Down Syndrome Australia responds to Lateline Story on prenatal testing and support

The story broadcast on Lateline  (ABC TV 1) last night highlights the need for better information and support for families who receive a high probability result of Down syndrome during their pregnancy. Many parents in the Down syndrome community have said that the information they were given was outdated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.

The Lateline story not only presents the experiences of parents, but very importantly features Nathan Basha, eloquently voicing his perspective as a person with Down syndrome. 

The 22 November 2016 episode of Lateline is now available online until 10:30pm on 6 December 2016. The segment starts at 3m 14s.

This media release also gives an update on Down Syndrome Australia's current work in this area, and provides links to some of the resources we have produced for parents and health practitioners:

The story broadcast on Lateline (22 November 2016)  highlights the need for better information and support for families who receive a high probability result of Down syndrome during their pregnancy. It is essential that good information is provided to support informed decision making in regards to testing and responding to the results. 

While the study discussed in the broadcast is not scientific or peer-reviewed it provides a description of the experience of a number of women and warrants further investigation. Given the very preliminary nature of the survey and the fact that it was conducted by a private individual we will not comment further on the results. 

Down Syndrome Australia is proactively engaged in advocating to government, relevant medical organisations and professional bodies including the Australian Medical Association to promote better information and support for families with regards to prenatal testing. We have developed an evidenced-based submission which will be provided to the Medical Services Advisory Committee as part of their consideration of listing the non-invasive prenatal testing on MBS. 

As the only national voice for people with Down syndrome, we will continue to work collaboratively with the sector to achieve better support for families.

There is evidence from a range of sources that suggest that often women are not being provided with adequate information both prior to and after the screening tests are completed. Feedback from the Down syndrome community suggests that in many cases the information provided to families is outdated or focused on a very negative portrayal of what it is like to have a child with Down syndrome. 

Some families who choose to continue their pregnancy after a high probability result indicate that they do not feel supported by the medical community and that termination is repeatedly offered despite a clear decision having been made. This is highlighted in the story tonight with one of the families indicating they felt “pressured to terminate”.
It is imperative that the medical community provide appropriate counselling and support regardless of the decision to continue or to terminate a pregnancy. It should be acknowledged that many doctors and midwives do support families who have a high probability result for Down syndrome with good information and provide excellent support during the pregnancy. 

Down Syndrome Australia recommends that the Government support a national training program for GPs and midwives who are providing pre and post screening counselling to ensure that they are skilled at providing informed consent and appropriate post screening counselling. 

More information about the work of Down Syndrome Australia and the contact details for local support and services can be found on our website.

• Fact sheet on prenatal testing
• A resource for new parents
• For media queries, contact media@downsyndrome.org.au
• Download this media release here

World Festival of Magic tickets: free for DS NSW members

Thanks to the Lion's Club of Bondi, we have FREE tickets to the World Festival of Magic on Monday 19th December 2016 (11am, 1.30pm and 4pm) for Down Syndrome NSW members.

If you would like FREE tickets to this event please email our office at events@dsansw.org.au with your details. We have a limited number of tickets so distribution will be on a first in first served basis.

See you there!

News and commentary on the NDIS (59)

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.

Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:

• NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
• the newer and smaller I Love NDIS started recently to promote discussion individual's successes in putting their plans together and implementing them. 

Counting what counts surveys 
Julia Farr Association
We have had a significant response to the first Counting What Counts survey but it's not too late to have your say.

If the NDIS is to be really helpful in people’s lives, it needs to be shaped in line with what people living with disability need to live a rich and meaningful life.

Currently, much of the NDIS development is focused on how service providers make the move to the NDIS. This creates a risk that the NDIS market will reflect what providers need, not what people and their families need.

Counting What Counts is a series of surveys to find out more about what people living with disability, their families and supporters, want. JFA Purple Orange will publish the survey results, so people can use the information to make sure the NDIS is implemented well.

2016 NDIS supporter survey
Every Australian CountsTell us what you think about the NDIS.

People with disability, their families and carers and the service provider sector must have an NDIS that’s the best it can be.

That means letting our decision makers know what’s working, what isn’t and what needs to be done to make it better.

We’ll be releasing our first Every Australian Counts Community Report Card in December and we need you to shape it.

This is your NDIS. Fill out this simple survey to make sure you have your say.

Information, linkages and capacity building

National Disability Insurance Scheme, 9 November 2016
The NDIS has released the Information, Linkages and Capacity Building Framework (ILC). The ILC includes:

Personal capacity building – this is about making sure people with disability and their families have the skills, resources and confidence they need to participate in the community or access the same kind of opportunities or services as other people. 

Community capacity building – this is about making sure mainstream services or community organisations become more inclusive of people with disability ...

The ILC Toolkit is designed to help organisations get ready for ILC - it was released on 21 November 2016.

The National Disability Insurance Scheme: a quick guide

Luke Buckmaster,  Parliamentary Library (Australia), 1 September 2016

This five page 'Quick Guide' from the parliamentary Library could be a useful for those who are hearing about the NDIS for the first time, either as participants, family members, carers or potential service providers or support workers.

Our Choice Our Voice: Talking About The NDIS

Community Disability Alliance Hunter (CDAH), 11 November 2016
A video about the NDIS and the importance of peer support. Made by people with intellectual disability for people with intellectual disability. 9 m 30s

National Disability Insurance Scheme struggling to meet enrolment targets, report shows
Norman Hermant, ABC News, 14 November 2016
The first quarterly report from the National Disability Insurance Scheme (NDIS) transition phase shows the scheme came nowhere near to hitting its original estimates for enrolees ...

Rocky start to NDIS transition period

Every Australian Counts, 16 November 2016

The first quarterly report covering the NDIS transition phase has been released. Here’s what you need to know.

