Address details

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

Friday, 27 February 2015

Weekend reading and viewing: 28th February 1st March 2015

What I Learned From My Son After the Death of Our Dog
Kari Wagner-Peck, The Good Men Project, 20th February 2015
Kari Wagner-Peck had trouble explaining the death of their beloved dog to her son, until she realized her boy had a lot to teach her, too ...

Why I didn't terminate my pregnancy after a Down syndrome diagnosis 
Maureen Wallace, She Knows, 21st February 2015
I want to thank the woman who publicly shared how she terminated her pregnancy because her child would be born with Down syndrome. As difficult as her words are to read, they offer a road map for us to address hurdles standing between our loved ones with Down syndrome and the inclusion and respect they deserve ...

West Ham fans sing anti-Semitic chants and tease disabled people after mocking racist Chelsea mob
Ali Gordon, Belfast Telegraph, 24th February 2015
Kevin Kilbane has made an official complaint to the Football Association after West Ham fans allegedly used insulting language mocking disabled people ...

Exhibition by Digby Webster @ Leichhardt Library
Sunday 1 March to Tuesday 31 March 2015

This boss gives the disabled what she says they want: jobs
NBC News, 25th February 2015
The Prospector Theatre in Ridgefield, Connecticut is a one of a kind movie house, employing adults with special needs.

My Choice Matters Newsletter, February 2015
Accessible Arts Newsletter, February 2015 

NSW election 2015

The NSW State election is scheduled for 28th March 2015.

Voting information

iVote - voting online or by phone - is now available to all people with a disability (and to people who find it difficult to vote because of their location). Click here for videos on how to register and how to vote.

NSW 2015 election policies

People with Disability Australia's Election Platform NSW 2015
PWDA’s 2015 NSW Election Platform focuses on a socially just, accessible and inclusive NSW community. Our Platform identifies five key areas which we believe should be prioritised by the NSW Government during this time of significant change in the disability landscape ... click here for details
NSW Labor policy: Graeme Innes to head new disability employment advocacy body
Rachel Browne, Sydney Morning Herald, 17th February 2015

Thursday, 26 February 2015

More responses and media coverage of the McClure report

We can expect more analysis as people have time to read the welfare reform report A New System for Better Employment and Social Outcomes, released yesterday, and as we are better able to anticipate its impacts on the welfare system, both for those who already receive benefits, and those who will become eligible under new criteria. These responses are from yesterday and today:

Welfare reform will succeed with the right employment support
Inclusion Australia, 26th February 2015
... Getting a job is good. Good for the individual and the federal budget. Investment in support that works is value for money. Inclusion Australia presented two case studies of evidence based practice to the consultation — Audrey and David. These show that with the right right support, it is possible to get a job and reduce reliance on the pension ...

The Drum (ABC 24) 25th February, 2015
Graeme Innes (former Disability Commissioner at the Human Rights Commission) is a specialist guest panellist for the first discussion in this episode, on the McClure Report. He provides a clear, concise insight into what reform needs to achieve for people with disability, especially from an employment perspective (his participation starts at 7m 50s, following a more general discussion of the report).

Changes proposed for disability support payments to encourage people into work
Every Australian Counts, 25th February 2015
... For people on the Disability Support Pension with a severe or permanent disability, the report recommends ‘a supported living pension.’ The rules would be tighter for this payment – only those with a disability expected to last more than five years would be eligible.

For others with some capacity to work, the report recommends moving onto a ‘working age payment’ which would have a tiered level of payment with higher rates for people depending on their disability and how much they could work or study.

Mr McClure was at pains to stress that “no individual moving from the old system to the new system will experience a reduction in their rate of payment”.

The report also calls for government to step up on their employment of people with disability and mental health conditions and for a more extensive jobs package to help people get into work.

The Minister responsible, Scott Morrison, welcomed the report but has not said if the government will implement it, claiming it is being considered as part of decisions for the next Budget in May ...

NFPs (Not-for profits) React to McClure Welfare Review
Lina Caneva, ProBono News Australia, 25th February 2015
The Federal Government has released the long-awaited final report of the review of Australia’s welfare system including controversial recommendations around Disability Support Pensions which has had a mixed reaction from the Not for Profit sector.

The report recommends a new disability payment which would be restricted to people unable to work more than eight hours a week ...

Welfare Review: right questions, flawed model
Australian Council for Social Services, 25th February 2015
Though welcoming key aspects of the McClure report released today, the Australian Council of Social Service said the final report of the Federal Government's commissioned review of Australia's welfare system was a missed opportunity to move to a more rational system based on people's financial need rather than decisions about ‘deservedness' ...

Welfare reform must be backed by job creation
Veronica Sheen, The Drum, 25th February 2015
Making it easier for people to move from welfare to employment is laudable, but this report won't solve the fundamental problem that there are far more people looking for work than there are job vacancies ... it is great that Patrick McClure and the members of the welfare review panel are so insistent that employment outcomes be the centrepiece and main motivating principle of Australia's social welfare system. It does seem strange though because welfare-to-work has most definitely been a central motif of Australian social welfare policy for a very long time. There are strenuous work-search requirements on unemployed people and heavy caveats placed on people with disabilities to prove their entitlement to a payment.

Welfare reform: key players weigh in
Emily Bowden, The New Daily, 25th February 2015
The federal government’s ambitious review of the $150 billion welfare system has been cautiously welcomed by both the disability sector and the Labor Party ... Major players warned, however, that work needs to be “worthwhile” for people with disabilities, with Social Services Minister Scott Morrison admitting certain payments were “isolating” ...

Compassionate and rational, but too brave a world for the times
Rick Morton, The Australian, 25th February 2015
Patrick McClure’s bid to rid the nation’s bolt-on social support system of spiralling inequity and confusion is at times compassionate, rational and brave.

It will take a braver government, together with as much political capital as it can muster, to realise the vision.

