Merry Christmas 2016

Best wishes for Christmas and New Year - happy summer holidays!

Regular posting will resume early in 2017.

The Down Syndrome NSW office will close on Thursday 22 December 2016
and will reopen on Monday 9 January 2017.

Down Syndrome NSW will continue to provide emergency support and assistance for new parents throughout the holiday break. Please contact us via Facebook private message in this instance, or call the office on 02 9841 4444 and leave a message and someone will return your call. We will attend to all other enquiries on our return on 9th January, 2017.

People with Down syndrome

James is crashing barriers
Barossa Leader, 2 December 2016
“Life’s good,” says 25 year old James White. The Nuriootpa resident couldn’t be happier after being appointed a Member Ambassador for Down Syndrome SA, one of only two to be given the 12 month role.

“I’m very proud – very happy,” said James ...

Tom has a paid job at The Environment Agency’s National Laboratory Service

Down's Syndrome Association (UK), 8 November 2016
Tom has lots of work experience, including in catering, but had been looking for a more permanent work challenge for some time. Although Tom has plenty of transferable skills, he faced many barriers to the workplace ...

Doctors said he would never hold a job — now he's retiring after 35 years

Colleen Jones, CBC News, 15 December 2016

The energy he brings and surrounds himself with is contagious. After Andrew MacEachern was born with Down syndrome in 1960, medical experts told his father he would never learn to read or write, or ever hold down a job.

He proved them wrong. On Wednesday, after 35 years delivering supplies around the Victoria General hospital in Halifax, MacEachern was celebrated by his co-workers at a well-earned retirement party ...

How a man with Down syndrome achieved his dream of becoming a firefighter

Brian Brueggemann, Charlotte Observer, 16 December 2016
Jason Eagan is a firefighter in Sandoval, Illinois, and has Down syndrome. Lt. Matt Horn says Jason is a valued member of the volunteer department ...

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource Volume Seven, Issue 3/4, December 2016

The NSW School-Link Initiative has been addressing mental health in schools since 1999. The Children’s Hospital at Westmead (CHW) has recognised the potential to further develop the existing School-Link Initiative by focusing on students with an intellectual disability.

The latest edition of the Journal of Mental Health for Children with Intellectual and Developmental Disabilities is now available on the School-Link website.

Highlights include:

• The Future of Our Children’s Mind, Spirit and Soul: Will the digital revolution destroy them or can schools grow them? by David Dossetor 
• Notes from the 19th Society for the Study of Behavioural Phenotypes (SSBP) International Research Symposium by Peter Wurth 
• The Medicine Cabinet: Atomoxetine by Judy Longworth 
• Addressing cardiometabolic risk factors in people with an intellectual disability by Jessica Walsh, Professor Katherine Samaras and Professor Julian Trollor 
• The 15th World Congress of the International Association for the Study of Intellectual and Developmental Disabilities (IASSID) by David Dossetor 
• IASSID Symposium on Quality of Life in Children with Intellectual Disability by Donna White 
• A report on the inaugural meeting of the Bowral Mental Health Intellectual Disability Professionals Network 
• Resource Spotlight: Carer Checklist by Carers Australia 
• KidsQuit 

School-Links encourages readers to circulate this link to your networks or anyone else who may be interested and to sign up to the e-list.

National Disability and Carers Advisory Council Communiqué

The National Disability and Carers Advisory Council (NDCAC) held its inaugural meeting on Wednesday 14 December 2016 in Canberra.

At its first meeting the Council discussed and agreed on the Terms of Reference and the role of Council in a number of key policy areas:

• National Disability Strategy (NDS) Reinvigoration
• National Disability Insurance Scheme – Transition 
• Disability Employment Services Reform
• Carer Reform and the Integrated Plan for Carer Support Services
• Regulatory Reform
• Working Groups

• Read the full text of the National Disability and Carers Advisory Council Communiqué  here.

BSWAT court case result

Many people with Down syndrome working in Australian Disability Enterprises could be eligible for payments. Information from People with Disability Australia, 16 December 2016:

Lengthy and dedicated advocacy work has resulted in a win for employees with disability. 

Today the Federal Circuit Court of Australia has approved the settlement of the class action between the Commonwealth and employees of Australian Disability Enterprises (ADEs) whose wages had been assessed under the Business Services Wage Assessment Tool (BSWAT). 

The decision is worth tens of millions of dollars that will benefit employees with disability working in ADEs around Australia.

PWDA encourages all eligible employees of Australian Disability Enterprises (ADEs) to register under the Business Services Wage Assessment Tool (BSWAT) Payment Scheme. This scheme provides a one-off payment to eligible ADE employees. 

