freedom, she won her choice.

    And we already know that freedom is statistically better than captivity.

    But think about this: Why is this battle being fought over and over and over again? What is it about the freedom of people with disabilities that is so frightening that battle after battle after battle has to be fought? Why does the idea that people with disabilities are citizens with rights upset us all so very much? ... read Dave Hingsburger's whole post here.


    Disability Is No Excuse to Deprive One of Civil LibertiesSusan Mizner, American Civil Liberties Union, 5th August 2013
    ... Jenny spoke for many other people with disabilities when she said clearly in her trial: "I don't need guardianship. I don't want it."

    On Friday a judge in Virginia denied guardianship to the parents of Jenny Hatch. Hatch will instead be able to live with her friends, couple Kelly Morris and Jim Talbert, as she had requested. This is a victory, but it should never have come to this
    ... read the full ACLU post here


    Woman with Down syndrome prevails over parents in guardianship case
    Theresa Vargas, Washington Post, 2ndAugust , 2013
    In a victory for the rights of adults with disabilities, a judge declared Friday that a 29-year-old woman with Down syndrome can live the life she wants, rejecting a guardianship request from her parents that would have allowed them to keep her in a group home against her will.

    The ruling thrilled Jenny Hatch and her supporters, who included some of the country’s most prominent disability advocates.

    “Oh my God,” Hatch said over and over again, shedding tears. “I’m so happy to go home today. I deserve it. It’s over. My God, it’s over.”
    ... read the full Washington Post report here

    Library Thursday, 8th August 2013

    A book review, from Jennifer Bekins:

    Is Speech-Language Therapy a Cure for Kids with DS?Jennifer Bekins, Talk - Down Syndrome, 6th August 2013
    ... recently someone recommended that I read Communicating Partners, by James MacDonald (AKA Dr. Jim), so I packed it as beach reading for vacation. I really like the book (so far) for several reasons ...  read Jennifer's full review here.

    Communicating Partners, by James MacDonald is available to be borrowed by Down Syndrome NSW members, from our library. Contact Jo at library@dsansw.org.au



    Wednesday, 7 August 2013

    First Aid Skills workshop: for people with Down syndrome, Cardiff

    Down Syndrome NSW is running a workshop for people with Down syndrome to acquire First Aid Skills. Having some knowledge of what to do in an emergency is an asset we all should have and should not be taken for granted.

    Gina Lemke (Counsellor and Trainer) is a well qualified presenter, so come along and enhance your confidence, ability and independence.
    • Learn skills to promote independent living
    • Find out what to do in an emergency
    • Peace of mind for parents
    • Certificate of Participation will be given
    Saturday 17th August 2013 
    10.30am - 12.30pm
    CARDIFF RSL, 45 Macquarie Road,
    Cardiff, NSW 2285

    $55 Members / $99 Non-members (light refreshments included) - Parents/ Carers/ Support Worker FREE with any paying attendee.
    Minimum numbers apply.

    Bookings: Contact Siena on 9841 4411 or email admin@dsansw.org.au

    Tuesday, 6 August 2013

    Fathers Day gallery - please send photos!

    If you'd like to contribute a photo for our Fathers Day gallery, please email it to  blogeditor@dsansw.org.au by Thursday 22nd August

    No names or caption will be posted. Just photos of Dads with their sons and daughters who have Down syndrome, that will speak for themselves (of course others can be in the photos too). Photos of Grandads and grandchildren are welcome too.

    Thanks!

    Centre for Disability Studies: short course on Person-Centred Facilitation, open to everyone


    The purpose of this short course is to provide an introduction to the theory and practice of person-centred facilitation. Opportunities will be provided to practice facilitation strategies and action methods suitable for leading groups.

    Wed 4 September 2013 - Wed 23 October 2013 (8 sessions, 2 hours per week)

    Centre for Disability Studies (University of Sydney)
    The Medical Foundation Building, Camperdown

    Presenters: Patricia O'Brien , Ray Murray

    For further information and links to online enrolment, visit the course website, here.

    Monday, 5 August 2013

    Symposium on Mental Health and Intellectual Disability: Sydney

    Untangling the knots and working together for better personal outcomes

    27 August 2013
    9.30 am - 4.30 pm

    Rosehill Gardens, James Ruse Dr, Rosehill

    Keynote speaker, Prof Julian Trollor (UNSW) on
    'Accessible mental health services for people with intellectual disability'
    • Cost: $50; free for parents and unpaid carers. Morning tea, lunch and afternoon tea provided.
    Brought to you by the BISevents Team, a collaborative effort of Ageing, Disability and Home Care, Autism Spectrum Australia, Sunnyfield, Interaction Disability Services and Wesley Mission
    Source: communityNet

    iPads in education: Down Syndrome NSW workshop

    • This is the second workshop to be presented by DSAQ staff in Parramatta on 16th September - the first is on the 'Reading Our Way' program - details here.
    • A second workshop on the 'Reading Our Way' program will be presented in Newcastle, on 17th September - details here.



