Weekend reading and viewing: 31st May - 1st June 2014

"It's so sad when people have special needs": Thoughts on Inclusion from the Bus Stop

David Perry, How Did We Get Into This Mess? 27th May 2014

"It's so sad when people have special needs." A caring, sweet, 4th-grader said this to me at the bus stop a few minutes ago ... I said, "I don't think having special needs is sad. I think it can be sad when people with special needs don't get the help they need, and even worse when they don't have a good community of friends and family around them." ...

For Hire: Dedicated Young Man with Down Syndrome

Michael Bérubé, Aljezeera America, 25th May 2014

... The first time I talked to Jamie about getting a job, he was only 13. But I thought it was a good idea to prepare him, gradually, for the world that would await him after he left school. My wife, Janet, and I had long been warned about that world: By professionals it was usually called "transitioning from high school." By parents it was usually called "falling off the cliff." ...

When He Grows Up

Mardra Sikora, Lessons More Special Than The Needs, 23rd May 2014

... “WHAT ARE YOU GOING TO DO WHEN HE GROWS UP?”

That’s the question posed to you for the last twenty years. And although you’ve given one answer or another, time after time, it still feels as if this moment has snuck up on you.

What to do next if your baby has Down syndrome
Sipping Lemonade, 23rd May 2014
... To the new mom holding her sweet child with Down syndrome in her arms, frightfully asking, “What should I do next?” — my answer would be: Enjoy ...

5 Anger Management Methods For Individuals With Special Needs

Karen Wang, Friendship Circle, 21st May 2014

... Prevention of anger-driven episodes is easier than active intervention. Although there is little research available on anger management for individuals with special needs, I found several applicable methods for both prevention and active anger management ...

Disability and a good life - what does it take?
Says Who? Panel, UNSW TV, 30th April 2014
The advent of a new national support system for Australians with disability raises broader questions about what a good life for people with a disability should be. How do we take account of disability in all its diversity in this new era? And what are some of the key challenges we face in forging this new, more inclusive Australia? Featuring an expert panel of leaders in disability advocacy, research, policy and practice ...

News from NSW Ageing, Disability and Home Care

NSW Government introduces Disability Inclusion Bill

Media Release, John Ajaka, (NSW) Minister for Ageing and Minister for Disability Services, 28 May 2014
Minister for Disability Services John Ajaka today introduced the landmark Disability Inclusion Bill 2014 into the Legislative Council, which will improve the lives of people with disability, their families and carers.

The main purpose of the Bill is to enhance protections and enshrine the rights of people with disability into NSW law during implementation and following full transition to the National Disability Insurance Scheme (NDIS).

“The NSW Liberals & Nationals Government is transforming disability services in NSW and the Disability Inclusion Bill is a cornerstone of that,” Mr Ajaka said.

“People with disability are now shaping disability services, rather than being passive recipients of services from governments and other providers.

“The development of the Bill was shaped by feedback that was received during an extensive consultation process in the past few years which involved thousands of people across NSW.

“The feedback indicated a strong need for change and I thank those who took the time to share their opinions, thoughts, hopes, suggestions, stories and concerns.

“We have listened carefully to the legitimate concerns and expectations of individuals and organisations and, as a result, have delivered a Bill that is both responsive and supportive.

“The public told us they wanted the new disability law to promote human rights, give people with disability greater choice and control over their lives, clarify the role of the NSW government before and after the introduction of the NDIS, provide safeguards to protect the rights of people with disability and help make communities more inclusive.

“I am extremely proud of this Bill – it represents the NSW Government’s commitment to support and protect people with disability so they can live their lives free from abuse, neglect and exploitation.”

The Bill establishes a strong, outcomes-focused approach to whole of government strategies which aim to make communities more accessible and inclusive for people with disability.

When the Bill is enacted, the new legislation will replace the Disability Services Act 1993 which, for the last 21 years, has provided the main legal foundation in NSW for regulating supports, services and funding for people with disability.

Although progressive when introduced, the Disability Services Act, does not sit comfortably with the present day approach to disability which focuses on empowering people with disability to have greater choice and control so they can live more independently.

New University Chair for Intellectual Disability

Minister for Disability Services John Ajaka has announced Associate Professor Leanne Dowse as the newly appointed Chair in Intellectual Disability and Behaviour Support at the University of New South Wales (UNSW).

“The NSW Government established this new role as part of its commitment to improve services for people with intellectual disability,” Mr Ajaka said.

“Associate Professor Dowse brings a wealth of experience to the position, having worked as a practitioner and passionate advocate for intellectual disability since the 1980s.

“She is a leading member of UNSW’s Faculty of Arts and Social Sciences and has been a researcher since 1995 and an academic since 2008.

“Associate Professor Dowse has developed and promoted disability studies in Australia and has taught social policy, social research methods, disability studies, human behaviour and criminology ... read more here and here

NSW Carer Awards 2014 - nominations open

Nominations are now open for the 2014 NSW Carers Awards and encouraged the community to nominate someone they know.

NSW Carers Awards are an opportunity for the community to acknowledge and celebrate the outstanding contributions being made by unpaid carers.

Nominations can be made in the following categories:

Carers Award – IndividualFor individuals who have made an exceptional contribution to caring. 

Carers Award – OrganisationFor community groups, schools, workplaces or other organisations which provide exceptional support to carers.

Up to 60 individual carers and 20 organisations will be honoured with an award during NSW Carers Week which runs from Sunday 12 - Saturday 18 October 2014.