For information on the BSWAT Payment Scheme, you can call the AED Legal Centre on (03) 9650 2533 and leave a message or email noni.lord@aed.org.au 

You can register by visiting the website at: https://bswat.dss.gov.au/, phoning the BSWAT Hotline on 1800 880 052, or email bswatpayments@dss.gov.au

New books from Woodbine House

New titles recently released by specialist publishers Woodbine House:

Whole Child Reading: A Quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays 

Natalie Hale, 2016

Discover the keys to teaching children and adults with Down syndrome and other developmental disabilities how to read for meaning. Written for today's busy parents and teachers, this easy-to-use guide explains how to "go in through the heart" to hook beginning and struggling readers with high-interest, individualized materials—flashcards, personal books, and modified trade books. The simple strategies described are designed to "teach to the brain" and are based on research about how we learn most easily and naturally ....

• Kindle/eBook and paperback editions are available. 

Fine Motor Skills for Children with Down Syndrome: A guide for parents and professionals

Maryanne Bruni, third edition, 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 ...

• Paperback 

Woodbine House does not accept orders to ship to Australia, but other sources are readily available that ship to and within Australia.

Weekend reading and viewing: 17 - 18 December 2016

Michael Berube: The Value and the Virtue of Raising a Child with Down Syndrome, (Audio 33m)
Lindsay Beyerstein, Point of Inquiry, 5 December 2016

... Berube tackles the misconceptions about intellectual disability from the perspectives of both a scholar of disabilities and that of a father. He challenges the misconception that intellectual disability detracts from the value of a life, as exemplified by his son Jamie, who Berube describes as witty, inquisitive, and full of a love for life. Berube asserts that like most children, when given ample amounts of love and attention, kids with Down syndrome have the best fighting chance at meeting their full potential and living a successful, happy life. Berube calls upon bioethicists, politicians, philosophers, and all of us to rethink how we approach disability, and advocates for changes that will move us towards a more inclusive society ...

Julius a model example of celebrated diversity

Amanda Keenan, The West Australian, 13 December 2016
A few episodes of Sesame Street and a benign blue box of nappies. That wasn’t everything but it was the beginning of something.

Catia Malaquias was at home with her baby boy Julius and eldest daughter Laura. What Sesame Street had that the nappy box didn’t was suddenly glaringly, infuriatingly apparent. The cheerful kid with Down syndrome reciting his ABCs in the brownstone-lined land of Sesame Street resonated with Catia in a way that the toddler on the nappy box — the child on the baby food jar, the family in the cereal ad — couldn’t possibly ...

Bonding In A Checkout Line

Erika Lantz, WBUR-FM Boston NPR 6 December 2016

... Right away, Sydney said, “She has Down syndrome. She has a big heart, like I do.” Suzie pushed the cart toward Sydney, and Sydney wrapped her in a hug. Then Sydney asked if Carly knew any sign language, and before long they were swapping different signs ...

Could this 81-year-old be the oldest person living with Down's syndrome?

Holly O'Flinn, Lincolnshire Live, 8 December 2016
A woman with Down's syndrome from Mablethorpe, who has just celebrate her 81st birthday, has defied all the odds - because doctors said she wouldn't live beyond 20.

Julia Pittaway, who was born in 1935, is believed to be the oldest woman in the world with Down's syndrome as she hits the grand age of 81 ...

Recreating Down Syndrome in Mice (audio: 12m 16 s)

Witness, BBC World Service, 9 December 2016
In 2005 British scientist Elizabeth Fisher and a colleague successfully transplanted a human chromosome into a mouse for the first time. It transformed medical research into the genetic condition Down Syndromethat affects millions of people worldwide. Professor Fisher tells Louise Hidalgo about the challenges researchers faced and their thirteen-year struggle to create the first Down Syndrome mouse ...

This Man Called His Little Brother With Down Syndrome The‘Perfect Mirror'

Kat Abianac, Parker Myles, 8 December 2016

6 years ago, Tyler Klefot’s brother entered the world in Louisville, Kentucky. He discovered he was a life-changing little guy. And the more he thought about it, the more he wanted people to know what he now knows. Then this big brother decided to share his thoughts about the last 6 years, on his Facebook page. Tyler wanted others to know that the more time he spent with Jonah, he discovered a secret ... His brother is his teacher. And he explains here exactly why ...

My Brother Is Disabled But He’s Not A Sob Story

Anne Suslak, Buzz Feed, 8 December 2016
We may have missed out on a traditional sibling relationship, but my twin brother’s cerebral palsy, hydrocephalus, and epilepsy has far from ruined our lives ...

A World that Wants Me In It': The Case for Conserving Disability

Rosemarie Garland-Thomson, ABC Religion and Ethics, 1 December 2016

... Arendt's and Hubbard's ethical assertions address the central question of my current scholarly project: why disabled people should be in the world ...

Worlds are spaces, complex material environments made up of people, the material artefacts we make and use, the geological habitat and other living things ranging from forests to viruses. Our lives occur in these spaces; how we think and what we do shapes them.Disability offers a good case study for investigating current and future world building. Modern cultures are now undertaking two contradictory world-building initiatives that are expressed in social, legislative, material, cultural and attitudinal practices ...

DSA website makeover

The new Down Syndrome Australia website is now live. It has a fresh new look, links to DSA's Easy Read website and importantly is now mobile-friendly.

Your feedback is welcome.

