Wednesday, 31 July 2013

Self advocates have spoken at the NDSC Convention

From the (US) National Down Syndrome Congress's annual Convention held in Denver, Colorado, last weekend:
Our self advocates have spoken, and what they have to say is very important. Read the Self Advocate Resolution passed at our convention.

National Down Syndrome Congress

SELF ADVOCATE RESOLUTION

I have Down syndrome, and it is important to me that I am able to enjoy life to the fullest.

I want to volunteer, work and be seen as a productive member of society.

I want to spend leisure time with my friends and family and have lots of fun.

I want to be welcomed and have a place in community activities.

I want to live as independently as I can and make my own decisions.

I want access to a good education and opportunities for life-long learning.

I have Down syndrome, and I am proud of who I am!

Adopted Denver 2013

Actors of all abilities wanted for forum theatre project in Canberra

Date postedby Nican: 30 July 2013

Nican is seeking actors with and without disability to deliver accessibility and inclusion training to Canberra businesses and work places. 
Forum Theatre is interactive, problem-solving theatre that can be used to educate and raise awareness of disability rights and accessible communities. 
In Forum Theatre, a group of actors with lived experience of a social issue create a very short play about that issue, with an ending that is clearly undesirable. 
They perform the piece twice and the audience are invited to call “stop!”, come onto the stage and replace one of the actors to try and achieve a better outcome. It is a way for audience members to practice inclusive ways of working and to experience the barriers and attitudes that others face. 
Meeting for 3 hours every week, this FREE course will run until the end of 2013 ... visit the Nican website for details about the course and how to apply.
  • Applications close 16th August 2013
Nican is information on recreation, tourism, sport and the arts for people with disAbilities and supports an Australian society where any recreational opportunity values diversity, supports freedom and choice and strengthens inclusive communities (Nican website)


Tuesday, 30 July 2013

In the news ...

Technology a talking point in giving disability support
Daily Liberal, 29th July, 2013
People living with disabilities in the Dubbo region will have access to more support and services than ever before under a new initiative designed to bridge the city-country service gap.

The disability service provider Northcott has started rolling out a new program, which uses video conferencing technology to quickly link people in western NSW to specialist support services they previously had to travel hours to access ... read the full story here, on the Daily Liberal website




Ambassador for disability-inclusive development
AUS-AID,  29th July, 2013
Minister for International Development, Melissa Parke, today announced the Government’s decision to establish a new Australian Ambassador for Disability-Inclusive Development.Minister Parke said the ambassador will advocate for people with disability in developing countries to have access to the same opportunities as others and an equal say in the decisions that affect their communities. The appointment process will take place in the coming weeks.

“Australia will be the first country to have an ambassador focused solely on disability-inclusive development. We are demonstrating to the world how central the matter of disability-inclusion is to our international aid efforts,” Minister Parke said ... read the full story here.


Accessible Arts Newsletter #4, 2013 now online
The launch of Disability Care prompts us to share two best-practice examples of person-centred projects in this newsletter. Access to the arts, as audience and participants, can — and we might argue should — be included in support plans... Cheryl shares her story of how individualised funding has allowed her son, Damien Conte to develop his passion for painting ... And from the Riverina, we share the story of 8 Artists, a collaboration between emerging and established artists, with and without disability ... Accessible Arts Development Officer Sarah-Vyne Vassallo has been awarded a Churchill Fellowship to study integrated dance in the USA and Europe ... and we hope to see you at Second Skin, a showing of the 2013 work at Bangarra Dance Theatre on September 15.


Spain's Down Syndrome councillor makes history
George Mills, The Local, 29th July 2013
Spain's first-ever town councillor with Down syndrome is set to start work in the Spanish city of Valladolid on Monday, but many people with her condition in Spain find themselves unable to vote because of a legal loophole.

City to Surf 2013: Scott Lingard running for Down Syndrome NSW

Scott Lingard is generously running for Down syndrome NSW n this year's City to Surf on Sunday 11th August.  His Everyday Hero page reads:
In my quest to be fit I have decided to run the City2Surf in Sydney in August. This will be a great achievement if I get there.
To inspire me to keep training - I will be running to raise funds for Downs Syndrome NSW. They do great work supporting those with DS and their families. 
Having a daughter with Down syndrome has changed my life and I want to do all I can to raise awareness and support for this Association that will help her reach her full potential. 
So help me, help them!

Monday, 29 July 2013

Finalists announced for National Disability Awards

Congratulations to Down Syndrome Victoria - their Inclusion Support Service has been announced as a finalist in the National Disability Awards, by the Minister for Disability reform, Jenny Macklin.

The service, which provides support to mainstream schools with students with Down syndrome, is one of three finalists in the Excellence in Improving Education Outcomes category. 

The awards will be announced at the end of November to mark International Day of People with Disability.

Congratulations to all the finalists - the full list of 27 finalists in 9 categories is here.

