Petition to end preventable deaths in NSW: last few days to sign

You can still sign this petition to help address the terrible and sometimes fatal discrimination experienced by people with disability in health and hospital settings, before this Friday when Christine and Erin will present our petition in person to the NSW Minister for Health, Brad Hazzard:

NSW Council for Intellectual Disability - petition to the NSW government

... NSW Council for Intellectual Disability is calling for proper investment in the health of people with intellectual disability so that we can end the terrible number of Australians with intellectual disability dying from preventable illness. 

We need the NSW State Government to commit $50 million per year for 10 years to put an end to the high numbers of preventable deaths for people with intellectual disability in NSW ...

• Previous post on recent research and commentary on preventable deaths of people with intellectual disability in NSW

Two opportunities to have a say

Disability Discrimination Commissioner National Consultations 2016-2017:

"Shaping our future: discussions on disability rights"

Disability Discrimination Commissioner, Alastair McEwin will be conducting a national consultation which will help guide the development of his priorities and seek input from the disability community on how he can most effectively work to advance the rights of people with a disability. These consultations aim to engage with the disability community and gather information and knowledge on the extent and nature of disability discrimination and the human rights of people with disability in Australia.

• Further information, video, and links to discussion papers and hearing dates and venues are on the Australian Human Rights Cmmission website, here. Consultations begin 21 October, in Adelaide.
• Consultations will be held in each capital city and some regional centres between October 2016 - March 2017. Further consultation details will be held will be updated on this page and via the Commissioner's Facebook page.

Feedback on voting at Federal election is invited
People with Disability Australia posted on Facebook on 10 October 2016:

Did you vote at the recent federal election? Could you not vote? We want to hear from you either way. 

The Australian Parliament's Joint Standing Committee on Electoral Matters is conducting an inquiry into the recent federal election. 

We would like to provide them with feedback on your experience. Please share with your networks. 

If you could fill out this survey then we can have a better idea of what worked and what didn't, we will let the government know what they need to improve and what they should continue to do.

The survey will be open for 2 weeks until Monday 24 October.

On identity and representation

32 Years of Challenge Gets You Cake and Stuffies

Dave Hingsburger, Of Battered Aspect, 1 September 2016
... It's an important story, but as often happens her story and the story of her employment has been co opted to tell a different story, a story not about her at all ... The celebration of 32 years of gainful employment of someone with an intellectual disability is a celebration of 32 years of breaking stereotypes, of challenging bias, of demonstrating competence in the face of expectations of failure ...

• Repost, in case you missed it last weekend's 'Reading and viewing' post

Believing in ourselves as disabled people

Social Skills for Autonomous People, 21 June 2016
As disabled people, it can be very hard to learn to believe in ourselves. We’re often taught not to.

We’re told over and over “believe in yourself, and you can do anything!” and that if we work hard, we can overcome disability. That sounds positive, but it actually teaches us that we’re not worth believing in as the people we really are.

In the name of believing in ourselves, we’re told to ignore key facts about ourselves. We’re taught that believing in ourselves means that if we ignore disability as hard as possible, it will go away and we’ll be ok. But ignoring reality doesn’t change it. No matter how we feel, no matter what we believe, our bodies exist and matter. Our limitations stay important ...

Screen Australia diversity report finds Australian TV still lacks colour
Karl Quinn, Sydney Morning Herald, 24 August 2016
A groundbreaking report into Australian TV drama finds that better quality doesn't necessarily equate to more diversity ...

The Dos and Don’ts of Writing About the Disabled
Nicola Griffith, Literary Hub, 23 August 2016
Recently I have read several articles about disabled people by non-disabled writers. The authors have clearly projected their own fears and prejudices onto the subject of their piece, and spoken for them from that place. If I could say one thing to those authors it would be this: Do not assume that empathy equals experience. You might think you know what it’s like, but you don’t ...

Ideas for the Next Generation of Disability Activists
Peter Gibilisco, Probono News, 25 August 2016
Meritocracy is a belief that seems to me to still be alive and well in the senior management of disability support. It also seems to drive many aspects of public policy, particularly when appeals are made to “equal opportunity” ...

What Disability Means
New York Times, 25 August 2016
Last week, The Times opened a series about disability, broadly considered, with an essay about disability, pride, and identity by Rosemarie Garland-Thomson. We asked readers to share their own stories in the comments and on Facebook ...

