Address details


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


Tuesday, 23 August 2016

New from Woodbine House

Maryanne Bruni, Woodbine House, 2016
The popular book, Fine Motor Skills for Children with Down Syndrome is now available in a completely revised third edition. The author, an occupational therapist and parent of an adult with Down syndrome, describes how the characteristics of Down syndrome can impact the acquisition and progression of fine motor skills. She presents a thorough overview of the building blocks of fine motor development, from infancy through to adulthood:
  • Early arm and hand control 
  • Stability 
  • Bilateral coordination 
  • Sensation 
  • Dexterity 
... Woodbine House

Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method
David Stein, Woodbine House, 2016
... common behavior issues in children with Down syndrome can quickly become engrained and may even persist into adulthood. No parent wants that to happen, and thankfully, help is available! Dr. David Stein, a psychologist and Co-Director of the Down Syndrome Program at Boston Children’s Hospital, shares his approach to behavior management in this new book for parents.

Supporting Positive Behavior in Children and Teens with Down Syndrome examines how the brain of a person with Down syndrome works, how those differences impact behavior, and why bad behavior should not be viewed as a willful act. Governed by this new awareness, parents are in a better position to change and manage their child’s behavior using these guiding principles:
  • Be proactive, not reactive
  • Be consistent
  • Use visual schedules and Social Stories to direct behavior
  • Develop a token reward chart
  • Keep gut reactions in check
  • Teach siblings to ignore bad behavior
  • Learn effective disciplinary techniques
  • Know when professional help is neededSome of these parenting concepts are intuitive, others are not, but when they are followed consistently, children and teens with Down syndrome do their best behaviorally and the parent-child relationship remains as positive and loving as it should be 
... Woodbine House
Note - Woodbine House does not accept online orders from Australian buyers, but their titles are widely available from other booksellers.

Resources on hearing

This is Hearing Awareness Week in Australia. 

Conductive hearing loss is common in children with Down syndrome (and other forms of hearing loss can also occur), and most families are well informed about its management and importance (in the development of speech, for example). All newborn babies in Australia are now screened for hearing loss.

Hearing Loss in Children with Down Syndrome is a comprehensive fact sheet published by the Sydney Children's Hospitals Network, available online and to download as a .pdf file.

You will also find useful resources for providing information to other people in your child's life on the Hearing Awareness Week website, under the 'resources' tab, including a brochure about conductive hearing loss.

Monday, 22 August 2016

Review of NSW Guardianship Act

NSW Council on intellectual Disability eNews, August 2016:
The NSW Law Reform Commission is currently reviewing the NSW Guardianship Act and are looking for submissions. The Terms of reference for the review include models of decision making that should be employed for persons who cannot make decisions for themselves. 
The commission has produced background papers, a video and easy read guides and have an easy-to-answer Survey. Click here for more information.

People with Down syndrome


Deutsche Welle (DW) News, August 2016
... a group of Brazilians with Down syndrome (have) been employed as Olympic helpers. Their passion and enthusiasm is helping to spread the spirit of the Games.

Fife girl Abi set to make her dream Fringe debut
Tanya Soon, Fife Today, 3 August 2016
Abi Brydon (23), who has Down's Syndrome and learning disabilities, is a student at the Inspire project, a programme created by Cutting Edge Theatre ...

Nick's Hot Dogs, With Relish, Determination
Susan Campbell, Hartford Courant, 18 August 2016
When he was a kid, Nick Glomb watched his mother prepare food for the family in her kitchen. He knew enough to stay out of the way — this was his mother's kitchen, after all — but it was inspiring in the way his mother made so much from scratch, and her preparations planted a seed ...

Friday, 19 August 2016

Weekend reading and viewing: 20 - 21 August 2016



An Undimished Life
Chloe Udaly, True Parent, August 2016
Late in my second trimester I was hit with the thought, “What if this baby grows up to be someone I don’t like?”

At the time, my worst fear was that my child would turn out to be a drug addict, a religious zealot, or a Republican. My partner and I didn’t want to know if we were having a boy or a girl. We didn’t pick a name or a color for the nursery in advance. It would all be a surprise. So my first big challenge was to trust that I’d be able to conjure up the kind of unconditional love that parenthood demands. I focused on letting go of my fears and expectations, and told myself that my most important job was to support this person in becoming the best “whomever” they were born to be. It never occurred to me that the course of that life—of all our lives—would be profoundly altered in the moments leading up to birth ...


It wasn't necessary
Dave Hingsburger, Of Battered Aspect, 14 August 2016
... I saw a man with Down syndrome walking, with great purpose, through the mall. He clearly had a destination and he clearly wanted to get there.

That's it. That's all.

Hardly worth a comment, except that it is. Nothing will ever change the fact that I come from a time where that would never have been seen, never imagined and therefore never attempted. I come from a time that he'd not be walking with purpose to a destination he wanted to get to, he'd be shuffling down a hallway with habit and boredom yapping at this feet. I still notice this. I still notice freedom. I hope I always do ...


Why We Chose to Forgo Down’s Syndrome Testing
Kemberlee Kaye, Legal insurrection, 15 August 2016
... Down’s Syndrome is not debilitating, nor does it make those gifted with an extra chromosome any less of a person. Yet despite the trend towards normalization and destigmatization of so many issues, conditions, and challenges, Down’s Syndrome is still viewed as cause and often encouraged as reason to prematurely end pregnancy ...

Annie Gets Her Own Apartment
Annie Niswander (slide show - click on the bottom right corner of each page)
This is the story about how my family and I helped to create the house that I live in and how I get the support I need to live on my own ...

Robert Perske, advocate for Richard Lapointe, others with disabilities, has died
David Owens, Hartford Courant, 15 August 2016
For much of his adult life, Robert Perske worked on behalf of people with developmental disabilities, becoming the voice for many. Over the last 30 years, he worked on behalf of those he believed were wrongly convicted of crimes ...