The 2014 NSW Carer of the Year will be announced at a ceremony at Parliament House on Monday 13 October.

Nominations can be made online at www.facs.nsw.gov.au/carersawards until Monday 30 June 2014.

Library Thursday: 29th May 2014

New in the library
Far from the Tree: Parents, Children and the Search for Identity
Andrew Solomon
A copy of this book has been kindly donated to the library by one of our families.

• Far from the Tree website

Archiving Project
Our archiving project continues on a weekly basis in the office. We are currently looking for any copies of materials from the 7th World Down Syndrome Congress held in Sydney in 2000. Any of the following would be greatly appreciated to supplement our collection:

• Program and Abstract
• Workbook for delegates with Down syndrome
• List of delegates

Any other material from the Congress including photographs would be appreciated as well.

Members' library

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

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

Latest additions to 'events' pages

Down Syndrome NSW events:

City to Surf
10th August 2014
Sydney

Better Start, Early Days workshops
Turramurra Friday 6th June 2014
Wollongong Wednesday 11th June 2014
Campbelltown Tuesday 17th June 2014
Northmead Friday 27th June 2014

Step Up! 2014

19th October 2014

Sydney

Other events:

NDIS Forum - Investing in people with disability: Financing and costs of the NDIS

Hosted jointly by Macquarie University, the University of Sydney and Australian National University
5 - 7.30 pm, Wednesday 4 June 2014
Camperdown 

Preparing for the National Disability Insurance Scheme (NDIS)

NDIS Webinar #6 - participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme.
Thursday 5th June 2014

Working with Loss and Grief

Centre for Disability Studies - one-day workshop presented by Dr. Vivienne Riches.
Monday 21 July 2014
Camperdown

• Flyer

People with Down syndrome in the media

The actor with Down's syndrome tackling Dickens
Damon Rose, BBC News, Ouch, 23rd May 2014
An actor with Down's syndrome is to play the title role in BBC Radio 4's new classic serial, Barnaby Rudge. Although his non-standard speech might be an extra challenge for the listener, the producer feels it shouldn't happen any other way ...

Hanna Atkinson's 2014 Commencement Speech

Filmed at Heritage High School's 2014 graduation. These wise words were written by Hanna and were delivered on 5/21/14. The title of the speech is "Do not let others define who you are".

Down's Syndrome man Ashley Marshall's flock of eye-catching birds

Darryl Ames, The Craven Herald, 16th May 2014
A young man with Down’s Syndrome who tends to a small flock of eye-catching birds is building a sense of community spirit on a Skipton estate. Ashley Marshall, 23, a former pupil at Brooklands Special School, is raising rhea, peacocks, turkeys, geese, ducks and other poultry in hen pens on the Middletown allotments ...

Pablo Pineda, Spanish actor with Down Syndrome: ‘We are not sick’

Hope Gillette, Soludify, Jul 17, 2013
What do you think when you hear the words ‘Down Syndrome’? Do you think of a talented individual, with a graduate college degree, traveling around the world giving motivational speeches, and leading a life very similar to yours? If you don’t, maybe you should.

Northumberland girl helping to raise cash for charity who helped her after hair loss

Lisa Hutchinson, Chronicle Live, 19th May 2014

... Abbie ... is overwhelmed by her new wig. She said: “I love it. I feel like a princess.” Abbie started losing her hair and was diagnosed with alopecia in April last year.

“She had her confidence knocked,” said Alison. “We think it is stress related and she is waiting for further medical appointments ...

Carers NSW 2014 Carer Survey

The 2014 Carer Survey is now open until 30th June 2014.

• Click here to complete the survey.

This year’s survey builds on the strengths of our previous surveys, as we aim to more thoroughly investigate issues that impact carers on a daily basis. The 2014 survey particularly focuses on:

• Health and wellbeing
• Employment
• Service access and social support
• Characteristics of carers and those they care for.

Information from previous surveys is available from the Carers NSW website, here.

Save the date for Step Up! 2014

The date has been set for Step Up! 2014  in Sydney- keep your calendar free on

Sunday 19 October 2014

More details to follow.

If you are interested in organising an event in your local area or would like to volunteer at an event please contact Benjamin Chinnock via email: ben.chinnock@dsansw.org.auben.chinnock@dsansw.org.au

Recent commentary about the Disability Support Pension

Details of how the reassessment of the work capacity of people under 30 who began receiving the Disability Support Pension between 2008 and 2011 are not yet available, but there has been plenty of media commentary about who receives DSP and who 'deserves' to, and its impact on employment of people with disability, such as these examples:

Evidence does not back claims of a blow-out in numbers receiving disability support pension

Judith Ireland, Sydney Morning Herald, 23rd May 2014
... a leading disability advocate argues the problem with the disability pension is not an "explosion" in the number of people on the payment, but the low levels of employment of people with a disability. National Disability Services chief executive Ken Baker says the disability pension had only grown by 116 people between the end of 2011 and the end of 2013 ...

Tele's sloppy journalism hurts our most vulnerable

Front page Daily Telegraph,
22nd May 2014
Click to enlarge the image

Frank Quinlan, The Drum, 23rd May 2014
... Most bizarrely, the story compared our country's war veterans to recipients of the pension, suggesting a negative comparison between these proven heroes and the dross on the DSP.

Ironically, some of those so called DSP 'slackers' would be veterans themselves, perhaps with Post Traumatic Stress Disorder, for example.

In reality, the front page of the Daily Telegraph yesterday did a large number of Australians, who are battling every day with a serious mental illness or who care for somebody with a serious mental illness, a tremendous disservice ...