Such bold plans are fraught, as McClure knows all too well, after the Howard government largely ignored his last welfare assessment commissioned in 1999.

John Howard recoiled at ­reforming the payment system and doubled down on mutual obligation principles instead, like ­developing the 2005 welfare-to-work package.

Time has not been a friend of the system. The structure, which includes 20 income payments and 55 scattergun supplements and ­allowances, is so opaque people who could access payments sometimes don’t even know they exist ...

Rick Morton, The Australian, 26th February 2015
Community groups and the lead author of the welfare review have warned the government not to “cherry pick” from the report as it forges ahead with ­reform.

Patrick McClure told The Australian it was a “shame” recommendations from his report for John Howard, other than his focus on welfare-to-work policies, were left on the scrapheap.

“The key is it is an integrated approach. You can’t do one pillar without the others,” he said. Similarly, he said, Labor should not oppose it for opposition’s sake. “The sadness would be that just because an opposition has got to oppose government policy that they choose not to support it,” he said.

While welfare groups supported the broad thrust of the report, particularly its emphasis on investment and clarity, many were troubled by the detail, or lack of it ...

McClure welfare review offers second chance for reform
Rick Morton, The Australian, 26th February 2015
If the federal government accepts the bulk of Patrick McClure’s social security review then it will enter the time warp once again, a sort of Rocky Horror Welfare Show.

Everything old is new again.

It has been 15 years since the same McClure reviewed the same system for the ideological mentor of the current Prime Minister, John Howard.

The new report, released yesterday, comes to similar conclusions: the system of payments is a Frankenstein’s monster of bolt-on supplements and income payments, too cumbersome to administer and too poorly targeted to the most in need ...

Wednesday, 25 February 2015

McClure report on welfare reform released

The much-anticipated final report into the welfare system, led by Patrick McClure, A New System for Better Employment and Social Outcomes, has been released today.
Further comment will emerge as the report is read and analysed by stakeholders and advocates. Here are some early media releases and reports:

McClure: Jobs plan welcome, concerns about tough eligibility rules
People with Disability Australia (media release), 25th February 2015
People with Disability Australia (PWDA) cautiously welcomes some key recommendations from the final report from the Reference Group on Welfare Reform released today while expressing concerns about eligibility rules that could see claimants needing to show they can’t work more than eight hours a week with incapacity expected to last at least five years.

PWDA urged the Government not to ‘cherry-pick’ the report by adopting recommendations which relate to income support savings and ignoring those which relate to building a disability and mental health jobs plan. This time the obligations must be mutual and the focus on incentives not penalties ...
Welfare review by Patrick McClure lays out plan for simplified payments, tightening eligibility for disability support
Anna Henderson and Eliza Borrello, ABC News, 25th February 2015
ABC: DSS simplified payment chart
- click here for a larger view
A wide-ranging review of the nation's $150 billion welfare system has laid out a plan for five basic payments and recommends tightening the eligibility for disability support. 
The Coalition commissioned the review in December 2013 and asked lead author Patrick McClure, a former head of Mission Australia, to find ways to save money and encourage more people to return to work. 
"The current system is complex and inefficient, it's very difficult to understand and navigate for people on income support, and in addition there are a lot of disincentives to work," Mr McClure said. 
His report called for simplification of the 20 income support payments and 55 supplementary payments, but said no-one should receive less money than they do now.
The report suggests there should be five primary payments: a tiered working age payment, a supported living pension, a child and youth payment, a carer payment and an age pension ... 
Complex and ineffcient welfare system doesn't meet needs of changing labour market: McClureMichael Brissendon, AM (ABC radio) 25th February 2015
Australia's $150 billion a year welfare system is complex, inconsistent and needs to be radically overhauled. That's the view of one of the country's leading experts on welfare payments. 
Patrick McClure says the current system includes 20 primary payments and 55 supplements and should be simplified down to five payments. 
The former head of Mission Australia also recommends tightening eligibility for the disability support payment, but says no-one should receive less money than they do now ...
New report calls for radical welfare overhaul
Judith Ireland, Sydney Morning Herald, 25th February 2015
Australia's $150 billion welfare system should be radically simplified to include just five primary payments, with upfront investment in people at risk of long-term unemployment, a major review has recommended. 
The review, ordered by the Abbott government in 2013, also recommends personalised "Passports to Work" to tell welfare recipients how their payments will change if they start work or increase their hours, to reduce people's fear about taking a job. 
The final report of the review conducted by former Mission Australia head Patrick McClure was released on Wednesday, noting that "many" people on the dole would be better off under the new system. 
It also stressed there should be measures in place to make sure "no individual moving from the old system to the new system will experience a reduction in their rate of payment". 
Social Services Minister Scott Morrison praised the report as "very useful" and "visionary" but noted it provided a framework for change in the long-term, not in the next few years ...
Disability Support Pension under fire as bill to write welfare cheques hits $3 billion per year
Simon Benson and Annika Smethurst, Daily Telegraph, 25th February 2015
... A landmark report into the country’s ballooning $150 billion annual welfare burden, released today, says the cost to the Budget is becoming unmanageable unless people are put back to work and the payments system streamlined. 
Former Mission Australia chief Patrick McClure’s report into ways to streamline the welfare system also recommends condensing 20 support payments to just five, and slashing 55 supplements to only a handful to make the system simpler to manage ...

Tuesday, 24 February 2015

On inclusive education

Debate about segregation and inclusion of students with disabilities in schools has been waged for decades. In some countries (Italy is the best known example), all segregated schools were closed many years ago, but that is still unusual.

Differences are clearly not based only on research about educational outcomes, cost/benefit, funding and other resources, or the disability label the student is given, but also on values and beliefs:

It's time to end segregation of special education students, professors say
University of Kansas News, 10th February 2015
The time has finally come to end the separation of special education and general education students, researchers at the University of Kansas argue in a new publication. Not only does research show that all students have higher achievement in fully integrated environments, but support and public policy for schools to make such a switch are coming into place as well ...