International news, perspectives

Michelle McQuigge, The Canadian Press, 10 August 2016
Ottawa has overturned a decision that saw an Ontario university professor denied permanent residency in Canada because his son has Down Syndrome.

Felipe Montoya had been working at York University as a tenured professor of environmental studies when he and his family submitted their application to Citizenship and Immigration Canada ...

... But Montoya says the decision handed down earlier this year was overturned last week through "ministerial intervention" on compassionate grounds ...


Persons with disabilities: An enabling force in India’s growth story Atul Raja, Hindustan Times, 10 August 2016
The 2011 census tells us that 6-7% of the population, or 70-90 million people, in India are disabled. The actual numbers are larger. According to a WHO estimate, there are 1 billion Persons with Disabilities (PwDs) globally — which means 15% of the world population, on average, is disabled. Logically, India too will have 15% or more PwDs. But that figure doesn’t show up in surveys and studies thanks to the fact that disability is a social taboo and largely goes unreported. This is in addition to the fact that the definition of disability framed by India fails to effectively identify all PwDs. The Persons with Disability Act, 1995, adopts a medical definition. In reality, society tends to view impairment beyond the medical definition ...

Living with Down's syndrome in Kinshasa, DRC
Kait Bolongaro, Aljazeera, 15 August 2016
In a suburb of Kinshasa, a tightknit community gathers for lunch in a backyard. It is one of the few spaces in the city where its members go unnoticed and their families enjoy a short reprieve from daily discrimination ...

New Zealand mulls data-driven disability plan
Eden Estopace, eGov Innovation,16 August 2016
The New Zealand government is planning to develop a Disability Plan that would ensure that government agencies have the data necessary to make informed, evidenced-based policy decisions on the disabled community ...

China vows greater support for disabled Xinhua, 17 August 2016
China aims to improve its support and protection of disabled people by offering them more customized public services and products in the next five years, according to a State Council plan released Wednesday ...

AM Homes, The Guardian, 17 August 2016

Staged at the United Nations headquarters in New York and performed by disabled musicians, the Beautiful Concert – in honor of the 10th anniversary of the Convention on the Rights of People with Disabilities – aimed for an air of sedate harmony ...

Thursday, 18 August 2016

Abuse of students with disability in Australian schools

Family Advocacy has released the following statement in light of the 7.30 report (on ABC TV, Tuesday 16 August 2016) on abuse of children with disabilities in NSW schools:

NSW Government failing to deal with abuse of children with disabilities
The NSW Government received 64 complaints of abuse from the families of students with disabilities over the 21 month period from 6/01/2014 to 26/10/2015, but only one complaint resulted in withdrawal of employment, and only thirteen resulted in any disciplinary action being taken at all.

The complaints, accessed through Freedom Of Information, only include those instances deemed reportable conduct, and thus are likely to be a small portion of alleged abuse overall.

Family Advocacy Executive Officer, Cecile Sullivan Elder, stated that:

We believe children with disability are being abused in our schools, in light of incidents highlighted by the ABC 7.30 report last night and complaints from around Australia. The fact that all but one teacher in NSW in over sixty complaints are still teaching strongly suggests a failure of the Department of Education to prioritise the vulnerable children who are in their care. This inaction indicates a possible culture within the NSW education system of accepting or downplaying the occurrence of abuse and neglect when it comes to children with disability.

She continued:

This situation needs to be thoroughly investigated by the NSW Government. The complaints shown in the FOI are likely to be the tip of the iceberg of abuse of children with disability in schools. This comes from devaluing of children with disability, where low expectations and exclusion in special schools and units is the norm.

This revelation comes in the wake of the ABC 7.30 report last night, which highlighted a number of instances of alleged serious abuse in NSW schools. A number of Australian organisations also recently submitted 55 cases of human rights violations against children with disability in schools to the United Nations. Of these cases, the organisations state:

Overwhelmingly, children’s legal guardians were not satisfied with the results of their complaints. Of note, a theme emerged that internal inquiries conducted by Departments of Education protected teachers and schools (See http://autisticfamilycollective.org.au/schoolrights/ ).


School is not always a safe place for students with disability – this has to change
Sally Robinson, The Conversation, 28 July 2016
The United Nations has been asked to investigate dozens of incidents in which children with disabilities were allegedly assaulted, locked in dark rooms and restrained in Australian schools ...

Last days to book for 'Quality Living for Individauls and Families'



Topics include -
  • Individual quality living - principles, concepts and application
  • Family quality living – issues for families
  • Summary of recent research – recommendations for practice 
Opportunities for small group discussion surrounding
  • Early childhood
  • School aged issues
  • Young adulthood – further education, employment
  • Ageing and dementia

Wednesday, 17 August 2016

Representation of disability in the media

None of these articles is about people with Down syndrome, or intellectual disability, but many of the issues raised are applicable across all disabilities:

What to consider when the media asks you for your story (about life with ichthyosis or facial differences or disabilities)
Carly Findlay, 14 September 2016
... Subjects of articles and programs are often portrayed as a victim or hero. Commenters can be brutal. (And even when you write your own story, there's a risk of the sub-editors sensationalising a headline.) ...
Raising the profile of disability on TV
Seenit, 25 July 2016
At a time when people with disabilities continue to be underrepresented in TV. Over at Ability Superstore, we looked at some of the most successful TV series that have managed to represent those with disabilities, and how those characters are portrayed ...
More than ‘the disability show’
Chris Barton, Waterloo Region Record, 15 August 2016
Television's track record for telling stories involving individuals with special needs is spotty, and particularly tricky when it comes to comedy. That's something that "Speechless" executive producer Scott Silveri sounded well aware of during a panel at the Television Critics Association summer press tour in Beverly Hills ...

