Prenatal Diagnosis of Down Syndrome: Delivering Results in our New Age of Genetic Testing

A webinar version of a presentation by Dr Brian Skotko, Co-director, Down Syndrome Program, Massachusetts General Hospital, 16 December 2016 (62m 17s)

In this presentation, Dr. Brian Skotko reviews the latest advances in prenatal testing for Down syndrome. He further reviews the evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics, American Journal of Obstetrics and Gynecology, and American Journal of Medical Genetics.

• Brian Skotko's You Tube channel and website

Dr Skotko's approach is congruent with the DSi position statement:

Down Syndrome International: Position Statement on Prenatal Testing

... DSi asserts and defends the right of a woman (or a couple) to information about the human rights and potentialities of children with Down syndrome. 

DSi encourages a balanced and informed approach to the use of prenatal tests by government policies, the professionals involved and all family members. 

DSi contends that voluntary screening should be available to all pregnant women on request and the decision to undergo testing has to be made by the pregnant woman (or couple). 

BUT, that at the time of testing, easily understood information MUST be provided that is up-to-date ...

... This information MUST be provided in an unbiased way by well trained professionals who understand their ethical responsibilities as well as having good communications skills and up-to-date information. At the same time, potential parents should be directed to further sources of information ... read the whole statement here.

News and commentary from the broader disability community

Disabling Ableism (podcast 19m 04s)
Anne Kavanagh, Pursuit, 15 March 2017
Professor Anne Kavanagh from the Melbourne School of Population and Global Health shares how changes in her own life led her to question our understanding of the health of those living with a disability. A proud activist, Professor Kavanagh says having a disability need not equal poor health ...

• Print version

The fidget spinning fad and disability discrimination

Ingrid Robeyns, Crooked Timber, 21 May 2017

... So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals ...

New short documentary shines a light on adults with intellectual disabilities
Social Work News, McMaster University (Canada), 11 May 2017
A new short documentary film – part of a research project led by the McMaster School of Social Work's Ann Fudge Schormans – is providing a unique glimpse into the lives of adults with intellectual disabilities living in Toronto.

What if you didn’t feel welcome in the city you live in? What if you didn’t feel comfortable, or even safe, going into stores or taking transit? What if, wherever you went, you felt like people were staring at you? For many of us, that kind of alienation is hard to imagine, but for many people with intellectual disabilities, it’s a part of everyday life ...

Down Syndrome Australia welcomes Labor’s Support for a Royal Commission into institutional abuse of people with a disability

Down Syndrome Australia

26 May 2017

Down Syndrome Australia welcomes the Labor Party’s announcement today that they will support a Royal Commission into institutional abuse of people with a disability. 

Down Syndrome Australia, along with many other organisations in the sector has long supported the establishment of a Royal Commission. A Royal Commission would provide a comprehensive, independent review into long standing issues of abuse and will enable people with a disability to tell their stories and will provide justice for victims. It would also make important recommendations on reform, policy, and practices to address issues of abuse. 

This decision by the Labor Party follows a 2015 Senate Inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings that found that abuse against people with a disability was ‘epidemic’’ and recommended a Royal Commission. Recent media reports have provided further evidence of the problems which are occurring in some residential settings. 

Down Syndrome Australia CEO Dr Ellen Skladzien said, “We are pleased that the Labor party has committed to supporting a Royal Commission. We renew our call for the Government to initiate a Royal Commission into violence against people with a disability. For too long violence and abuse against people with a disability has been overlooked.”

• Action on Abuse of People with Disability, Australian Federation of Disabiiity Organisations, 26 May 2017

Labor Party statement to advocates for a Royal Commission into violence and abuse against people with disability

Hon Bill Shorten MP, Leader of the Opposition, Senator Carol Brown, Shadow Minister for Disability and Carers, Hon Jenny Macklin MP. Shadow Minister for Families and Social Services, 26 May 2017

Today we announced that a Labor Government will establish a Royal Commission into violence and abuse against people with disability.