National news

New Assistant Minister for Disability Services announced Both People With Disability Australia and NSW Council for Intellectual Disability have Jane Prentice MP (Ryan, Qld) as Assistant Minister for Disability Services,  at this 'important time in disability reform', the re-shuffled Federal Cabinet announced at the weekend.
welcomed the appointment of

• Jane Prentice's 2013 parliamentary speech in support of the NDIS 

Sri Lankan girl with Down syndrome receives temporary visa to live in Australia after Peter Dutton intervenes
Caitlyn Gribbin, ABC News online, 12 February 2016

A Sri Lankan girl who made headlines after being refused a temporary visa because she has Down syndrome will be allowed to live in Australia, after Immigration Minister Peter Dutton intervened in her case. 

Eliza Fonseka, nine, also found an unexpected ally in former Australian cricket captain Greg Chappell, who advocated for her to be granted the visa ...

Down Syndrome Australia – Media Release, 12 February 2016

Ruth Webber, CEO Down Syndrome Australia

DSA Welcomes Minister Dutton’s Intervention, however people with disability organisations call for removal of exemptions to the Migration Act. 

Down Syndrome Australia joins with the Fonseka family in thanking the Minister for Immigration, Peter Dutton, for his intervention that will allow Eliza Fonseka to come to Australia with the rest of her family. 

Angelo Fonseka was granted a Religious Worker Visa by the Department of Immigration to work with the community of Shark Bay in Western Australia. His wife and one of his children were also granted visas to come to Australia. However, his daughter Eliza was not allowed to join them – because she has Down syndrome.

Discrimination in Qld court ruling criticised on appeal

Not all the news has been sweetness and light over the holidays. This news story was published in Queensland over the weekend, and has, as you might expect, been much commented upon.  Down Syndrome Australia commented (on Facebook, 3 January 2016) ...

It would be easy to blame the judiciary for this appalling discriminatory action, but these attitudes still do and will continue to permeate much of our society as long as we allow anything less than fully inclusive life opportunities for people with Down syndrome. 

Happily, the judge's decision was struck down on appeal. if only attitudes and beliefs could be so easily changed.

Down syndrome man’s case upheld on appeal after ‘shocking’ slight by judgeKay Dibben, The Courier-Mail, 2 January 2016

A District Court judge has been criticised for deciding a man with Down syndrome did not need a share of his father’s estate because he could not go to the pub, races or the movies ...

Discrimination in health care: 'do not resuscitate'

Instances of blatant and more casual discrimination against people with Down syndrome come to light every week, alongside reports of progress towards more inclusive communities. This one from the UK is worth noting because it probably happens much more often than is reported, and families need to be alert to the possibility at a time when a person with Down syndrome (or any disability) is particularly vulnerable:

Hospital sorry for 'do not resuscitate' order on patient with Down's Syndrome

Jane Dreaper, BBC News, 8th December 2015

A (UK) hospital trust has apologised for placing a "do not resuscitate" (DNR) order on a patient with Down's Syndrome - and listing his learning difficulties among the reasons for doing so ...

Down's Syndrome Association (UK) comment:

We are very disappointed to hear that Down’s syndrome has been listed as a reason for putting a “do not resuscitate” (DNR) order on the medical file of a vulnerable patient at the Queen Elizabeth the Queen Mother Hospital in Margate, Kent. We had thought that this sort of discriminatory behaviour was a thing of the past. We hope that the media focus on this high profile case will ensure that there will be no further incidents of this nature ... Down's Syndrome Association (UK), on Facebook, 8th December 2015

Australian Parliament celebrates World Down Syndrome Day one day and Government denies child with Down syndrome a visa the next ...

Statement from Down Syndrome Australia, 23rd March 2015:

On Thursday 19th March parliamentarians from all sides came together in our national parliament to celebrate World Down Syndrome Day. In a parliamentary first, the Senate passed a motion congratulating members of the Australian Down syndrome community.

It was therefore particularly disappointing that on the weekend when our community was celebrating the lives and achievements of people with Down syndrome that we learnt that the Immigration Department has denied a visa to Eliza Foneska.

“Many members of the Down syndrome and wider Australian community have let Down Syndrome Australia know how terribly disappointed they are at this latest decision.”