Complaints to press council in response to Daily Telegraphs depiction of disability pensioners as slackers

Nick Grimm, PM (ABC Radio), 22nd May 2014
... Rupert Murdoch's Sydney Daily Telegraph is being accused of scapegoating the disabled in a furore over its coverage of the budget aftermath ...

Budget 2014: it's time to raise our expectations

Dr George Taleporos, Ramp Up, 19th May 2014

While last week's Budget announcement may have sparked conversation about the significant barriers to employment for people with disabilities, changes to the Disability Support Pension may actually help to change a culture of low expectation ...

NDIS events, June 2014

NDIS Forum - Investing in people with disability: Financing and costs of the NDIS
This forum is being held jointly by Macquarie University, the University of Sydney and Australian National University.

At this forum session, leading disability experts and actuaries will analyse the 2014 budget papers and scheme experience, and an expert panel will discuss the implications for service providers and for people with disability.

Confirmed speakers and panellists include:

Cain Beckett – Price Waterhouse Coopers and Chair of the Disability Council of NSW
Peter Martin – Australian Government Actuary and NDIS Reviewing Actuary
Gordon Duff - Executive Officer, National Policy Research Unit, National Disability Services
Professor Richard Madden – University of Sydney
Professor Jim Butler – Australian National University
Associate Professor Leonie Tickle – Macquarie University

5 - 7.30pm, Wednesday 4 June 

CamperdownFree, but you must register prior

Online registration via Macquarie University website here
For further information, please e-mail Linda Drake: linda.drake@mq.edu.au or telephone 02 9850 8678.

NDIS webinar #6: Preparing for the NDIS

Thursday 5 June 2014

A link to join the webinar will be made available shortly.You can test your connection ahead of time using this test link.

The sixth NDIS webinar brings together participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme. Participants will share their advice on how best to prepare for the NDIS and discuss and respond to questions from the online audience. This timely discussion will assist people preparing to enter the Scheme in new and expanding trial sites across Australia.

Access all NDIS webinars, including the most recent webinar ‘Meet the Governors of the National Disability Insurance Scheme’, on the NDIA website.

The NDIA invites people with disability, family members, carers, advocates, support providers and community members to join the discussion online and contribute to the conversation. The webinar comprises audio, visual, live captioning and Auslan to make it as widely accessible as possible.

Take part in the conversation by submitting questions and comments via Twitter using the hashtag #NDISWEBINAR or via the Livechat facility. You can register your attendance at engagement@ndis.gov.au or phone 1800 800 110. Visit the NDIS website for more information.

Weekend reading and viewing: 24th - 25th May 2014

Each heading is a link:

Call the Midwife (series 3, episode 6, 59 m)
ABC iView, broadcast 22nd May 2014
In case you missed it, or want to see it again, this is the episode featuring Sarah Gordy (who has Down syndrome) and Colin Young (who has cerebral palsy) as a young couple having a baby in the 1950s in the East End of London. It is now on iView until 5th June.

Down syndrome: Why I don't want my child to hug everyone
Maureen Wallace, She Knows (Parenting), 22nd May 2014

... A boy of about 8 years old, with Down syndrome, was racing from tent to tent, barging in and wreaking havoc. Each time he was admonished, he ran to the closest person and hugged them. The cute gesture seemed to negate his poor behavior, and he was allowed to continue. Now that my own son is 4 and is getting positive reinforcement for hugging everyone, I've realized my son, who was "never going to do that," is on the path to becoming a random hugger, too ...

What Independence Means
Big Blueberry Eyes, 21st May 2014
... I've been thinking about independent living - what that might look like for Kayla, but more importantly what Kayla wants that to look like for her life ...

7 Awesome Life Lessons My Son With Down Syndrome Taught Me
John M Simmons, Huffington Post (Parents), 21st May 2014
... My son didn't progress quickly, but he did progress. If I tried to measure him against his siblings and the rate that they learned, there could only be disappointment. But when we celebrated Jack's accomplishments for what they were to him, and measured them against his own challenges, advancement for him was at least as impressive as it was for any of our other children ...
Our story: nothing has changed about Down syndrome, except how the world treats those with it
Mark Leach, Down Syndrome Pre-natal Testing, 19th may 2014
This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome ...

In Science of Down Syndrome, Another Piece of the Puzzle
Vicki Vila, Thoroughly Modern Messy, 20th May 2014
A few news articles recently reported that after studying a pair of identical twins where only one had Down syndrome, scientists in Europe determined some new information about how having Trisomy 21, a third copy of the 21st chromosome, affects a person’s genetic material. Myself and some other parents who have children with Down syndrome were unsure what this research meant and were confused by some of the wording in these articles. To decipher this for my non-scientific brain, I contacted Dr. Michael Harpold, who has more than 35 years experience as a biomedical researcher and is the chief scientific officer for LuMind Foundation ...

Conversation - Andrew Solomon 

Richard Fidler, Conversations (ABC Radio), Tuesday 20 May 2014

Andrew Solomon spent a decade speaking with 300 parents raising children who are exceptional, unusual or difficult. Working on what would become his award-winning book, Far From the Tree, Andrew talked to families of children who are different from their parents: children born deaf, or autistic, or transgender, and parents of child prodigies, and criminals.
He's come to the conclusion that all of us have 'vertical identities' and 'horizontal identities'.
Vertical identities are the bits we get from our parents: our religion, race and nationality.
Horizontal identities are the characteristics that are ours alone and are often the hardest parts for parents to accept ...

