People with Down syndrome in the media

The film clip choreographed by Michelle features Josh, Lorcan, Michael and Chris from Restless Dance Theatre.  Our congratulations to Restless Dance Theatre on being ling-listed for the 2014 Australian Dance Awards (winners will be announced in November in Sydney)

• Direct link to video clip on You Tube

‘He wanted to earn it’

Matthew Ward, Suffolk News-Herald, 6th May 2014
As Harris Fisher progressed through the Boy Scouts toward the coveted Eagle Scout badge, the 21-year-old with Down syndrome considered giving up several times.

“When that would happen, the leader at that particular level would give a call and ask if Harris was still interested,” (his father) said. The inquiries always made it clear that Troop 16 Driver ... didn’t want to lose someone they considered a valuable member,

Merry Makers - interview on Studio 10  (3 m 24s)
ten play, 1st May 2014

Monic Aitken and Lucinda Bryant were interviewed about their preparation for the Merry Makers Gala concert at the Opera House on 4th May.

My Name is David Heller, Class of 2018, The College of New Jersey, and I Want to Tell You, “Nothing Is Impossible”

David Heller, The Good Men Project, 28th April 2014

I want other people to know that young men with Down Syndrome are just like other guys. We have the same kind of hopes and dreams ...

Lunch at the training restaurant

• Feature article
• Photo gallery

iPad from NDIS gets Zoe talking and texting

Rachel Baxendale, The Australian, 25th April 2014
Zoe Lovegrove’s increased ability to let her family and friends know how she’s feeling has brought her mother to tears more than once since she received a tablet computer as part of her NDIS plan in December. The 18-year-old, from Bridport in Tasmania, has Down syndrome and often struggles to communicate, but the tablet, coupled with the extra support for her and her family from a caseworker, has made a huge difference ...

(Also posted in News and commentary on the NDIS (20)

A royal morning in Canberra

Juliet Rieden, Australian Womens Weekly (online), 24th April 2014

It's been a big morning for six-year-old twin brothers, Oliver and Sebastian Lye, who joined the Duke and Duchess of Cambridge to water the English Oak tree planted by the royal couple in Canberra's National Arboretum ... Sebastian has Down Syndrome, a vision impairment and is hearing impaired, but he doesn't let this get in his way of joining in everything his brother does. The twins both play soccer and they love to swim ...
(Also posted in Weekend reading viewing: 26th - 27th April 2014)

Life Links WS

One of our members has said she 'highly recommends' Life Links WS, a new way of supporting adults with intellectual disabilities to make social connections in western Sydney. Visit their website for a calendar of events and a link to their Facebook page:

Library Thursday 8th May 2014

Supporting young carers in secondary education: national and international resources

Carers Australia has collated an extensive list of resource materials ... for use by people who are supporting, or want to support, young carers in secondary schools. This may include school administrators, teachers, counsellors, support workers, parents and guardians ...  see the compilation here.

New issues of online newsletters
Issue 5 (April 2014) of Starecase - the online magazine 'produced at spasmodic intervals within a miniscule budget', by and for people with disabilities is available here.

In this issue:

Individualised Funding and the NDIS -  on individualised vs block funding options
Mission Inclusion - what if we just decided to do it?
How to Change the Disability Sector - tips for people who are on too many committees
The Mermaid and the Smoo - a story
Will They Change the Disability Support Pension? News about the DSP
Same Shite, Different Landmass - the commonalities between the UK and Australia
Falling Between the Cracks - on being undiagnosed and falling between the cracks
Paper Pollie - your Disability It Yourself politician paper doll set
A Way with Words - disability language
An Unlikely Hero -  how one woman prevented others from becoming victims by a taxi driving predator
The Others - the voices of people with disability that are the hardest to hear

Accessible Arts Newsletter - April 2014

All the news on arts and disability across NSW, including an Interview with Amplify your art Recipient Chris Bunton

Members' library

The Down Syndrome NSW library catalogue is available to view here.  