Gerard O'Dwyer in 'Off the Record': starts tonight, Carriageworks

Force Majeure's Danielle Micich goes Off the Record
Nick Galvin, Sydney Morning Herald, 15 August 2016
The usual process for producing any stage performance is first to consider the nature of the work then set about casting the roles.

But that is just one of the conventions Off the Record, a new collaboration between Force Majeure and Dance Integrated Australia, seeks to challenge.

"We've worked in reverse," says co-director Danielle Micich​. "It was like, 'Let's see who's out there and make the work about them' ...


10 Minutes with Gerard from OFF THE RECORD
Majeure News, August 2, 2016
... I love performing solo pieces. I love dance or basically anything with movement ...

RUCKUS posted on Facebook, 5 August 2016:
RUCKUS member Gerard O'Dwyer is having a bumper of a year! He's been in a feature horror film, flown to Cambodia for an international creative exchange and starred in a major theatre production. Now he's in 'Off the Record' by dance company Force Majeure.

Tuesday, 16 August 2016

Research news and commentary #9 for 2016

Perceptions of Crime and Safety focus groups
NSW CID e-news, July 2016
City of Sydney in partnership with University of Sydney, Institute of Criminology are undertaking research to gauge community views and perceptions on crime and safety issues and are looking for volunteer participants, including people with disability. Their aim is to collect data from a broad demographic who live, work or study in the City of Sydney LGA. Click here for more information.

A research participation opportunity from researchers at the University of Newcastle:
Do you have a child with a developmental disability? 
Researchers at the University of Newcastle would like to invite you to complete a survey exploring your experience of being a parent of a child with a developmental disability. In particular, we are interested in how cultural factors may or may not affect your experience. We are also particularly interested in the positive and the negative experiences that you may have had and how this has affected you in your day-to-day life. 
If you are interested in participating, click on this link. It will take you to our website where you can read more about the study before deciding if you would like to complete it or not. On the webpage you can also find a link to the survey.

The profile of social functioning in children with Down syndrome
KB Næss et al, Disability Rehabilitation, July 2016,  21:1-12. [Epub ahead of print]
Background: Practitioners and researchers have asserted for decades that social functioning is a strength in children with Down syndrome (DS). Nevertheless, some studies have concluded that children with DS may be at greater risk of impaired social functioning compared to typically developing controls. This cross-sectional study explores the profile of social functioning (social capabilities and social problems) in six-year-old children with DS, compares it with that of typically developing children and reveals possible differences in predictors between groups ...

Conclusion: Interventions for children with DS should strongly focus on integrating vocabulary skills and social functioning starting at an early age. Implications for Rehabilitation Children with Down syndrome need help and support in social functioning. Systematic training to optimize social capabilities and to prevent social problems should be prioritized. Structured and explicit learning of words important for social interaction with peers and for conflict solutions should be emphasized. Integrated interventions focusing on social functioning and vocabulary should begin in preschool to prepare children for participation in mainstream education.
  • The abstract is free online, access to the full text of the article requires purchase.

Family caring of older adults with intellectual disability and coping according to loci of responsibility
Teresa Iacono et al, Research in Developmental Disabilities, Volume 57, October 2016, pp 170–180
Background: A complex interplay of factors is evident in the response of family caring for older adults with intellectual disability (ID). The aim of this study was to explore the interaction of these factors ...

Conclusion: The loci of responsibility provide a means to understand carers’ appraisal of their role and the degree of control they have over it, and may account for varied coping strategies adopted.
  • The abstract is free online, access to the full text of the article requires purchase.

Outcome of adenotonsillectomy in children with Down syndrome and obstructive sleep apnoea
Mieke Maris et al, Archives of Childhood Diseases, 2 August 2016
Objective: To evaluate the outcome of adenotonsillectomy (AT) in a cohort of children with Down syndrome (DS) and obstructive sleep apnoea (OSA) ...
Conclusions: AT results in a significant improvement of OSA in children with DS without a change in sleep efficiency or sleep stage distribution. Severe OSA was associated with a larger reduction of OSA severity. Almost half of the children had persistent OSA, which was not correlated to age, gender or BMI z-score.
  • The abstract is free online, access to the full text of the article requires purchase.

News and commentary from the broader disability community

Supporting parents with intellectual disability
NSW CID e-news, July 2016
Various courses and dates - The Parenting Research Centre is providing training in two evidence-based parent education programs for professionals who support people learning difficulties and intellectual disability. Click here for more information.

P.E.I. woman 'free like a bird' after living in hospital for almost 2 years
Laura Meader, CBC News, 5 July 2016
'Now since she got out, she's a different person altogether'
A P.E.I. (Prince Edward Island) woman with an intellectual disability is living in the community after advocates worked to get her out of hospital when officials wanted to place her in a nursing home ...

Giving a name to a disability
Top Secrets, 5 July 2016
Offensive now but once quite acceptable, these terms figured in the research for a lengthy article I wrote in 2014 about 32 men who spent decades eviscerating turkeys in a meat-processing plant in Iowa — all for $65 a month, along with food and lodging in an ancient former schoolhouse on a hill ...

Tougher eligibility rules force thousands off the disability pension and into financial hardship
Breakfast, Radio National, 14 July 2016 (Audio file)
The Federal Government's welfare-to-work reforms are pushing thousands of people off the disability pension and into financial hardship. Welfare rights organisations say their work is increasingly taken up with these cases ...

The MIT Lab That’s Quietly Pioneering Fashion For Everyone
Meg Miller, Co.Design, 15 August 2016
For Aimee Mury, finding clothing that works for her 11-year-old daughter Eliza is a challenge, and not just in the ways typical to buying clothes for a pre-adolescent girl. Eliza is autistic, with a low sensory threshold for tactile input; things like seams, loose threads, and scratchy tags are endlessly irritating to her. And while clothing lines specifically for autistic kids have cropped up in recent years, they don't address Mury's biggest challenge with Eliza's clothes: She literally tears through them ...