Audio file (51m 47s)

• Andrew Solomon's TED Talk from 2013, Love, No Matter What

"She Won't Get Anything Out of It" and Other Mainstreaming Blunders

Susan Aileen, SwiftTalk (The Classroom), 20th May 2014
... The practice of mainstreaming indirectly promises a child that someday, if she performs well in the special education classroom, she will become a member of a general education class. Mainstreaming teaches children that belonging is conditional. In other words, if you “act right” when you visit the general education classroom, you can belong. If you don’t “act right,” you will have to leave, and if you are lucky you will be given a chance to try again to belong on another day ...

What about their brothers and sisters?

All families are concerned about sibling relationships. 'Our' new families often want to know how one child having Down syndrome will impact on his brothers and sisters.  

Sometimes - quite often, actually - it's like this:

Graduating WSU senior pursues links between Down syndrome, Alzheimer's

Marcia Ratliff, Winona Daily News, 9th May 2014
... Noterman’s research concerns connections in the brain, specifically relating Down syndrome with Alzheimer’s. Fifty percent of people with Down syndrome get Alzheimer’s, so Noterman wanted to find out more about how brains with those diseases function differently. She has additional interest in Down syndrome, because her 16-year-old brother, Willie, has the condition ...

My brother, Jon

David Will, The Daily Princetonian, 29th April 2014
My oldest brother, Jon, is 41 years old and has Down syndrome. I’ve never shied away from explaining his condition to strangers. In fact, I am proud of all he’s accomplished in spite of his condition. But when a friend uses “retard” or any variant of the word, I usually just let it roll off my back, even though it stings every time. In doing so, I’ve been a coward ...


Disability is a funny word
Tommy Harris, Apostrophe, 23rd April 2014
... From the outside looking in, some might think that because of Tim, our lives are not “normal.” I couldn’t begin to say how wrong they would be ...

'The Guide': new free online publication on mental health services for people with intellectual disability

A new resource was launched last week, to tackle mental health problems among people with an intellectual disability and to improve the system that is currently failing them.

Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers (otherwise known as The Guide) has been developed by UNSW researchers and will provide a national framework for action for all frontline mental health service professionals. It was launched at the Royal Australian and New Zealand College of Psychiatrists 2014 Congress in Perth.

"Approximately 400,000 Australians live with an intellectual disability and they are two to three times more likely than the general population to experience mental health problems, like depression and schizophrenia," says UNSW Chair of Intellectual Disability Mental Health Associate Professor Julian Trollor, who is one of the Guide's authors.

"Despite this, many Australian mental health professionals report that they feel ill-equipped and lack confidence in assessing, supporting and managing people with an intellectual disability," says Associate Professor Trollor, who also heads the Department of Developmental Disability Neuropsychiatry (3DN) at UNSW Medicine.

"The current services are not meeting the needs of patients. This new Guide, which is a practical resource underpinned by human rights principles, will go some way to tackle this by supporting mental health practitioners to provide the highest quality of care and timely access to services for people with an intellectual disability."

The Guide, which is the first document of its type in Australia, has been developed by 3DN at UNSW Medicine with funding from the Australian Government Department of Health. It is informed by extensive background work, including evidence-based practice and clinical consultation.

"This Guide is a product of comprehensive consultation, research and collaboration, and is a valuable contribution to our understanding of the service needs of people with intellectual disability and mental illness. Supporting frontline mental health providers to improve service accessibility and delivery will achieve better health and wellbeing outcomes for this important client group," says Jane Halton, Secretary of the Australian Government Department of Health.

The pioneering resource encourages a co-ordinated approach across various service sectors and is available at the 3DN website.

Source: University of New South Wales, via Medical Express

Outdoors

How lucky are we to live in a country with a climate that allows us to spend lots of time outdoors, just about year round?

NSW Sport and Recreation survey

Are you …

• A person with disability who doesn’t participate in sport and physical activity?
• A person with disability who does participate in sport and physical activity?
• A support person or an advocate of a person with disability?

If you answered ‘yes’ to one of the questions above, Sport and Recreation, an agency of the NSW Department of Education and Communities, invites you to complete the All in the Game questionnaire.

All respondents who live in NSW and complete the survey by Friday 30th May at midnight will have the opportunity to win 1 of 3 tablets of their choice to the value of up to $600.

This questionnaire is accessible to all and for information on alternative formats, please contact the consultation team at all_in_the_game@acceptingengagement.com

• Link: https://www.surveymonkey.com/s/all_in_the_game

Advocacy and rights: news and opinion

We need a voice for people with disabilities
Graeme Innes, Sydney Morning Herald, 19th May 2014
... I am writing to you about your comments on Thursday, after we learnt the government no longer intends to renew the position of Disability Discrimination Commissioner with the Human Rights Commission. You said: "Lots of people are discriminated against. Why don't we have a gay rights commissioner, or a left-handed commissioner, or a short persons commissioner, or a commissioner for people who aren't good-looking."

... Mr Creighton, to quote from my friend Rachel Ball at the Human Rights Law Centre: "It is easy to stand atop a mountain of privilege, and tell those at the bottom of the mountain that privilege is irrelevant."

Facing up to violence against women with disabilities

Clem Barstow, Sydney Morning Herald, 15th May 2014
When she went to the police to report intimate partner violence, Rebecca* was met with a stark response: “They didn’t believe me.”
This was not solely because of institutionalised mistrust of victims of sexual violence, but because Rebecca is a woman with an intellectual disability who experienced intimate partner violence from a partner who also had an intellectual disability. Not being believed is a common thread through much of Rebecca’s experience dealing with both police and support services ...