Accessible Arts Newsletter: November 2016

Accessible Arts November news is full of great announcements and opportunities for the arts and disability sector in NSW:

• InternationalDay of People with Disability
• Sydney New Year's Eve for everyone
• Don't DIS my ABILITY 2016
• 2017 Artist with Disability Fellowship
• Performing Arts Summer School 2017
• Events
• Featured arts + disability videos
• Auslan Interpretation of eNews
• Accessible Arts | Facebook | Twitter | Instagram

Voice: November 2016

Down Syndrome Australia publishes the print-only national journal Voice three times a year.

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.

In the November 2016 issue released last week:

• Is this the right service for me?
• Baby steps to independent living
• Preparing for supported living
• In dependent living - from Jesse's dream to our reality
• Independent living - living in rural Tasmania
• Protective behaviours
• NDIS and you
• IASSIDD workshop review
• Endocrine conditions in Down syndromeOur Voice
• My Voice
• Book Review
• Our adoption story

Enquire about membership/subscription with your local Sate Down syndrome organisation (links above).

Weekend reading and viewing: 19 - 20 November 2016

How Viral Videos Shape Perceptions of People With Down Syndrome
Theresa Versaci, The Mighty, 10 November 2016
... The average person’s understanding of Down syndrome spans the depth of a single unit of course content, but more concerning to me is another means through which people are exposed to Down syndrome: the viral video ... The “Cuteness Factor” serves as click bait, drawing the person into these stories and videos ...

Down Syndrome: This is the Reason Preconceptions are Unfortunate

Arthur Lauretano, 30 October 2016
The medical record perplexed me. “Unfortunate 33-year-old-man with Down Syndrome here for routine visit for ear wax removal.” ... He brought in an envelope full of records from his prior ear, nose, and throat doctor. Each visit was documented with an entry that began with, “Unfortunate 33-year-old man with Down Syndrome.” ... All of this patient’s records described him as unfortunate ... But the patient sitting in front of me ... was in excellent shape ...

We are all equal

Paul Critchlow,  Orange Juice Flavour Sky, 30 October 2016

There has been much written and said about Down’s syndrome over the last month or so leading up to, and since, Sally Phillips’ documentary A World without Down’s Syndrome. Some of what I’ve read has been balanced and fair, recognising that the discussion Sally has started is not an easy one for some to join in but some of what has been printed has been defensive knee-jerk reactionary nonsense from some people who should know better ...

France's censorship of award winning World Down Syndrome Day video to be chhllenged in the European Court of Human Rights
Catia Malaquias, Starting With Julius, 12 November 2016
France’s Conseil D’Etat has upheld the decision of France’s television regulator to censor the video “Dear Future Mom” and stop it from being shown on French television ... A French Down syndrome organisation, Fondation Jerome Lejeune, which brought the action against France’s television regulator and was a partner in the video campaign has said in a media release that the decision to ban the video from French television was taken after two complaints were received from women who had terminated their pregnancies after being told their babies had Down syndrome. It is reported that the women found the video confronting as the people with Down syndrome in the video were ‘too happy’ ...

Bundaberg disability group kicking down barriers through martial arts
Ross Kay and Brad Marsellos, ABC Wide Bay, 31 October 2016

If you are young, old, even in a wheelchair, a group in Bundaberg in Queensland is working hard to show that martial arts are for everyone by kicking down barriers around disability ...

People with disability underrepresented in politics: advocate

Emily baker, The Age, 11 November 2016
Some political parties are attempting to improve diversity by targeting the representation of women and culturally diverse, Indigenous and LGBTI people.

But Disability Leadership Institute founder Christina Ryan says one group – Australia's largest minority – is consistently missing from the conversation ...

NSW Council on Intellectual Disability is 60!

The NSW peak body representing the interests of  people with all types of intellectual disability, the NSW Council on Intellectual Disability, is celebrating its 60th anniversary this week - a major milestone.

'... we should acknowledge those people who 60 years ago saw the need
for the council' - Jeanette Moss, quoted in the anniversary announcement
on the NSW CID website.

We would like to join the congratulations and acknowledgement of this very substantial body of work, during a long period when attitudes and supports have evolved markedly.

Today, NSW CID is leader in inclusion and advocacy, including self-advocacy, working prominently in fields such as health, particularly advocating for mental health services for people with intellectual disability, and in both monitoring and promoting the implementation of the National Disability Insurance Scheme in the interest of people with intellectual disability, and all aspects of inclusion.

• More about the birthday party and photos are on the NSW CID blog, here

Siblings Australia: Adult Sibling Survey

Please help to spread the word about this survey from Siblings Australia:

Are you a sibling of someone with disability? *

Siblings Australia would love to hear from you!

Or do you have an interest in people with disability? We hope you will spread this information amongst your networks so we can reach as many adult siblings as possible.

This survey is part of Siblings Australia’s new project - Creating Capacity: Support for Adult Siblings. The survey will help us make decisions about the project and let us know what you want.

It also gives you an opportunity to get involved in the project.

The project is about adult siblings of people with disability. Adult siblings are brothers or sisters of people with disability who are 18 years of age or older.

The project will develop online resources for adult siblings about the NDIS and the different roles that siblings might play in supporting their brother or sister with disability. It will also develop opportunities for peer support and mentoring between adult siblings.

Siblings Australia is a national organisation that is committed to improving the support available for siblings of children and adults with disability, chronic illness and mental health issues.

Please click on this link which will take you directly to the survey.

We hope to have all responses by early December 2016, and we would appreciate you completing the survey as soon as possible. Please pass on the survey to any sibling of a person with disability who you think will be interested in taking part

We will shortly be sending out information about volunteering to be a Peer Support Group leader. If you are interested in this, please click the link in the comments below to join the Siblings Australia email alert and we will keep you informed.