Commentary on non-invasive prenatal screening

A lot of the most recent media attention and commentary on non-invasive pre-natal testing/screening has arisen from UK proposals about providing this testing under the National Health Service there, but it continues to be discussed vigorously around the world:

Is Screening The Solution To A Down Syndrome Problem?

Renate Lindeman, Huffington Post, 29 October 2016

October is Down Syndrome Awareness Month. For weeks the web was flooded with beautiful photos and inspirational stories of men and women who became pre-school teachers, Zumba teachers, athletes, models, DJs, artists, etc. There has never been a better time to live with Down syndrome, or has there?

Fears over new Down's syndrome test may have been exaggerated, warns expert

Hannah Devlin, The Guardian, 5 November 2016
Leading statistician says evidence suggests there will be no change in number of terminations, and more than 40 miscarriages a year will be avoided ...

Why having Down syndrome is not a ‘choice’ but the systematic eradication is

Renate Lindeman, Huffington Post, 6 November 2016
... We can all agree however, that having Down syndrome is not a choice. Neither is being a woman, or a man, being colored, transgender, having a different sexual preference, a high IQ or short legs. The only choice we have is to prevent the births of babies based on any of these human traits. And while NIPT can potentially detect a range of genetic (chromosomal) conditions, microdeletions and duplications in an unborn child, it is focused mainly on detecting Down syndrome. That is a choice ...

Doctors question accuracy of prenatal tests that predict Down syndrome

Blake Hanson, WSOC-TV, 23 November 2016

... (Dr Brian) Skotko told Channel 9 that the 99 percent accuracy rate advertised on test manufacturers’ websites refers to the test picking up 99 percent of fetuses who have Down syndrome. He said it's important that patients ask for the accuracy of the test if it comes back positive.

Non-invasive prenatal tests, or NIPT, became popular in 2011. Skotko said the technology moved quickly, but the explanation of information to patients hasn't kept up ...

Other recent posts on NIPT

• A Lateline (ABC TV) report last month highlighted the need for better information and support for families who receive a high probability result of Down syndrome during their pregnancy. This link to Down Syndrome Australia's response to the program was posted on 23 November 2016

• The link below was also included in the most recent post on research into aspects of Down syndrome, here:

Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process

Blake Murdoch et al, Journal of Obstetrics and Gynaecology Canada,

Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation ...

• The full text available without charge online 

Art Gallery of NSW: Disability Inclusion Action Plan Survey

The Art Gallery of New South Wales is working with Accessible Arts to develop an exciting new disability inclusion action plan for 2017 – 2019.

The gallery is seeking your feedback to develop a plan that reflects the community’s needs and experiences.

One of the ways the gallery is collecting feedback is an online survey. This survey will take 5 – 10 minutes to fill out and your input is really valuable to shape the plan for the Art Gallery. The survey is for anyone who has visited the Gallery or would like to visit the Gallery. Please fill out the survey by Friday 23 December.

Click here to complete the survey online - or here for links to contact the Gallery if you need assistance.

Down Syndrome International: e-newsletter launched

The first issue of DSi News has been launched by from Down Syndrome International.

It will be a regular e-newsletter summarising DSi news for members and supporters, and also giving members a way to communicate their news with other DSi members, the global Down syndrome community and beyond.  Sign up for a free online subscription here.

2017 events

• Click here for Down Syndrome NSW events

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 

• All current events listings  

Performing Arts Summer School: Murmuration and Young Americans

In partnership with Murmuration, The Young Americans (YA's) will facilitate a week-long Summer School designed for participants with disability. Open to all people with disability, no previous experience required, age range 16 + Limited places.

Register and pay by Tuesday 20 December 2016 to save $50
30 January - 4 February 2017 - Glebe Town Hall and Marrickville Town Hall (accessible venues)

Having a Say Conference 2017

The Having A Say Conference has been going since 2000, it's not like any other conference as it is designed for people with disabilities and their supporters, not for service providers. 

8 - 10 February 2017 - Deakin University Waterfront Campus, Geelong (Vic)

Aladdin - the Musical: special performance

Disney and Autism Awareness Australia are partnering to present an autism friendly performance of Aladdin - The Musical. This specially adapted performance is suitable for all individuals on the autism spectrum, their family and friends. Slight adjustments to the production will include removal of strobe lighting and pyrotechnics, reduction of any jarring sounds and lights focused into the audience, house lights being left slightly up and relaxed exit and entry to the theatre.

Tickets go on sale: 9 am Wednesday 9 November 2016 through www.aladdinthemusical.com.au

Performance: 1.30 pm Saturday 4th March 2017 -  Capitol Theatre, Sydney

 Caring into the Future: the new world?
4 - 6 October 2017 - Adelaide

Abstract submissions must be made electronically via Carers Australia’s online abstract submission system. Abstracts must be received by 10 February 2017. Notification of Abstract acceptance will be sent on 31 March 2017.    