The Elephants in the Special Needs Room
Phoebe Hoomes, Herding Cats, 19th January 2015
... Living in the world of special needs means, it seems that we keep so much to ourselves. The most common feedback I get from the blog is “You put into words what I can’t say.” and “I can totally relate!!!” And I’ve realized, we don’t really talk about the elephants in the room. Maybe because we’re too busy trying to keep them from stepping on tiny dogs and crashing into bookcases. So I thought I’d point out some elephants ...

Separate curriculum for students with disability no good for anyone
The Conversation, 12th November 2014
The review of the Australian curriculum raises major concerns about access to a quality curriculum for students with disability. Under the guise of creating greater inclusivity, the review recommends a separate curriculum for some students with disability ... This aspect of the review was widely reported in the media with an implicit acceptance of its accuracy. It is so commonplace for people with disability to miss out on services and resources that it is easy to accept that this is also the case with the Australian curriculum ...

Included, Everyone
Rachel Adams, Huffington Post,18th June, 2014
... At Henry's school inclusion isn't just an educational practice, but part of a curriculum organized around teaching social justice, civil rights and diversity ...

Disabling segregation: Dan Habib at TEDx
Published 22nd April 2014
Photojournalist Dan Habib didn't give much thought to disability — until his son Samuel was born with cerebral palsy. In this emotional talk, the disability-rights advocate explains his family's fight to ensure an inclusive education for Samuel, and how inclusion benefits not just Samuel and those who are included, but all of us ...

Latest additions to events pages

Down Syndrome NSW events

T4321 ('Tea for Trisomy 21)
T4321 ('Tea for Trisomy 21) is held throughout the month of March to celebrate World Down Syndrome Day and the lives and achievements of people with Down syndrome. This year is extra special, as Down Syndrome NSW is turning 35! So this year, our celebrations are going to be bigger, bolder and better than ever before!
21st March 2015, and throughout March 

T4321 Family Fun Day 2015
There will be plenty of activities for the whole family; World Record Attempt, indoor play equipment for the youngsters (10mths – 13yrs), rock wall climbing (enclosed shoes needed), petting zoo, singers/performers, cartoon characters, pamper zone, craft room, cupcake decorating and lots more!

The day will culminate in a world record attempt for the ‘Most people wearing the same socks’. We’re aiming for 321 socks!
Register here.

Saturday 21 March 2015
- Lollipops Playland Parramatta

Other events
These links provide information about events run by organisations other than Down Syndrome NSW that might be of interest to people with Down syndrome, their families, carers and the professionals who support them. They have been added to our 'Other 2015 events' page for ease of reference.

Arts + Disability Expo
Accessible Arts is proud to announce Australia's inaugural Arts + Disability Expo. The expo is a 2 day event showcasing the products and services available for individuals is the arts and disability sector. Featuring exhibitors across the arts and disability sectors, interactive demonstrations, discussions and live performances, the Expo will provide individuals, groups and families greater choice and resources to fully participate in the arts.
18 and 19 September 2015 - Carriageworks, Sydney

Monday, 23 February 2015

People with Down syndrome online, and in other media

Bus Stop Films, 13th February 2015
Documentary about Bus Stop's latest film 'Heartbreak and Beauty' here you will be able to see their inclusive filmmaking and creative process.
  • Heartbreak and Beauty premiered in Sydney on 21st February 2015.
Somebody to love
Fergus Falls Journal, 16th February 2015
Jill Oland and David Stenslie are in love. The signs are easy to see. Jill calls him “honey” and gently takes his hand and folds it into hers as they sit on a couch in her cozy south Fargo apartment ...

Lebanon's 'Ghadi': Down Syndrome child is an angel, not a demonAmal Al Jabry, Emirates 24/7, 15th February 2015
Lebanon's official Oscar entry explores both humanity and bigotry ...
Alex Heigl, People, 12th February 2015
... the 30-year-old actress broke another barrier Thursday, becoming the first model with Down syndrome to walk during New York's Fashion Week.  Brewer modeled as part of Carrie Hammer's "Role Models Not Runway Models" campaign, wearing an original design by Hammer ...

Melissa Cutler, Fox4 News, 11th February 2015
A Highland Park high school student is making an impact at his part-time job. Nick Jones' task is to make sure every car on his dealership's lot is perfect, and his work is making a bigger impression than he may realize. One thing that sets 18-year-old Nick apart from many is how happy he is to go to work ...

Games call has Cassy beaming 
Courtney Crane, Geelong Advertiser, 7th February 2015
Geelong born gymnast Cassy Geffke will mark her 25th year in the sport with her fourth Special Olympics World Games berth ...

Ready for work but is work ready for me?
Thea Calzoni, Every Australian Counts, 3rd February 2015
... Social acceptance is related to the role a person is given in the workplace. Why, with all her performance skills and ability with words, has Pippa not been welcomed into a ‘front of house’ job? So far her paid work has been out the back – in fast food kitchens or shelf stacking – never in customer service. This is a common experience of people with disability, regardless of their many abilities ...

Who Unlocked the Gate?
An Australian film in pre-production - the cast page includes profiles of two actors with Down syndrome, Tara Coughlan and Max McAuley who will have roles in the film.


It was good to see our short video, Ten things people with Down syndrome would like you to know, from some years ago included in Dr Brian Chiccoine's list of
... 4 pieces I have recently read or watched that caused me to pause and think about diversity and uniqueness, and challenged me to continue to get to know people with Down syndrome and other intellectual disabilities and as much as possible get the information from their perspective ...
Dr Chiccoine is the Director of the Adult Down Syndrome Center in Chicago, and a world renowned expert on the health care and development of adult and teens with Down syndrome.  

Read the full editorial, and see what the other three items he listed are, here, on the Centre's blog post, Diversity,  of 20th February 2015

Saturday, 21 February 2015

Weekend reading and viewing: 21st - 22nd February 2015

Down syndrome should not be feared
David Perry, WCVB Boston, 18th February 2015
... Despite the good press and the outpouring of support, when one's own child is diagnosed with Down syndrome, far too many people react with a toxic combination of fear and terror.