The Voices Against Violence report was released on 15th May 2014. For more information, and to download the relevant papers, visit Women with Disabilities Victoria, Office of the Public Advocate  and Domestic Violence Resource Centre Victoria.

How Misunderstanding Disability Leads to Police Violence
David Perry and Lawrence Carter-Long, The Atlantic, 6th May 2014
Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers ... Law enforcement officials expect and demand compliance, but when they don’t recognize a person’s disability in the course of an interaction, the consequences can be tragic ...

It's time to stop using the 'R' word

Stuart Rollo, Daily Life, 4th May 2014

... As the crowd laughed uproariously at the suggestion that the well-known comedian may be mentally disabled, the hearts of family, friends, carers, and colleagues of anybody with a disability, and most importantly any viewer with a disability themselves, collectively sank.

Mother testifies before Senate panel about son’s death at Frederick deputies’ hands
Teresa Vargas, Washington Post, 30th April 2014
“I want to tell you firsthand that today’s hearing will save future lives,” Saylor said.

Disability no justification for denying people’s right to make their own decisions
UN Human Rights, 22nd April 2014
People with disabilities have the same rights as everyone to make decisions about their lives, including the right to take risks and make mistakes, a UN committee has stressed in new guidelines on implementing the Convention on the Rights of Persons with Disabilities.

National Framework on Restrictive Practices
Dept Social Services (Disability and Carers), 15th April 2014
The National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector is now available to read on the Dept of Social Services website. The National Framework was endorsed by Commonwealth, State and Territory Disability Ministers on 21 March 2014 and focuses on the reduction of the use of restrictive practices in disability services that involves restraint (including physical, mechanical or chemical) or seclusion.

Ombo Info is the newsletter from the office of the NSW Ombudsman.
Volume 4, issue 1 (April 2014) is now available online (or you can subscribe to receive it by email)

Starecase - a magazine for people with disability by people with disability.
Issue 5, April 2014 is now available online.

Dance: Chatswood

Support DS NSW with your Entertainment Book 2014 - 2015

The 2013 | 2014 Sydney Greater West Entertainment™ Book will expire on 1 June 2014. To make sure you don't miss out, and continue to enjoy the many benefits of your Membership, purchase your new 2014 | 2015 Entertainment™ Membership today!

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Yet more budget commentary ...

One more list of links to commentary on the Federal budget, and then we will confine posts to specific measures impacting on people with disabilities and their families, as details become known ...

Weekend reading and viewing: 17th - 18th May 2014

My Perspective:  2014 finalists
Down's Syndrome Association (UK)
Annual UK photo competition for photographers with Down syndrome - final 26. The shortlisted images are now in the process of being judged and the winners will be announced at Kew Gardens on Thursday 5th June. Click the link immediately under the thumbnail views to see the shortlisted photos on flickr.

Age Appropriate Adult Activities
Big Blueberry Eyes, 5th May 2014
... I'm not denying that Kayla isn't cognitively like a 10 year old, but I never refer to her as being, "10 years old, but more like a X yr old." She's Kayla, 10 years old." ... If we want her to learn how to be age-appropriate she needs to be with same-age peers; or else she will continue to learn and act much younger than her age ...

‘I had to find a way to tell this story’

Vancouver Sun, 9th May 2014
When writer Judy McFarlane was asked if she would help Grace, a girl with Down syndrome, to write a book, she realized she held deep, unacknowledged fears about Grace’s condition. Yet Grace’s passion to become a writer inspired McFarlane and Writing with Grace tells the story of McFarlane and Grace’s journey ...

Pre-natal tests are slashing the number of Down syndrome births, but some families are bucking the trend

Elisa Black, The Adelaide Advertiser, 9th May 2014

When Suzanne McAdam discovered her fourth child had a one in 11 chance of having Down syndrome, she knew she would have further testing to confirm the diagnosis. She also knew that, no matter the result, she would choose to keep her baby. Suzanne and husband, Ross, lost their first baby, Daniel, after a long and complicated birth. They know what it is to say goodbye to a child ...

Stop the platitudes about my son with Down syndrome

Anne Grunsted, Chicago Parent, May 2014.
... when I hear, “you are a special mother,” “God bless you,” and “I don’t think I could do it,” I don’t scowl in anger or digress into the rant burning on my tongue. I mutter something about the wonderfulness of Bobby and hastily turn away, ending the awkward situation. But don’t get me wrong, the anger is lurking. Bobby, after all, is right there, listening to these platitudes ...

My son lived for 10 days, and changed my life
Maureen Wallace, She Knows (Parenting), 8th May 2014
Lisa Simonsen is tough. At 42, unmarried but wanting to be a mom, she went through IVF to conceive her son, Carter. Months into her pregnancy, she learned he had Down syndrome — then promptly dove into research and a new, welcoming community. April 14 was Carter's due date, but he arrived prematurely at 23 weeks and lived only 10 days. The world he introduced to Lisa will last her lifetime.

Disability and the big screen
Louise Pascale, Ramp Up, 9th May 2014

Louise Pascale shares her experience of producing the documentary, Sons and Mothers - an intimate portrait of a group of men who meet weekly as a theatre troupe, and the creation of a theatrical love letter to their mothers.