If you would like more information, please contact Kate Strohm, Director Siblings Australia on kate@siblingsaustralia.org.au

*In this context, the word disability includes people with disability, chronic illness and mental health issues.

Employment matters

What people with intellectual disability think about work - research report
Rosemary Kayess et al, Social Policy Research Centre (UNSW), 2016
The Social Policy Research Centre was commissioned to examine the experiences people with intellectual disability have with different employment models. The study commenced in July 2015 and finished in 2016. Data was collected from 51 people with intellectual disability working in open employment, Australian Disability Enterprises (ADEs) and social enterprises. The reports highlight their experiences of choosing, finding, maintaining and changing employment, their likes and dislikes about their jobs and outcomes they achieve from working.

• Three publications from a UNSW research study, including an easy-read report

Newcastle cafe serves up hospitality experience for people with a disability

Robert Vurtue, 1233 ABC Newcastle, 15 November 2016
A non-profit cafe in Newcastle is expanding its services after high demand from people with a disability wanting to learn hospitality skills ...

Australia going backwards on disability employment

Maurice Corcoran, RN Breakfast, ABC Radio National, 8 November 2016

A disability advocate is calling for a greater focus on employment for people with disability, warning Australia has gone backwards in the past 15 years.

South Australia's Principal Community Visitor Maurice Corcoran has been recognised with a national award for three decades of work improving the lives of people with disability.

He's urging the federal government to do more to empower people through employment.

• Audio file 9m 20s

Inclusion Australia: People with intellectual disability need quality mental health services not to be ignored

Posted by Inclusion Australia, 15 November 2016:

The Commonwealth Government has just release the National Mental Health Plan for comment, and people with intellectual disability are not even mentioned in the 77 page draft. This omission defies belief in view of the terrible mental health disparities experienced by people with intellectual disability and the highlighting of the need for action on these in recent years. 

We urge you to speak up for people for people with intellectual disability! 

See www.health.gov.au/internet/main/publishing.nsf/Content/mental-fifth-national-mental-health-plan for how you can have your say – by going to a consultations meeting, filling in a feedback survey or making a submission.

Read the full Inclusion Australia post for more information on why people with intellectual disability must be included, and priority arguments.

People with Down syndrome

Dance and drama

Kate Powell, Down's Sydrome Association (UK), 2 November 2016
In dance we are showing a lot of feelings and emotions and building characters within dance, and drama as well. To show people what we do, that’s why we do our own shows that we love doing together as a group, we love an audience!

Karate competitor inspiring teammates at worlds
Michele Jarvie, Calgary Herald, 29 October 2016
A Calgary karate competitor has claimed a silver medal at the world championships held in Austria Saturday. But even though she fell just short of the gold, Natalie Olson has won the admiration of her club back home. Olson, 28, is a first-degree black belt, and was competing in her second world championships in the para-karate (intellectual disability) category ...

Teenager Rory Davies of Truro with Down's syndrome flourishing with Mylor Sailability

Ginette Davies, CornwallLive, 27 October 2016

A teenager with Down's syndrome has become the first at a sailing school for the disabled to achieve a top qualification. Rory Davies has spent three years training with Mylor Sailability. The 18-year-old from Truro has not missed a session in three years since attending an open day run by the charity and deciding he really enjoyed sailing ...

A unique view of St Paul's animals for young explorers - by a special artist

St Paul's Cathedral (London), 27 October 2016

We asked Reuben Coe, who was born with Down Syndrome, to draw a map - "I can do that!" he said.

The new Young Explorers' Map features many of St Paul's weird and wonderful animals, including an owl, camel and lots of Reuben's favourite lions. The map also has text in Reuben's Font - a design based on Reuben's handwriting ...

• Find out more about Reuben and download Reuben’s Font at his website

Hold the phone! "Sammy Calls" is a huge hit

Jeff Zeverly, CBS8

Imagine recording a conversation with a loved one and sharing it with the world - every week. In Friday's Zevely Zone, Jeff traveled to Solana Beach where a sister has launched a podcast for her brother with down syndrome.

• Sammy Calls podcast

DSA submission on eligibility for Disability Support Pension

Down Syndrome Australia has written a submission to a Federal Government committee on Qualifying for the Disability Support Pension. 

DSA has appealed for Down syndrome and other related chromosomal disorders to be included in the List 1 conditions which provide eligibility for 'Manifest grants of DSP' which removes the requirement for a job capacity assessment as well as further medical reviews.

Submission to Joint Committee of Public Accounts and Audit regarding the DSPDown Syndrome Australia, 4 November 2016

Service, Support and Success: November 2016 issue

Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

As more staff are recruited to support people with disabilities with funding from the National Disability Insurance Scheme, they will be interested in locating such good quality resources, to establish good practice, and as education and training resources.

The journal is available free via email subscription or through a website (link below). Here is the link to the latest issue:

Deeply Frank: Getting Serious About Person-Centered Thinking 

Celine Parent, Tammy VanderWier, Elizabeth Wedderspoon, Service, Support and Success, Vol 5, Issue 11, November 2016
... What about if things change? What do we do if someone we support decides that they want to take a college class? Or join the local gym? How can we help them turn the unfamiliar into the familiar? How do we help them learn the routines and the social norms of this new place so that they can feel comfortable? ...

Answers to FAQ’s about the journal

1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

2) You may subscribe by sending an email to dhingsburger@vitacls.org

3) We are accepting submissions. Email article ideas to either the address above or to anethercott@handstfhn.ca

4) We welcome feedback on any of the articles that appear here.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here. Each issue is now available in both English and French. 