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au

Current issues in employment

Reaction to the Australian Human Rights Commission's decision last week to give the government a 12 month exemption from relevant provisions of the Disability Discrimination Act indicate that stakeholders remain divided:

• Disability Enterprises Decision Criticised, ProBono Australia News, 1st May 2014
• Fears thousands with severe disability could be thrown out of work after Human Rights Commission decision, ABC News, 7th may 2014

Lack of superannuation can be one (unintended?) consequence of low wages paid to people with intellectual disabilities:

Intellectually disabled workers not getting superannuation, Sally Sara, AM (ABC Radio), 23rd April 2014
Superannuation rules brought in to protect businesses mean that those earning less than $450 a month do not qualify for superannuation payments. The rules have consequences for much of the disabled workforce.
Emma White, 30, has Down's Syndrome and wants to work more, but at the moment she does not earn enough to get super ...

Latest additions to 'events' pages

The PATH (Planning Alternative Tomorrows with Hope) Process including Graphic Facilitation and the use of Graphics
Centre for Disability Studies  - 2 day workshop for human service staff, teachers, parents, social workers, counsellors, psychologists, therapists, trainers and business and corporate employees.
Monday 12th and Tuesday 13th May 2014 - University of Sydney

Transition to Retirement

Centre for Disability Research and Policy - one day workshop will provide disability practitioners with detailed practical information about how to effectively support older people with long-term disability (such as intellectual disability) to join mainstream community groups or volunteering groups and participate long term.

Friday 13 June 2014 - University of Sydney

Health: Heart Week

This is Heart Week in Australia 4th - 10th May 2014.  

We know that children with Down syndrome have a very high incidence of congenital heart
disease, and that much of the recent increase in life expectancy is attributable to advances and access to reparative surgery.  This recent study of surgical outcomes indicates that they generally do very well after cardiac surgery:

Study shows promise for heart surgery patients with Down syndrome

American Heart Association (blog), 22nd April 2014
A large national study suggests that children with Down syndrome ... do not face additional risks when undergoing heart surgery. In addition, the children may actually have a better chance of survival while hospitalized compared with other pediatric heart patients ...

• UC Davis Health System media release

This story, written by a US mother, will be familiar to many:
Heart So Bright
Melissa Stoltz, Down Syndrome Blogs, 24th February 2014
My daughter was born in June 2010 and surprised as with a diagnosis of translocation Down syndrome and a complete atrialventricular canal. A CAVC is a common heart defect for babies with Down syndrome, and though the treatment and repair have become routine, it is anything but routine when it is your own child slipping into heart failure while waiting for life-saving surgery ...

Further information about congenital heart disease, and support for children and their families experiencing it can be found here:

• Heart Kids Australia
• Heart Foundation booklet, Children with Heart Problems
• Down's Heart Group - a UK organisation that provides a good deal of information online, and has international contacts

Call the Midwife, Series 3, episode 5 on ABC TV: amended

Remember this UK article about an episode of the popular British TV series, Call the Midwife, that includes a sub-plot featuring Sarah Gordy?

The third series is currently being shown in Australia, with this episode due to be broadcast on ABC 1 on Thursday, 15th  22nd May, at 8.30pm. It will be repeated on Friday 16th  23rd at 1.00 pm, and will then be available on iView.

• Call the Midwife on the ABC website

Call for films for learning disability-led festival

Do you know someone who has made a film/new media project

appropriate for this new festival in northern NSW?

Sit down, shut up and watch

Keira James, Northern Argus, 22nd April 2014

Australia’s first learning disability-led film festival, “Sit Down, Shut up and Watch, Film and New Media Festival”, is now calling for entries.

It is being organised by a group of young people with learning disabilities, including Matthew Wauchope from Clare and Liam Wilkins of Brinkworth, under the auspices of “Tutti”.

Inspiration to develop the festival came after a group from the Oska Bright Film Festival in the United Kingdom ran South Australian workshops on film production in 2011 for people with learning disability.

“We thought, if they can do it so can we,” Matthew Wauchope said.

Both young men have a long standing interest in film making and have made their own videos, either acting, editing or directing, but as part of the judging panel of “Sit Down, Shut Up and Watch”, will not be entering any of their work in the festival. Eligible films must have people with a learning disability in the role of script writers, actors, camera people, sound people, directors, producers or other roles.