• Some of the men in the film have Down syndrome. Sons and Mothers premieres in Melbourne on Saturday 17th May, at 3.30 pm.  Click here for flyer

More news and commentary on the Federal Budget 2014 - 2015: specific effects on people with disability and carers

Disability in Budget 2014

El Gibbs, Ramp Up, 15th May 2014
... a summary of the impact of the 2014 Federal Budget on people with disability ...

We're damned by discrimination, not the DSP

Stella Young, Ramp Up, 14th May 2014

Making the Disability Support Pension harder to get isn't going to "entice" people with disabilities into the workforce. We're already enticed. Some of us are desperate to work ...

Carers face a tougher future under Budget changes

Carers Australia, 13th May 2014 

A second statement from Carers Australia, particularly focuses on the budget's impact on carer payment recipients and young carers.

Budget: disability groups furious that ABC Ramp Up website to go
Amanda Meade, The Guardian (online), 14th May 2014

... On top of the 1% cut to ABC funding, the first budget of the treasurer, Joe Hockey, discontinued funding for the popular disability website hosted by the ABC ...

One commissioner role cut from Human Rights Commission

Nance Haxton, ABC News, 14th May 2014
One of the less publicised aspects of the federal budget is the axing of one of the commissioner roles from the Human Rights Commission. The Disability Discrimination Commissioner has been axed, leaving six commissioners in other roles and the president. Current disability discrimination commissioner Graeme Innes, whose term ends in July, says the scrapping of the role will have dire consequences for the disability community in Australia, as it relies on the advocacy provided by a specific commissioner.

Commission to continue representing people with disability

Australian Human Rights Commission, 14th May 2014
... Pending a future appointment to be made by the Attorney-General, Professor Triggs will assume responsibility for continuing to meet the statutory obligations required under the Disability Discrimination Act ...

Parents of disabled children hit out at budget cuts
RN Breakfast (ABC Radio, 16th May 2014 (audio file 7m 18s)
... In 2013 the Coalition described current funding arrangements for these students as unfair and inequitable, and committed itself to increasing the amount of money they receive from 2015. But the Federal Budget contains no additional money for these students, and their parents say they feel betrayed ...

From the National Council on Intellectual Disability via Down Syndrome Australia, 14th May 2014:

NCID attended the 2014 - 2015 Budget lockup at Treasury. Below is an outline of what the Budget means for people with intellectual disability and their families.

The big issue for people with intellectual disability will be changes in the requirements to obtain and maintain receipt of the Disability Support Pension (DSP). There will be 'work-focused activity' requirements with 'sanctions for non- compliance'.

'Call the Midwife': correction

Oh dear - if you have just tried to watch the episode of Call the Midwife starring Sarah Gordy, you will have realised that the wrong date was posted here.  It's definitely next week's episode - we saw the trailer tonight - Thursday 22nd May. Many apologies for the misdirection.

The correct information about Series 3, Episode 6 is on the ABC website here.

Down Syndrome Education International webinars

UK based Down Syndrome Education International (DSE) has announced two webinars to be presented by Professor Sue Buckley, DSE's Director of Science and Research and an internationally recognised expert in education for children with Down syndrome. Each event is offered on various dates at times appropriate to different international time zones, including 'Australia - friendly' times:

Getting started with DSE’s reading and language intervention for children with Down syndrome

This live online event offers educators an overview of the key steps involved in preparing, planning and starting to use DSE's new reading and language intervention for primary/elementary aged children with Down syndrome. 

DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome. RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching.

Webinars in June and September will suit Australian time zones.

• Full details and registration information is here, on the DSE website

Introducing See and Learn 

Speech

This live online event offers guidance about speech development for children with Down syndrome and how DSE's See and Learn programmes can be used to teach early sound discrimination and speech production skills, and to improve speech clarity.

See and Learn Speech is an evidence-based intervention programme designed to help children with Down syndrome develop clearer speech by learning to hear the differences between sounds, learning to say individual sounds, practising simple sound combinations and saying whole words and phrases.

Webinars in July and October will suit Australian time zones.

• Full details and registration information is here, on the DSE website

'Learn to Ride' clinic for children with special needs: Caringbah

David Chan is Acting Senior Physiotherapist with Ageing, Disability and Homecare in Sydney's southern suburbs. He is running a weekly drop in clinic during the school term for teaching kids to ride bikes:

For advice, tips and practice on learning to ride a standard two wheel bicycle.

Thursdays during the school term, 3:30pm - 5:00pm
You can drop in anytime between 3:30pm and 5pm.

Caringbah High School, CARINGBAH

Cost: free

If you don’t have a bike, we have a small number of bikes that may be suitable.

For more info please email David Chan at david.chan3@facs.nsw.gov.au

2014 - 2015 Federal Budget, delivered 13th May 2014: effects on people with disability and carers, responses

Budget 2014-15: Disability and Carers - portfolio statement, includes details of changes and implementation dates.