Views from the broader disability community

Becoming Disabled

Rosemarie Garland-Thomson, New York Times, 19 August 2016 

Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed. I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys” ...

This is what it feels like to be prayed for because of my disability. And it's not ok
Carly Findlay, 29 August 2016
On a recent Friday evening, I finished work with the excitement of a weekend full of reading and cooking. I headed down to my local bookstore on the tram before going home. While I was on the tram, a woman offered me a seat. I smiled and thanked her but shook my head. I was only going a couple of stops.

That same woman followed me out of the tram, into a small shopping mall and down an escalator. As I browsed books, she tapped me on the back and whispered "I followed you here. Jesus loves you, beautiful. Jesus loves you."

This, no matter how well meaning, is not ok. Unwanted prayers are misplaced good intentions ...

Reading material on ageing and Down syndrome:

The (US) National Down Syndrome Society has co-hosted two conferences on aging and Down syndrome. Full conference presentation videos and slides on their website

• Growing Older with Down Syndrome Conference, 2015
• Age of Change Conference, 2013

Alzheimer’s disease in people with Down’s syndrome: the prospects for and the challenges of developing preventative treatments

Paula Castro, Shahid Zaman, Anthony Holland,

Cambridge Intellectual and Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, Cambridge UK

Journal of Neurobiology (open access Neuro Update), 24 October 2016

Abstract: People with Down’s syndrome (DS) are at high risk for developing Alzheimer’s disease (AD) at a relatively young age. This increased risk is not observed in people with intellectual disabilities for reasons other than DS and for this reason it is unlikely to be due to non-specific effects of having a neurodevelopmental disorder but, instead, a direct consequence of the genetics of DS (trisomy 21). Given the location of the amyloid precursor protein (APP) gene on chromosome 21, the amyloid cascade hypothesis is the dominant theory accounting for this risk, with other genetic and environmental factors modifying the age of onset and the course of the disease. Several potential therapies targeting the amyloid pathway and aiming to modify the course of AD are currently being investigated, which may also be useful for treating AD in DS. However, given that the neuropathology associated with AD starts many years before dementia manifests, any preventative treatment must start well before the onset of symptoms. To enable trials of such interventions, plasma, CSF, brain, and retinal biomarkers are being studied as proxy early diagnostic and outcome measures for AD. In this systematic review, we consider the p and their evaluation.

• The full text of the article is available to read online without charge.
• Citation: Castro, P., Zaman, S. and Holland, A. J Neurol (2016). doi:10.1007/s00415-016-8308-8

Weekend reading and viewing: 12 - 13 November 2016

Down syndrome answers

Canadian Down Syndrome Society, November 2016

The best people to answer questions about Down syndrome are people with Down syndrome. We found the most-asked questions on Google and asked 10 Canadians with Down syndrome to give their answers.

• 38 questions answered by the experts, on video

• This Powerful Campaign Has Answers for Parents Googling 'Down Syndrome' - the genetic disorder, explained by those who have it, Gabriel Belt, AdWeek, 1 November 2016

Looking Back on a Down Syndrome Diagnosis 4 Years Later

Dan Sheehan, Medium, 9November 2016
This is a story I have been meaning to tell in full for quite some time, because I too was once in a position on the other side of that screen looking for advice, answers, and some way to make sense of the onslaught of emotions and uncertainty raging through me at the time. Know that this is nobody’s fault, you are not alone, many have been where you are right now, and many will be in the years to come. As of this writing my youngest daughter, Teresa, is four years old (today is her birthday) which has put me on this path for a little over four years now ...

To Myself on the Day My Son Was Diagnosed With Down Syndrome

Nicole DiGiacomo, The Mighty, 7 November 2016
I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning ... I write to tell you the real story — what really happens after you get a Down syndrome diagnosis ...

'My Feral Heart' review – life after keeping mum

Wendy Ide, The Guardian (UK), 6 November 2016
A terrific central performance from Steven Brandon, a young man with Down’s syndrome, is the driving force of this heartfelt British independent picture. In a neat reversal of expected roles, Luke (Brandon) has become the care-giver for his prickly but loving mother. However, when she dies, the authorities ignore the fact that he can and does live independently and shunt him into a residential care home. A sequence in a car, in which the camera rests on Luke’s face as he mourns both his lost mother and lost independence, is achingly poignant and beautifully acted ...

• This movie has just been released in cinemas in the UK - we'll be looking out for it to be available here in Australia.

Review: Finding a way' by Graeme Innes
Kevin Bain, Independent Australia, 08 November 2016

This was the election slogan for Tony Clark, a blind candidate for the ALP in the recent federal election. It’s no surprise that lesser-sighted people will use their other senses to greater effect to “find a way” as Graeme Innes AM puts it in his autobiography ... There’s forthright inside commentary here about the personalities and trials of government and politics – the sausage making we call the legislative process – and his aspirations for people with disabilities. The “invisibility cloak” he talks about – where the waiter/shopkeeper/taxi driver talks to the person with him (or his dog!) – is a constant reminder of how silly the rest of us can be, although he observes that sometimes he doesn’t get presented with the bill!

Two media releases from the Assistant Minister for Disability Services, on aspects of carer support

Have your say on a new integrated carer support service system

Jane Prentice MP, Assistant Minister for Social Services and Disability Services, 6 November 2016

The Coalition Government is calling for submissions on the draft Service Delivery Model for services to support and sustain the work of unpaid carers ... Assistant Minister for Social Services and Disability Services, Jane Prentice said the draft Service Delivery Model sets out a new integrated carer support system and outlines the types of services and how they are proposed to be delivered in the future ...