We have listened to people with disability and their families who have clearly stated that they want to see a Royal Commission into these reports of abuse.

Opposition response to calls for Royal Commission

In response to continued lobbying from the disability community:

Federal Labor calls for royal commission into institutional abuse of people with a disability

Alexandra Beech, ABC News, 26 May 2017
Federal Labor is calling for a royal commission into the abuse of people with a disability. 

It comes after a Senate inquiry recommended establishing a royal commission into the disability sector in November 2015. 

The co-chief executive of People With Disability Australia, Matthew Bowden, has welcomed Labor's announcement, saying violence against people with a disability was at "epidemic levels" ...

Labor pledges royal commission on abuse of people with disabilities

Amy Remeikis, Sydney Morning Herald, 26 May 2017

... Opposition Leader Bill Shorten said Labor would lobby the Turnbull government to establish a commission on violence and neglect in the disability services sector, and make it a priority if elected.

A joint Senate committee, set up in 2015 in response to growing concerns and media coverage of failures and abuse within the system, recommended a royal commission be established to help bring about change ...

Call for Royal Commission into abuse of people with disability

Inclusion Australia, 26 May 2017 (Endorsed by NSW Council for Intellectual Disability)

“As a woman with an intellectual disability, I can say that abuse from people who were supposed to be caring for me has had a very bad long term impact on my life”, says Heather Forsyth.

Ms Forsyth is Inclusion Australia’s Our Voice Chairperson and knows first-hand the devastating impact abuse and violence against people with disability has on lives.

Inclusion Australia and its member organisations are supporting the call for a Royal Commission into the abuse of people with disability. And pressure is mounting for the Government to step up and do the same, with Opposition Leader Bill Shorten and Shadow Minister for Families and Social Services Jenny Macklin, today also calling for a Royal Commission into the abuse of people with disability.

Support for the call for a Royal Commission into violence and abuse against people with disabilities

Down Syndrome Australia

22 May 2017

The call for a Royal Commission into violence and abuse against people with disabilities is growing. 

Down Syndrome Australia, along with many other organisations has long supported the establishment of a Royal Commission. 

The Federal Government says NDIS Safeguards will prevent violence and abuse. The safeguards are crucial but they will not safeguard all people in all situations. 

We welcome the latest actions including last week's open letter to the government by over 100 prominent Australian academics, and this statement by Disabled Peoples Organisations Australia.

You may have already signed the petition following the Four Corners program back in March, but please also give your support by adding your name to the DPOA statement.

Blind academic calls for Royal Commission into abuse of people with disabilities UQ News, 23 May 2017

A legally blind academic from The University of Queensland has thrown his full support behind a petition demanding Prime Minister Malcolm Turnbull launch an immediate Royal Commission into the abuse of disabled people ...

Down Syndrome Australia welcomes the Disability Support Pension Review Recommendations

Down Syndrome Australia

11 May 2017

Down Syndrome Australia welcomes the final report of the Joint Committee of Public Accounts and Audit Inquiry into Qualifying for the Disability Support Pension which has been tabled today in the House of Representatives.

In recent years, people with Down syndrome have been subjected to unnecessary, time consuming and stressful medical reviews to prove that they continue to be eligible for the DSP. Down Syndrome Australia has been strongly advocating for a change to the review process for the Disability Support Pension.

In the report tabled today, the Joint Committee of Public Accounts and Audit has recommended 

“the Department of Social Services review the List 1 of conditions that provide eligibility for manifest grants of the Disability Support Pension. The Committee recommends particular attention is given to the merits of including chromosomal disorders, such as Down syndrome, on List 1.”

Down Syndrome Australia CEO, Ellen Skladzien said “We are very pleased that the Committee has listened and responded to the concerns we raised in our submission. These unnecessary reviews not only put needless burden on families but also are an inefficient approach and a waste of limited resources. The inquiry has clearly revealed the need for a more targeted approach to reviews and ensuring that appropriate safeguards are put in place to avoid unnecessary burdens on people with a disability and their families.”