People without learning disabilities may have given support or help in the making the films entered but may not have had substantial involvement.

Successful films will be shown at the festival held in the Barossa Valley in November.

More information on the film festival, including entry forms, can be found on the Tutti website, www.tutti.org.au.

Entries close on May 31.

Tutti is an inclusive multi-arts community with a focus on breaking down barriers, challenging preconceptions and creating opportunities for disabled visual and performing artists.

Down Syndrome Australia: 'Don't mess with the NDIS'

In response to speculation about possible changes to the National Disability Insurance Scheme following both the release of the  National Commission of Audit's report to the Australian Government and about cuts forecast for the federal budget, Down Syndrome Australia has joined calls for the NDIS to be implemented as previously planned:

Don’t mess with the NDIS

Down Syndrome Australia calls on the Premiers and Prime Minister not to delay the NDIS rollout and to guarantee that funding based on the individual needs of people with disability will be honoured. 

The NDIS is crucial for people with Down syndrome and their families across Australia, who expect that their elected representatives will stand by their commitment to fund the support needs of people with disability.

Every person with Down syndrome trying to work needs the NDIS to provide the supports to enable them to get up, out the door and into jobs.

Every parent of a young or adult person with Down syndrome who wants to return to the workforce cannot do so without the supports and services the NDIS will provide to their family member.

Any potential delay to the NDIS will also delay the 120,000 new front-line disability support jobs in non-government organisations – new productive employment – that the NDIS will generate.

Down Syndrome Australia agrees that the NDIS needs to be efficient and effective and notes that both the Productivity Commission and economists have concluded that the benefits of the NDIS will exceed the costs. However, the NDIS needs to be fully funded and delivered on time in order for the resulting economic and social benefits to be enjoyed.

“The NDIS is a financial investment. It will benefit us all. Australia can’t NOT afford the NDIS,” said Down Syndrome Australia CEO Catherine McAlpine. “We must continue as we set out so that the lives of people with disability are improved, and for the scheme to deliver the benefits that it is designed to provide as soon as possible.”

Down Syndrome Australia also calls on the Government to maintain the National Disability Insurance Agency (NDIA) as an independent agency as recommended by the Productivity Commission to ensure that it remains dedicated to the people it was designed to serve. “It is crucial that the independence of the NDIA is preserved to ensure that the underpinning principles of choice and control are never watered down” said Ms McAlpine

Every Australian Counts media release

Council of Australian Governments meeting: communique, 2nd May 2014

National Disability Insurance Scheme All governments remain committed to the full-scheme roll out of the NDIS, which
will be informed by the important lessons being learnt from trials. COAG noted
recent reports from the NDIS Board that costs in the trials are coming down.  

COAG noted the Board of the National Disability Insurance Agency has commissioned a report on full scheme transition, and will advise governments in June on how best to proceed with the rollout.  

COAG agreed to list the NDIS as a standing agenda item for all COAG meetings. 

Fifield: Govt not trying to slow down NDIS roll out
James Glenday, Saturday AM (ABC Radio), 3rd May 2014

Despite reassurances from the states at yesterday's COAG (Council of Australian Governments) meeting that the NDIS (National Disability Insurance Scheme) will go ahead as planned, parents and carers of the disabled are still concerned about the Commission of Audit recommendations.

The Federal Minister responsible for the NDIS is Mitch Fifield.

He told AM's James Glenday the Government isn't trying to slow down the roll out of the scheme, but it does want to make sure that it'll work as planned ...

Weekend reading and viewing: 3rd - 4th May 2014

Creating constellations. For Kristin

Kelle Hampton, Enjoying the Small Things, 1st May 2014
In the 5th grade, I sat next to a sweet girl with the same genetic makeup as your Nella.
I didn't expect the sentence that followed, and when I read it, my stomach flipped.
And I was mean to her ...