Fortunately, there are antidotes: information, experts and community. Thanks to the power of the Internet and the commitment of activists, politicians and experts of all sorts, access to these antidotes has never been easier ...

There's a silver lining?
Force of Nature, 15th February 2015
... It was honestly within a split second, I asked simon a question and that was it, Seb had gone. The usual panic rose inside but we tried to stay calm knowing he couldn’t have gone far. But which way to turn in all this routes? ...

Orange Juice Flavour Sky, 15th February 2015
... Having children changes your perception of love. Having a child with special needs takes it to the next level - not that I love Emily any more or any less than my other children. However, there are certain lessons of life which are learned when you have a child with special needs which we don’t necessarily learn with our other children. The journey towards learning these lessons and the love which accompanies our journey will look different for each and every one of us, so I don’t presume that everyone will have the same experience as me. However, there may well be echoes of a truth which resonate ...

Love doesn't discriminate
Enable Magazine, 13th February 2015
It’s Valentine’s Day tomorrow, and learning disability charity Mencap are celebrating matters of the heart with their video, featuring couples with learning disabilities and without – showcasing the fact that love doesn’t discriminate. In a guest blog, Lorainne Bellamy, who has a learning disability and works at Mencap (pictured below), talks about relationships and learning disability…

Down Syndrome Prenatal Testing Year in Review: 2014
Down Syndrome Prenatal Testing, 31st December 2014
The year 2014 mirrored the paradoxical trajectory of Down syndrome: just as things have never been better for individuals with Down syndrome, fewer are choosing to welcome children with Down syndrome into their families ...

Increasingly, Libraries Becoming More Inclusive
Jayna Omaye, Orlando Sentinel, 2nd February 2015
...Florida State University recently developed an online training tool that includes ways library staff, specifically those in rural areas, can communicate with and offer alternatives to visitors with autism ...

A personal story of choice and control
Lauren Hislop, My Choice Matters (blog), 6th February 2015
... I have asked my agency if I could meet the carers before they come to assist me. The agency informed me that, due to limited funding, they can't grant this request. So, 10 minutes after I initially meet a carer, I have to strip naked in front of them. In most situations somebody would really expect to be bought a drink prior to allowing someone else to see them naked!! In all honesty, I find this extremely dehumanising and disrespectful. It leaves me in an extremely vulnerable state ...

Optional, People or Optional People?
Leah Smith, The Disability Dialogue, February 2015
... (I) want to ensure that actors and actresses with disabilities have equal access to all the roles that their non-disabled peers have, especially those that specifically call for a disabled character; however, what seems more important in my mind is the story is being told about the person with a disability ...

Friday, 20 February 2015


Down Syndrome Education International's series of posts on education research, leading up to World Down Syndrome Day (21st March) has reached #16 this week, and it is an important, wide ranging one on the multiple impacts of commonly occurring sleep disorders on children with Down syndrome:

Sleep is important for development and learning, behaviour and general health. Research suggests that sleep problems are common among young people with Down syndrome and are likely linked to cognitive difficulties and behaviour problems. Further research is needed to evaluate treatments and potential therapies ... see more here

Down Syndrome Education International has also held its first webinar for the year (see more here about future dates), and the slides and video from the presentation are now available online, here

Book Reading Checklist for Parents - Hanen Centre
This checklist is a useful quick reference for use at home.  It has two parts, How You Share Books, and How Your Child Participates in Book Reading, and prompts follow up on where to go next with your child's literacy activities at home.
The Hanen Centre supports parents and professionals to help young children develop the best possible early language and literacy skills. For more tips on making the most of book reading to build your child’s early literacy skills, go to

Thursday, 19 February 2015

Terms of reference: inquiry into violence, abuse and neglect

The terms of reference for the  recently announced Australian Senate Inquiry into violence, abuse and neglect against people with disability in institutional and residential settings have been released.

Submissions can be made online or by post.  Public hearing dates are not yet available.

Submissions should be received by 10 April 2015. The reporting date is 24 June 2015.

Wednesday, 18 February 2015

Adult exercise class: Sydney (Cremorne)

News and commentary on the NDIS (29)

Recently, much attention has focused on formulating and implementing safeguards and prevention of abuse under the NDIS, including a consultation process now open on quality and safeguards:

NDIS Quality and Safeguarding Framework
Department of Social Services
The NDIS supports people with a permanent and significant disability that affects their ability to take part in everyday activities. The Scheme is being progressively rolled out in trial sites around Australia. 
Commonwealth, state and territory governments are developing a national approach to quality and safeguarding for the NDIS. 
We are looking at ways to make sure the NDIS provides quality supports, choice and control, and keeps people safe from harm. 
We want to hear what you think about the options for quality and safeguarding and how they will affect you ...
7 News/AAP, 16th February 2015
The federal and state governments could bring in a single system for checking the background of disability care workers. The recommendation is made in an issues paper released by disability ministers following a meeting in Melbourne on Monday ...

NDIA national disability plan useless without more funding, say unions
PM (ABC Radio), 12th February 2015
The ABC has obtained a draft copy of the National Disability Insurance Agency's proposed safeguards to prevent abuse and reduce the use of medication to restrain people who are violent. Disability advocates say it's a good start, but unions are warning safeguards will be useless unless the scheme has more money ...

Control and choices for people with intellectual disabilities
Life Matters, Radio National (ABC), 11 February 2015
At the heart of the National Disability Insurance Scheme is the aim to increase control and choice for people living with disabilities, but for people with profound or severe intellectual disabilities communicating their needs and desires is difficult. People can be left sitting for hours, waiting for something to happen in their day while their carers do things for them. But a different approach aims to change that. It’s called Person Centred Active Support and gives people greater agency over their own lives ...