Down Syndrome Australia also welcomes the recommendation for the Department of Human Services and the Department of Social Services to conduct an end-to-end review of the administration of the Disability Support Program, including consultation with stakeholders as well as a recommendation to provide people with more time to provide medical evidence to the Department.

• Final report of the Joint Committee of Public Accounts and Audit Inquiry into Qualifying for the Disability Support Pension
• Joint Committee's media release, 10 May 2017

DSA Director finalist for Western Australian of Year

Down Syndrome Australia News

1 May 2017

Congratulations to our DSA Board Member Catia Malaquias for being a finalist in the Western Australian of the Year awards. Catia is a long standing advocate for inclusive education and representation of people with a disability in the media and advertising.

Catia has made an important contribution to the representation of people with disability in mainstream advertising through her organisation Starting with Julius. She has worked with large Australian retail giants including Target and Kmart to ensure that their advertising is representative of Australians including Australians with a disability. She has also worked tirelessly to achieve recognition of the evidence-based benefits in student outcomes of students with disabilities being educated together with their same-age peers including through her work as co-founder of the School Inclusion Parent Network (SIPN).

We are very fortunate to have Catia as a board member and congratulate her on this honour.

Image description: Photo of Catia and son, Julius,
Playing with dinosaurs, taken at Target Australia
photoshoot.

What your local MP can do now about Deadly Disability Discrimination

The Advocacy Team at NSW Council for Intellectual Disability is calling for community follow up action to last month's Parliamentary Forum on the Deadly Cost of Disability Discrimination in the NSW health service for people with intellectual disability:

Michael Sullivan (Chair NSW CID), Fiona McKenzie
(Vice Chair NSW CID) and NSW Minister for Disability
Services, Hon Ray Williams

We thank both the Minister for Disability Services, Hon Ray Williams, and the Shadow Minister for Disability Services, Hon Sophie Cotsis, for both speaking at the Forum.

We have told all NSW MPs:

• Almost 40% of people with intellectual disability are dying from preventable deaths in NSW
• People with intellectual disability are dying on average 27 years younger than the general population
• Ignorance, inadequate training and discrimination within our health services are key reasons this is happening

Now we have an urgent request for our MPs: 

The NSW Government’s Ageing, Disability and Home Care (ADHC) agency runs specialist health care services. These services help people with intellectual disability get the specialist health services they need. However instead of maintaining and expanding these services, the NSW Government is slowly closing them down.

Next year ADHC itself will close down and the money ADHC uses to fund these services will go to the NDIS.

We believe NSW Health should take responsibility for funding these services from next year, but so far Health Minister Brad Hazzard has been silent on this issue. The health outcomes are already bad for many people with intellectual disability. Closing down these services will make them worse. We need a commitment from all MPs that they will strongly advocate for NSW Health to maintain and expand these ADHC specialist health services.

Please help us keep up the pressure and take the following actions: 

• Phone, email and arrange to meet your local MP, tell them about the unacceptable high number of preventable deaths for people with intellectual disability, and ask them to support the maintenance and expansion of these important ADHC specialist health services.

• Phone and email the Minister for Health Hon Brad Hazzard and the Shadow Minister for Health Hon Walt Secord and ask for their commitment to the ongoing funding of the maintenance and expansion of these ADHC specialist health services.

You can find a guide to emailing and phoning MPs and all their contact details in this blog about the parliamentary forum. 

If you need help in preparing for your meeting with your local MP we can run a workshop for you and your family, friends and colleagues either face to face or remotely. Contact us at advocacy@nswcid.org.au

We will have the videos from the Parliamentary Forum available to view shortly. In the meantime we ask you to contact your local MPs and help us end Deadly Disability Discrimination.