Reading Our Way: Down Syndrome NSW workshop


Monday 16 September 2013
4.30 - 6.30 pm

Parramatta Workers Club,
163-165 George St, Parramatta

* 20 places only *

$55 members / $99 non-members

Bookings: Siena 9841 4411 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)

Saturday, 27 July 2013

Weekend reading and viewing: 27th - 28th July 2013


Brother's movie is act of love for sister with Down syndrome
Bill Stevens, Tampa Bay Times, 21st June 2013
Bobby Marinelli slipped into his sister's bedroom with a script and a yellow sticky note: "Let me know if there is a part you think you'd be good for.''

Temple Terrace dancer with Down syndrome delights audience
Joyce McKenzie, Tampa Tribune, 23rd July 2013
So you think you can dance? If so and you're contemplating a crack at being a contestant on the Fox Network TV show or some other dance competition, you may be inspired by 20-year-old Thalia Arbelaez, whose mindset since early childhood has been to "reach for the stars."

As you would expect, much of the media attention on Down syndrome this last week has been related to the research published last week, that demonstrated that the third copy of Chromosome 21 could be 'silenced' in trisomic cells in the lab. The possibilities have given both scientists and families much food for thought. The following links are only a small sample of the diversity of responses. The last one also considers the distressing story from the US, about the death of a man with Down syndrome in the US, in January:

Brendan O'Connor, Irish Independent, 21st July 2013
Brendan O'Connor nearly crashed the car when he heard that scientists were holding out the prospect of switching off the extra chromosome that leads to Down syndrome. As parents of a much-loved child with the condition, he and his wife discussed the issue and found it raised profound questions about what makes us who we are.

Three Reasons Why We Might Not Want to Cure Down Syndrome
Amy Julia Becker, Thin Places, 24th July 2013 
... on the whole, this research has me worried. I’ll try to explain why ...

A major discovery in Down syndrome
Emily Davidson, Vector (Boston Children's Hospital), 25th July, 2013
Last week, researchers at the University of Massachusetts published a fascinating and important study on Down syndrome in Nature. Lisa Hall, PhD, Jeanne Lawrence, PhD, and their colleagues were able to effectively “shut down” the gene activity of one of the three copies of the 21st chromosome in cells with trisomy 21. What exactly did they do? ... Does this pose an ethical dilemma? 

A Few Notes on the Invisible
George Estreich, Biopolitical Times (guest contributor), 23rd July, 2013
I’m just home from the annual National Down Syndrome Congress convention, and even given the fact that Down syndrome lands in the news with regularity, there were two big pieces of news during the week I was there.

Friday, 26 July 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth buster #3 Reading is more than functional!

Third 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 #3: Reading is more than functional! 
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.

Macy loves books
In this blog post I will discuss the notion of functional reading.

Beyond functional reading 
Myth #3: Reading instruction for people with Down syndrome needs to focus on functional reading.

Reality: While functional reading is one important part of reading, reading is about much more than this. People who have Down syndrome can and should be given the opportunity to read for learning and for pleasure.


A functional reading approach typically involves using sight-word instruction to teach someone a set of words that are considered ‘functional’ for everyday life. For example, STOP, DANGER, TOILET, EXIT, MALE and FEMALE.

Family picnic reminder: Sunday 28th July



Thursday, 25 July 2013

Dapto family goes from isolation to connection


Lisa Wachsmuth, Illawarra Mercury, 24th July 2013

Dapto mother Lorraine Diaz is wary of her daughter Amy using unrestricted social media platforms, so she's delighted with a new online forum specifically for people with disabilities. 
Mrs Diaz is also enjoying using the online forum to share information with other parents, medical professionals and service providers.Amy, 23, was born with Down syndrome and can't wait to get connected to people with similar interests and experiences via My Voice My Choice.
... read on here for the full article in the Illawarra Mercury, and to see a close-up of Sylvia Liber's  fabulous photo of Amy and Lorraine that accompanies it. 

Library Thursday, 25th July 2013: a new title

A Room of Golden Shells: 100 Works by Artists & Writers with Down Syndrome
Compiled by Woodbine House, 2013
On entering a room of golden shells, you might first notice how alike the shells are — their sameness of color, for instance—but soon you see the myriad variations in shape, texture, and size. Similarly, the artists represented in this volume share a common attribute — Down syndrome—yet their works of visual art and creative writing are as distinct as the individuals who made them. 
Created by artists ages 14 to early 50s from the United States and Canada, the 100 works were solicited via a contest and judged by Woodbine House staff. This dynamic collection of painting, ceramics, poetry, and prose marks one of the rare occasions that the creative talents of teenagers and adults with Down syndrome have been showcased outside their own community. Inspired by nature, popular culture, travel, master artists, faith, and dreams, these pieces dazzle us with mastery of craft, captivate us with a novel metaphor (such as the "golden shells" in 14-year-old Fiona Morris's poem), and tell us how it feels to live with a disability.
A Room of Golden Shells is now on the library shelves, and available for Down Syndrome NSW members to borrow. Contact Jo at library@dsansw.org.au to arrange a loan.