BUDGET 2014: A mixed bag for disability “We need a jobs guarantee, not a welfare guarantee” Media release from People with Disability Australia, in response to the Federal Budget, 13th May 2014 People with Disability Australia (PWDA) has welcomed the Budget announcement that the Federal Government intends to roll out the NDIS on time and in full. However, PWDA expressed concerns that thousands under the age of 35 on the Disability Support Pension (DSP) will be medically reassessed and may be moved onto Newstart or Youth Allowance, along with changes to indexation to the DSP that will erode the safety net over time. Many people with disability face discrimination in employment, and PWDA also calls for the Government to fill a dedicated Disability Discrimination Commissioner position from July 2014. The Government has announced that people on DSP under 35 years of age will be reassessed by an independent doctor except for people who are "severe and manifest." People who are found eligible will have to undertake a program of activities to build their work capacity. The pathway for people who are not eligible is unclear but may involve those people going onto Newstart or even the much lower Youth Allowance. A group of older people with disability over 50 could be supported through wage subsidies of $10,000 which increase over time. PWDA President Craig Wallace said, “We want to see more people in jobs, not on welfare. PWDA believes that any young people reassessed and found ineligible should be offered a job, apprenticeship or training opportunity rather than pushed onto Newstart or Youth Allowance. Young people need a restart to embark on a life of opportunity and the Government should provide wage subsidies to them as a first priority. "We also think a jobs plan should include changes to Disability Employment Services and believe the focus should be on allowing people to purchase economic participation outcomes. “Reassessing people without jobs to go to, will mean they are tossed onto Newstart or Youth Allowance and into greater poverty. People with disability are more likely to be out of paid employment than other people of working age, with a labour force participation rate of 54% versus 83%. 45% of people with disability are also near or below the poverty line,” said Mr Wallace. “If young people with disability can’t get employment now, what hope will they have if they wind up homeless and unable to afford rent, medication, transport, clothes or GP visits? “Despite the talk of easy welfare, the reality is that life on the DSP is far from easy. For example, our figures show a person on the DSP living in Sydney’s inner west moving from DSP onto Newstart would leave them destitute - $200 a week short of cash." (Attachment A – A Reality Check - Jobs, Newstart and DSP). People on Newstart live on $255 p.w or $36 per day, while people on DSP live on $421 p.w or $60 per day - so this will mean a loss of $166 per week. Even worse some people may wind up on Youth Allowance which is even less - $214 a week or $30 a day. “If we couldn’t get people into work at the height of the boom with a skills shortage, what hope do we have now without a coordinated plan? The Treasurer says everyone has a part in turning things around, so we call on Government to form a compact with big business to create opportunities and lift people with disability out of poverty. Let’s create 500 jobs each from top 40 companies within the ASX 100, with Government stumping up to provide the rest to make a dint in the long term decline in public sector jobs for people with disability. “Beyond participation, PWDA believes that we will always need to retain generosity and a safety net for those most vulnerable including through DSP. We are concerned that the incomes of those most vulnerable people will be eroded by the new indexation arrangements linked to CPI from 2017 rather than average male wages. “We congratulate Government on its decision to leave the rollout timetable and funding for the National Disability Insurance Scheme untouched, including addressing an error in the application of the efficiency dividend. The Productivity Commission said the NDIS would generate a 1% boost to the GDP through greater workforce participation by people with disability and carers. It is the right and decent thing to do. "Implementing the NDIS and creating opportunity through jobs will require a concerted attack on discrimination and the barriers which people with disability face every day. For that reason, PWDA notes the decision to reduce appointments to the Australian Human Rights Commission and calls on Government to ensure that a dedicated Disability Discrimination Commissioner is appointed when vacancies occur in July 2014," said Mr Wallace. Increased poverty for disability community shouldn’t be required to balance the budget - Carers Australia response to the budget, 13th May 2014 Budget divides the nation, young and old, rich and poor - Australian Council of Social Services' response to the budget, 13th May 2014

Budget fails students with disability - Children with Disability Australia, 13th May 2014
The 2014 Budget has failed students with disability in Australia.

Students with disability have been left out of the federal Budget, despite a clear commitment to increase funding for students with disability as part of the National Education Reform in the 2015 school year.

Stephanie Gotlib, Executive Officer of Children with Disability Australia (CDA) said: “A typical school experience for students with disability involves limited choice of school, discrimination, bullying, limited or no funding for support and resources, inadequately trained staff and having to contend with a culture of low expectations,”

“These failings have become entrenched in the education system and the urgency of delivering system wide solutions is now acute. It is crucial that we have adequate funding to implement the necessary reform.”

Stephanie Gotlib said: “Tonight’s Budget will have long-term implications. Without access to a quality education many young people with disability will be on a fast track to the Disability Support Pension.”

ABC Ramp Up funding cut - ABC budget response, 13th May 2014

... In addition to the funding cuts, the ABC will also have to manage the cessation of funding for the online disability website, ABC Ramp Up at the end of this financial year ...

Better Start, Early Days: free workshops for families

We invite you to reserve your place at Down Syndrome NSW's 'Better Start, Early Days' workshops.

The workshops have been developed to support parents of babies with Down syndrome and to provide information to families about the Department of Social Services/ Better Start' initiative. The workshops will cover necessary information about the initiative and discuss strategies to navigate the disability landscape.

Workshop 1: Better Start Early Days Support - for families with a recent Down syndrome diagnosis

Workshop 2: Better Start Early Days Support - for families with children aged between 18 months to four years.

Workshop schedule:

Northmead          Saturday 24th May 2014

Turramurra         Friday 6th June 2014

Wollongong        Wednesday 11th June 2014

Campbelltown    Tuesday 17th June 2014

Northmead          Friday 27th June 2014

Times:

Workshop 1:     9.30 am - midday

Workshop 2:     1.30 pm - 4 pm

Venue details will be forwarded once registration is received.

There is no cost to attend.

Book now: phone Down Syndrome NSW on 02 9841 4444 or email Sarah at sarah.escherne@dsansw.org.au

Please advise any dietary requirements as morning and afternoon tea will be provided.

Babies and toddlers are welcome. Please advise when registering the age of your child, if attending.