Down Syndrome Australia raises concerns over use of R-word by AFL player

24 April 2017

Down Syndrome Australia was extremely disappointed to learn that footballer Heath Shaw used the term ‘retard’ at a football match over the weekend in reference to another player. The use of this word is extremely offensive to people with an intellectual disability and there is no excuse for its use. It is a hurtful term which has a long history of being used to bully and demean people with an intellectual disability.

Down Syndrome Australia recognises that Heath Shaw quickly apologised and acknowledged that the use of this term was inappropriate. At the same time, it is important to understand how damaging the use of such a term by a high-profile athlete is to community attitudes.

“Despite progress in understanding of disabilities, people with an intellectual disability face social isolation and lack of community understanding. In a recent survey of more than 800 families of people with Down syndrome, nearly a third indicated that they had experienced stigma and discrimination in the community. The casual use of the deeply offensive R-word by high profile Australians reinforces stigma and negative attitudes and has a significant impact on how the community views people with a disability”, said CEO Down Syndrome Australia Dr Ellen Skladzien.

Down Syndrome Australia will be writing to the Australian Football League to call for further education of AFL players on issues around disability and appropriate use of language.

It should be noted that the AFL has been proactive in disability awareness. They have supported the Fiona McBurney Match Day Experience which enables people with Down syndrome to participate as part of the match-day umpire team. This program provides a unique opportunity for people with Down syndrome as well as raising community awareness and understanding about Down syndrome.

Down Syndrome Australia looks forward to working with the AFL to build a better understanding of disability within the AFL players and ensure that the use of this inappropriate word is not repeated.

News and commentary from and about the broader disability community

New research shows role-playing disability promotes distress, discomfort and disinterest
Hiram College, Science Daily, 12 April 2017
Disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, new research concludes ...

The Ongoing Negotiations of Living Life With a Disability
Rachel Kolb, Pacific Standard, 18 April 2017
The line of thinking often goes like this: Disability is expensive. People with disabilities are in the minority, so costs could be better spent on projects that benefit more people. What’s more, retrofitting spaces and processes for accessibility is a hassle. Whenever accessibility provisions are granted, the person with the disability ought to be profoundly grateful others took the trouble to make it happen. And, anyway, if you’re requesting accessibility services, do you really need them? Couldn’t you just do without?

My Journey with Disability Language and Identity

Andrew Pulrang, Rooted in Rights, 10 April 2017

... The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it ...

We are failing our most vulnerable even in their own homes

Colleen Pearce, Brisbane Times, 4 April 2017
Just one day after the ABC aired last week's Four Corners investigation into taxpayer-funded group homes for the disabled, my office had a call about an extremely troubling case of violence in a home for people with disabilities in Victoria ...

Priorities for action: Human Rights Commission

Shaping our future: discussion on disability rights
Human Rights Commission, 6 April 2017

Between October 2016 and March 2017 Disability Discrimination Commissioner, Alastair McEwin conducted a national consultation to help guide 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 ... The Disability Discrimination Commissioner has identified the following priorities for his term:

• Employment
• Education
• Housing
• The criminal justice system
• Implementation of the National Disability Insurance Scheme (NDIS)
• Violence

A series of text transcripts, videos and infographics summarising what the Disability Discrimination Commissioner heard during his national consultations about each of these priorities is now available on the Human Rights Commission's website. A more detailed roadmap outlining actions for the Disability Discrimination Commissioner's term will be released later this year.

'Voices from a silent journey': International Journal for Direct Support Professionals

Voices from a silent journey
Melodie Cook, International Journal for Direct Support Professionals, Vol 6, #4, April 2017

... People with intellectual disabilities are often socially withdrawn whether they communicate verbally or not. This has nothing to do with their ability to contribute but has lots to do with our social world which tends to value verbal communication which is fast paced ...

This free Canadian journal is also available in French, and all back issues are available online here. Each issue deals with a single topic.