Monday, 15 August 2016

Conference program released

The program has been released for the two day conference Challenge, Change, Create to be hosted by NSW Council for Intellectual Disability, 14 - 15 September in Sydney.

Topics to be addressed include:
  • supported decision making
  • children
  • the NDIS
  • planning
  • justice
  • creating change
  • health
  • the ADHC transfer
  • death and dying
  • inclusion
  • jobs

Arts - news and reviews

RUCKUS tames Time
Keith Gallasch, Real Time, #133, June-July 2016
... Set against a background of the turbulent rush of history and juxtaposed with a sinuous time-defying Cambodian dancer, Speed of Life’s transition from fraught labour to artistic freedom and philosophical reflection was magical ...

Film Review: 'My Feral Heart' (UK)
Dennis Harvey, Variety, 1 June 2016
... very pleasing and credible tale of a man with Down Syndrome suddenly forced into a group care facility when his elderly mother dies ... Luke (Steven Brandon) is a sunny bloke roughly in his thirties who lives with his widowed mother (Eileen Pollock). Though she’s sometimes impatient and snappish, they have a good relationship, and at this point he’s gone from being cared for to being her sole caregiver, basically running the household by himself. Yet when she passes away in her sleep one night, the authorities ignore all evidence that Luke can (and does) live independently, claiming there’s no option but for him to move into a state-funded “home” some distance from his lifelong one ...

Trailer (via IMDB)



Actors with Down Syndrome take spotlight at Chicago Shakespeare Theater
Vicki Ortiz Healy Chicago Tribune, 27 May 2016
Even their parents had serious doubts: How could a group of theater students with Down syndrome perform a play by Shakespeare — with its conflicted characters, surprising plot twists and quick-paced soliloquies?
But Katie Yohe, 31, a professionally trained actress who studied at the Globe Theatre in London and now directs a troupe of high school-age actors with Down syndrome, had seen it done. And she knew that with enthusiastic teachers, a supportive theater staff and energizing music, young people with Down syndrome could bring audiences to tears by performing the playwright's masterpieces. So she developed a script, scheduled auditions and alerted parents that her acting group would tackle Shakespeare classics. One mother pulled her daughter out of the troupe immediately ...

Restless at 25
Alan Brissenden, Adelaide Review,15 June 2016
A sigh of relief went through Restless Dance Theatre with the news that the company’s application for an Australia Council grant had been successful when so many others had lost out. The assurance of $1.2m over four years means plans for new works, invited choreographers and touring can now go ahead ...
Down Under review: bold parody strips down Cronulla riots to caricature
Sandra Hall, Sun-Herald, 14 August 2016
Don't expect any illuminating forensic insights to emerge from Abe Forsythe's film about the aftermath of the Cronulla riots. ... All up, it's a brave, boisterous attempt at capturing the mindlessness that powers mob fury ...
  • Chris Bunton has a role in this movie (released 11 August 2016), and appears in the trailer accompanying the review - he has some good lines.

Friday, 12 August 2016

Weekend reading and viewing: 13 - 14 August 2016


How and Whether It Is Possible to Integrate Without Exclusion?

Rhys Wyn Evans Huffington Post UK (blog), 25 July 2016
... The Girl is very sociable and is liked by quite a few mainstream children. But she is intellectually and physically slower than these mainstream peers. Despite this, she is very aware of what goes on that doesn’t include her.

In recent years, we’ve found that where parents tell their kids that, for this party, they should choose to invite, say, six or eight friends, it is unlikely that - and unusual for - the kids to pick the little girl with DS. (There is little or no ‘side’ behind that statement. It’s simply a factual observation.) Not, I hope, because they are prejudiced against DS but because they have MORE in common with, say, eight mainstream peers ...


Social Sensitivity
Dennis McGuire, UPS for Down Syndrome (Newsletter), April 2014
... Having good social skills and social sensitivity serves people with Down syndrome in many positive ways in their lives. This may help them to make and maintain positive relationships in all key areas: with family at home, with friends in social and recreation settings, with students and teachers in school and educational settings, and with bosses and fellow employees in vocational settings. Although social skills may be a great strength in persons with DS, there can be a major down side to this social sensitivity. We have found that people with DS may be too sensitive to negative feelings and emotions ...

  • This article is reprinted, with permission in the current issue of Voice (July 2016) - the journal of Down Syndrome Australia.
Dear The Camp Director Who Insulted My Disabled Brother
The Odyssey Online, 9 August 2016
... you said that the camp "isn't equipped for kids like that." Kids like what? Kids that have Down Syndrome? As I recall, the previous director was more than accepting and willing to work with "kids like that". The school district pays for "kids like that" to attend the community camp so "kids like that" can remain with their peers and aren't excluded. This camp focused on inclusion not just integration ...

The Gl-are And More
Dave Hingsburger, Of Battered Aspect, 7 August 2016
... He needs strategies to deal with that difference. Parents of kids with Down Syndrome and other disabilities are often told to pay no attention to the disability, 'to us he's just a child' ... well that's not who he is to the world. He needs strategies to cope and strategies to protect and strategies to confront and strategies to engage ... with a world that will see his difference first. Let's state it clearly, it's hard to live a "person first" lifestyle in a world that has a "difference first" value system ...

Census Fail Makes Disabled Australians Grin A Bit
Samantha Connor, The Stringer, 10 August 2016
... Whilst social media explodes in Census website-crash outrage, problems with the new government run NDIS portal has halted millions in payments to service providers. It’s been months now, but it’s caused barely a ripple in the media. Social Services minister Christian Porter has announced that there will be a ‘review’.

The portal that we’re talking about collects information that is far more sensitive than that collected by the Census. It’s not just our names and addresses we are talking about – imagine uploading your whole life plan, bank account details, intimate and personal details of your goals, dreams, sexuality, plans for the future ...