Other NDIS matters

NSW Council for Intellectual Disability e-News, February 2015
The National Disability Insurance Agency (NDIA) has renamed ‘tier 2’ to ‘Information Linkages and Capacity Building’. Most people with intellectual disability will fall into this category and will make up the largest group of people accessing the NDIS.

NSW CID welcomes the NDIA’s initiative to undertake consultation, however, we are concerned that there is no mention of outreach for people who live on the fringe of society.
Without a very active process of outreach and relationship building, individuals living on the fringe are unlikely to see the potential benefit of the NDIS and/or seek assistance from it. NSW CID will be working on this issue to ensure that appropriate outreach is undertaken to ensure people living on the fringe obtain information and access the NDIS ...

Outdated job service ‘defeating the NDIS’
Rick Morton, The Australian, 10th February 2015
The National Disability Insur­ance Scheme is failing to work with the federal government’s antiquated $1 billion employment service and is being forced to push people into controversial sheltered workshops, says chief executive David Bowen ...

NDIS Step 1: Think and Prepare
Every Australian Counts, 6th February 2015
The NDIS is coming. Admittedly not fast enough for many of us but the fact that it will be rolled out across Australia in the next few years means now is a good time to start thinking about how to prepare. Every Australian Counts has talked to lots of people in the trial sites and asked them what they think people with disability need to do to get ready for the NDIS ...

Carers NSW, 7th October 2014
... an issues paper which summarises key issues arising for carers from the first year of the NSW trial of the National Disability Insurance Scheme (NDIS). The paper draws on research, consultation and policy analysis and intends to contribute to the ongoing refinement of NDIS design and implementation ...

Tuesday, 17 February 2015

Josiah: City to Surf runner, 2015

In an outstanding example of self-advocacy, and advocacy for others, Josiah is training for the 2015 City to Surf, on 9th August. 

He is fund-raising for Down Syndrome NSW, aiming for $5000 in sponsorship. From his Everyday Hero page:
I like to be fit and healthy and I like run with my family. 
One of the things Josiah really likes about all the exercise things he does is the social interaction. He will hi5 you as you run past him and say hi to anyone who he sees. 
People always enjoy seeing him working hard and they are inspired to work to their potential.
Josiah's fund-raising has kicked off already - you can support him here.

Monday, 16 February 2015

'We are worth the investment': Michael Sullivan

It was good to see this report in the weekend press, and highlighted widely on social media:

Budget cuts could silence voices for the disabled such as Our Voice's Michael Sullivan
Julia May, Sydney Morning Herald, 15th February 2015
Michael Sullivan has his own name for the NDIS, one that he believes better explains the scheme's purpose. Speaking at a disability conference earlier this month, he said a National Disability Insurance Scheme "sounds like something might go wrong". 
"How would that make you feel?" he asked the crowd at Geelong's Deakin University, to boos and groans. 
"I say the 'I' in NDIS should stand for 'investment'. We are worth the investment" ...
... Mr Sullivan has an intellectual disability ... and (is) chairman of the NSW Council for Intellectual Disabilities ...

If your speech therapist is not a good fit ...

Jennifer Bekins' blog post might help you to work through the sometimes difficult process of recognising when therapy is not going well, and a change of personnel might be a solution. Of course it's okay to take a break, too, or just to stop if that will work better for your child and family - sometimes we just need someone else to point it out, or reinforce the conclusions we've reached ourselves:

Changing Therapists
Jennifer Bekins, Talk - Down Syndrome, 6th February 2015
... I’ve had a number of people ask me recently, “How do I know if it’s time to change therapists?” 
This is a loaded question with lots to consider. I’m going to base the initial question of switching therapists on the assumption: There is someone your child can switch to ... It’s okay to change.

Friday, 13 February 2015

Weekend reading and viewing: 14th - 15th February 2015

When My 2-Year-Old With Down Syndrome Met a Grown Up Like Him at the Hair Salon
Anne Grunsted, The Mighty, 7th February 2015
... I didn’t need this mother’s empathy for what Bobby had already been through, but I needed her hope for his future. She knew, and she willingly obliged, painting me a picture of her son’s good life ...

Proudest day of my little girl's life was ruined for us
Brendan O'Connor, The Irish Independent, 8th February 2015
... If you met Mary you would notice the fact that she has a disability ... You certainly wouldn't need to get her to jump through hoops and ask her to prove that there are things she can't do. You wouldn't need to ask me and her mother intrusive questions. You would get it.
But the State doesn't get it. They need to humiliate Mary and her family in order to ascertain whether she is officially disabled enough to merit some extra help. They need to label her, and we have to play along with this labelling. It's disgusting really ...
When a Little Boy With Down Syndrome Came Up to My Daughter
Amy Fields, The Mighty, 3rd February 2015
... You opened your mouth to apologize to me. But then you heard laughter and turned around to see your son tickling my daughter. In her wheelchair. Two children. One with cerebral palsy and one with Down syndrome. Your frown turned into a smile as you recognized another invisible solider ...
Confessions of a Special Needs Parent: Please Don’t Praise Your Kid for Playing With Mine
Ellen Stumbo, Hope and Encouragement for the Special Needs Parent, 13th January 2015
... I want to encourage that friendship, I think you do too.  But ... When you say your kid is great because he/she chose to play with mine, at that very moment, your child went from seeing just another friend, to seeing kids like mine as different, as someone defined by their disability, as someone who is somehow flawed, and only an exceptional person plays with them or becomes their friend. I know that is not what you are trying to communicate, I know that, but unfortunately, it does ...
An Open Letter to Jules Anderson
Samantha Connor, The Stringer, 12th February 2015
... You were speaking up for every single Australian man, woman and child living in residential care or an institutionalised setting today. You were speaking up for every woman who was not believed when they told others, every man and child whose voice was not heard.
You spoke up with dignity, clarity and determination that this would never ever again happen to any other person with a disability ...
... As a woman with a disability and someone who cares about the safety and rights of others with disability – thank you, Jules. Thank you from all of us.