The Australian Federation of Disability Organisations joins calls for Royal Commission into abuse of people with disability

Following last night's harrowing episode of Four Corners, with its expose of abuse of people in care, Down Syndrome Australia once again reiterates its strong support for a Royal Commission into the abuse of people with disabilities.

• The 4 Corners episode Fighting the System is available on ABC iView until 26 April 2017

• Royal Commission Now petition

AFDO media release 28 March 2017:

The Australian Federation of Disability Organisations (AFDO) today joined calls from across the disability sector for a Royal Commission into the violence, abuse and neglect experienced by Australians with disability.

Last night’s Four Corners investigative report exposed harrowing tales of the abuse and assault of people with disability living in specialist disability accommodation. The episode highlighted not only individual cases of violence and assault but also the woefully inadequate system responses when incidents came to light.

The Chief Executive Officer of AFDO, Mr Ross Joyce, said that while last night’s stories were heartbreaking, they were sadly not shocking for anyone familiar with the disability system.

Disability Groups Call For Royal Commission Into Violence Against People With Disability

• The 4 Corners episode Fighting the System is available on ABC iView until 26 April 2017

• Royal Commission Now petition

Disabled People's Organisations Australia, 27 March 2017

Tonight’s ABC Four Corners report, ‘Fighting the System’ exposed more evidence of the appalling levels of violence and abuse against people with disability in Australia. This is only the tip of the iceberg. In light of the graphic and disturbing cases revealed this evening, Disabled People’s Organisations Australia (DPO Australia), calls on the Federal Government to reconsider its recent refusal to conduct a Royal Commission into violence and abuse of people with disability.

“Tonight, more evidence has come to light that supports the case for a Royal Commission. It is only a Royal Commission that has the weight, the investigative powers, the time and resources to open the doors to the many ‘closed’ institutions and residential environments, and expose Australia’s shameful secret,” said Therese Sands, Director, DPO Australia.

“People with disability are routinely denied access to justice, both at a civil and criminal level because of law, policy and practice barriers. A Royal Commission would give space and recognition to people with disability to tell their story, to be believed, and would enable some measure of accountability and justice,” said Ms Sands.

The 2015 Senate Committee Inquiry into violence and abuse against people with disability in institutional and residential settings found that violence and abuse was prolific and hidden. The central recommendation of the committee was the establishment of a Royal Commission.

The Federal Government ruled out a Royal Commission in its response to the Senate Inquiry earlier this month. The Government noted that it was addressing violence and abuse against people with disability by establishing the Quality and Safeguarding Framework for the National Disability Insurance Scheme (NDIS).

NSW parliamentary forum on health discrimination

Call to action from NSW Council for Intellectual Disability:

 Help us strike while the iron is hot to keep disability health in the political spotlight. 

Thanks to your support we have been able to organise a Parliamentary Forum, which will focus on the very high rates of preventable deaths for people with intellectual disability. The forum will be held on Friday 31 March at 12 noon in Parliament House.

The Minister for Disability Services, Hon Raymond Williams will address the forum, as will the Shadow Ministers for Health and Disability.

Your local MP has received an invitation, but we need your voice to ensure they attend the event. The more politicians we have there, the more pressure there will be on the government to act. 

The event is little more than a week away, so we need you to phone or email them right now, to lock it into their calendar. 

• Guide to how you can contact your MP 

NSW disability sector news

You don’t know what you’ve got till it’s gone…

NSW Council on Intellectual Disability, 6 March 2017

Did you know the NSW Government has no plans to fund state based advocacy services beyond the middle of 2018?

This includes services like IDRS, Disability Advocacy NSW and NSW CID.

An article published in the Sydney Morning Herald yesterday, has highlighted the risks people with intellectual disability will be faced with once advocacy services are no longer available ...

• NSW support services facing funding cut in NDIS transition, Kelsey Munro, Sydney Morning Herald, 5 March 2017

Benevolent Society to Take Over NSW Govt Disability Support Services
Lina Caneva, Probono Australia News, 2 March 2017
Australia’s oldest charity, The Benevolent Society, has been chosen to operate the NSW government’s specialist disability support services – described as Australia’s largest provider of clinical services for people with disability.