Young businessman and his family have big dreams

Big dreams, big future - no stopping them
Jessica Willard, The Cessnock Advertiser,  24th July, 2013:
Meet Jordan Threlfo – a happy, caring and respectful young man with an infectious smile and personality.  
He is also one of Cessnock’s most savvy business men, with his ‘Jordy Can Do Errands for You’ enterprise going from strength to strength in the past 12 months.  
Last week Jordy celebrated his 20th birthday surrounded by friends and family and fellow members of the Cessnock business community obviously grateful for all of his hard work. 
Jordy’s business has been designed as a time saver service for clients in the Cessnock CBD, with everything from paper shredding to picking up lunch orders on the jobs list. And he is not only the only go-getter in the family. 
Jordy’s 16-year-old sister Jessika is currently attending Mount View High school and also has big dreams for her future ... read the full article here, on The Advertiser's website.

Wednesday, 24 July 2013

Free online training in intellectual disability/mental health: new website launched

We have been looking forward to launch of these pages by 3DN (Department of  Developmental Disability Neuropsychiatry, University of NSW) - and we look forward to the development of additional pages designed to meet the needs of people with intellectual disabilities, and their families and carers:

Would you like to gain knowledge, skills and confidence to improve the mental health care of people with an intellectual disability?

People with an intellectual disability have a higher rate of mental disorders than the general population, but have less access to mental health care.

The University of New South Wales is providing free online training in intellectual disability mental health, in partnership with Ageing Disability and Home Care, NSW Health and the Health Education and Training Institute.


The content of the Intellectual disability mental health e-learning website was developed by a team of medical, mental and allied health professionals. The team has clinical, administrative and research experience and represents the health, welfare and disability sectors. People with an intellectual disability also had a role in developing content for the site, as you will see when you progress through the modules.

You can work through the training at your own pace. 


Topics include:
• Introduction to Intellectual Disability
• Living with Intellectual Disability
• Changing Perspectives of Intellectual Disability
• Introduction to Mental Disorders in Intellectual Disability
• Communication
• Assessment of Mental Disorders in Intellectual Disability
• Management of Mental Disorders in Intellectual Disability

Commissioner appointed for ALRC inquiry into Legal Barriers for People with Disabilities

23 July 2013:

A new inquiry will consider whether Commonwealth laws and legal frameworks create barriers to people with disability exercising their rights and legal capacity.

Attorney-General Mark Dreyfus QC today formally referred the inquiry into Legal Barriers for People with Disabilities to the Australian Law Reform Commission (ALRC), and appointed the Disability Discrimination Commissioner Mr Graeme Innes AM to the ALRC to support the inquiry.

“People with disability deserve the opportunity to make decisions affecting their lives,” Mr Dreyfus said.

In welcoming Mr Innes’ appointment, Minister for Disability Reform Jenny Macklin said that as Australia’s Disability Discrimination Commissioner Mr Innes has been a powerful advocate for people with disability.
Minister for Disability Reform, The Hon Jenny Macklin MP 
and Attorney-General, The Hon Mark Dreyfus QC MP

Tuesday, 23 July 2013

Where will we head in 2014?

Perry's thinking ...

... looking ahead, the possible dates for the next Scrapheap 5 will be around September 2014. Away from Easter. Still scouting out locations, but the Hills of North Eastern NSW look like a nice spot ...

Keep an eye on the Scrapheap Adventure Ride Facebook page for emerging news about the fifth (!) event, and the photos from this year's event posted recently.

Talk - Down Syndrome post: interview on childhood apraxia of speech

Jennifer Bekins, herself an expert speech and language therapist specialising in communication skills development in children with Down syndrome, interviews Shelley Myers, a colleague with particular interest and expertise in the diagnosis and treatment of childhood apraxia of speech in children with Down syndrome, on her blog, Talk - Down Syndrome, today
I believe that childhood apraxia of speech (CAS) should not be diagnosed in a child with (Down syndrome) until the child has been in therapy for several months or longer. The reason for this is that what may look like CAS on day one, may turn out to be an entirely different speech sound disorder. A lot can happen when a child is provided with the right approach to treatment.

Monday, 22 July 2013

21

From the International Day of People with Disability (IDPwD):
It’s an important milestone. It’s a reason to both reflect and project. And even more importantly, it’s a reason to celebrate! This year marks the 21st anniversary of International Day of People with Disability (IDPwD) and to help mark this milestone we want to share the stories of other people who are celebrating their 21st birthdays this year. 
The International Day of People with Disability team is seeking people with disabilities from across all parts of Australia who turn 21 in 2013 to be part of a national project to showcase their achievements and forecast their future hopes and dreams. 
We want individuals from around Australia to be part of the national story ... read on to see how you can apply.


21   21   21   21   21   21   

Saturday, 20 July 2013

Weekend reading and viewing: 20th - 21st July 2013


Oliver Hellowell's website
Oliver Hellowell is a young man who dreams of being a professional wildlife and landscape photographer one day. Oliver is 16 years old and has Down Syndrome.
Oliver Hellowell on Facebook.

Sandra celebrates her 70th birthday with friends
A Facebook post and photo from the Down's Syndrome Association in London.

Down Syndrome, Science, and Mystery
Jisun Lee,  Kimchi Latkes, 8th July 2013
Mystery. The unknown. The misunderstood. Science promises to unravel many mysteries. What mysteries about my child with Down syndrome might science unravel?