As part of the 2015-16 Budget, the Coalition Government announced the development of an Integrated Plan for Carer Support Services (the Plan) ... The second phase of the Plan involves developing a new integrated carer support service system through a co-design process.

Mrs Prentice said continued public consultation is important in ensuring the community has their say on the best way to deliver carer services and support ...

Feedback on the draft Service Delivery Model can be provided by participation in an online survey, or through making a written submission. The survey and submission process will be open from 6 November 2016 at 9am and will close on 15 December at 5pm.

• To have your say, please visit DSS Engage at www.engage.dss.gov.au

National Disability and Carers Advisory Council announced

Jane Prentice MP, Assistant Minister for Social Services and Disability Services, 7 November 2016

The Coalition Government today announced the establishment of the National Disability and Carers Advisory Council.

The new Council brings together leaders from business and the disability and carer sectors, to provide advice on proposed policies and legislation affecting people with disability, carers and the sector that serves them.

Assistant Minister for Social Services and Disability Services, Jane Prentice said the Council will provide advice on issues of strategic importance at a time of major reform in the disability and carer sectors.

“The Council will play an important role in helping to drive the implementation of the overarching National Disability Strategy 2010-20,” she said.

“It will also look at reforms in disability employment and carer support, and the full roll-out of the National Disability Insurance Scheme, including the interfaces with mainstream services.”

“Members represent every state and territory as well as business and the disability and carer sector, and advocates.

“I will co-chair the Council with Ms Keran Howe, who is well respected as a strong advocate in the sector and who has lived experience,” she said.

The Council will meet formally at least twice a year and establish working groups and community consultations as needed.

• The National Disability and Carers Advisory Council members are listed here.

New online training course from Down Syndrome Education International: birth, early intervention and preschool years

Down Syndrome Education International (DSE) has launched a second online course, focused on development from birth and early intervention through the preschool years. The course looks at many aspects of early development, including play, cognition, speech, language, number and motor skills.

Presented and led by Professor Sue Buckley, the course includes 10 modules, each of which includes a video presentation, handouts and an assessment. The video presentations can be viewed, handouts downloaded and assessments completed at any time. In addition, course participants are invited to join an online discussion forum with DSE tutors for the opportunity to ask questions and seek additional advice.

The course offers convenient and cost-effective access to up-to-date information and practical guidance for early years professionals supporting children with Down syndrome aged from birth to 5 years, including health visitors, early years teachers and assistants, speech and language therapists, advisory teachers, educational psychologists and outreach/advice staff and volunteers at organisations supporting young people with Down syndrome. The course will also be valuable for the parents of children with Down syndrome seeking detailed advice, based on the latest research.

• Find out more here

The first DSE online training course was announced in July 2016:

• New online training course launched - Effective education for children with Down syndrome in school, Down Syndrome Education International, 22 July 2016

You can contribute virtually to this UN presentation on International Day for People with Disability

To make your voice heard, please submit your picture with the message on what would you like to thank the Convention on the Rights of Persons with Disability (CRPD) for through the online form on 1billionvoices.org or email at info@1billionvoices.org

Down Syndrome Australia media release on World Down Syndrome Congress 2022

Down Syndrome Australia (DSA) wins bid for World Down Syndrome Congress

8 November 2016

We are pleased to announce that after a competitive bidding process, Down Syndrome Australia has been selected by Down Syndrome International to host the 2022 World Down Syndrome Congress in Brisbane.

This international conference brings together people with Down syndrome, family members, researchers and service providers to showcase the latest research and best practice as well as the lived experience of Down syndrome from around the world. The Congress will continue to support the ongoing agenda of Down Syndrome International to improve quality of life for people with Down syndrome worldwide and promote their inherent right to be accepted and included as valued and equal members of their communities ...

• To read the full media release, click here

• WDSC 2018 will take place in Scotland
• WDSC 2020 will take place in Dubai

News and commentary on the NDIS (58)

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.
_______________________________________________

NDIS Champions: emerging grassroots leaders
Disability Loop, October 2016
Would your business, organisation or community group benefit from a free information session on the National Disability Insurance Scheme (NDIS), delivered by a person with disability in your local area?

Do you want to know more about the National Disability Insurance Scheme (NDIS)? Do you want to understand what it will mean for people with disability?

The Australian Federation of Disability Organisations (AFDO) has recently employed and trained 30 people with disabilities from all over Australia to become NDIS Champions - to deliver reliable, fact-checked information about the NDIS in their local communities ...

NSW: How Siobahn Daley became the public face of the NDIS
Rachel Brown, The Sydney Morning Herald, 7 November 2016
Siobahn Daley knows first-hand how the National Disability Insurance Scheme can change lives but new research shows she's much better informed than most.

Creating Capacity: Support for Adult Siblings Project
Siblings Australia, October 2016
Siblings usually have the longest relationship of any with a person living with disability. Support for siblings is important for their own wellbeing and for the benefits that a strong sibling relationship has for the person with disability. Siblings Australia has been funded by the DSS Sector Development Fund to develop more supports for adult siblings of people with disability. The aim of the project is to build the capacity of siblings to understand the role of the NDIS and support their brother or sister’s transition to the NDIS ...

CripCroakey NDIS Part 1: Scandals, blunders and how change will only come when disability rights are front and centre

El Gibbs, Croakey, 4 November 2016

... disability is not something that happens to some other people, but something that is part of normal, ordinary life. It is often said in disability circles that people are just temporarily able bodied – the idea that a ‘normal’ body is not a disabled body is a fantasy.

"The NDIS was not to be a system that works for those disabled people “over there” – it is intended to become part of our essential social infrastructure, available to all Australians, which will ensure that having a disability will no longer mean poverty or a denial of basic human rights" ...