Right Relationship: How to create a partnerships between families and services that really works

Resourcing Families - presented by Margaret and Jeremy Ward. A free workshop for people with disability, family members and their friends; $50.00 for professionals

Tuesday 28 February 2017 - Albury

Wednesday 1 March 2017 - Deniliquin 

Thursday 2 March 2017 - Griffith 

www.focusonability.com.au

Australian Human Rights Awards 2016

The Human Rights Awards is the pinnacle of human rights recognition in Australia. 2016 is the 30th anniversary since the establishment of the Australian Human Rights Commission, provided an excellent opportunity to celebrate the significant milestones in human rights advancements made over the past 30 years. The Awards ceremony was held in Sydney on Friday 9 December.

Several people with disability and organisations serving them won awards and were finalists. The full list of award winners is here:

Community Organisations Award - Bus Stop Films. For approximately 8 years, Bus Stop Films has provided film studies and film-making opportunities for people with disabilities, as well as advocating for inclusion in the film industry.

• Bus Stop Films takes out Human Rights Award, Inside Film, 14 December 2016

Business Award: Joint winners - Lendlease, Westpac, and the Australian Network on Disability,  a collaboration that led to the Design for Dignity guidelines which incorporate accessibility and were implemented at Barangaroo Tower Two.

Tony Fitzgerald Memorial Community Individual Award, for an individual with a proven track record in promoting and advancing human rights in the Australian community - Jane Rosengrave, a proud Yorta Yorta woman with intellectual disability and a passionate advocate for people with disability. She has worked in Disability Support for the Royal Commission into Institutional Responses to Child Sexual Abuse, speaking up at the Royal Commission. Jane recently appeared on Lateline (ABC TV).

NSW Council on Intellectual Disability posted a photo of Jane with her award today, commenting:

With this year’s Human Rights Day theme of “stand up for someone’s rights today” we couldn’t think of anyone more deserving to win the 2016 Tony Fitzgerald Memorial Community Individual Award as Jane Rosengrave! 

Jane has raised awareness of the abuse and discrimination people with disability face by sharing her own story and we say a big congratulations to Jane for winning this award and for her dedication to human rights at the community level!

Catia Malaquias, a disability advocate, lawyer, mum of three and a director of Down Syndrome Australia and the Attitude Foundation was a finalist for the Tony Fitzgerald award. She founded the Starting with Julius project which aims to transform cultural attitudes towards people with disability, by promoting disability inclusion in mainstream media, advertising and education.

10th anniversary of the Convention on the Rights of Persons with Disabilities by the United Nations General Assembly

Next week marks the 10th anniversary of the adoption of the Convention on the Rights of Persons with Disabilities by the United Nations General Assembly. The ground-breaking convention set basic norms, frameworks for measuring progress, and reporting requirements for the political, social, and economic inclusion of the 1 billion people with disabilities worldwide — and has now been ratified by 170 countries. 

The past decade has seen real achievements in disability inclusion, with the incorporation of disability rights into the Sustainable Development Goals and other international accords, the creation of national action plans for disability inclusion, the adoption of dedicated funding streams by numerous donors, and a heightened awareness of the importance of disability inclusion ... Devex, 9 December 2016

• Celebrating 10 Years of the Convention on the Rights of Persons with Disabilities – CRPD10

2015 Survey of Disability, Ageing and Carers: report

Carers Australia and the Australian Bureau of Statistics launch crucial survey
Carers Australia, 2 December 2016

Carers Australia and the Australian Bureau of Statistics (ABS) officially released the 2015 Survey of Disability, Ageing and Carers (SDAC) at a press conference at Parliament House during National Carers Week.

Data from the 2015 SDAC showed the weekly median income of primary carers was 42% lower than non-carers. The total number of primary carers (those who provided the majority of assistance with core activities of daily living) had also increased in 2015 to 855,000 – a rise of 11%; and just 56% of primary carers between the ages of 15 and 64 participated in the workforce compared to 80% of non-carers.

To coincide with National Carers Week 2016, the ABS released a one page profile of carers in Australia, as well as a video breakdown of many of the carer-related statistics.

Casting call : 'children of differing abilities and backgrounds', Sydney

PARENTS/GUARDIANS HOW TO APPLY:

Send the following details to alice@northernpictures.com.au

• Full name, address, contact number, email, child's name and age
• Please also include a recent photo of your child, no larger than 8MB in order to be received by email

Note: by responding to this invitation you are giving Northern Pictures permission to store the information you provide and use it for advertising purposes only. We will not use your information or any materials you provide (including  (photos) for any other purpose without further permission.

The Art of Holding Space: Service Support and Success Vol 5, #12

Congratulations to Dave Hingsburger and Angie Nethercott, the editors and publishers of the online journal for direct support workers, Service, Support and Success, on completing their fifth year of publication! The journal is distributed internationally without charge. 

The final issue for 2016 focusses on the concept of 'holding space':

The Art of Holding Space
Kevin Alexander, Service Support and Success, Volume 5, Issue 12, December 2016
... As a direct support professional, I am always challenged with wanting to step in and do something for someone I support. I see them struggling with a task, and I immediately want to make it easier for them. I want to feel needed and do a good job.

However, I have learned over my career that doing tasks for others is not always the best option. Sometimes doing less is helping out more.