The truth about Down syndrome (video 12m 9s)

Children's Hospital Colorado, 22nd April 2014
In Sarah Hritz's short life, she has battled more challenges than most of us will ever know, many of them stemming from having Down syndrome. Her parents, Dave and Andrea Hritz, lovingly tell their family story in this video that asks us all what we know about Down syndrome and what in life is really the most important.

First and foremost, I am
Sigríður Ella Frímannsdóttir, Lens Culture, January 2014
This week's portrait series is from Iceland ... photographed in response to an article written by Halldóra Jónsdóttir, a young woman with Down syndrome, giving her opinion about pre-natal screening.

Obituary of Peggy Fray
Carol Boys, Down's Syndrome Association (UK), 1st May 2014
... Peggy’s lifelong mission was that people with DS and dementia should have automatic access to specialist care from professionals with a true understanding of their needs. She often talked about the importance of dignity and respect – some of the words used by John Langdon Down himself ...

(Margaret (Peggy) Fray's book, Caring for Kathleen, was the first family account of caring for a person with Down syndrome and dementia acquired by the Down Syndrome NSW library.)

What Slowing Down Teaches You That Rushing Never Will
Elisa Fryling Stanford (guest blogger), Thin Places, 29th April 2014
The mother of a child with Down syndrome joins her daughter’s rebellion against hurried living

"I can do it!": ways to grow your child's independence
(US) National Down Syndrome Society webinar series, 29th April 2014
Video and slides from the webinar are now available online (click on the title for the link).

These young models are changing the world

Stacie Lewis, Baby Centre, 30th April 2014

... It may sound strange, but the moment we will know these mothers’ campaigns have been a success, will be when we stop noticing their children altogether. When their child is just another adorable, ray of light smiling from a magazine page. When the media we watch, truly represents the people watching ...

Research news and commentary #6 for 2014

Researchers uncover link between Down syndrome and leukemia

Medical Express, 20th April 2014

Although doctors have long known that people with Down syndrome have a heightened risk of developing acute lymphoblastic leukemia (ALL) during childhood, they haven't been able to explain why. Now, a team of Dana-Farber Cancer Institute investigators has uncovered a connection between the two conditions. In a study posted online ... by the journal Nature Genetics, the researchers track the genetic chain of events that links a chromosomal abnormality in Down syndrome to the cellular havoc that occurs in ALL. Their findings are relevant not only to people with Down syndrome but also to many others who develop ALL ...

• Nature Genetic article preview online

Autonomy and relationships among ‘good life’ goals
Rebecca Graham, Science Network Western Australia, 18th April 2014
... The ECU research team aimed to understand “what makes a ‘good life’” for young adults with Down syndrome, and what the facilitators and barriers were to a good life.

“We wanted to explore the factors associated with the ‘best’ outcomes for people with Down syndrome, so we can guide policy and interventions towards maximising the likelihood of these young people reaching their potential,” she says.

“However, we needed to define what that ‘best’ outcome was for people with Down syndrome, from their perspective.” ...

Trisomy 21: How an extra little chromosome throws the entire genome off balance

Science Codex, 17th April 2014 
... Despite much research, the exact mechanisms causing the various symptoms associated with Down syndrome remain a mystery. According to a hypothesis called «gene dosage disequilibrium», the presence of a third chromosome 21 could influence the expression of all the other genes in the genome ... This study opens the door to a new way of understanding the molecular mechanisms that explain the symptoms of Down syndrome. ...

Downs syndrome research offers new insights
7.30 South Australia (ABC TV), 11th April 2014
An Adelaide geneticist has recently published a paper which she says sheds new light on the processes that leave some women more prone than others to having a child with Down Syndrome
The work's been welcomed by families, who say it's useful for prospective parents but for those with Down Syndrome children, disinformation and pressure to make quick decisions remain all too commonplace. (Video: 7m 31s)

• Reduced quality and accelerated follicle loss with female reproductive aging - does decline in theca dehydroepiandrosterone (DHEA) underlie the problem? Judith H Ford, Journal of Biomedical Science, 2013, 20:93  (doi:10.1186/1423-0127-20-93), published 13th December 2013. Open Access.