• CripCroakey NDIS Part 2: What’s gone wrong on the road from rights to reality?, El Gibbs, 7 November 2016

"It's like a five-year-old wrote it": disability advocates slam NDIS care plansMiki Perkins, The Age, 29 October 2016
Disability advocates – who all emphasised their strong support for the NDIS – said the agency managing the scheme was under enormous pressure to sign up participants in an unrealistic timeframe, and with inadequate federal funding ...

Greater Expectations and the NDIS

Sally Coddington Disability Services Consulting, 17 October 2016
When I read that the idea of people with disability being supported to live an ordinary life is central to the work of the NDIS I feel an overwhelming sense of sadness at the mediocrity of it. I see it as a perpetuation of the “soft bigotry of low expectations”. I read recently “low expectations are one of the most subtle yet devastatingly effective forms of sabotage we can do to others and ourselves. Low expectations often masquerade as kindness yet they are the cruelest cuts because they deny an individual their opportunity for greatness.” Did we fight all these years for individualized funding and self-direction so that people with a disability could aspire to an ordinary life? Or did we hope that NDIS might provide the safety net of ordinariness so that people could aspire to greatness?

Yes we want to hire workers more easily. But let’s also talk safeguards and support
Ellen Fraser-Barbour, InCharge, 26 October 2016
... I have been wondering, however, about how these new types of self management models safeguard. Yes they, alongside all service providers, have policies in place to ensure safety, security and support for individuals, families and workers and these policies are vitally important but I can think of many examples where traditional large agencies are up to the hilt in policy but do necessarily invest in developing an active organisational culture or practice that truly embraces a human rights approach at base level. Policies are there, but putting this into practice seems to be easier said, than done. This has been highlighted in recent inquiries into abuse in disability services ...

NDIA Annual Report 2015 - 16
The NDIA Annual Reports outline what the agency has accomplished during the year. The reports show how we managed our resources to improve the lives of people living with disability.

The NDIA 2015-16 Annual Report was tabled on 28 October 2016. You can download an accessible version here. An online (HTML) version, Plain English and Easy English versions will be available soon.

2016 National Disability Award Winners

The winners of the 2016 National Disability Awards were announced at a function in Canberra last night.

Media Release by the Hon Jane Prentice MP, 7 November 2016

Assistant Minister for Social Services and Disability Services, Jane Prentice has announced this year’s National Disability Awards winners at a gala ceremony at Parliament House in Canberra tonight. 

Mrs Prentice congratulated the 10 winners noting that they have all made a remarkable effort to improve the lives of people with disability. 

“These passionate and hardworking people and organisations have been recognised for their commitment and contribution to achieving greater inclusion and accessibility for people with disability,” she said. 

“The National Disability Awards, now in their 10th year, are an excellent opportunity to honour and recognise the hard work and achievements of every day Australians who are making a real difference to the lives of people with disability.” 

This year’s winners demonstrate a range of outstanding achievements including:

• long-term advocates in social justice, equality and rights for people with disability;

• the development of innovative technology that has the ability to bring function to paralysed or damaged hands; 

• a program that gives people with disability the chance to experience scuba diving in the comfort of their own local pool; and

• a community that strives to make its town more accessible.

The 10 Award winners were chosen across eight Award categories drawn from a field of more than 120 nominations. 

“I would like to thank all the winners for the remarkable work being done to break down barriers faced by people with disability and to make Australia a more inclusive society,” Mrs Prentice said. 

The National Disability Awards are a major part of the Commonwealth Government’s celebration of International Day of People with Disability, marked on 3 December each year.

Latest additions the '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  

Art Exhibition - International Day of People with Disability event
Exhibition of works completed by people with disability who attend regular classes at Hazelhurst Art Gallery. Includes works by Josie Webster. Come and see their amazing work at their first Exhibition.
26 November - 6 December 2016 - Hazelhurst Art Gallery, Gymea NSW

Aladdin - the Musical: special performance

Disney and Autism Awareness Australia are partnering to present an autism friendly performance of Aladdin - The Musical on Saturday 4 March at 1.30pm.

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.

A wonderful opportunity for the whole family to enjoy this beloved Disney classic in a supportive and inclusive environment.

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

Enquiries: Capitol Theatre, Sydney

Performing Arts Summer School

In partnership with Murmuration, The Young Americans (YA's) will facilitate a week-long Summer School designed for participants with disability. Participants will learn from and perform with this super talented international cast. As well as developing performing arts skills in singing, drama and dance, participants will perform alongside The Young Americans in a community sharing.  Using music as the tool, The Young Americans cast of trained college age performer-teachers provide a safe and fun atmosphere for participants to learn, explore, create, and grow!

30 January - 4 February 2017

Open to all people with disability, no previous experience required, age range 16 +

Limited places 

Workshops: Monday 30 - Friday 3 February

Community Sharing: Saturday 4 February 

Glebe Town Hall and Marrickville Town Hall (accessible venues)

Early Bird Offer  $350 -  open now 

Register and pay by Tuesday 20 December 2016 to save $50

• All details, enquiries and registration here

Arts news

Nathan Basha At Byron Bay International Film Festival!

Bus Stop Films (blog), 4 November 2016

Starting in 2006, the Byron Bay International Film Festival has become the largest regional festival in the country, supporting emerging and independent talent within Australia and around the world ... We were excited to be able to support our ambassador Nathan Basha to attend the festival this year in order to represent the filmHeartbreak and Beauty which was selected to screen in competition at the festival. The film was developed over 10 months of filmmaking workshops with 12 students with an intellectual disability. Three students co-directed, Nathan being one of them and 9 students performed.

After coming back to Sydney Nathan filled us in on his experience at the festival!