I Am Not A Mind Reader (And Neither Are You)
Dana Neider, Uncommon Sense, 15th July 2013
In discussing AAC (augmentative and alternative communication, in which a child uses something other than speech to aid their communication---signs, boards, picture cards, apps, devices) with parents, I am sometimes surprised by their lack of interest in using it at home with their children who have complex communication needs. Obviously all parents want to communicate with their children, so their resistance often comes from a well-intentioned place . . .

CBE grad "Dangerous Dave" exemplifies student success
Calgary Board of Education, 11th July 2013
“This is Dangerous Dave coming to you live,” says the host on the Mount Royal University radio. In the broadcasting studio, David Hall lights up doing what he loves, hosting his radio show three days a week.
Christine Reeeve, A Special Sparkle, 11th July 2013
Ever have a student (or 5) who line up at the door and are all over the other kids, in their space, and bothering everyone? Have a student (or 5) who are constantly fighting about where to sit at the table? These are challenges we face in general and special education. It's prevalent in younger grades, but some of our students still struggle with this at older ages. I may have a solution ... paper ... taped ... on ... the ... floor / table / chair...

Following on from posts earlier in the week:

The involuntary sterilisation of children with disabilities should be challenged
Stella Young, Ramp Up, 19th July, 2013
Do the recent Senate committee recommendations go far enough to protect women with disabilities from involuntary sterilisation? Stella Young believes more education, social services and support for families and doctors should be the focus of this complex issue.

UMass Researchers Make Down Syndrome Breakthrough
Joe Shortsleeve, CBC Boston, 18th July 2013 
Boston TV news interview, includes the mother of a young man, on research released yesterday.

UMass researchers block Down syndrome chromosome
Boston TV interview with Dr Brian Skotko, on new research.

Friday, 19 July 2013

Down Syndrome NSW families to form guard of honour for Rabbitohs, on Monday

Tom Skolarikis, Rabbitohs News, 18th July 2013
One hundred families with children affected by Down syndrome will attend the Rabbitohs’ Monday night clash against St George Illwarra at ANZ Stadium to raise awareness for Down Syndrome NSW, while forming a guard of honour for the Rabbitohs as they take the field ... read to find out more


Teaching reading to people with Down syndrome: Busting the myths - Myth buster #2 Cracking the code for independent reading!

Second 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 #2: Cracking the code for independent reading!
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.

The  first blog post addressed receptive and expressive language (what we say and what we understand). In this blog post we move on to phonological awareness and phonic decoding (awareness of sounds and applying these to reading).


Joel read the prayers of the faithful at his aunty's wedding

Phonological Awareness and Phonic Decoding Skills

Myth #2: People with Down syndrome cannot develop phonological awareness and phonic decoding skills.
Reality: As demonstrated through a growing body of research, people with Down syndrome can and do develop phonological awareness and phonic decoding skills.

While there has been a great deal of debate about a ‘phonics’ versus a ‘whole language’ approach to teaching reading, both in relation to teaching reading in general, as well as in regards to teaching reading to people with Down syndrome, childhood phonological awareness has been found to be the best single predictor of later reading success.

Phonological awareness can be defined as an individual’s ability to consciously focus on the sound structure of language. For example, the ability to identify the syllables in a spoken word.

DSE launches reading and language intervention user survey

Down Syndrome Education International (DSE) is seeking feedback from educators and parents about its reading and language intervention for children with Down syndrome. Your feedback help to continue to improve the intervention and the resources and support provided by DSE.
We now want to learn more about how the intervention is working in everyday practice. We also want to learn what we can do to further improve the teaching programme and to further improve the resources and support we offer to educators and to families.
We are therefore seeking feedback from educators working with children with Down syndrome who are using intervention - or have used the intervention - and the children's parents.

Thursday, 18 July 2013

'Silencing' the additional Chromosome 21: new 'revolutionary' research

A major breakthrough in research into Down syndrome has been widely reported in the specialist and general media today, following publication of a significant study at the University of Massachusetts Medical School, in the scientific journal, Nature.  

Referred to as 'revolutionary', 'groundbreaking', ' a real advance' and a 'landmark study', this work is stimulating discussion, debate and interest within the Down syndrome community worldwide. All reports caution that while it is a very important step, it is still laboratory science, several years from human trials, and not a 'cure' for Down syndrome. 

Below are links to the research paper, news reports and some commentary published so far.  There is bound to be more:

Translating dosage compensation to trisomy 21
Jun Jiang, et al, Nature (2013) doi:10.1038/nature12394, published online 17th July 2013
... Successful trisomy silencing in vitro ... surmounts the major first step towards potential development of ‘chromosome therapy’.

Researchers turn off Down’s syndrome genes
Beth Mole, Nature News, 17 July 2013
The insertion of one gene can muzzle the extra copy of chromosome 21 that causes Down’s syndrome, according to a study published today in Nature1. The method could help researchers to identify the cellular pathways behind the disorder's symptoms, and to design targeted treatments.

“It’s a strategy that can be applied in multiple ways, and I think can be useful right now,” says Jeanne Lawrence, a cell biologist at the University of Massachusetts Medical School in Worcester, and the lead author of the study.


