Michael Kendrick on the NDIS, people with disability and families: free event

Register online

Or contact Resourcing Families:

T: (02) 9869 7753 

Free call: 1800 774 764 (for callers outside Sydney)

E: info@resourcingfamilies.org.au

Flyer 

Weekend reading, listening and viewing: 28th - 29th September 2013

Jacob's Turn

Sprout Flix, 2010 (8 m)

... the story of Jacob Titus, a four-year-old boy from the small rural community of Floyds Knobs, Indiana. Jacob loves to play T-ball, like thousands of kids across the country. Jacob also happens to have Down syndrome. The film shows how Jacob’s “turn” at bat and on the field was a thrill for him, but more importantly, an event that transformed the hearts of everyone in his town. The script for the short film is based on his mother, Patricia Titus’ essay she wrote and submitted to the local newspaper. Based out of, and produced in, the Ohio Valley region, “Jacob’s Turn” also received a nomination in the Human Interest – News category.

A long list of films of varying lengths about people with Down syndrome is available on the Sprout Flix website, including several from Australia.

Down in Times Square

Dave Hingsburger, Rolling Around in My Head, 22nd September 2013

... Not that it matters to anyone, I suppose, but I think that the organisations serving people with Down Syndrome do an awful lot right. They seem not to be afraid of the 'identity' of those they serve even as they focus on the 'personhood' of those they serve. The message that 'difference is difference' but 'the same is the same' is a difficult one to navigate but they do it so well ...

The Important Ingredients of Tom and Lydia’s Marriage
Posted on May 30, 2013
Linda Orso, DSA Greater St Louis blog, 20th May 2013
... While it would be fun to share their love story of how their relationship blossomed and grew over three years, we would rather share with you the important ingredients we believe enabled the relationship and marriage to happen ...

Converstation - with Stella Young
Steve Cannane, Conversation, ABC Local Radio, 24th September 2013
Audio/MP3.
As the editor of ABC's Ramp Up website, Stella's keen to challenge perceptions of disability, so that people aren't simply classified by medical diagnoses. For her, disability is more often defined by poor access in built environments and inconsiderate behaviour than a person's physicality. Stella's advocacy began as a teenager in country Victoria, when she conducted a wheelchair access audit of her local main street. More recently, she's been heavily involved in the debate over Australia's need for a national disability insurance scheme.

Nightmare Come True: Police Training, Autism, and Down Syndrome

Jisun Lee, Kimchi Latkes, 20th September 2013
Sometimes I spend time worrying about my infant son’s future. My son with Down syndrome. My son with a disability. My son, a human being. Among the things I worry about is that the world will see him as nothing but a problem. An anomaly, a special circumstance, some thing to be ”handled” and “managed”.

In First, UN Holds High-Level Disability Summit

Shaun Heasley, Disability Scoop, 24th September 2013
Advocates and dignitaries from around the world converged at the United Nations on Monday for the international body’s first-ever high-level meeting on disabilities. With more than 1 billion people with disabilities globally, those behind the historic event at U.N. headquarters in New York said the gathering was convened to encourage inclusion of those with disabilities in all aspects of life ...

Awards Celebrate Innovative Ways of Living for People with Disability
ADHC, 19th September 2013
Minister for Disability Services John Ajaka has congratulated the winners and finalists of the 2013 NSW Disability Industry Innovation Awards presented at a ceremony in Sydney ...

Project Officer - intellectual disability mental health, UNSW

An interesting job opening at the University of NSW:

The Department of Developmental Disability Neuropsychiatry, School of Psychiatry is seeking a highly motivated Project Officer to work in the field of intellectual disability mental health.

Description and application details are here.  Applications close 13th October 2013.

This weekend ...

Best wishes to all the swimmers participating in the 

Down Syndrome Down Under Swimming Organisation's

2nd Down Syndrome National Swimming Championships

at Knox Grammar School, Wahroonga

28th - 29th September 2013

Spectators and cheer squads are welcome.

Details about 'Dwell ... a triple bill' at the Byron Centre, Byron Bay

Thank you, Dr Dennis McGuire

After 22 years, Dr Dennis McGuire is leaving Adult Down Syndrome Centre in Chicago.  Dr McGuire, a social worker, has been co-director of the Centre with Dr Brian Chicoine (a physician).

While we are sorry to hear that he is leaving the Centre, we are very grateful for the excellent work he has done over so many years, in his practice with individuals, as a speaker and writer, and join many thousands of people with Down syndrome and their families around the world in wishing him well.

Some of Dennis's best known writing, providing information and reassurance with a dose of good humour, include these three articles, available from the (US) National Association for Down Syndrome website, here:

• Self Talk (expanded in Mental Wellness)
• The Groove (expanded in Mental Wellness)
• If people with Down syndrome ruled the world ... originally delivered as an address at the (US) National Down Syndrome Congress's annual Convention in 2005, and circulated worldwide since.

and these two very popular and highly regarded books, both co-authored with Dr Brian Chicoine:

• Mental Wellness for Adults with Down Syndrome 
• The Guide to Good Health 

(Both books are available for members to borrow from the Down Syndrome NSW library.)