Front Up: new arts and cultural program
Ability Options has announced the launch of Front Up - a new disability-lead arts and cultural program and Hub based in Seven Hills, Western Sydney:

We have pledged a 10 year commitment to the program in memory of our late founder Greg McIntyre OAM. Programs will commence in 2017. 

Keep up to date with all Front Up news and stories by liking the Front Up Facebook page. 

Spread the word!

$30,000 NSW Fellowship to support artists with disabilityA new $30,000 fellowship that will boost the professional development of an artist with disability has been launched as part of the NSW Government’s commitment to support artists’ careers.

The Artist with Disability Fellowship, developed in collaboration with Accessible Arts, is open to professional mid-career or established artists working in any art form, including music, theatre, visual arts, or writing, who identify as having a disability ...

World Down Syndrome Day 2017: theme announced

From Down Syndrome International:

The theme for World Down Syndrome Day 2017 has been announced: #MyVoiceMyCommunity – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.
Tuesday 21 March 2017 marks the 12th anniversary of World Down Syndrome Day.

Each year the voice of people with Down syndrome, and those who live and work with them, grows louder.

In 2017, we 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.

Working with our global network, the campaign will:

• Explain why it is important for people with Down syndrome and their advocates to speak up and influence local, national, regional and international policy makers. 
• Explain what the key policies are which affect the lives of people with Down syndrome and how they can ensure full society inclusion if implemented. 
• Explain how advocates can get involved – from media campaigns to direct political advocacy. 
• Explain how to empower people with Down syndrome (and those supporting them) to advocate for themselves and provide accessible tools to facilitate this. 

We will be encouraging people with Down syndrome to say #MyVoiceMyCommunity and we will ask everyone to respond to our call by sharing and showing the world how people with Down syndrome participate in the community alongside everyone else. You can take part simply by sharing details of WDSD activities or by photos, messages, quotes or in any way you choose, using the hash tag #MyVoiceMyCommunity as well as #WDSD17.

Our WDSD Global Video Event and WDSD Conference will both explore this important area of focus.

Down Syndrome International encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

We can share your WDSD World Events before 21 March and your WDSD Stories after 21 March on our dedicated WDSD website in a single global meeting place.

World Down Syndrome Day AwardsDown Syndrome International (DSi) announces awards in voluntary, professional and scientific categories to coincide with World Down Syndrome Day on 21 March. Going forward, the WDSD Awards will be presented every 3 years, with the next announcement on 21 March 2017.

Please email wdsd@ds-int.org to receive nomination forms and criteria.

Weekend reading and viewing: 5 - 6 November 2016

Joyous recognition: a lesson from my father
Chesapeake Down Syndrome Parent Group, 30 October 2016

... their quiet insistence, through their actions and words, that this was an occasion for laughter and joy just like any other birth, enabled me to snap out of whatever self-centered sorrow I was in much quicker than I would have on my own. It enabled me to spend those first days meeting my daughter and falling in love with her, because it enabled me to be aware of her diagnosis without it obscuring this actual adorable new little person who was going to call me "daddy" ...

Why is Down syndrome a syndrome?

Mark Leach, Down Syndrome Prenatal Testing, 9 October 2016

... Syndromes, however, are named that because the underlying cause for the condition is unknown. ... In the case of Down syndrome, though, the use of the word “syndrome” is outdated and regrettable.It’s outdated because the cause of the condition described by the characteristics of the syndrome has been known since the 1950’s. Down syndrome is not caused by the individuals having intellectual disability, a penchant for mimicry, or a single crease across the palm. It’s caused by an extra copy of the 21st Chromosome, most commonly Trisomy 21 ...

Inclusion: Hard Work or Magic Pill?

thesassysoutherngal, 25 October 2016

... The lack of meaningful inclusion extends past the education setting though. Beyond the walls of school the first place many parents of children with disabilities are directed is to segregated choirs, sports and church activities. Many of you would join me in sharing stories of the hurts and challenges of mainstream community activities and church. It would be easier to go another route. So if you are looking for easy, there is probably an easier path. However, I haven’t found a magic pill or magic carpet yet ...

Jamie’s place

Michael Bérubé, Aeon, 1 November 2016
Like any adult, my son wants to work, travel and socialise, and his Down syndrome won’t stop him. But can he live independently?

• This essay is expanded upon in Michael Bérubé's new book, Life as Jamie Knows It.

To the Special Needs Mother: this was you all along

Kat Abianac (guest blogger), mummalove, 30 October 2016
... of course Parker changed my life. That’s a bona fide understatement. He came charging in that day in the delivery room, turned me on my head and flipped out my pockets. He laid bare every one of my emotions, forcing me to carefully evaluate and analyse myself. He didn’t do any of this personally – he was an infant. And this is where people misunderstand the rainbows and unicorns of legend ...

StarJam video of flashmob performing Gaga's 'Born this way'

StarJammersNZ, Published 8 August 2012
The Jammers spring a surprise with a flashmob version of Lady Gaga's Born This Way.

Is golf or netball your sport?

Landmark partnership to make golf an even more inclusive sport
Adrian Proszenko, Sydney Morning Herald, 29 October 2016
Golf will become an even more inclusive sport in NSW following a landmark initiative encouraging people living with an intellectual disability to participate in the game ...

Disability netball shooting goals across NSW

Netball NSW, 31 October 2016

It has been a fantastic year for Disability inclusion in New South Wales, and in particular for netball and all those involved in our wonderful sport.

Throughout 2016 netball Associations and Clubs in NSW, with the support of Netball NSW have worked tirelessly to create a diverse and inclusive environment for Players with a Disability (PWD), and the results have been overwhelming ...