Ms. Harrari, is it you that gets to define quality of life?
Tessa Prebble, One in a Million Baby, 8 August 2016
... Maybe (the journalist) Harrari actually wanted to draw attention to the lack of supports and funding for special needs adults in their families. Maybe she wanted to highlight a vulnerable group in society that needs more attention and care? Maybe she wanted to make a real change.

Maybe. But in doing so she reinforced so many dangerous negative stereotypes and assumptions made by those who have no connection to the special needs world. Her article positively dripped with ableist rhetoric ...

Scrapheap Adventure Ride 7: 30 September - 2 October


Scrapheap is back for it's roughest toughest year yet!

The Scrapheap Adventure Ride is back for it's seventh great journey through the Aussie outback.

To the many people who supported scrapheap in the past we wanted to say a huge 

Thank You!

We would love your support again this year.

Help us reach our target of $100,000, to enable people with 
Down Syndrome reach their full potential.



This year that destination is Kallara Station, Tilpa, in western New South Wales, where all ‘Scrappers’ plus family, friends and supporters will meet for a weekend of fun and entertainment at a campsite from 30 September 30 to 2 October .

That's over 900km from Sydney!

We have 60 riders registered and have raised of $15,000 so far! The aim is to raise $100,000!

Over the past 6 years Scrapheap has raised over $400,000 for 
Down Syndrome NSW which has had a huge impact on people 
with Down syndrome and their families.

Thursday, 11 August 2016

Sagamihara: Who? Why?

Reverberations from the deadly attack on people with disabilities at Sagamihara in Japan more than three weeks ago are still raising new questions and perspectives on this horrific event (links to earlier discussions are posted here and here), as the international disability community takes it in:

Remembering the Sagamihara 19
David Perry, Pacific Standard, 9 August 2016
It was the deadliest massacre of disabled people since World War II. How do we honor the victims if we don’t even know their names?

Disability Hate Crime & The Sagamihara Victims
Michael Peckitt, Accessible Japan, 9 August, 2016
... One reason for the lack of discussion of the Sagamihara killings as a disability hate crime, is that whilst on April 1st 2016, the Law to Eliminate Discrimination against People with Disabilities became law here in Japan, and does effectively ban discrimination against people with disabilities, one cannot since April 1st, for example, erect signs that say ‘no disabled’ (and yes I have seen such signs as a resident in Japan), Japan has no national hate crime legislation that deals specifically with disability hate crime ...

Is Peter Singer dog-whistling perpetrators of disability hate-crime?
Naomi Chainey, SBS, 9 August 2016
Where is the line between euthanasia and eugenics?

... do Singer’s philosophies really serve to rally disability hate crime perpetrators? Was the association unfair? Some denizens of twitter seemed to think it hyperbole, as did Singer, insisting he was not at all sympathetic with Satoshi Uematsu - the 26 year-old mass murderer. “It is the parents and doctors making a decision in consultation,” Singer said, in regard to his idea that infanticide is justifiable in certain circumstances. “It is not some crazy guy going into a unit and killing people" ...


Added 12/08/2016:
Disability: no room for pity
Living While Disabled, 4 August 2016
How the Japan massacre relates to infanticide, abortion, and assisted suicide (and why the world’s been silent about it) ...

... There was no great outpouring of emotion for the 19 people dead and the 26 people wounded. When the attack on Pulse in Orlando happened, targeted at LGBT people, the response came from people outside the community as well as inside it, but after Sagamihara, the vast majority of the response has been from disabled people. This is probably a combination of racism (the victims being BME) and disablism* – the victims were disabled people living in a residential community ...

Resources

21 Welcomes
New from Canadian Down Syndrome Society
21 stories for new families, from CDDS members, with an introduction by Paul Sawka, CDDS Awareness Leader. Free to download.

Patient Handouts
Down Syndrome Program, Massachusetts General Hospital
Download information on a variety of health topics, including a new series on introducing new food textures, under the 'Feeding Resources' heading. Free to download.

Living Locally: Understanding Community Supervision
Dave Hingsburger, Service, Support and Success, Vol 5, #8, August 2016

When is washing the dishes, not just washing the dishes? When is taking out the garbage, not just taking out the garbage? When is a friendly greeting, not just a friendly greeting?

These routine tasks, important as they are, can become overlooked in terms of their role in your support of someone with an intellectual disability. We work in the community living movement; this is a civil liberties movement which has a set of ideas. One of those ideals is that people with disabilities have a right to a valued place in the communities in which they live ...


Free to download.

New children's book - Prince Noah and the School Pirates
Silke Schnee, Illustrated by Heike Sistig
It’s time for young Prince Noah to go to school. The prince, who starred in the book The Prince Who Was Just Himself, may be a little slower than other students, but he has no less joy in learning. In his kingdom, children go to school on sailing ships. There is a ship for girls and one for boys. There is a ship for children with an eye patch, a ship for children with one leg, and a ship for children who are slower learners. No one knows why there are so many different ships, but it has always been that way. 
Then a terrible storm drives the ships into the hands of pirates. The boys and girls realize that they will only escape if everyone does what he or she does best. Through their adventures, they learn that diversity makes us strong and that every person has something to teach us.
This delightfully illustrated fairy tale instills appreciation for children with Down syndrome and other developmental challenges, making it a valuable aid for teaching tolerance in the home or classroom. (Publisher's note)

Tuesday, 9 August 2016

News and commentary on the NDIS (52)

NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.