If we do everything for someone, then that individual never learns how to do anything for themselves. The absence of failure and struggle are great losses in a person’s life ...

• Each issue is also available in French - this one is here.
• Link to back issues of Service, Support and Success on the Vita Living Services website, here, including Vol 1 Issue 1 and Vol 1, issue 2, which are both about supporting people with disabilities through the holidays.

Weekend reading and viewing: 10 - 11 December 2016

If you are in Dubbo this Christmas, look up! The Western NSW
city is decorated with flags, and Emily Gardner is proud and
thrilled to be one of the festive faces on Main Street. She is
pictured with Michael Kneipp, the Western Plains Regional
Council Administration, and her mum, Cassie Gardner.

‘Liz Never Needed Fixing. Her Difference Simply Needed a Home’

Al Etmanski, The Tyee, 3 December 2016

“My name is Liz and I have Down syndrome." She strode onto the stage without notes, without preparation, and seemingly without a care. A hundred pairs of eyes were anticipating her spoken word poetry performance. A recipe for disaster. A disaster that I had tried to prevent from the moment she was born. It was the scene of my undoing ...

Disability day: When he struggled with words, Kayah Guenther danced
Thea Halpin, ABC News, 2 December 2016
Kayah Guenther has difficulty communicating verbally, but he has no trouble getting across a powerful message. For several years he has been using dance as a form of expression and communication — one that transcends language and overcomes barriers placed by disability ...

Shifting Great Expectations: Parenting a child with Down Syndrome (video 10m 11s)

Lito Ramirez, TEDxColumbus, 5 December 2016

... explores the changing nature of expectations we have for our children, especially when they are born profoundly different than you expect ...



The Other Option

Dave Hingsburger, Of Battered Aspect, 1 December 2016

... it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year ...

Sunday Brunch with Jess Tattersall

Simon Marnie ABC 702, 4 December 2016 (Segment starts at 1h 54m)

A delightful interview with Jess Tattersal has Asperger's syndrome and intellectual disability by one of her ABC colleagues, Simon Marnie, to mark International Day for People with Disability.

Can we learn to live with disability? 40 min audio 
Waleed Aly and Scott Stephens, The Minefield, ABC RN, 1 December 2016

'While we are obliged to extend a certain dignity to those who live with a disability, we would prefer that they did not exist to begin with.'

• You can view the short video Dear Future Mom discussed in this program in this post, and a summary of the Minefield  discussion is here.

Improving healthcare for people with intellectual disability: UQ online course open for registration

From the Queensland Centre for Intellectual and Developmental Disability, University of Queensland:

A world-first series of free online courses designed to improve healthcare for people with intellectual disability is again open for registration.

The ABLE XSeries, developed by a team of online learning specialists from The University of Queensland’s UQx and The Queensland Centre for Intellectual and Developmental Disability (QCIDD), had reached a large and responsive audience since its initial release in March 2016, said QCIDD Director Professor Nick Lennox ... read more about the course and how to register here

Sean Fisher is the face of the ABLE XSeries. 

Down Syndrome NSW 2017 education conference: bookings open

SMC Conference and Function Centre, Goulburn Street, Sydney 

Featuring Dr Rhonda Faragher, Dr Kelly Burgoyne (formerly of Down Syndrome Education International) and leading professionals from within the Department of Education and Training and the Catholic Education Office.

This is an essential two day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors. Parents and carers are also welcome.

• Booking details and early bird registrations are available now via the Down Syndrome NSW website

Will you speak up on mental health?

People with intellectual disability have been left out of the draft National Mental Health Plan
NSW Council for Intellectual Disability (blog), 30 November 2016
With more than 150,000 Australians with intellectual disability experiencing mental health disorders yet having poor access to health care, it is not good enough!

Right now you can have your say about this. Will you help make sure people with intellectual disability can get the mental health care they need?

Send an email to health Minister Sussan Ley today and let her know that mental health matters to people with intellectual disability ... read more here for a sample letter, and further information from NSW CID on how you can promote this effort.

Speak up series: Michael Sullivan tackles abuse and neglect
NSW Council for Intellectual Disability (blog), 29 November 2016
"I know saying good and ordinary sounds like they don’t go together, but they do. People with intellectual disability just want a good ordinary life, like anybody else."Last week our Chairperson, Michael Sullivan, was the key note speaker at the Ombudsman Forum - Addressing the abuse, neglect and exploitation of people with disability. Michael delivered an important and powerful speech and raised his voice to speak up on behalf of so many who haven’t been able to. As part of our Speak Up series we are featuring Michael's speech.

People with Down syndrome

ScreenAbility internships 2017 awarded
Congratulations to Audrey O'Connor on gaining one of eight paid internships in the first round of the ScreenAbility initiative launched by Screen NSW earlier this year, with recipients announced this week.

Audrey will be working with Giant Dwarf Theatre in Redfern, as a camera assistant. She is an experienced actor, writer and film-maker, having worked on Don't DIS my ABILITY campaigns, with Ruckus Ensemble, Sydney Theatre Company, Beyond the Square and with Bus Stop Films as an actor and cinematographer.