Down Syndrome’s Extra Chromosome Silenced in Lab Cells
Elizabeth Lopatto, Bloomberg News, 18th July 2013 
(reprinted as a tablet-only edition by the Sydney Morning Herald, 18th July 2013)
“It’s a technical tour-de-force,” ... While the findings aren’t a cure for Down syndrome, they make what was once a mysterious disorder much easier to study ...

In laboratory dish, researchers shut down extra chromosome that causes Down syndrome
Carolyn Y. Johnson, Boston Globe, 17th July, 2013
(Abridged version - full text is available to Boston Globe subscribers only)
Researchers at the University of Massachusetts Medical School have shown that it is possible to do what had once seemed unthinkable—shut down the extra chromosome that causes the developmental problems and intellectual disabilities in people with Down syndrome ...
.... “It really is revolutionary, in terms of causing us all to rethink the one impossible thought—can you make, functionally, that extra chromosome disappear,” said Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, who was not involved in the new study. “I don’t think any of us thought it was possible or even within the current realm of scientific dreaming that we might one day be able to do it.”


Researchers ‘Silence’ The Chromosome Defect That Causes Down Syndrome
Carey Goldberg, CommonHealth, 17th July 2013
The journal Nature reports today that researchers may have found a way to correct the chromosome defect that causes Down syndrome, though it will be years before it could possibly be tried in humans.

Helen Briggs, BBC News, 17th July 2013
"... we have made it conceivable - not necessarily possible or effective, that still needs to be proven - but conceivable that you could use just a single gene to correct the over-expression of the whole chromosome. So it makes genetic therapy for Down's syndrome more conceivable where it really wasn't before."

Commenting on the study, Carol Boys, chief executive of the Down's Syndrome Association (London), said it was exciting new research from a very well-respected team.


  • Dr Brian Skotko, Co-Director Massachusetts General Hospital Down Syndrome Program, who has provided some of the commentary quoted above, and is a well respected member of the Down syndrome community, has provided useful information and links on this research through his Facebook page.

Reminder: National championship for swimmers with Down syndrome: Sydney, September 2013

Knox Grammar School Aquatic Centre
Wahroomga (NSW)

September 28 and 29, 2013

(Tournament dinner on Saturday 28th)

The entry form and schedule of events can be downloaded from the Down Syndrome Down Under Swimming Organisation's web page

Events for all levels - all swimmers have Down syndrome. Separate events for those with Mosiac and Trisomy 21. 
We are following the lead of Great Britain and Europe, where National Championships are held to encourage more swimmers with Down syndrome to compete.
The Knox Pool is a beautiful new indoor 25m pool, close to the station, so easy for interstate visitors. 
For further Information please email Sarah Harvey, Secretary, Down Syndrome Swimming NSW Inc
 

News, commentary and resources related to the NDIS (DisabilityCare Australia) (4)

DisabilityCare Australia on Facebook
There is now an official DisabilityCare Australia Facebook page, that you can subscribe to by 'liking' it.  You can ask questions and leave comments.
  • Please note that there is another Facebook 'personal' page, established by an unidentified individual, confusingly called Disabilitycare Australia, - it is NOT the official page and cannot speak on behalf of DisabilityCare Australia.
ADVOKIT-NDIS
This website has been developed by Disability Advocacy Network Australia Limited (DANA) to support advocacy for people with disabilities in connection with the National Disability Insurance Scheme (NDIS). DANA is committed to the vision of an Australia that includes and values people with disabilities and respects human rights for all. Thoughtful use of NDIS funded services and supports can make a strong contribution to achieving this vision.


Early Intervention transition to NDIS - Frequently Asked Questions
The Department of Families, Housing, Community Services & Indigenous Affairs has published a helpful FAQ about Better Start for Children with Disability (Better Start) and Helping Children with Autism (HCWA) transition to DisabilityCare Australia.

Dr George Taleporos, Ramp Up, 15th July 2013
DisabilityCare Australia shifts the power out of the hands of disability service providers and into the hands of people with disabilities. Dr George Taleporos looks forward to the time when people with disabilities are transformed from victims of a captive market into savvy consumers who can shop around. 

Different approach needed to develop disability care in Indigenous communities
Anthony Stewart, ABC News, 15th July 2013
Damian Griffis from the First Peoples Disability Network discusses the difficulties of developing disability care in Indigenous communities.
Karen Keast, Nursing Careers Allied Health, 9th July 2013
... “It will be business as usual in most cases (with the roll out), however better funding for participants of DCA may mean that some physios will see an increased number of clients with a disability, or an increase in inquiries on treating conditions associated with a disability,”...


NDIS launch delayed in ACT
Business Spectator, 16th July, 2013
The launch of the national disability insurance scheme (NDIS) in the ACT has been delayed by a year due to fears providers may be unable to cope with the new model, according to The Australian.

Disability Care
Kate Strohm, Siblings Australia (blog), 30th June 2013
...who is likely to have the longest relationship with the person with a disability? And who is likely to play a significant role in the social and emotional wellbeing of the person with a disability over a lifetime? Siblings, of course, but they don't rate anywhere in policy. The nature of the sibling relationship, not as 'carers' but as brothers and sisters, is a huge factor in both siblings being able to have a 'good life'. We need to ensure that early intervention or other services do all they can to nurture and strengthen the relationship between siblings.