The major win for the charity will see the organisation double its workforce and operations.

The NSW Minister for Disability Services Ray Williams made the announcement of the new provider for disability clinical services (which are currently part of the NSW Department of Family and Community Services) on Thursday ...

... Clinical services comprises staff who are case managers, psychologists, behaviour support practitioners, speech pathologists, occupational therapists and physiotherapists working in multidisciplinary teams ...

Clickability

Clickability is an Australian disability service directory that features ratings and reviews from the people who actually use the services.It's expansion into NSW was announced on 1 March 2017.

The website includes a blog that aims to 'to encourage discussion and debate about important disability-related issues within the community.'

News and commentary from the broader disability community

The Boy In The Tunnel: Support

Dave Hingsburger, Of Battered Aspect, 26 February 2017
... the fellow who was supporting the young man was a highly skilled and clearly compassionate guy. There were several things that he did that were of note:

He wasn't even slightly embarrassed by the situation. I don't know what he was feeling inside but to all the world and for all the world he just calmly did what needed to be done to keep the young man safe ...

• Part 2 of this story: The remark
• Part 3 of this story: First confrontation

White football player accused of raping black teenager with a mental disability spared prisonCharlotte England, The Independent, 26 February 2017
Family of victim claim brutal assault followed months of racist abuse, but state prosecutor said attack was 'not racially motivated and did not constitute a sex crime' ...

He Is Smiling

Dave Hingsburger, Of Battered Aspect, 21 February 2017

... Isn't is responsible for the media to inform the public? Isn't it responsible of the courts to understand crimes against people with disabilities in the context of disability? I think both have failed Brendan and the community of others with learning difficulties (intellectual disabilities) and their families and support workers. We need to know about these crimes. We need to know how the perpetrators got to him, how they manipulated him and then the level of violence they sunk to in attacking him. We need to know these things, not to scare us, not to have us hiding in our homes, but to prepare us ...

Why we need to teach disability history in schoolsMatt Stafford, Blasting News, 20 February 2017
If students are lucky, they'll learn about a little Disability History during Disability Awareness Week in late October. Even then, it's mostly the same few figures like Thomas Edison. At absolute best, they might have a learn a few bits and pieces about the Americans with Disabilities Act during the portion near the end of the year that covers the late 80's and early 90's. That's if they're lucky. Many schools don't bother teaching it. This is a problem for several reasons. For starters, an entire population doesn't know their history. They barely know that until incredibly recently, kids like them weren't allowed in public schools in any state ...

Say the Word: Disability

Meriah Nicholls, Black Hills Parent, 17 February 2017
... I think that we—as a society—seem to dislike the word “disability,” walking on eggshells when interacting with people with disabilities. We just don’t dig it.

Since there’s not a better English word to use instead, people within the disabled community have gone about reclaiming the word “disabled.” We also have attempted to place disability within a social model ...

I’m Not Going To Be Nice About Ableism

Alex Lu, The Establishment, 14 February 2017

... If your goal is to get people to see our humanity, why is it wrong for us to act human?

Because I am human, I’ll get angry and frustrated if you say things that are hurtful to me. Because I am human, I’ll get tired and struggle in the face of persistent barriers. Because I am human, I’ll have needs and take up space. I trust that the people in my life will see these truths as well and adjust their attitudes to make room for me. I am lucky enough that for the most part, they do. As for those who do not, who hold me to a standard they would never hold themselves to — we are not operating from the same basic premise in the first place. No number of words from me can change that ...