Emma Gordon-Smith Loves Blue Roo Theatre Company

Scenestr, 21 November 2016
Blue Roo is a Brisbane theatre company that focuses on and celebrates talented performers who are living with varying disabilities that by no means ever hinder their performance abilities ...

Tracksuit: The WA dance troupe putting performers with disabilities centrestage
Eliza Laschon, ABC News, 20 November 2016
A dance program in Perth is helping people with disabilities to build physical and cognitive strength through movement, but for Lauren Marchbank it is simply about doing what she loves.

This 25-Year-Old Aussie Lives And Works With Disability

Emma Brancatisano, Huffington Post, 22 November 2016

Nathan Basha is an office assistant at Sydney radio station, Nova 96.9, working alongside hit duo Fitzy and Wippa. He is 25-years-old, lives out of home and has an impressive infatuation with movies.

Cookie orders roll in at business owned by woman with Down syndrome

CBS News (Boston), 2 December 2016

Collette Divitto is now running her cookie business around the clock, CBS Boston reports. Since the station profiled the 26-year-old late last month who was born with Down syndrome, she has received orders for more than 25,000 cookies around the country ...

Best mates are now TV stars

Michelle Smith, Bayside Star News (Qld), 22 November 2016
Joe Surawski and Alex Procopis are best mates who do everything together, including making an appearance on television. Joe, of Bracken Ridge, appears in the latest Anglicare Southern Queensland ad now screening on both TV and in cinemas, and Alex, of Clontarf, has just finished filming for two episodes of an SBS comedy drama ...

Dept Human Service Services response on recent DSP hearing

The Department of Human Services has responded to the concerns of Down Syndrome Australia about the recent discussion of Down syndrome at the Disability Support Pension hearing in Canberra.

Down Syndrome Australia appreciates this prompt response but continues to have concerns about the inability of the senior bureaucrat to respond to a question of whether Down syndrome could be cured. DSA will continue to advocate on the DSP as people with Down syndrome should not be required to repeatedly provide evidence of their disability.

Please feel free to send DSA any examples or stories about problems with access to DSP to our info email. DSA will bring these to the attention of the Department and the Minister.

Read the letter DSA sent to the Department (PDF), and the letter received back from the Secretary of the Department.

News and commentary on the NDIS (60)

The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.

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.

Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:

• Find a great selection of resources relating to the NDIS
• Find out how the NDIS is working for other people
• Have your say about the NDIS
• Keep up to date with news and events about the NDIS

Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.
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ACCC releases guidance to consumers and businesses in the disability sector

Australian Competition and Consumer Commission, 2 December 2016
The Australian Competition and Consumer Commission has today released guidance to empower people with disability to use their consumer rights when buying goods and services under the new National Disability Insurance Scheme (NDIS) ...

National Disability Insurance Scheme: Western Australia adopts own model
Nicolas Perpitch, ABC News, 2 December 2016
Western Australia will operate a version of the National Disability Insurance Scheme (NDIS) unlike the rest of the country, after it came to an agreement with the Commonwealth over the adoption of a state-run model ...

National Disability Insurance Scheme puts those in need at heart of new campaign

Abigail Dawson, Mumbrella, 21 November 2016

The National Disability Insurance Scheme (NDIS) has recruited Loud to launch a state-wide campaign featuring NDIS customers.

Hiring workers, ensuring quality: responses from Hireup, Better Caring and My Supports
Libby Ellis, InCharge, 28 November 2016
In short: We’ve got a great conversation going about the ins and outs of new ways people can find support workers. Read on for our latest addition!

Geelong family takes National Disability Insurance Agency to court over NDIS deficiencies
Bethany Tyler, Geelong Advertiser, 1 December 2016
A Geelong family is taking on the National Disability Insurance Agency in a test case push for clearer funding policy ...

My need and of course the needs of many other people with severe disabilities for the NDIS

Peter Giblisico, On Line Opinion, 2 December 2016

The "movers and the shakers" in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained ...

Carers future uncertain under the NDIS says latest Anglicare report

Carers NSW, 2 December 2016
Launched today, Anglicare Sydney’s 'Carers: Doing it Tough, Doing it Well' report raises concerns about unmet needs of carers under the NDIS. It also indicates the need for more support programs for carers of people with a disability ...

2016 State of the Disability Sector Report released

National Disability Services (NDS), 5 December 2016

NDS has today released its State of the Disability Sector Report for 2016, launched in Melbourne as part of NDS’s CEO Meeting. The report paints the compelling picture that while the disability services sector remains committed to the National Disability Insurance Scheme (NDIS), many providers feel uncertain about the future.

Much of the report is based on results from the 2016 Business Confidence Survey (BCS) completed by almost 550 disability service providers. The survey, which focuses on the 2015-16 financial year, highlights the amount of change and growth required by the supply side to fulfil demand under the NDIS ...

• Note: NDS is the professional organisation representing the interests of disability service providers.