Wednesday, 17 July 2013

Report of inquiry into involuntary sterilisation of people with disabilities

Interest in the report of the Senate Inquiry into The involuntary or coerced sterilisation of people with disabilities in Australia,  released today (17th July 2013).  A second report is to be presented on sterilisation of intersex people:

Overhaul call on disabled sterilisation
SBS World News Australia, 17th July 2013
Families who take their disabled children overseas to be sterilised should face criminal charges, a parliamentary inquiry has recommended.

The politician mother of a daughter with Down syndrome has helped shine a light on the forced sterilisation of disabled people. For 10 months, Sue Boyce and eight of her fellow senators have been investigating reports that some people with disabilities are being sterilised without informed consent.
Louise Negline, ABC News, 17th July 2013
Parents of intellectually disabled girls have spoken out in favour of sterilisation, saying it gives their daughters a better quality of life.

Calls for tighter laws around disability sterilisation
PM, ABC Radio, 17th July 2013 (inlcudes audio file and transcript)
It may come as a shock to some that people are still being forcibly sterilised in Australia. That may be because when it does happen, it happens to the disabled, and it's frankly, under-reported.
But it does happen, and sometimes sterilisation is even forced on disabled people who are capable of giving or withholding consent. Now a Senate committee wants that, at least, to change.But the committee stopped short of recommending a total ban on forced sterilisations.

Sterilisation of People with Disability
People with Disability Australia, page updated 17th July 2013
PWDA strongly supports the development of uniform national legislation to protect persons with disability from non-therapeutic sterilisation.

Better Start: funding for 300 workshops over two years across the country

From ProBono Australia News, 16th July 2013

A Not for Profit Consortium between Carers Australia and the First Step Alliance has received funding to deliver 300 workshops over two years across the country as part of the Federal Government’s Better Start for Children with Disability initiative.

The Federal Government says it has invested $900,000 in the initiative.

Our Better Start Early Days Workshops aim to provide parents and carers with practical information about eligibility for Better Start funding as well as advice about the assistance that is available to them to help them care for their child with disability,” the Parliamentary Secretary for Disabilities and Carers Amanda Rishworth said.

“The workshops will be delivered by with each organisation delivering a minimum of 140 workshops throughout Australia.

“Around 30 per cent of these workshops will be delivered to families living outside major metropolitan areas.

“Under our Better Start for Children with Disability initiative, children under the age of seven who have been diagnosed with Down Syndrome, Cerebral Palsy, Fragile X Syndrome, or moderate to severe vision or hearing impairments, are eligible for early intervention funding of up to $12,000.

“Carers Australia and the First Step Alliance are working together on the details of workshops including the timetable and locations,” Rishworth said.

The workshop information will be published at www.fahcsia.gov.au

Tuesday, 16 July 2013

Down Syndrome News: (northern) Summer 2013 issue now online

Down Syndrome News (the Newsletter of the (US) National Down Syndrome Congress), Volume 36, #2 , Summer 2013 is now available to read online or to download.

Articles include:

Promoting good health in individuals with Down syndrome
Managing behaviour in children with Down syndrome (Part 2) - in English and in Spanish
Self -advocate corner - Brandon Gruber
Book review: A room of golden shells


Monday, 15 July 2013

Research news update #5 for 2013

UK and European Down Syndrome Research Forum 2013

Down Syndrome Education International
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 ... 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.
The Down Syndrome Research Forum 2013 will be held at the University of Bristol on 17 and 18 September 2013. 

Drug improves cognitive function in mouse model of Down syndrome, study says
Erin Digitale, Stanford School of Medicine News, 2nd July 2013
... The drug, an asthma medication called formoterol, strengthened nerve connections in the hippocampus, a brain center used for spatial navigation, paying attention and forming new memories, the study said. It also improved contextual learning, in which the brain integrates spatial and sensory information ...

New Drug May Improve Memory For People With Alzheimer's
Andrea Dukakis, Colorado Public radio, 26th June 2013
A drug that improved memory loss in mice could eventually do the same for people. Human trials begin soon at the CU School of Medicine on the drug Leukine. Huntington Potter studies Alzheimer’s Disease in the school's Department of Neurology. And, he's part of the Linda Crnic Institute for Down Syndrome, which also does research on Alzheimer's in people with Down syndrome. (Audio file)

The SAGE-ID Study Newsletter, Edition 1
Department of Developmental Disability Neuropsychiatry (3DN), University of NSW, 24th June 2013
The (SAGE-ID) study began two years ago, and is looking at health in people with intellectual disability as they get older. We hope we can help to inspire positive change within the lives of people with intellectual disability and their families. The newsletter provides ...preliminary study findings, information on increased NSW target areas for study recruitment, an overview of our recent public forums, team member profiles.