New Research Suggests Connection Between White Matter And Cognitive Health

Red Orbit, 8th April 2014
A multidisciplinary group of scientists from the Sanders-Brown Center on Aging at the University of Kentucky have identified an interesting connection between the health of the brain tissue that supports cognitive functioning and the presence of dementia in adults with Down syndrome.

Published in Neurobiology of Aging, the study, which focused on detecting changes in the white matter connections of the brain, offers tantalizing potential for the identification of biomarkers connected to the development of dementia, including Alzheimer’s disease ...

• Abstract: Frontal white matter integrity in adults with Down syndrome with and without dementia

Physicians: too many doing Down syndrome prenatal testing wrongMark Leach, Down Syndrome Prenatal Testing, 14th April 2014

A study of parents of children with Down syndrome reports on their experiences with finding out the diagnosis. It finds that too many physicians still are doing it wrong ...

New online ...

Image:Pixabay.com

Meet the Governors of the NDIS - a webinar on working together to build the NDIS 

This webinar, held on16 April 2014 is now available to view online
The panel discussed working together to build the NDIS and responded to questions about the Scheme from an online and theatre audience. Answers to questions submitted during the webinar which were not responded to on the day will be published shortly.

From the Department of Developmental Disability Neuropsychiatry (3DN), UNSW

• Successful Ageing for People with Intellectual Disability 

Associate Professor JulianTrollor presented a talk at a forum held at NSW Parliament house on Monday 7th April. The talk outlined potential strategies to address the health issues related to ageing in people with an intellectual disability. The talk was part of a series of presentations in a Forum entitled “Dementia and Disability: The Facts, Strategies and Implications”, organised by Alzheimer’s Australia NSW, the Centre for Disability Studies at the University of Sydney, and the University of New England.  The presentation is now available online here

• Submission to the National Mental Health Commission’s Review of Mental Health Programs and Services

3DN recently made a submission to the National Mental Health Commission’s Review of Mental Health Programs and Services. More information on the review can be found on the Commission’s website.

3DN completed responses to the Commission’s survey and summarised our feedback in this report.

Use of Business Services Wage Assessment Tool extended for one year

Late last year, Down Syndrome Australia joined other peak bodies calling for the abolition of the Business Services Wage Assessment Tool (BSWAT), after the High Court found it disadvantaged workers. The Australian government then applied for a three year exemption from relevant provisions of the Disability Discrimination Act before implementing the recommended changes. The outcome of the application was announced this week:

Application for exemption from Disability Discrimination Act 1992 for Business Services Wage Assessment Tool (BSWAT)
Australian Human Rights Commission media release, 29th April 2014

On 5 September 2013 the Commission received an application for a temporary exemption from the Disability Discrimination Act 1992 from the Commonwealth. The application sought a three year exemption under the Disability Discrimination Act for the Business Services Wage Assessment Tool (BSWAT). The application was also made on behalf of all the Australian Disability Enterprises (ADEs) who use the BSWAT. 

The application was published on the Commission website with a 6 week period for submissions. Over 100 submissions were received from various stakeholders.
On 13 December 2013 the Commission sought further submissions from the applicants and a small number of stakeholders in relation to various alternative tools that had been proposed in the submissions received by the Commission. The Commission received a further 5 submissions in response to the request for further information. 

The Commission has decided to grant the Applicants a temporary exemption from the operation of sections 15, 24 and 29 of the Disability Discrimination Act to allow the payment of wages to ADE employees, based on assessments already conducted with the BSWAT, for a period of 12 months, subject to the following conditions:
The Commonwealth: 

a. Take all necessary steps to transition to the Supported Wage System, or an alternative tool approved by the Fair Work Commission, as quickly as possible.
b. Immediately commence using the Supported Wage System, or an alternative tool approved by the Fair Work Commission, to conduct new and outstanding wage assessments.
c. Report to the Commission on a quarterly basis during the exemption period as to:

i. The number of assessments conducted each quarter; and
ii. The number of assessments still to be conducted.
d. Give consideration to ensuring that no disadvantage is suffered by ADE employees whose wages may be reduced as a result of the application of the Supported Wage System or alternative tool.