An Open Letter to Those Who Love Me, But Do Not See Me

Karin Hitselberger, Claiming Crip, 31 January 2017
Please understand that even now we are not equal. I still have to fight for my right to exist. Every day of my life I have to prove that I am worthy to have the life that I do. The things I fight for are not abstract, nor are they idealistic. Recognize that, for me, there is no Plan B, because I don’t have the same access to housing, employment, or other opportunities that you do. I’m asking you to realize that political decisions are not abstract, that these decisions have real impacts even fatal ones. Most of all, I’m asking you to understand that I go to bed every night terrified that tomorrow I won’t have access to the basic things you take for granted ...

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

Preventable deaths of people with intellectual disability in Australia: research, media, petition to government

People with intellectual disabilities twice as likely to suffer preventable death, study finds

Elise Worthington, ABC News, 8 February 2017

... Research released in the medical journal BMJ Open on Wednesday reveals a disturbing pattern of unnecessary deaths in the Australian health system. 

Researchers at UNSW found people with an intellectual disability are twice as likely to suffer a potentially avoidable death compared to the general population. 

"We found that one in three deaths in people with an intellectual disability was from a potentially avoidable cause," psychiatrist and lead author Julian Trollor told 7.30 ...

• 7.30,  ABC TV, 8 February 2017 (8m 42s video, transcript)

Why people with intellectual disabilities are dying avoidable deaths

Kate Aubusson, Sydney Morning Herald, 8 February 2017

Professor Julian Trollor first noticed something was amiss when he was trawling through death certificate data for people with intellectual disabilities. Over and over again the underlying cause of death was listed as the disability itself, regardless of whether the patient had died of an infection, cancer or a heart attack.

"I thought, this just doesn't seem right," Professor Trollor said. A person with down syndrome who died of respiratory failure caused by pneumonia would likely have their underlying cause of death coded as down syndrome in population records. 

"Down syndrome itself doesn't cause the death. Anyone else in that scenario would have their underlying cause of death coded as pneumonia ...

The needless deaths of people with intellectual disability must be urgently addressed

Professor John McMillan and Steve Kinmond, ABC News, 9 February 2017

... we recognise that the experience of people with intellectual disability in NSW is not unique.

We are keen to see a national effort to close the gap in the disparity in health outcomes between people with intellectual disability and the general population. The National Disability Strategy — and strong governance arrangements for the implementation of the strategy in states and territories — provides a useful mechanism.
It is simply unacceptable that people with intellectual disability in our community are dying from preventable causes at over twice the rate as other Australians. We must close this gap.

• Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.

Research report - the full text of the report is available online, without charge:

... Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID.

Cause of death and potentially avoidable deaths in Australian 
adults with intellectual disability using retrospective linked data 
Julian Trollor, Preeyaporn Srasuebkul, Han Xu, Sophie Howlett 

BMJ Open, 7 February 2017 

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 ...

Carly Findlay on inspiration and objectification.

Melbourne writer and activist, Carly Findlay has invited readers to share her recent post, written in response to a request for a resource for teachers and parents, from a parent. We are happy to oblige - it is thoughtful, substantial, well researched and illustrated, founded in Carly's personal experience, as well as others'. One of the references is to the Indiana campaign included in our weekend post.

The Down syndrome community is replete with references to inspiration and with objectification - we need to consider this phenomenon/behaviour seriously, take on board what people with disabilities have to say, and alert our schools and communities to it.

Sue asked me if I knew of any resources for parents and teachers that teaches young people about the impact of inspiration and objectification on people with disability. She and a friend wanted to see something written from the perspective of a disabled person, that was "informy, rather than blamey". She wanted it to be in palatable language for a broad audience ...  

... When I've previously mentioned inspiration as objectification of people with disability, using the term Stella Young coined, some people have felt uncomfortable. They don't like the term, so deny it exists or don't want to look into the issue further. This happened a lot during the #crippingthemighty discussions While I never want to censor myself, sometimes I realise the need to soften language to make serious issues more palatable, to reach an audience that needs to hear it. There is definitely a need for this post ...

Inspiration and objectification of people with disability

 - a resource for teachers and parents

Carly Findlay, 5 February 2017