Uuniversity of Utah research giving hope of better treatment for patients with Down syndrome
Devon Dolan, KSL.com  10th June 2013
New research coming out of the University of Utah could potentially change the treatments for people with Down syndrome. In the study, Dr. Julie Korenberg and her team at the University of Utah's Center for Integrated Neuroscience and Human Behavior used functional MRI to study how a brain with Down syndrome functions. For two years, the neuroscientists studied the brains of 15 people with Down syndrome and compared their brain images to those of 15 "healthy" control patients. It's the first time it's ever been done, and Korenberg said the discoveries are groundbreaking. (News video file and transcript)
The research report is available here by open access, at Science Direct

Transition to Retirement 
Centre for Disability Research and Policy (University of Sydney)
Policy Bulletin 2, 2013  (June 2013)
Due to increased life expectancy, the number of older Australians with a long-term disability, such as intellectual disability, is increasing. More people with disability are facing retirement. Planning for retirement is part of the life cycle for most Australians, but people with intellectual disability can be reluctant to leave their familiar work environment, and may find it hard to envisage life in retirement.

Left Behind: 2013 - monitoring the social inclusion of young Australians with self-reported long term health conditions, impairments or disabilities 2001 - 2011
Centre for Disability Research and Policy (University of Sydney), Policy Bulletin 1, 2013  (February 2013)
Disabled Australian adolescents and young adults are more likely to experience social exclusion than their non-disabled peers. The gap between the two actually widened between 2001 and 2011. Social exclusion in adolescence leads to poor outcomes, such as lower educational achievement and unemployment, in adulthood. It affects not only the health and wellbeing of the individual; it also impacts on their family and the wider community. The inability of people with disabilities to participate socially and economically is a loss to the whole of society.

Debunking Myths: Reading Development in Children with Down Syndrome
Kathy Cologon,  Australian Journal of Teacher Education: Vol. 38: Iss. 3, Article 9, June 2013
... (This) paper draws on past and current research evidence to consider five common misunderstandings or ‘myths’ that exist in regards to reading development in children with Down syndrome regarding (1) receptive and expressive language, (2) phonological awareness and phonic decoding, (3) ‘reading readiness’ or (non)linear development, (4) optimal learning age and, (5) reading comprehension. A case example is presented and implications for teaching practice are explored.
(Kathy Clogon is generously writing a series of six posts for Keeping Up with Down Syndrome NSW, based on her response to these myths about reading development - they will published once a week, from 12th July 2013 - the first one is here.)

Saturday, 13 July 2013

Weekend reading and viewing: 13th - 14th July 2013


Picking Rocks
Jen Logan, Down wit dat, 8th July 2013
I started out thinking that I could try to change a few minds and that would help create a world that was more receptive to people like Wyatt. I wanted to help build ... (a) world where the phrase "my son has Down syndrome" would not automatically generate uncomfortable looks, apologies or awkward exclamations of sentimental rubbish. Lately, I've been preoccupied with the subject of ableism and how it impacts my son. Western culture is rife with it. It is buried, deep within the rhetoric, deep within the language that we use to share our opinions to one another. 

BCTC graduate is a role model for us all
Merlene Davis, Lexington Herald-Leader, 11th May 2013
Read more here: http://www.kentucky.com/2013/05/11/2636776/merlene-davis-bctc-graduate-is.html#storylink=cpy
There will be more than 2,100 students graduating from the Bluegrass Community & Technical College Sunday, having earned a certificate, an associate's degree or diploma that they hope will lead to a better future. Among them will be honor graduate Megan McCormick, a highly motivated woman who will be receiving an associate's degree in education in hopes of landing a full-time job and independence.


When families fail parents of children with special needsMaureen Wallace, SheKnows - Parenting, 11th July 2013
... For many reasons, some family members may choose to withdraw from their relationship with a parent of a child with special needs or — probably worse — remain a part of their world but punctuate time together with crass, thoughtless and sometimes incredibly painful comments and questions.

DisabilityCare: getting down to businessAlex Varley, Ramp Up, 8 Jul 2013 
At the DisabilityCare Australia conference last month, there was a lot of talk of empowerment. For the first time, people with disability under 65 years of age would be able to shop around for services ... I was caught up in the enthusiasm and sense of a great change, but as it went on I felt there was something missing.

Two Women and What They Did
Dave Hingsburger, Rolling Around in My Head, 11th July 2013
We all slumped into our seats. Early morning classes are loved by no one. The professor strode in with a canister under his arm. There was a slight buzz, it wasn't excited anticipation that we were going to see a movie, it was mutual relief that we'd be able to nap for a half hour or so. We didn't nap ...

Schoolyard Bullies Will Learn From Coalition Ads
Stephanie Gotlib, Newmatilda.com, 9th July 2013
Politicians need to lead by example – and making fun of people with signs of speech impairment is hardly the way to guide changes to community attitudes about disability ...

Every school should be inclusive
Sue Buckley, 23rd June 2013
An inclusive school recognises that some 20% of the general education students will have additional educational needs during their school career before we begin to think of students with IEPs or Statements of Special Educational Needs.

Heather Irish, The Scotsman, 2nd July 2013
... people with Down’s syndrome all have different personalities just like everyone else. They also have different interests and their fashion senses differ just like everyone else. These truths are subtly showcased in a new short film that was featured in the recent Edinburgh International Film Festival. Review of the film Rainbow Connection, including a link to the short online version.