New NDIS portal launched -  and problems are experienced
In response to difficulties experienced with the re-launch of the NDIS portal (access to the website for payments and information), reassurances have been issued from the NDIA (the body responsible for implementing the NDIS), and a Government review of the functioning of the new portal has been announced:
  • Govt To Review NDIS IT System. Pro Bono News Australia, 6 August 2016 - Minister for Social Services and Disability Services Christian Porter has announced a review of the National Disability Insurance Scheme’s IT system after claims the system has been a “debacle”.
Sabotaging the NDIS
Christina Ryan, Advocacy for Inclusion Blog, 30 June 2016
Until recently Australia Post held the trophy for the most outstanding example of corporate self-sabotage in Australia when it increased its costs while reducing its postal service outcomes. Australians have been turning away in droves, a not surprising response to such a business model.
Now, however, the National Disability Insurance Scheme (NDIS) has made a play for the outstanding self-sabotage trophy by making access to the Scheme so unwieldy that recipients are unable to use it. Particularly those who want to self-manage their NDIS package so that it can be more flexible in meeting their needs ...

When the NDIS becomes a lifeline 
George Taleporos, The Drum, ABC, 3 August 2016
I support the right to assisted dying, but I also worry that people will look at me with my crooked and paralysed body and make that decision for me. The support provided by the NDIS ensures people like me also have the right to live ...

Access NDIS
Heike Fabig, Every Australian Counts, 9 August 2016
... Today the call came, and my children are officially participants in the NDIS, and so it begins. The scheme will need refining and tweaking, but I am optimistic the NDIS will deliver on its promises and cater for my children’s needs, and support their increased inclusion into society.

But now, the rest of the country needs to “get with the program”. Because while we are ready for the NDIS, I don’t think Australia is ready for us. Australian society remains fundamentally inaccessible to my kids ...

Chris Bunton: gymnast, actor, an accomplished young man

Chris Bunton, From St Clair in Sydney has had a very big few weeks - check out both of these articles for the fabulous photos that accompany his press interviews:

Actor stars in Cronulla Riots movie but still finds time to win gymnastics medals overseas
Elisha Pearce, Mt Druitt-St Marys Standard, 5 August 2016
Chris Bunton is a very busy man.

When he spoke to
The Standard he had just flown into Sydney from Florence, Italy where he won five medals at the Trisome Games — a competition for people with Down syndrome — and was about to leave to visit Melbourne where Down Under, a feature film he played a prominent role in, will premiere ...

Chris Bunton home from World Trisome Games for Down Under opening
Heath Parkes Upton, St Mary's Mt Druitt Star, 4 August 2016
Chris Bunton is living his dream.

Fresh from a five-medal haul at the World Trisome Games, Mr Bunton was straight on the press junket on Thursday ahead of his big screen debut.

Chris stars as ‘Evan’ in Australian black comedy Down Under, which opens on August 11.

An accomplished gynmast, Chris travelled to Florence, Italy in early July to compete against the best Down syndrome athletes in the world ...

Monday, 8 August 2016

Latest additions to 'events' page

    These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 

    Strengthening Communities - Making the Most of the NDIS
    Imagine More's 2016 Conference will offer an opportunity to hear from international, interstate and local stories of what is possible when you make the most of the NDIS whilst strengthening communities.
    Thursday 25th and Friday 26th August 2016 - Canberra

    Family Advocacy - presented by internationally acclaimed speakers Bruce Uditsky and Anne Hughson. After more than 40 years of practice and research, the full inclusion of students with intellectual and other disabilities in regular education classrooms continues to be problematic and often controversial. Attend this workshop to define and embark on quality inclusive schooling that benefits ALL children.
    Tuesday 6 September 2016 - West Ryde

    Inclusive Tertiary Education: Learnings from more than 30 years of practice
    Centre for Disability Studies -  workshop presented by Bruce Uditsky and Anne Hughson.
    While inclusive education in primary and secondary schools remains a controversial issue, inclusive tertiary education, which was developed by the presenters more than 30 years ago, continues to expand with proven results and unabated support from parents, university and college students, faculty and administrators ... The workshop will be of interest to: parents; students; educators; tertiary faculty and leadership; advocates; policymakers; funders; and disability-related professionals.
    Wednesday, 7th September, 2016 - Camperdown (Sydney University)

    Community Pathways workshop
    Family Advocacy - what authentic inclusion is has already been seriously misunderstood to the detriment of people with disability. This workshop will clearly define what it means to be included and how to be mindful of the trappings of less effective practices. Speakers Bruce Uditsky and Anne Hughson.
    Thursday 8 September 2016 - West Ryde

    Reading OUR Way webinar and workshop 
    Down Syndrome Association of Queensland - Reading OUR Way is an exciting reading program that is designed for students who are visual learners.
    The program supports early reading and word recognition and is a valuable literacy tool in the home or the classroom, using the whole word approach. 
    To register for the workshop or webinar, contact DSAQ for a registration form on 07 3356 6655 or office@dsaq.org.au
    Webinar: 5 - 7 pm 8 September 2016 (link will be sent on registration and payment)
    Workshop: 5 - 7 pm 12 September 2016 - Brisbane

    Friday, 5 August 2016

    Weekend reading and viewing: 6 - 7 August 2016

    BBC 3, 2 August 2016
    From being spoken to as if they are children, to assuming they can't work or have relationships. These seven statements are guaranteed to annoy people with Down's Syndrome ...




    My daughter has Down syndrome. Would I "cure" her if I could?
    Amy Julia Becker, Vox, 3 August 2016
    ... "What are you researching?" I ask. I try to sound casual, as if I am not greedy to hear more. This fourth-grade year is the first one when she has been willing, or able, to give me details about her day consistently.

    "Down syndrome," she says. "My big question that I wrote on my piece of paper is, ‘Why is Down syndrome scary?’ ... I haven’t answered the question yet. I know you were scared when I’s born. But I don't know why."


    Down Syndrome couple's lives touched community
    Patrick Hite, News Leader (USA Today), 3 August 2016
    If the doctors who thought John Ozyjowski and Dottie Baker would never be productive members of society had only seen what so many saw last week, you wonder what they would have thought.