    Monday 16 September 2013
    7pm - 9pm

    Parramatta Workers Club, 
    163-165 George St, Parramatta

    $55 members / $99 non-members

    Bookings: DS NSW office, phone 9841 4444 or email: admin@dsansw.org.au

    * 50 participants only *

    This session has a focus on the practical ways in which an iPad can be used for educational benefit. A range of apps are discussed including apps for communication, fine motor development, behaviour, numeracy and literacy. Information is supported by a number of videos showing the iPad and apps being used by students with Down syndrome.
    Presenters from Down Syndrome Association Queensland:
    Rachel Carr (Information and Training Coordinator)Amanda Corby (Education Consultant)

    Saturday, 3 August 2013

    Weekend reading and viewing: 3rd - 4th August 2013


    Coffee Reflections: Society and Syndrome
    Jennifer Bekins, Talk - Down Syndrome, 27th July 2013
    ... “No, scars never disappear. They are there to remind us of something that happened in our life to make us stronger." Comments, attitudes, and experiences may leave invisible scars on the heart ...

    Kaite O'Reilly, The Guardian (Book Blogs), 11th July 2013
    I was disappointed to read Paul Wilson's top 10 books about disability – what a missed opportunity. One of the slogans of the disability rights movement is "Nothing About Us Without Us"


    Theatrical ability
    Jenna Hand, artery, 15th July 2013
    ... When a handful of artists started a theatre workshop for people with intellectual disabilities in Geelong in 1987, none would have anticipated it reaching these heights. But Back to Back Theatre has flourished under Nash and Gladwin, its director for 15 years, to become an award-winning ensemble that is this year doing four international tours, a four-week run at the Sydney Theatre Company, three weeks at Melbourne’s Malthouse Theatre, and devising new work ...

    Viewpoint: 10 jargon phrases used for my autistic son
    Mark Neary (Guest blogger), OUCH, 24th July 2013
    I was recently comparing with a friend the way I present the everyday norms of my own life with the way the social care world presents Steven's life. We were having the conversation in a pub. If Steven were to go to that pub, or to a gym or swimming pool, for instance, he might be described as accessing the community.

    Lori and Miles Celebration of Love
    A lovely gallery of photos from a celebration of a couple's 27 years together.
    Becca, The Bates Motel, 1st August 2013
    Independence is a sneaky thing. For so long you dote and mind, and watch oh-so-carefully, you hold hands and cut food into tiny pieces so tender mouths don't burn, you carry and lift, find and recover, read, build, dress and put away. And then one day...when you least expect it ... you realize that don't really have to ...

    The truth about sleep studies in children with Down syndrome
    Maureen Wallace, She Knows (Parenting), 26th July 2013
    ... as the parent accompanying your child to a sleep study, you will get no sleep. None, people. Not a blink.

    Decisions, decisions, decisions,
    SpeakOutAdvocacy, 21 May 2013
    Casey and Reece talk about making choices and decisions. This is a DVD designed to teach young people with intellectual disability about choice and decision making. 3m 57s video


    The Massachusetts research published two weeks ago, on 'silencing' the third 21st chromosome in cell cultures continue to stimulate discussion across the internet. Here are some recent offerings:


    So Here's Us.... life on the raggedy edge, 1st August 2013
    ... when I was asked to speak on a radio talk show this week (CBC Radio – The Current) about breakthroughs in genetic research (Researchers turn off Down syndrome genes), it was harder than I expected.

    Before we silence Down syndrome, shouldn’t we try to understand it better?
    Mark Leach, Down Syndrome Prenatal Testing, 25th July 2013
    Reactions to the news of the researchers “turning off” the extra 21st Chromosome that is the genetic cause of Down syndrome continue to be shared. Yesterday brought the most concise explanation of the actual research and a question that has not yet been raised about it.

    The Problem With Down Syndrome: Part 1
    Jisun Lee, Kimchi Latkes, 31st July 2013
    Is there a problem with Down syndrome? Is having 46 chromosomes fundamentally better than having 47? If one can designate a certain genetic condition as less than ideal, what are ideal genetics? More importantly, where does this contemplation lead us?

    Friday, 2 August 2013

    Teaching reading to people with Down syndrome: Busting the myths - Myth buster #4: Ready already!

    This is National Literacy and Numeracy Week 2013

    Fourth of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.

    Myth buster #4: Ready already!  
    Kathy Cologon, Macquarie University

    In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.


    Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

    Charlie
    While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

    There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1) receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning, (4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

    In this blog post I will discuss the notion of ‘reading readiness’.

    ‘Reading Readiness’ or (Non)Linear Development

    Myth #4: All people need to learn the skills for reading in a linear process wherein each skill is dependent on the previously learned skills.
    Reality: Many people, including people with Down syndrome, have uneven development. Waiting for someone to achieve ‘readiness’ or master pre-requisite skills may prevent or at least limit reading development.

    In the past, the concept of ‘reading readiness’ – which is the idea that a learner needs to master a series of pre-reading skills before they can learn to read – ironically prevented many people from learning to read. In research with diverse groups of children, including children with Down syndrome, this concept of ‘reading readiness’ has been shown to be inappropriate and out-dated.

    ‘Reading readiness’ makes a series of assumptions about a person, for example in regards to their spoken language development, fine motor skills, contextual experiences, cognitive development, vision and hearing. In reality there are many variations in human development and there are also many different ways in which a person expresses their interests and developing understandings.

    'Reading Our Way' workshop in Newcastle: 17th September

    • Note: this is the second 'Reading Our Way' workshop to be hosted by Down Syndrome NSW in September - the first is at Parramatta, on Monday 16th September, details here.



    Tuesday 17th September 2013
    4.30 - 6.30 pm

    Cardiff RSL Club
    45 Macquarie Road, Cardiff 2285

    * 20 places only *

    $55 members / $99 non-members

    Bookings: Siena 9841 4444 or email: admin@dsansw.org.au
    This session introduces strategies and activities for teaching reading based on the latest research into teaching reading to students with Down syndrome. It includes an overview of the Reading Our Way program - a program designed specifically for teaching reading to students with Down syndrome and other visual learners.

    The session will include
    • An introduction to teaching reading
    • The latest research into teaching reading to children with intellectual impairment
    • Practical reading activities and strategies to be used in a school or home environment
    • An overview of the Reading Our Way Program
    • Details on implementation and purchase of Reading Our Way
    Presenters from Down Syndrome Association Queensland:
    Rachel Carr (Information and Training Coordinator)
    Amanda Corby (Education Consultant)

    Thursday, 1 August 2013

    More 2013 City to Surf runners,supporting Down Syndrome NSW

    Scott Lingard will have lots of company as he runs for Down Syndrome NSW in the 2013 City to Surf on 11th August ... even if he does not know who they are!  Here is a list of  runners registered to date, who have nominated Down Syndrome NSW as their charity - click on the name to be linked to their Everyday Hero fundraising page:
    The Flying Hogs are Ellen, Margo and Shak
    The Freedom Seekers
    Anne-Maree Moscos
    Felix Raharja
    Grant and Jaz
    Jan Drossemeyer
    Jill Everitt
    Lisa 
    Lorna 
    Melinda Koh
    Micheala Howells
    Rees Hughes
    Richard 
    Robert Baggaley
    Scott Lingard
    Thank you all, good luck with your preparation, and enjoy the run!

    Library Thursday, 1st August 2013

    Mental Wellness in Adults with Down Syndrome
    Dennis McGuire and Brian Chicoine, Woodbine House
    Every home should have a copy!
    The first section of the book offers a wealth of knowledge and insight about typical behavioural traits of Down syndrome and how to work with them to encourage mental wellness on a day-to-day basis. Topics include:
    Community and Family Support
    Self-Talk and Imaginary Friends
    Communication-Related Problems
    Memory Strengths and Deficits
    Emotional Development
    Tendencies Toward Sameness and Repetition
    Self-Esteem and Self-Image
    Lifespan Issues
    The second section on mental illness includes chapters on such conditions as:
    Depression and Other Mood Disorders
    Anxiety
    Obsessive-compulsive disorder
    Tic Disorders and Repetitive Movements
    AD/HD and Other Impulse Control Issues
    Autism
    Alzheimer disease
    This award-winning book is a must have for families. We receive many requests from members regarding purchasing this book. If you are interested you can order through your local bookseller or through online booksellers such as Amazon or Fishpond. You could consider putting a request in at your local library too.


    Special Request
    At Down Syndrome NSW we are seeking artworks (photos, drawings, paintings, mixed media etc) created by people with Down syndrome, to use as illustration in our publications, thereby showcasing and promoting the creative activities of people with Down syndrome.

    It is preferable that scanned and/or photographic images be at print resolution ie 300 dpi. Acknowledgement of the creator of the work will be given. Feel free to contact Jo at the library email address below for more information.

    Please submit scanned images and/or photos to library@dsansw.org.au  Please include details of the artists name, age and year of production, if possible, in a folder labelled “Images for DS NSW Publications by ____”