Regarding Leo ... and others

You might have seen reports online of a father taking his newborn son, Leo, who has Down syndrome, from Armenia, to New Zealand after his mother was said to have 'abandoned' him soon after birth. On the strength of initial online reports, outrage followed and an online funding page attracted much more money than was requested by Leo's father. Further consideration and information has led to some more thoughtful responses to the broader range of issues raised.

The first comment on our Facebook page's link to the story (7th February) points out that (as have others) ...
I am happy for this devoted daddy. However... if he had of been a woman with the husband leaving this would not have made media, and that beautiful baby boy probably would have not ended up with such a money gift. Not suggesting he does not deserve admiration ... it's just that there is an imbalance here that does not pay credit to the thousands of single mothers who are doing the same as him ...
Each of these blog posts was written by a parent or sibling of someone with Down syndrome:

Leo Forrest, Samuel and Ruzan
David Perry, How Did We Get Into This Mess? 10th February 2015
... So here's one conclusion: the internet is a thoroughly lousy place to figure out the intricacies of a relationship, especially one in crisis, from halfway around the world.
We are biased, flawed, creatures, too prone to leap to the heart-rending story and, in many cases, to lay our money down based on partial information ...
Leo, abandonment, and life with Down syndrome in some places
Mark Leach, Down Syndrome Prenatal Testing, 11th February 2015
... It was only through investigative reporting and progressive social policies to de-institutionalize and move individuals with disabilities back into the community that the expectation for a life with Down syndrome could be seen with more hope by parents. They finally had examples of what that life could be like from their neighbor, church member, child’s classmate, and employees at their local stores.
But these changes will not happen in countries like Armenia on their own ... donations would be better spent supporting the families to accept their children, rather than continuing the problem of institutionalization by funding the orphanages.
Jennifer Bekins, Talk - Down Syndrome, 8th February 2015
When Down syndrome (DS) makes my Facebook trending sidebar, I click the link. By now you’ve likely seen the article on Sam Forrest heroically taking his son when his wife allegedly abandoned him. And the internet exploded with outrage followed by the desire to “do something to help.” As of this morning Forrest’s Go Fund Me account has raised over 475K. Please let that sit for a moment. Complete strangers who heard the initial story of Forrest’s desire to move his child to his native New Zealand following resulted in nearly half a million dollars in funding in 12 days.Seriously. Red flags were everywhere ...
Father of Baby with Down Syndrome Raises $500,000 through Gofundme
Stephanie Meredith (guest blogger), Thin Places, 9th February 2015
... Methodically shifting social paradigms with hard work is not as sexy as one gripping story, but it’s the most effective way to improve conditions internationally — by working collaboratively with individuals within these nations and empowering families there. While I understand that donations roll in for individual cases like the Forrest family, and I’m genuinely happy Leo will get the support he needs, it’s frustrating that the public is much less likely to support these coordinated efforts that help many more people ...
An Open Letter to Baby Leo’s Dad…from a “Down syndrome Mom”
Meriah Nichols,, 12th February 2015
... The one thing that I beg you not to do is to donate to Armenian orphanages. Doing so will help to perpetuate the very institutionalism that we seek to change ... I urge you to keep a firm eye on the conditions within Armenia and Eastern Europe for children with disabilities, the very conditions that caused you to leave ...

Thursday, 12 February 2015


Children’s Books Honored For Disability Storylines
Michelle Diament, Disability Scoop, 5th February 2015
The winners of this year’s Schneider Family Book Awards include tales of a boy who stutters, a girl with autism and young adults with intellectual disabilities during transition.

The Schneider awards are presented annually by the American Library Association to authors or illustrators for the “artistic expression of the disability experience.” One award is given for works aimed at each of three audiences — kids up to age 8, those ages 9 to 13 and teens.

Fasten Your Seatbelt - short videos
A series of very short videos featuring Brian Skotko and Sue Levine  discussing single topics from their well loved book for siblings, could be useful for discussion with siblings, about one thing at a time.

These resources are designed specifically for professional support workers:
' ... an online learning resource developed specifically for disability support workers. The resource provides an introduction to Person Centred Active Support - a way of working that enables everyone, no matter what their level of intellectual or physical disability, to make choices and participate in meaningful activities and social relationships.'
Produced as a collaboration between Greystanes Disability Services and the Living with Disability Research Centre at La Trobe University, funded by the Australian Government Department of Industry.

Service, Support and Success
The first two 2015 issues of Service, Support and Success, a valuable Canadian newsletter for direct support workers, are now freely available online:

Dave Hingsburger, Service, Support and Success, Vol 4, issue 1, January 2015
... As someone who is now a care recipient, I’ve learned a lot about what it is to be on the other side of another’s Paid care, and as much as we say ‘we work for people with disabilities’... when receiving care, it never, ever feels that way ... There are those, however, who provide care in such a way that, while I may not feel like the employer, I don’t feel like the lesser, I don’t feel like a passive participant in the process.

I’m going to list a few of the things that those who help me, in a helpful way, leave me feeling simply helped and never lessened ...

Yona Lunsky, Service, Support and Success, Vol 4, issue 2, February 2015
... Sometimes when we have an interaction that is difficult, we put it on the person, especially when we feel like we are being criticized by them. But chances are, if the family is giving us a hard time, they are having a hard time ...


Airline Carrier Announces New Policy for Disabled Passengers
ProBono News Australia, 29th January 2015
Australian airline, Virgin Australia, has made significant changes to its policies to make it easier for people with a disability to access lower airfares, in a move welcomed by the Public Interest Advocacy Centre. 
As part of the change, people travelling with a carer can now make flight bookings by phone up to 331 days in advance at the internet discount rate, without the requirement to enter their carer’s name at the time of booking ...