The workshops are a great opportunity for new parents to meet other families and get some valuable information about services available. The sessions are relaxed and quite informal, to allow for sharing experiences and learning from others.

• Flyer

Newcastle Young Carers

Newcastle Young Carers is a new support group for young carers aged between 15-25 years from all different backgrounds.

A young carer is anyone who lives with a child or an adult with a disability ... for instance it may be a sibling or a young parent.

The group is aiming to get together and catch up once a month within an area from Port Stephens, Maitland, Newcastle and the Central Coast.

To subscribe to the mailing list or join the support group simply email: youngcarersnewy@gmail.com and can find the group on Facebook, here.

Run the 2014 City to Surf for Down Syndrome NSW, or support a runner

It’s not too late to get your early bird entry for the Sun-Herald 2014 City2Surf, to be held on Sunday 10th August 2014.  Early bird registration is open until 31st May

Register today and start fundraising to help raise vital funds for Down Syndrome NSW. The money raised will be used to fund projects in our Parent Support team specifically for families supporting school aged children with Down syndrome. Those projects may include workshops such as Pre School and Starting School seminars, Signing workshop for new families and our Parent Support phone support.

Employment issues: what the BSWAT decision is about and what it's not about

If you are even mildly confused by the responses from various interest groups to the recent Human Rights Commission decision about the Business Services Wage Assessment Tool (BSWAT), these two links will provide clarification:

An open letter to Senator The Hon Mitch Fifield, Assistant Minister for Social Services,  Mark Pattison, Executive Director, National Council on Intellectual Disability (NCID), 7th May 2014
Dear Minister Fifield,With respect, you cannot go on national radio (AM, Radio National 7 May 2014) and say to people with intellectual disability and their families that people with significant intellectual disability are unable to work in the open labour market (open employment).
This is factually wrong ... read the full text of the open letter, or listen to an audio file here.

This article uses excellent graphics to explain the processes behind the BSWAT, the Human Rights Commission decision, and to clarify who is affected and who is not:

Fears thousands with severe disability could be thrown out of work: scaremongering or valid concern?  Opinion, Disability Directory, 7th May 2014
The ABC reported ... that “There are fears that thousands of people with a severe disability could be thrown out of work after a decision by the Human Rights Commission. … [N]ot-for-profit groups say they cannot afford to move that quickly and could actually fold, leaving many people without work altogether.” 

With the Facebook post of the article receiving hundreds of comments, we have pulled together the following to help you understand this issue. 

Firstly, it is important to know what this decision is and is not about. 

It can help to think of it this way ... read the full text of the article and the graphics here

Could you answer some questions for a student?

Molly is a NSW Year 12 student, studying Society and Culture for her Higher School Certificate. She has has emailed this request for assistance in gathering information:

My brother, Sam, was born with Down syndrome and other health issues and so I have decided to look at "The effect of having a child with Special Needs on families" for my Personal Interest Project.

This questionnaire will help me explore this topic further by gaining the perspectives and experiences of other families and I would be really grateful for your help in circulating this to families.

Her questionnaire is here, if you would like to help her
out.

Weekend reading and viewing: 10th - 11th May 2014

To parents with a Down syndrome diagnosis: keep dreaming big
Sipping Lemonade, 7th May 2014
I remember the feeling that came over me in the delivery room when the doctor told us Kate had Down syndrome. I felt an incredible grief. And, in a way, I was grieving something — the death of an imaginary dream, a 9-month long fantasy, an idea of a child who I had created in my daydreams who did not have a “disability” ...

Happiness-For-All Secret: Make your child with Down syndrome work! 

Natalie Hale, Special Reads, 26th April 2014

... Why should you make sure that your child with Down syndrome pulls her weight in the family, is a meaningful contributor to the household, and can be relied on to do certain things just like everyone else in the family?

The title of my chapter on this tells it all: “How To Ruin Your Child.” The opening paragraph is this: “How to ruin your child? That one’s easy. I almost did it myself. Here’s how you do it: don’t make them work ...

Natalie Hale's book Down syndrome parenting 101 : must-have advice for making your life easier is in the DS NSW library collection, available for loan to members.

How can this be you?

Amy Julia Becker, Huffington Post (Parents), 29th April 2014

When the doctors said the words "Down syndrome," you wondered if she would be beautiful. You wondered if people would pity your family. You wondered if you would be able to sustain your ferocious love for her.

But today, she patted the carpet next to her when you visited her classroom. Her friends Sasha and Emma crowded around. You felt the warmth of their 8-year-old bodies leaning next to you. You listened with these little girls to the teacher's explanation of how to construct a poem. Of taking a big idea and using a particular experience to give that idea or feeling a small container, to try to hold it ...

We shouldn’t have to justify children with Down syndrome being born

Mark Leach, Down Syndrome Prenatal Testing, 1st May 2014
Rachel Adams, the author of Raising Henry, has a piece in the new issue of American Journal of Medical Genetics, Part A. You should read it and its lines should be inscribed in offices around the world ...

Stella Young at TEDx Sydney 2014 questioning assumptions about disability

Click on Stella Young's photo at the bottom of the screen to go straight to her talk (8m 26s)

• Edited transcript

Inclusion, belonging and the disability revolution (video 23m 1s)

Jenny Fenton and Kelly Norton, TEDx Bellingen 2013, published 16th March 2014 

Jennie shares the story of her family's journey from disability to possibility and all the dark and light places in between. She also looks at the broader changes happening in the world for people who live with disability and outlines some of the ways that Bellingen, as a community, as well as people, as individuals, can do their part for this revolution.