As this decision can be reviewed under the Administrative Appeals Tribunal Act 1975, this is the only statement the Commission will be making on this matter.
A copy of the Notice of Grant of a Temporary Exemption is online at https://www.humanrights.gov.au/department-social-services-dss.

Australian Human Rights Commission supports continued discrimination of employees with disability

People with Disability Australia media release, on behalf of a number of peak bodies, including Down Syndrome Australia), 30th April 2014
National peak disability and advocacy groups condemn the decision by the Australian Human Rights Commission (AHRC) to allow the Australian Government and sheltered workshops (also known as Australian Disability Enterprises or ‘ADEs’) to continue to discriminate against employees with disability.

However, we also applaud the AHRC for placing the final nail in the coffin of BSWAT and other competency-based wage assessment tools ... read on here

Wage assessment tool approved for short term use
Senator The Hon Mitch Fifield, Assistant Minister for Social Services, (media release) 29th April 2014
The Australian Human Rights Commission will allow the payment of wages to supported employees in Australian Disability Enterprises who have already been assessed under the Business Services Wage Assessment Tool (BSWAT) for another 12 months, subject to conditions ... It is disappointing that, on face value, the decision does not provide Australian Disability Enterprises with the amount of time they need to transition to new wage setting arrangements.

We have been working hard to resolve this issue and as part of this the Government has already announced the establishment of a payment scheme for supported employees with intellectual disability in Australian Disability Enterprises who previously had their wages assessed under the BSWAT ... read the full text here

Ruling lets government pay some disabled workers $1 an hour
Rick Morton, The Australian, 29th April 2014
The Australian government can continue to pay some disabled workers as little as one dollar an hour under a temporary exemption from the Disability Discrimination Act granted by the top human rights body late today.

The Australian Human Rights Commission knocked back an application from the Commonwealth for a three-year exemption from the Act and instead agreed to a 12-month exemption for employees who had already been assessed under the faulty wage determination tool known as the Business Services Wage Assessment Tool ... read on here.

Wage assessments in Australian Disability Enterprises (Department of Social Services)

Reminder: 'Just a bit ... funny' is on this weekend

Several people with Down syndrome will be performing at the Sydney Comedy Festival this weekend, with Beyond the Square's  Just a bit ... funny project:

Sunday May 4th, 6pm 

The Factory Floor, Marrickville

• Booking 

We will be launching our new online sketch comedy show on the evening where you’ll get to view skits made by and about people with disabilities who have been involved in this two staged project.

The evening will feature some of Sydney’s leading comics with and without disabilities and all this for a good cause… Us! Yes, the night also acts as a fundraiser to keep Beyond the Square going! 

Our MC is the wonderful Tommy Dean with the line up being Alex Wasiel, Dane Hiser, Darien Brown, Billy Freeman, Madeleine Stewart, Phillip Debs & Tracie Sammut plus someone who we’re not allowed to mention! Oooo, mysterious!
The night is fully Auslan interpreted and video segments will be captioned.

Scrapheap Adventure Ride 5: time to start planning

If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome NSW by sponsoring a rider or just donating to the cause.

Scrapheap official website:

www.scrapheapadventureride.com.au

Rider registration, sponsorship and donations:

www.everydayhero.com.au/event/scrapheap

Facebook page:

www.facebook.com/scrapheapadventureride

If you would like more information please contact:

Perry Gilsenen

Benjamin Chinnock, Community Engagement Manager

0402 503 885 ben.chinnock@dsansw.org.au

What I'd say ... "I'm not here to tag along"

To brighten your Tuesday ...

What I'd Say (4 m 17s)



Open Future Learning, published on 25th April 2014
Listen to the words, 'What I'd Say' is a powerful song about our work. It is written and performed by Michael Steinbruck and Andrew Maroko, and stars Roger Crown. Visit www.openfuturelearning.org

Direct link to You Tube

Ph D Scholarship offered at UNE: research project on needs of older people with developmental disabilities

The University of New England is advertising a PhD scholarship associated with the award of a recent ARC Linkage grant.