Disability Employment Services Reform

People with disabilities, including intellectual disabilities was to work - here's an opportunity to have some input into one aspect of how employment support can be informed:

Australia Social Services Minister Christian Porter announced the latest stage of the current review of the Disability Employment Services (DES) system this week.

The Australian Government wants to assist more people with disability into jobs so they can enjoy the social and economic benefits that work brings. 

The Disability Employment Services (DES) program plays an important role in supporting people with disability to gain employment in the open labour market. Current contracts with non-government organisations for the provision of DES cease in 2018. This presents an opportunity to consider possible changes to improve the program’s performance and achieve better employment outcomes for people with disability. 

The Australian Government commissioned the Disability Employment Taskforce in 2015 to review the disability employment framework and seek feedback from the disability sector to inform possible changes to DES to come into effect in 2018. 

Building on the work of the Taskforce, the discussion paper New Disability Employment Services from 2018outlines specific options for what a new model of DES could look like.

To find out more about this important issue and how you can have your say visit this page on the Dept Social services website.

Employment

Access and Inclusion Index - a business tool
Australian Network on Disability recommends that businesses check how their operation
 'stacks up when it comes to including people with disability' by using the Australian first, the Access and Inclusion Index that helps organisations understand and improve their disability confidence. Find out more at www.accessandinclusionindex.com.au

What does work mean to someone with a learning disability?

Rachel Clayton, Stuff (NZ), 7  October 7 2016
Two weeks ago a man with learning disabilities was dismissed from his position as a trolley boy at Bunnings for taking a bottle of drink he thought was "nobody's" ... Having a job is important to most of us, but perhaps especially so for people, like Clark, who struggle to be valued as someone who contributes to society ...

Disability groups back targets to boost lagging employment rates
Rebecca Hyam, The World Today (ABC), 11 October 2016
Some of the country's biggest corporations have been coming under fire during the current annual general meetings season for linking lucrative CEO and executive bonuses to non-financial targets for diversity, sustainability and culture ...

Representation in the media

It started with Julius … 

Catia Malaquias, Starting with Julius, 1 November 2016
A look back at disability inclusive mainstream advertising in Australia, the role played by our wonderful Ad Inclusion Ambassadors, the amazing brands setting a new standard for diversity in advertising and starting our #adinclusion journey with Julius ...

Finally! Disability Diversity and Inclusion in the Media

Social Care Foundation Australia, 28 October 2016
The media is one of the biggest influencers and perpetuators of popular culture. They not only inform society, but also set the boundaries of what’s “normal,” “accepted,” or “trending.” The evolution of social media and technology has changed the way we engage with the media and has given a voice to the voiceless and under-represented. We’ve seen the demand for body diversity, ethnic diversity and gender diversity in mainstream media; but what about disability diversity and inclusion in the media?

Kmart television advert one of the first to feature model with Down syndrome
Benedict Brook, News, 6 October 2016
It might just be one of the most mould breaking adverts ever seen on Australian TV. Yet, it all happens so quickly, blink and you might miss the two — very out of the ordinary — portrayals of children ...


Disability in advertising shouldn't be something we only see once every four years
Jo Arden, The Drum, 3 October 2016

The Paralympics is over for another four years and I for one am feeling a little bereft. And also a bit uncomfortable. Seeing so many impressive athletes at the peak of fitness with skills that go beyond imagining was a stark reminder about how invisible people with disabilities can often be. It’s not just on the track and field where we saw greater representation than we are used to either; in the studio and on the airwaves, the world suddenly seemed like a much more inclusive place. Until the ads came on.

Disability and the 'new normal': why Australia needs to ramp up access to stage and screen

Steve Dow, The Guardian, 24 September 2016

Australia is ‘20 years behind’ in terms of disability-led performance and the fight for real representation is just beginning ...

Endless Possibilities - Brisbane Education Conference 2017

Down Syndrome Association of Queensland has announced its 2017 education conference:

Endless Possibilities - Brisbane Education Conference 2017

8:00am - 3:30pm Thursday 2nd and Friday 3rd March 2017

Brisbane Convention and Exhibition Centre

Registrations close Wednesday 22nd February 2017

An innovative conference for everyone living, working or supporting students with additional needs. 

Join us for exciting and motivating presentations from experienced and informative speakers currently working in a variety of fields with a diverse range of students. Together they will share their insights and ideas to help expand your understanding and provide you with new ideas, tools and resources that can be incorporated into your own educational context.

• Further information and bookings - open now

Going to hospital: share your experience for research

NSW Council on Intellectual Disability is doing research for the NSW Government that you might like to take part in:

The NSW Government has asked us to interview people with intellectual disability who live in group homes about their experience being in hospital. 

Participants will be given a $75 gift card for their time. Lunch will be provided. We can interview the person where they live or at a place suitable to them. 

We can pay for the cost of a support worker identified by the participant if they request one to be present during the interviews. 

Click here to download the easy read information sheet.

'Stevie won us the Melbourne Cup'

Remember Melbourne Cup Day 2015, when media attention focussed on Stephen Payne's role as strapper to the winner, as well as his sister Michelle's ground-breaking winning ride? 

This extract from the book Prince of Penzance: The Extraordinary 2015 Melbourne Cup by Kristen Manning, published by Melbourne Books, was published in the lead up to today's race:

'Stevie won us the Melbourne Cup': the story of Michelle Payne's 2015 triumph

Kirsten Manning, The Guardian, 27 October 2016

“Don’t get beat, I’ve got my money on you,” said Stevie Payne to his sister, Michelle, as Prince Of Penzance headed out onto the track. He’d had his $10 each-way on, and while many having a punt had done so for sentimental reasons, for Stevie it was a matter of confidence. “He will go close,” he’d been telling all who’d asked about Prince Of Penzance’s chances ...