    Julius, billy goats and a little inclusive story
    Catia Malaquias, Starting with Julius, 4 August 2016
    ... There was nothing extraordinary. Nothing inspirational. But something more … there was something legitimate, something common and something that should be ordinary ...

    The Evolution of an Accidental Meme
    Craig Frohle, 15 April 2016
    Several versions of this graphic representation of the difference between equality and fairness/justice have often been used in discussion of barriers faced by people with disability. This one from 2014, removing all barriers to produce 'liberation', is sourced from The Meme Centre.

    The meme was originally produced in 2012 by Craig Frohle, who is 'stunned and delighted' by its evolution, and application to a wide range of discriminatory practices world-wide.

    Local elections: easy read voting guide from NSW CID

    NSW Council on Intellectual Disability provides an impressive range of information and resources about the broad functioning of our communities for the benefit of people with intellectual disability, much of it through social media channels, making it readily available. Inclusion at work.

    In case you are not following NSW CID on Facebook (and we would recommend that you do if you use Facebook), here is their helpful message  about the September NSW local council elections:
    Did you know that many local Councils are going to an election on 10 September 2016? 
    NSW CID has produced the following Easy Read guide for the NSW Electoral Commission. 
    Councils that were not amalgamated will go to an election on 10 September 2016. 
    Councils that were amalgamated go to an election in 2017.

    Thursday, 4 August 2016

    Employment, work, jobs

    Disability doesn't mean entrepreneurial inability
    Tony Featherstone, Sydney Morning Herald, 7 July 2016
    Entrepreneurship might seem an unlikely pursuit for Australians with disability. But greater focus on self-employment can transform disability into ability, boost income security and social inclusion, and increase labour market participation ...

    What I've Learned By Hiring More Employees With Disabilities
    Scott Monette, Fast Company, 21 July 2016
    Everyone deserves a chance to succeed. And by my estimation, no group has been refused that opportunity more than people living with disabilities (PLWD). Sadly, less than one-fifth of this population is employed ...

    Melbourne café gives staff members with intellectual disabilities a chance to thrive
    Tilly Graovac, Nine News, 28 July 2016
    Michael Otto says he has already made “too many” coffees to count since the opening of the Chancez café in Epping last Wednesday. ...

    International news and commentary

    International Disability Alliance, 1 July 2016
    Today Mr. Colin Allen assumes the Chair of the International Disability Alliance (IDA), from Australia; elected by the Alliance’s 13 voting Members in March of this year. Colin Allen is a leading advocate for persons with disabilities globally, including as President of the World Federation of the Deaf since 2011. He is the second deaf person to serve as the Chair of IDA, of which the World Federation of the Deaf is a founding member. Mr. Allen succeeds Ms. Maryanne Diamond, AO, Immediate-Past President of the World Blind Union, and IDA Chair from July 2014 to June 2016 ...
    "I am very pleased that as a deaf sign language user, I will be able to advance IDA goals and promote its vision in my own language - sign language - and perhaps through my international leadership hasten the removal of barriers experienced by other deaf people in the world, thereby pursuing and fulfilling the UN Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals. While I am very concerned about the removal of barriers for the Deaf Community, as Chair of IDA, I am equally keen that current obstacles experienced by all people with disabilities are eradicated as only then will we have a truly inclusive community."
    People with Disability Australia has welcomed Mr Allen's appointment.

    A brief extract on their work from the International Disability Alliance website:
    ... The cornerstone of our work is the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). We promote the effective and full implementation of the UN CRPD, and compliance by governments and the UN system, through the active and coordinated involvement of representative organisations of persons with disabilities at the national, regional and international levels. The 2030 Agenda and its Sustainable Development Goals are also integral to IDA's work to promote inclusive, sustainable development in line with the UN CRPD and the rights of persons with disabilities ...
    Nigeria: Three Million Children With Disability Out of SchoolJudd-Leonard Okafor, AllAfrica, 14 July 2016
    Among an estimated 10 million children reported out of school in Nigeria by the UN Children's Fund, more than 3m of them are children with disabilities because "school environments are not inclusive and accessible" to them, says the Joint National Association's of Persons with Disabilities, JONAPWD ... Katie Grant, iNews (UK), 17 July 2016
    ... the superhumans appellation is intended to apply not just to the athletes but “anyone with a disability”, according to Dan Brooke, chief marketing and communications officer at Channel 4. And here a problem emerges.
    While our Paralympic stars may be treated with wide-eyed wonder and hailed by the public as superhuman, this simply does not reflect the reality for thousands more people in the UK who live with disabilities ...

    Focus on capabilities of kids with disabilities, ensure their rights
    Rose-An Jessica Dioquino, GMA News, 19 July 2016
    The United Nations Children's Fund (UNICEF) called on communities to focus on the capabilities of children with disabilities as well as look after their rights in order to understand them and integrate them better in society ...

    I Am a Black Woman With a Disability. Hear Me RoarCrystal R. Emery, Time, 20 July 2016
    Living at the intersection of 3 marginalized identities has made me stronger ...
    Disabled lives matter. We need to toughen the law on disability hate crime Nicola Clark, The Guardian, 28 July 2016
    Two incidents have occurred in the last seven days to highlight the fact that the rise of hatred, which I have campaigned against for eight years, needs greater attention in a specific area ...

    Wednesday, 3 August 2016

    Get More Skills Workshops - for people with intellectual disability

    From NSW CID e-news, July 2016:
    NSW Council on Intellectual Disability has been running groups for people with disability to help them prepare for the NDIS, make change in their community and meet new people. They are excited to be running two new groups starting in the next month and would love you to come along and be part of them. The details of the groups are below, and if you would like to come, please contact Brandon on 1800 424 065 or email brandon@nswcid.org.au

    South West Sydney NetworkMeets at Revesby Workers Club on the last Wednesday of every month. Open to anyone with disability and co-facilitated by a CID member. Download flyer here.