This is a 3-year project, in partnership with aged care and disability agencies across two states (NSW and Queensland). It aims to examine the ways aged care, social and health needs of people with intellectual and developmental disabilities may be met in rural and urban settings. The ARC project will explore mechanisms that can lead to better integration of the aged care and disability sectors.

Closing date for applications is 15 May 2014.

• The advertisement, with full details of the requirements is here, on Seek.com

News and commentary on the NDIS (20)

Disability scheme supports everyone
Bruce Bonyhady, The Australian, 26th April 2014
"EveryAustralian counts” is the catchcry that has united the disability sector, galvanised the nation to support an increase in the Medicare levy and won multi-partisan political support for the National Disability Insurance Scheme.

For the first 30 years of my life, I mistakenly thought “every Australian counts” was a statement of fact. But from the time, nearly 30 years ago, that my eldest son was born with cerebral palsy, I have seen people with disability do not count. In those days, most Australians with disability were shut into Dickensian institutions. Invisible. Now they are largely shut out from an ordinary life, supported only by loving but increasingly exhausted and isolated families ...

• Bruce Bonyhady, a former fund manager, is inaugural chairman of the National Disability Insurance Agency. He has two sons with disability.
• Alternative link, via Every Australian Counts

Disability groups defend NDIS investment

Rick Morton, The Australian, 25th April 2014
Federal spending on disabil­ity will rival defence funding, ­approach parity with money spent on Medicare benefits ser­vices and outpace all spending on schools in the decades to come, according to Commission of Audit figures.

But disability groups and a conservative think tank said the combined figures for the Disability Support Pension and the Nat­ional Disability Insurance Scheme — which had forecast $36.8 billion of annual spending in 2023-24 — fail to take into ­account other economic ­dividends ...

iPad from NDIS gets Zoe talking and texting

Rachel Baxendale, The Australian, 25th April 2014
Zoe Lovegrove’s increased ability to let her family and friends know how she’s feeling has brought her mother to tears more than once since she received a tablet computer as part of her NDIS plan in December. The 18-year-old, from Bridport in Tasmania, has Down syndrome and often struggles to communicate, but the tablet, coupled with the extra support for her and her family from a caseworker, has made a huge difference ...

Safeguards and the NDIS
NSW Ombudsman, Fact Sheet, April 2013
On 10 April 2013, the Disability Complaints Commissioners met with the CEO of the National Disability Insurance Agency (then DisabilityCare), David Bowen, to discuss safeguards and the NDIS. Mr Bowen advised that it would assist the Commonwealth to obtain the perspective of the 
Commissioners on the necessary safeguards.

Below are the minimum safeguards the Commissioners believe ought to be in place under the NDIS for people with disability. At a minimum, all efforts should be made to ensure that the safeguards for people with disability under the NDIS are at least as robust, transparent and procedurally fair as those available in the current disability system ...

Liberal MP warns disability scheme could be run more efficiently

Margaret Paul, ABC News (online), 15th April 2014
The Liberal MP who is chairing an inquiry into the National Disability Insurance Scheme (NDIS) has guaranteed there will be no cuts or delays to the scheme in next month's federal budget ...

Fear, hope and disability

Kathy Evans, Sydney Morning Herald, 15th April 2014
While not without its problems, the National Disability Insurance Scheme has thrown some Victorians a lifeline ... What has been missing in the general hoo-ha has been the voices of those it seeks to protect. As the first year draws to a close, how exactly has it changed their lives? ...

Paralympic great Kurt Fearnley says the NDIS will benefit the whole of societyMichelle Pain (Hobart) Mercury, 11th April 2014

... (Kurt Fearnley) met Claremont’s Daniel Thomson, 21, who is among more than 500 already benefiting from the NDIS trial.

Daniel, a softballer, basketballer and Special Olympian, has autism spectrum disorder and has difficulty with everyday life skills. Mum Kathy said NDIS support, through Baptcare, had been life changing, and has allowed her to work more.

NDIS related events

Disability and a Good Life: What does it take?