NSW Companion Card
... has posted a reminder on its Facebook page, that the card is accepted for carer tickets for Sydney's Royal Easter Show (24 March – 8 April 2015)

Wednesday, 11 February 2015

Senate votes unanimously for a national inquiry into the abuse of disabled people

Today's Senate vote has been welcomed by disability advocates, both individuals and organisations:

Senate Votes on Disability Abuse Inquiry
ProBono News Australia, 11th February 2015
The Australian Senate has voted unanimously to hold a national inquiry into the abuse of disabled people in institutional and residential settings. 
Disability advocates, including abuse victim Juliette Anderson, had spent Wednesday campaigning for Senators to support the motion for an inquiry.
At around 4pm on Wednesday every Senator present voted in favour of the national inquiry ... 
Greens Senator Rachel Siewert, who moved the motion, welcomed the outcome of the vote ... “People with disability and organisations representing them can breathe a sigh of relief that there is finally an inquiry that will address the systemic issue of abuse of people with disability in care at a national level. This inquiry is just one step to ensuring that people with disability can feel safe day to day whilst accessing essential services" ...

Health news

You will notice that several of these news items are reprinted from the NSW Council of Intellectual Disability's monthly E-news, which you can subscribe to (without charge), here. NSW CID has an excellent record of advocacy for quality health care for people with intellectual disability, and regularly includes health information on the E-news:
NSW CID E-news is a monthly email news bulletin to update NSW Council for Intellectual Disability (NSW CID) members and supporters of recent NSW CID activities. It contains news, events and information relevant to people with intellectual disability and their advocates.
eHealth records for people with intellectual disability 
NSW CID e-news, January 2015
People with intellectual disability can register to have an eHealth record so that their health information is on a Commonwealth Government website. With their approval, doctors and hospitals can look at a person's eHealth record. NSW CID supports eHealth records which can help doctors to provide the best treatment and help you to be healthy. 
People with intellectual disability should be given support to make their own decisions about having an eHealth record. However, even with good support, some people will not understand the eHealth records process. Therefore, closely involved supporters like family members can then apply to be an ‘authorised representative’ for the person to make decisions about registration and management of the eHealth record.

For more information and to register for an eHealth record click here.
Cochlear Implants Give Young Boy with Down Syndrome a New Lease on Life at Lucile Packard Children’s Hospital Stanford
Business Wire, 4th February 2015
... “Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology - Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it” ...

Monash University, 28th January 2015
MIND-IT, a research team supported by the Monash Warwick Alliance, is working to improve the wellbeing of children and adolescents with intellectual disabilities or autism, and their families ... 
... “Many families are coping well, but some are not. Research findings show that when families struggle to cope this is mainly due to issues associated with a child’s disability rather than the nature or severity of the disability itself. Such associated difficulties include access to diagnosis and treatment if the child has additional behavioural and emotional issues, and a lack of support for parents. So the good news is many of the issues causing high levels of stress in families can be addressed by better support,” Professor Hastings said ...

Congratulations to Julian Trollor
NSW CID e-news, January 2015
Dr Julian Trollor is the Chair in intellectual disability mental health at University of NSW. He has been promoted to Professor. This is a well deserved recognition of the great work being done by Julian and his team to improve the mental health of people with intellectual disability. From the start, Julian has been keen to work closely with NSW CID and has seen how crucial it is to hear the direct voice of people with intellectual disability. For example, Julian employs people with intellectual disability to co-deliver education sessions for mental health professionals.

NSW mental health plan has no action for people with intellectual disability NSW CID e-news, January 2015
NSW CID is very alarmed by the lack of specific action on the mental health of people with intellectual disability in the NSW Government’s response to its Mental Health Commission’s Strategic Plan. Click here to view the plan. 
The Mental Health Commission set out clearly the fundamental problems facing people with intellectual disability in obtaining mental health care and provided practical steps for action. The Commission’s approach is in line with the outcomes from the National Roundtable on the Mental Healthof People with Intellectual Disability which NSW CID convened in 2013.

Mental Health Minister Guy Rowell stated that the Commission’s Strategic Plan “provides a 10 year roadmap for strengthening mental health care in NSW”. However, there is no specific provision for people with intellectual disability in the initiatives the government has announced. 
NSW CID is seeking a meeting with the Minister.

Tuesday, 10 February 2015

Kosciuszko to Coogee: fundraising cycling event

Kosciuszko to Coogee, is an inspired fundraising idea to help raise money for the work of Down Syndrome NSW. Created by Lance Mitchell it starts on 21st March 2015 and involves 16 days of cycling from Mt Kosciuszko all the way to Coogee finishing on the 5th April.

You can donate to support Down Syndrome NSW or follow Lance’s progress as he trains in preparation:

Free webinars from Down Syndrome Education International: 2015 program starts this week

Image: DSE International
Down Syndrome Education International's 2015 program of free webinars on reading and language interventions begin this week (from 11th February UK time).The webinars are specifically designed for participants ...

"... to find out more about effective reading instruction for children with Down syndrome - a series of free webinars introducing our reading and language intervention designed for school aged children with Down syndrome, and helping teachers and teaching assistants put it into practice. These live online events are available at various times to suit participants around the world and are free of charge".

Monday, 9 February 2015

First Arts + Disability Expo: Carriageworks, September

Accessible Arts is proud to announce Australia's inaugural Arts + Disability Expo, to take place on the 18 and 19 September 2015 at Carriageworks, Sydney.
This new initiative from Accessible Arts follows on from their successful establishment of the biennial Arts Activated Conference, the fourth and most successful of which took place just recently, in October 2014.