What's happening at Down Syndrome Australia? Here's an update from our CEO, Ellen Sladzien.

The recent public gaffe by a senior Human Services Department official who could not indicate whether Down syndrome could be cured, is just a timely reminder of the importance and urgency of having effective national advocacy to represent people with Down syndrome and their families. There continues to be a serious lack of understanding of Down syndrome and intellectual disability in our community and even amongst government officials.

The last two weeks, I have been focusing on meeting with politicians and senior government officials to advocate on a number of key issues.

Latest additions to 'events' pages

• Click here for Down Syndrome NSW events

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 

• All current events listings  

Right Relationship: How to create a partnerships between families and services that really works
Resourcing Families - presented by Margaret and Jeremy Ward. A free workshop for people with disability, family members and their friends; $50.00 for professionals
Tuesday 28 February 2017 - Albury
Wednesday 1 March 2017 - Deniliquin 
Thursday 2 March 2017 - Griffith 

Abstracts are invited for the 7th International Carers Conference 2017.

The demand for informal care in Australia and across the globe is increasing, and the number of unpaid carers - relative to numbers of older people and people with disability and health disorders - is falling. New ways of supporting families and communities to care and support carers is vital to meeting this demand.

Abstract submissions must be made electronically via Carers Australia’s online abstract submission system. 

Abstracts must be received by 10 February 2017. Notification of Abstract acceptance will be sent on 31 March 2017.

Weekend reading and viewing: 3 - 4 December 2016

Monopoly
Lizzy Leggat, DSA (UK) Journal #133, Spring/Summer 2016
When I’m asked what it was like growing up with a sister who has Down’s syndrome, I have often directed people to Emily Pearl Kingsley’s piece ‘Welcome to Holland’, which delivers a very nice analogy from a parent’s perspective. However, as time goes on I realise that it does not detail a sibling’s experience and that there may, therefore, be a gap in the metaphorical market for a piece that does ...

• There are more excellent articles in this issue of the DSA Journal, and back issues can be downloaded here.

Self talk
Adult Down Syndrome Clinic, posted on Facebook, 20 November 2016
People with Down syndrome frequently talk to themselves.  We have long believed that for our patients this was a method of learning, a coping strategy, a method of amusement when bored, developmentally appropriate and/or other functions.  Uses and benefits are being recognized in those without Down syndrome as well.  This article below shared by Dr. Dominiak reports some interesting findings:

It turns out – people who talk to themselves aren’t crazy, they’re geniusesGrayson Berman, Sharably, 6 September 2016
Studies show that talking to yourself can make you learn more quickly, think more efficiently, and boost long term memory ... Many experts and studies have actually done research in order to see how talking to yourself helps. Here’s the top five ways, all backed up by science ...

• For or more information on self talk in people with Down syndrome, look under Mental Health on the Adult Down Syndrome Center's web page.

A Father’s Speech to the Diocese of Providence 
Kevin Alviti, Down Syndrome News, Vol 39, #2, Summer 2016

... The greatest gift that my wife ever gave me was the ability to process this news on my own, at my own pace. Not once during this process did my wife say to me, “I am going to have this baby with or without you”  ...

• Down Syndrome News is the newsletter of the (US) National Down Syndrome Congress, published quarterly. Back issues are available from the National Down Syndrome Congress website.

The Pressure Of Perfection Shouldn't Apply To Children

Rachel Wong, Huffungton Post (Australian ed), 1 December 2016

Doctors shouldn't talk in worst case scenarios to mothers of children with Down syndrome. We are all for diversity these days, are we not? Identity is sacred and inclusiveness is the official word on people with disabilities. So why is every effort being made to eliminate certain people with a difference before they are born?

Doctor Notes: Stop portraying childhood disability as tragic or inspirational

Barbara Gibson, Toronto Star, 28 November 2016
By actually listening to disabled people, we realize they are “disabled by” their worlds more than by their bodily differences ...

Digby Webster and Nathan Basha screened their film Heartbreak and Beauty at a special event put on by The Guardianship Division of the NSW Department of Justice, in celebration of International Day of People with Disabilities. 

A very cool crowd included Screen NSW's Courtney Gibson (CEO) and Tracey Corbin-Matchett. Digby and Nathan did a great job answering questions on a panel and advocating for people with disabilities.

Heartbreak and Beauty was made by Bus Stop Films, who also provided the opportunity to present it at the Guardianship Division.

Photo used with the permission of Bus Stop Films.

#MyVoiceMyCommunity #WDSD17: World Down Syndrome Day 2017

Down Syndrome Australia is getting organised for World Down Syndrome Day, 21 March 2017:

It may still be a few months away, but here at Down Syndrome Australia we are already getting excited about World Down Syndrome Day 2017, and we'd love you to be getting excited about it too!

In 2017, WDSD will focus on enabling people with Down syndrome (and those who advocate for them) to speak up, be heard and influence government policy and action, to ensure that they can be included, on a full and equal basis with others, in all aspects of society.

We are encouraging people with Down syndrome to say #MyVoiceMyCommunity and show the world how people with Down syndrome participate in the community alongside everyone else.