UNSW Says Who? Public Panel Series
Wednesday 30 April, 2014 - Sydney

Parliamentary Joint Standing Committee on the NDIS in Newcastle

The Parliamentary Joint Standing Committee on the NDIS will be visiting Newcastle on 5-6 May.
The committee is to:

• review the implementation of the NDIS; 
• review the administration and expenditure of the NDIS; 
• review any matter in relation to the NDIS referred to the committee by a resolution of either House of the Parliament;

The Hon. Mal Brough MP, Chair of the committee said:

“Our visits to the trial sites are to allow NDIS participants, their carers and family members to tell us about their experience with the NDIS to date. The committee wants to understand the process that people with disability go through to become participants in the scheme, and how they have received and used their package of supports.”

Registration is required to attend: Visit the parliamentary website here

Getting the Best from the NDIS - making it work for people with intellectual disability
August 28 and 29 2014 - Newcastle
This NSW Council for Intellectual Disability (NSW CID) conference will include a focus both on issues of general interest and on:

• Health issues – how health services and the NDIS can work together towards good health and good disability support.
• People on society’s fringe – how the NDIS can be inclusive of people in contact with the criminal justice system and other people with intellectual disability living isolated and unsupported lives.

You can register your interest by emailing info@nswcid.org.au

Weekend reading and viewing: 26th - 27th April 2014

For whom Wade was named
Leticia Keighly, Embracing Wade, 24th April 2014
... Early in my pregnancy I had been told that there was a high chance our baby may have Down syndrome and at 20 weeks it was all but certain. It was a very difficult time for us. We had decided to love and welcome this baby regardless but we worried about telling Jack. Alone with his thoughts, Dot worried it might be too much for him. They had raised a child with a severe disability and had lost him at 19 years of age. They did it with few supports and it was hard. She needn’t have worried because not long after I knew it in my heart that our baby had Down syndrome, Jack said to me, There’s something special about the baby”. Tears streaming down my face he told me he thought I would be a wonderful mother.
Our son was indeed born with Down syndrome and we named him Wade after both Dot and Jack. We visit pop at the nursing home every week and a couple of times a week, he asks Nan if it’s “Baby Day” tomorrow ...
For our readers outside Australia - 25th April is ANZAC Day, the day on which we remember those who have served our nation in war, those who returned, and those who did not.

A royal morning in Canberra

Juliet Rieden, Australian Womens Weekly (online), 24th April 2014

It's been a big morning for six-year-old twin brothers, Oliver and Sebastian Lye, who joined the Duke and Duchess of Cambridge to water the English Oak tree planted by the royal couple in Canberra's National Arboretum ... Sebastian has Down Syndrome, a vision impairment and is hearing impaired, but he doesn't let this get in his way of joining in everything his brother does. The twins both play soccer and they love to swim ...

Are mothers of kids with Down syndrome embarrassed?
Ellen Stumbo, Finding Beauty in Brokenness, 11th April 2014
... I am not offended when people ask a question like this. Not one bit. Why not? Because before my daughter was born with Down syndrome I actually wondered this very thing ... I was terrified to think if that ever happened to us! ... When my second daughter was born with Down syndrome two years later, embarrassment was not even in my radar. But there was a lot of fear. Fear of the unknown, fear of what I thought our lives would be like ...

Special Disability Trusts

Katherine Hawes, Link,Volume 23 - Issue 1 April 2014
All parents worry about their children. However, parents of children with disability often carry the additional burden of what will happen to their child after their own death. The good news is that the federal government’s Special Disability Trust Scheme may just be the way to reduce these worries and find you that all-important peace of mind ...

You will need to register to read articles - registration is free.

Facing Difference

Ian Brown (text), Jaine Hogge (photos), The Walrus, May 2014
Down syndrome in the age of prenatal testing - a photographic project

2014 photo campaign

International Mosaic Down Syndrome Association, 23rdApril 2014

Learning difficulties
Norman Hermant, Lateline (ABC TV), 17th April 2014
For students with physical and developmental disabilities schools that cater to their needs and allow them to thrive are the exception rather than the rule. Video and transcript.