“At a time when we should be coming together to celebrate our shared achievements and inclusion, to have a decision like this made by the Immigration Department is terribly disappointing.”
“Australia rightly prides itself on being a free and open country, so to have a decision taken by a Government Department that essentially says the two parents are welcome to come to Australia but they must leave their young daughter behind sends a very cruel message to the rest of the world.”

Down Syndrome Australia will continue to push for changes to the Migration Act, so that it is no longer exempt from the Disability Discrimination Act. To exempt the decisions of the Immigration Department from the Disability Discrimination Act adds to the “low expectation environment” that people with disabilities live with within the Australian legal and legislative system.

“In addition to supporting and advocating for the Foneska family in whatever way we can, Down Syndrome Australia will continue to work towards removing this discrimination against people with Down syndrome.”

Further information/comment:
Ruth Webber
CEO Down Syndrome Australia
Ph: 0409 115 859

• National Ethnic Disability Alliance statement in support of Down Syndrome Australia, 24th March 2015

• Sri Lankan girl, Eliza Foneska, refused visa because she has Down syndrome, says family ABC News online, 21st March 2015


• Enabling Australia - report of the Inquiry into migration treatment of disability, Joint Standing Committee on Migration, 2010

• Earlier posts on this blog on immigration discrimination

National Disability Forum - online survey

As part of the Australian Human Rights Commission’s ongoing commitment to the protection and promotion of the rights of people with disabilities, Acting Disability Discrimination Commissioner the Hon. Susan Ryan AO is holding a National Disability Forum on 15 September 2014. Participation in the forum will be by invitation. 

 As part of our consultation process we are conducting an online survey, and we welcome responses from the public as outlined below. Further information about the availability of live streaming of the forum will be available in due course.

• More information  about the survey from the AHRC's website
• To participate in the survey, click here 
If you have any queries about the forum or have difficulty accessing the survey please email: disabilityforum2014@humanrights.gov.au

Related: Acting Disability Discrimination Commissioner Announces Forum

The heartbreak of low expectations

Down Syndrome Australia (DSA) was greatly saddened to read the story of baby Gammy in today’s Fairfax media: Australian couple leaves Down syndrome baby with Thai surrogate.

“Our primary concern is for the wellbeing of this little boy and his family. In Australia we are fortunate that the additional health conditions often associated with Down syndrome are routinely managed through our healthcare system – something which is clearly not accessible from a village in Thailand,” said Down Syndrome Australia CEO Catherine McAlpine.

“We very much hope that the pro-bono reach of Australian hospitals and their partner charitable organisations will be available to assist in this heartbreaking situation. We are currently examining ways we can work with them to do so.

“In Australia life outcomes have never been better for people with Down syndrome and their families. Advcances in health care, early intervention and education have made a tremendous difference to the lives of people with Down syndrome.

“There remain however many barriers to ensuring people with Down syndrome have the opportunity to reach their full potential. Low expectations and lack of understanding mean that Australian children with Down syndrome still have trouble accessing mainstream education and adults with Down syndrome struggle to obtain jobs.

“For many people with Down syndrome the biggest challenge they face is the stereotyping and discrimination that follow from these negative attitudes and low expectations.

“Everyone in the Down syndrome community is heartbroken to see those attitudes played out with such devastating consequences for baby Gammy and his family.

“We will look at ways we can partner with other organisations to help this little boy and his family.

“It is a sad reminder to us of just how far we have to go to in changing attitudes to ensure people with Down syndrome can enjoy the same rights and opportunities as everyone else in the community. We have made great progress in recent times but there is still so much to do.”

Down Syndrome NSW response to media reports (1st August, 2014:

Executive Director of Down Syndrome NSW, Tracylee Arestides, has formulated the following brief response to media reports regarding baby Gammy. 

DS NSW is greatly saddened that baby Gammy's biological parents may have made the decision to abandon him based on the fact he has Down syndrome. 

We are looking at ways to help Gammy access the necessary health care he needs. 

We would also encourage people to support Gammy's Thai birth mother Pattharamon Janbuaand and her family who are caring for Gammy and bringing him up. 

We have had advice from Thailand that the GoFundraise campaign to support Gammy's surgery and his family is legitimate, however we are not in a position to make the decision for people to support Gammy in this way. We encourage our members to make their own enquiries and decisions.