Do YOU want to take part in this fun World Down Syndrome Day campaign? You can tell your story, share your photos and get the message out about Down syndrome at the same time! We need to know if you’re interested by Friday 9 December. Please email info@downsyndrome.org.au as soon as you can!

#MyVoiceMyCommunity #WDSD17

IDPWD event at Art Gallery of NSW next Wednesday

Front Up Artists Talks event at the Art Gallery of NSW in celebration of International Day of People with Disability - Emerge program artists will feature in Art After Hours at the Art Gallery of New South Wales at 6.30 pm Wednesday 7th of December 2016.

Tonight Art After Hours celebrates International Day of People with Disability. Start with a panel of four artists from the Front Up Emerge Program as they discuss their process of creating a collaborative art installation at Barangaroo.

• Full program for the evening here

'Australia's human rights record blemished by punitive approach to migrants' - UN rights expert

Down Syndrome Australia has called attention to the UN's views on immigration discrimination in Australia:

The United Nations Special Rapporteur on migrants has recommended that the exemption of the Migration Act from the Disability Discrimination Act be repealed, saying that children/family members with disability should not be considered a health risk, preventing their settlement in Australia.

Down Syndrome Australia heartily endorses this recommendation, and thanks Francois Crepeau for his important work and calls on the Australian government to take action.

From the overview of the report:

CANBERRA / GENEVA (18 November 2016) – United Nations Special Rapporteur François Crépeau today warned that Australia’s human rights record has been tarnished in recent years by migration policies which have increasingly eroded the rights of migrants, in contravention of its international human rights and humanitarian obligations ...  Australia's human right record blemished by punitive approach to migrants - UN rights expert

 From the full text of the End of Mission Statement:

Family reunionThe right to live with one’s family is a fundamental right for all, Australians and non-citizens alike. It is in the best interest of the child to live with both their parents and separation for long periods of time has a huge impact on the development of children left behind. Barriers to family reunion should thus be lifted at all levels and family unity should be systematically fostered and actively facilitated. Families should never be separated for immigration purposes for long periods of time. In particular, families of vulnerable migrants should never be separated at all. Family reunion should be available to all permanent residents, as well as to all temporary migrant workers who effectively spend more than one year in Australia. Children should always benefit from the most favourable immigration status offered to one or both of their parents, in order to guarantee family unity. Moreover, children or family members with disabilities should not be systematically considered as a health risk preventing the child or the family from settling in Australia ...

End mission Statement by the UN Special Rapporteur 

on the human rights of migrants on his official visit to Australia 

(1-18 November 2016)

Research news and commentary #12 for 2016

Culture in Better Group Homes for People With Intellectual Disability at Severe Levels

Christine Bigby and Julie Beadle-Brown, Intellectual and Developmental Disabilities: October 2016, Vol. 54, No. 5, pp. 316-331.

Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services ...

• The full text is available without charge online.
• Note that this article builds on two earlier articles about culture in group homes, cited in this article.

 Do Equine-assisted Physical Activities Help to Develop Gross Motor Skills in Children with the Down Syndrome? Short-term Results
Sergiy Voznesenskiyet al, Procedia - Social and Behavioral Sciences, Volume 233, 17 October 2016, Page 508

Background. Equine-assisted physical activities are believed to improve the physical, psychological, and social wellbeing of special needs populations. Methods. A study was conducted to assess the effect of an equine-assisted physical activity and an adaptive horseback riding program in comparison with conventional adapted physical education designed to develop gross motor skills measured by the Gross Motor Function Measure (GMFM-88) in children with Down syndrome in a special education institution ...

• The full text is available without charge online, under a Creative Commons Licence.

Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process

Blake Murdoch et al, Journal of Obstetrics and Gynaecology Canada,

Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation ...

• The full text available without charge online 

Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service

Jacqueline Milne, et al, Research and Practice in Intellectual and Developmental Disabilities, Published online: 18 May 2016

Children and adolescents with intellectual disabilities commonly have unmet complex health needs. Their parents often experience barriers in locating and accessing services to assist in diagnosing and managing those needs. In response to this service gap, a pilot Paediatric Assessment Clinic was established under the auspices of a large paediatric hospital, to offer a comprehensive disability health service for children aged 6 to 18 years with intellectual disabilities and complex health needs ...

• Unpacking complex health needs. Commentary on 'Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service' (Milne, Johnson, Lord, Ong, Tomsic and Silove, 2016), Teresa Iacono, Research And Practice In Intellectual And Developmental Disabilities, Published online: 18 July 2016

Together

Cambridge Intellectual and Developmental Disabilities Research Group, Cambridge University, 17 May 2016
A group of Cambridge University researchers have made a film alongside people with Down’s syndrome to show that there is only one way we can defeat dementia; Together. Researchers from the Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG) have been investigating the links between Down’s syndrome and dementia for almost two decades. Most recently, they have focused their efforts on using state of the art imaging techniques to look at the brains and the eyes of people with Down’s syndrome in the hope of finding a biomarker for Alzheimer’s disease ...