The Expo has already obtained the Lifetime Care And Support Authority as its Key Partner, and now offers the opportunity for other organisations and groups within the arts and disability sector to directly connect with their market.
  • Free for the general public to attend in this first year
  • Unique opportunity to showcase products and services available in the arts and disability sector nationally
  • Features exhibitor stands, interactive demonstrations, gallery space, discussions and live performances
  • Reach target audiences and brand objectives through a range of sponsorship and exhibitor options.
More information will be available in the coming months at
View the Sponsorship and Expo Prospectus 
To discuss your involvement in the Expo, contact:
Gemma Collocott, Strategic Projects Manager at on  +61 2 9251 6499 ext.110
Paul Baylis, Development Manager at  on +61 2 9251 6499 ext.103

Concerns about representation of people with intellectual disability in new national alliance

Assistant Minister for Social Service, Senator Mitch Fifield's announcement of de-funding and non-funding for many community and national organisations (including Down Syndrome Australia) just before Christmas 2014 raised a good deal of criticism. Now, his announcement of funding for a selective Cross-Disability Alliance on Friday (6th February) has not met with universal approval either:

Media release, Australian Cross Disability Alliance, 6th February 2015
Five national, cross disability organisations welcome the funding provided by the Australian Government to form the Australian Cross Disability Alliance that will provide a voice for the 4.2 million Australians with disability. 
The members of the Australian Cross Disability Alliance are:
  • Children with Disability Australia (CDA)
  • First Peoples Disability Network Australia (FPDN)
  • National Ethnic Disability Alliance (NEDA)
  • People with Disability Australia (PWDA)
  • Women With Disabilities Australia (WWDA)
Commenting on the cross disability model, PWDA President Mr Craig Wallace said, “The Cross Disability Alliance provides a modern, coherent and more comprehensive national voice for people with disability. This means that people with any kind of disability can directly join, elect and hold accountable the peaks who represent them to Government. We are at a crossroad for disability rights and it is right for us to come together at this vital time. We commit to working hard to provide all Australians with a disability with the voice we deserve.” ... read the full media release from the Australian Cross Disability Alliance here

Responses from national organisations with concerns about representation of people with intellectual disabiliity:

Down Syndrome Australia is an active member of the Australian Federation of Disability Organisations (AFDO) and supports their call for the federal government to provide more funding to disability groups so they can offer specialist advocacy services on behalf of ALL Australians with disabilities.There is a real risk that Australians with sensory and/or intellectual disabilities will be left behind unless the federal government provides more funding.

Join us in spreading the word.

Join the campaign to Save our Peaks.

Read the statement from AFDO on behalf of a consortium of 10 disability organisations that are currently at risk:

Disability Australia consortium calls for unity among people with disability organisations
A statement from the Disability Australia consortium
Today (6th February 2015) the Assistant Minister for Social Services, Minister Fifield, issued a statement announcing funding for a cross disability alliance of five people with disability organisations, stating that the new alliance would represent ‘all people with disability’ and noting alignment with a social model of disability and the United Nations Convention on the Rights of People with Disabilities (UNCRPD). 
This statement is divisive and misleading. Whilst we welcome funding to the five organisations for people with disability, they do not represent our 200,000 constituents. The UNCRPD makes it clear that people with disability should freely choose their own representatives - it is not the role of any government to tell people with disability who should represent us. 
To you, our members, we will continue to represent your interest to the best of our ability. 
Our organisations know that people with disability relate to people who have had similar life experiences. We know that people who are blind best learn how to become empowered, confident and independent by being around people who have developed these skills. Many people who are Deaf like to be represented by organisations that understand Auslan and Deaf culture. 
There is an important role to be played by both population based organisations as well as people with disability organisations who provide specialist information, advocacy and peer support to people who are newly diagnosed with disability, people who acquire a disability and families. 
The divisive decision by the government to defund seven people with disability organisations and not grant funding to a further four people with disability organisations, including autism which is one of the fastest growing disabilities, announced before Christmas is an unprecedented attack on people with disability organisations in Australia. 
Our organisations, with over 200 years of combined experience, have been integral to the successful implementation of the National Disability Insurance Scheme, the development of the UNCRPD, captioning, accessible voting for people who are blind or vision impaired and the development of early intervention to support children with autism and Down syndrome. Without our organisations, these successes may not have come to pass. These successes have made fundamental differences to the lives of people with disability. 
We have and will continue to be representative and effective champions of and for people with disability and to be a resource to our members now and into the future. Our organisations will continue to drive change in the best interests of people with disability without fear or favour. 
To our constituents, we look forward to representing you, as the national independent voice of people with disability in Australia. 
Please direct all media enquiries to Mr Matthew Wright, Australian Federation of Disability Organisations (AFDO) on 0428 608 861. 

Our Voice Matters
Inclusion Australia, 6th February 2015
Inclusion Australia responds to DSS $1.5m cut to support and services for people with intellectual disability. 
Inclusion Australia (NCID) is the peak body for people with intellectual disability and their families. Inclusion Australia has represented people with intellectual disability for over 60 years with the support of thousands of people and organisations. 
In December last year the Department of Social Services decided that the specific voice of people with intellectual disability and their families is not important. Rather, they have decided that people with intellectual disability and their families can be represented by people without disabilities or by people who have a physical or sensory disability. The Board of Inclusion Australia deplores this decision as we believe it will deny people with intellectual disability and their families the opportunity to inform and shape the direction of disability policy and supports, including the National Disability Insurance Scheme ... read the full response here

Sample of media responses so far ...

Former commissioner says disability cuts breach UN convention
Julia May, The Age, 7th February 2015
The Federal Government's cuts to the disability sector are a "catastrophic" blow and breach the United Nations convention on the rights of disabled people, advocacy groups and one of the architects of the convention says ...

SBS News, 6th February 2015
People with disabilities will be represented in government policy-making by five advocacy groups, under new funding arrangements.

Dozens of community service groups, including 10 peak disability organisations, learnt just before Christmas they would no longer receive federal government contracts from June 30, 2015.

Assistant Social Services Minister Mitch Fifield on Friday announced a new cross-disability alliance had won a competitive tender for two years of funding to advise government on policy ...
... It was the sector's calls for reform that led to the government running the competitive process for the first time, he said.

However, those groups which missed out on funding are likely to be disappointed with the result.

Responses are also being provided on social media, especially on Twitter - search for 'cross disability alliance'.