Callie Watson, AdelaideNow, 18th June 2013
Teresa Tidswell's dedication to karate has won her a legion of fans in Adelaide's north. The 31-year-old has earned a black belt, and is believed to be the first Australian with Down syndrome to achieve one of karate's most advanced qualifications ... "Having a black belt means a lot," she said. "You bet I'm proud. It's been a lot of hard work."

Disability and Retirement: inclusive and active ageing
Download presentations from this seminar hosted by the Centre for Disability Research and Policy (University of Sydney), on 14 June 2013 

Friday, 12 July 2013

'Teaching reading to people with Down syndrome: Busting the myths' - a series of 6 blog posts

Dr Kathy Cologon is a researcher at Macquarie University, in Sydney. Following publication of her recent academic paper (reference and link below), addressing some common myths about reading development in children with Down syndrome, Kathy has written a series of blog posts explaining the research for a wider audience. The images accompanying the posts have been generously contributed by Down Syndrome NSW members. Kathy's posts will be published here each Friday, for the next six weeks. We thank her for taking the time to provide this important information to our readers.


Charlie and his grandfather, Willem, love to read
Myth buster #1: More than meets the ear!
Kathy Cologon, Macquarie University

In recent research the mother of a 5-year-old girl who has Down syndrome shared with me this vision of her daughter as a reader:
“I want her to be a reader. Not just for bus timetables [or] stop signs, but a real reader, like to really love reading books for fun and to learn.”
Like so many other family members I have met, this mother is enthusiastic to support her daughter’s literacy learning. In the not so distant past, this would not have been considered possible. However, there is no question now that for this little girl, reading for pleasure and learning is a realistic and achievable goal. Unfortunately though, there are some remaining myths and misunderstandings that make working towards this goal harder for this little girl and her family than it should be.

I am writing this series of blog posts to parents and teachers in the hopes of supporting ongoing and appropriate literacy learning opportunities. However, 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!

DSEI online events on reading development

Down Syndrome Education International has published dates and times for a range of online events (webinars) to scheduled for the remainder of 2013, addressing reading development in children with Down syndrome.  Several dates and times are available for each topic.

Times are included for a number of international time zones (including Sydney), from which it is easy to calculate other local times. The next events are scheduled for

17th and 18th July 2013

Thursday, 11 July 2013

Library Thursday, 11th July 2013

I Can, Can You - this popular children's book by Marjorie Pitzer is now available for Kindle.

The top 10 books about disability
Paul Wilson, guardian.co.uk, 3 July 2013
Great books take us where we haven't been, illuminate dark corners and leave our own familiar world subtly changed, as if its axis has been marginally tilted. But despite literature's fervour to explore the far reaches of human experience, disability is for the most part disregarded, or at best pushed to the margins.

Harness the possibilities 
Resourcing Families has prepared a booklet based on the input and experiences of families in NSW. It
is intended to help families – particularly families of young children - develop a positive vision for their family member with disability. It provides ideas and strategies for building meaningful and fulfilling lives for people – both for families and people working with families.

Seeking your feedback on Better Start

Down Syndrome NSW Parent Support Manager, Judy Davidson, would like parents and carers to communicate their experiences with the Better Start for Children with a Disability Initiative.

Your feedback regarding the registration process, as well as access, cost, and value of services will be collected and inform our evaluation of the program thatwill be presented to Carers NSW and FaHCSIA.

Email: support@dsansw.org.au, or phone Judy on 02 9841 4401

Wednesday, 10 July 2013

Kinda Circus: for 2 - 5 year olds

Riverside Theatre and Beyond the Square are offering a 10 week circus workshop series for 2-5yr olds with and without disability.
Explore the joy and fun of circus in a safe, friendly and supportive environment. Celebrate the hula hoop, discover the joy of balance, engage with spinning plates, juggle one scarf or more, move with poi, dance with ribbon and adventure with diablo or circus sticks. 
Playing at circus will assist the development of gross motor and fine motor skills, give opportunities to practice co-operation and will facilitate confidence and laughter. Traditionally, circus has been a place of inclusion; so bring dad or mum, or an older sibling/ friend and they can play too!
Tuesdays July 16th - September 17th
9:30-10:30am

$10/ workshop. $90- upfront fee preferred. 
FIRST WORKSHOP FREE

Connect Studios, Connection Arcade, Darcy St, Parramatta
Closest accessible station is Parramatta (2 mins walk away)

To enrol contact Alison Richardson on 8839 3359 or alison@beyondthesquare.org

Family Planning: call for poster models



Family Planning NSW
is seeking gay, lesbian, bisexual and transgender people with intellectual disability to be included in their posters. Interested people will need to have their photo taken with or without their partner.

For more information please contact Rosalie Power, Health promotion Officer, Disability
P: 02 8752 4312
E: rosaliep@fpnsw.org.au


Tuesday, 9 July 2013

First Aid Skills workshop: for people with Down syndrome

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
10.30am - 12.30pm, Saturday 3 August 2013
Burwood RSL, 96 Shaftesbury Rd, Burwood

$55 Members / $99 Non-members (light refreshments included).  Minimum numbers apply.
Bookings: Contact Siena on 9841 4411 or email admin@dsansw.org.au