    Ballina and Wagga Wagga Networks
    Contact Brandon for further details.

    Food is provided at each meeting and they are a great way to make some new connections and get ready for the changes that are happening with NDIS roll out.

    DSA national journal, Voice - July 2016

    Down Syndrome Australia publishes the national journal Voice three times per year, in April, August and December.

    Subscription to the national journal is a membership privilege only, and is included in the membership fees of Down Syndrome New South Wales, Down Syndrome Victoria, Down Syndrome Western Australia, Down Syndrome South Australia, Down Syndrome Tasmania and Down Syndrome Association Northern Territory.

    The latest issue was released in July 2016, focussing on 'Inclusion - what does it really look like, in schools, the workplace and the general community?'



    Tuesday, 2 August 2016

    Scrapheap Adventure Ride 2016 - revving up

    Planning is well advanced for the 2016 Scrapheap Adventure Ride taking place 30 September - 2 October, to Tilpa. You can follow along by joining the Scrapheap Adventure Ride Facebook page. This article focusses on the intense preparation by the dedicated Team Inverell, who have supported and promoted the Ride, and participated over several years. They deserve our support too:

    Inverell riders hit road to raise awareness for down syndrome event
    Michèle Jedlicka, Inverell Times, 28 July 2016
    Two Inverell men have set out on an 5000 kilometre adventure to raise awareness of an annual charity event.

    Mick O’Brien and Col Meacham departed Inverell for the 2016 Off Centre Rally in Mungerannie, SA, via locations such as, Bourke, the Darling River Run, Broken Hill, Flinders Ranges, Oodnadatta, Track, Simpson Desert, Birdsville Track, Strzelecki Track and Cameron Corner.

    The motorcycle enthusiasts climbed aboard their older model Suzuki 185cc ag bikes to travel some of the most iconic outback roads in Australia purely to promote the September 2016 Scrapheap Adventure Ride, a now-annual event to raise funds for Down Syndrome NSW, and raise awareness of Down Syndrome ...

    'Reading OUR Way' webinar and Brisbane workshop

    From Down Syndrome Association of Queensland:


    DSAQ is excited to announce an upcoming 'Reading OUR Way' webinar  and workshop.

    Reading OUR Way is an exciting reading program that is designed for students who are visual learners. The program supports early reading and word recognition and is a valuable literacy tool in the home or the classroom, using the whole word approach.
    Webinar: 5 - 7 pm 8 September 2016 (link will be sent on registration and payment) 
    Workshop: 5 - 7 pm 12 September 2016 - Brisbane
    To register for the workshop or webinar, contact us for a registration form on 07 3356 6655 or office@dsaq.org.au

    For more information about the program, visit Reading OUR Way or contact Rachael at info@readingourway.com.au or 07 3356 6655

    Monday, 1 August 2016

    People with Down syndrome

    Annette Telfer Team Manager Australian Down Syndrome Swimming Team
    Shannon Byrne, Grandstand (ABC radio), 24 July 2016 (10m 32s)
    The Australian Down Syndrome Swimming team are world champions after a successful week in Italy. They will be bringing home 14 world records. Annette Telfer, team manager, spoke with Grandstand's Shannon Byrne about the teams success ...

    Stephen Matthews, Daily Mail Online (UK), 29 July 2016
    A woman who is celebrating her 75th birthday this weekend is believed to be the oldest woman in the world with Down's syndrome ...

    Taranaki's Arthur May celebrates 70th birthday, joins ranks of New Zealand's oldest citizens with down syndrome
    Hannah Lee, Taraniki Daily News, 24 July 2016
    For New Plymouth man Arthur May, celebrating his 70th birthday is an exceptionally major milestone.  The two time gold medallist has joined the ranks of those with Down Syndrome who have entered their (eighth) decade ...


    Jamie Brewer meets the  Up Club
    While Jamie Brewer was here in Oz for 'Kill Off', she also met members of Down Syndrome NSW's Up Club! Watch the reel of the event, which includes her stirring speech as well as snippets of 'Kill Off'. Also, a big thank you to the generosity of the Sherry-Hogan Foundation for supporting the event!

    Back from London with his trophy
    Margot Taylor, Otago Daily News, 26 July 2016
    Dunedin man Carlos Biggemann is lost for words when it comes to describing how he feels after winning the international section of the United Kingdom Down Syndrome photography competition.

    Through tears and a wide smile, he eventually explains it means "everything'' to him.

    In June, Mr Biggemann (25) travelled to London with his mother and sister to receive the Stephen Thomas award for his photograph Colours of Fire of a sunset over Uluru, Australia ...


    Introducing Our Ambassadors, Abby Earl And Nathan Basha!
    Bus Stop Films, 29 July 2016
    Bus Stop Films (BSF) is excited to welcome Abby Earl, star of Channel 7’s ‘A Place to Call Home’, and Nathan Basha, international speaker and award winning disability employment advocate, into the roles of ambassadors for Bus Stop Films. Together they bring with them a wealth of knowledge about the film industry and a passion to help us usher more diversity and inclusion into our cinematic landscape.

    For almost five years, Nathan Basha has eagerly participated in BSF workshops. He’s a high achiever and in 2015 he won the award for Excellence in the Employment Inclusion at the NSW Disability Industry Innovation Awards. Recently, he was a finalist in the 2016 NSW Young Australian of the Year Awards as well as the 2016 Young Achiever Awards ...

    Canberra conference

      These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 


      Strengthening Communities - Making the Most of the NDIS
      Imagine More's 2016 Conference will offer an opportunity to hear from international, interstate and local stories of what is possible when you make the most of the NDIS whilst strengthening communities.
      Thursday 25th and Friday 26th August 2016 - Canberra