Library Thursday: 26th September 2013

Six Percent. Down's Syndrome: My Photographs, Their Words 
Graeme Miller

This is a book of black and white documentary photographs by photographer Graeme Miller of Photohonesty in collaboration with Down's Syndrome Scotland. The book was published to mark World Down Syndrome Day in March. The photographs are accompanied by small amounts of text from the subjects. The book presents intimate and at times poignant images of a number of families.

Pandora Summerfield, CEO of Down's Syndrome Scotland, explains the title in her introduction

Six Percent, is taken directly from statistics presented by the UK Cytogenetics register which show that of all the pregnancies diagnosed as being Down Syndrome, 6% result in a live birth, 91% are terminated and a further 3% of babies are miscarried, or die at birth.

Well worth a look.


Open the gates for stories about disability

Robert Hoge, The Drum/Ramp Up, 19th September 2013

Around one-fifth of the population has some form of disability, but rarely does it feature in literature. We must encourage storytellers to engage with themes about disability. It's time to tear down that wall ...  

• What are your favourite fiction titles featuring characters who have disabilities?

starecase, issue 2

The second issue of online magazine starecase has just been released in several formats, and its website launched.

Call for photos - Down Syndrome Australia

Down Syndrome Australia needs photos! Can you help? 

Down Syndrome Australia is developing a new range of resources including a national New Parent resource and a Transition to School resource. 

We are looking for clear, high resolution photos to include in these, and would love families to let us know if they have photos they are happy to share in these national resources. If so, we will send you a release form to consent to their use.
Thank you so much in anticipation!

“Will my child ever be done with therapy?”

Image: Pixabay.com

Jennifer Bekins's experience and expertise as a speech and language therapist and family member of people with Down syndrome is evident in her blog, Talk - Down syndrome, like this recent post on the potential for guilt about therapy:

Beyond Therapy Burnout and Parent Guilt
16th September 2013
Parents of children with Down syndrome are often familiar with the three therapies most frequently recommended for their child: physical, occupational, and speech therapy. Therapy frequently begins when the child is just months or even weeks old. 

Once in an established therapy routine, parents may find themselves asking, “Will my child ever be done with therapy?”

Sexual Health Education: courses for teachers and service providers

Family Planning NSW provides training across NSW, information and resources to support people with disability in the area of sexuality, relationships, and reproductive and sexual health.  Readers might find the following workshops of interest.

Sexual Health Education for Life: the PDHPE Curriculum for students with disability
22nd November 2013
Ashfield

A one day course for primary and secondary teachers who deliver sexual health and relationships education (SHRE) to students with intellectual disability. Strategies for teaching positive self-esteem, relationship skills, positive sexuality and safety are presented. Topics covered include sexuality model, myths and barriers and their impact on people with disability, curriculum scoping and sequencing, answering challenging questions, teaching strategies and working with families. Participants will also have the opportunity to view and use a range of SHRE resources.

• More details for the workshop are here

Down There
9th October 2013
Auburn

This one day workshop is designed to build confidence and support for service providers to talk about reproductive and sexual health issues with culturally and linguistically diverse (CALD) communities. Down There also now includes new content to update participants on core reproductive and sexual health topics including STIs and Contraception.

• See the flyer for course aims and objectives.

Contact:
Family Planning NSWCourse Administration

02 8752 4300
education@fpnsw.org.au

The Family Planning NSW website lists a number of resources and information available about puberty and relationship education for people with disability and their families and carers. 

Federal department's application for exemption from Disability Discrimination Act

Many disability advocates are opposed to approval of this application by the Federal Department of Families, Housing, Communities and Indigenous Affairs (FaHCSIA), for a three year exemption from the Disability Discrimination Act. The exemption would allow Australian Disability Enterprises to use a wage assessment tool that has been found by the High Court to be discriminatory, for a further three years.

The Human Rights Commission invites comments on the application, until 30th October 2013 - details here.

• Commonwealth discriminates against people with intellectual disability, High Court rules, National Council on Intellectual Disability, 10th May 2013

• Workers with disabilities win landmark wage fight, Lindy Kerin, The World Today (ABC Radio), 11th January, 2013

People with Down syndrome in the news ...

Good sport Brenton calls his own shots 

Emma Spillet, Illawarra Mercury, 15th September 2013
For Woonona sports lover Brenton Ashford-Potter, having a disability has not stopped him from pursuing his athletic goals. The 23-year-old, who has Down syndrome and dyspraxia, has completed a coaching accreditation, training both mainstream players and people with disabilities, as well as participating in a range of sport-related activities. 

Brenton's achievements were the topic of discussion at a workshop in Wollongong (earlier this month), which aimed to help disabled people manage their own care ...

Amplify your art 2013 Grant Recipients: Gerard O'Dwyer

Accessible Arts, September 2013

Gerard O'Dwyer is an actor who uses his profile to challenge entrenched stereotypes, particularly of people with an intellectual disability ... Onscreen Online is an accessible digital-media skills, acting and voice development project. It entails Gerard being trained and mentored by industry professionals across digital media, voice and film production. 

Links to profiles of all twelve Amplify your art grants recipients for 2013 are on this page of the Accessible Arts website.

Hahnville grad with Down syndrome becomes advocate for those with disabilities

Kyle Barnett, St Charles Herald Guide,13th September 2013

Craig Blackburn has a motto by which he lives.

“Never give up. That’s my message. Never give up,” he said. “If you have fears don’t look back, look ahead.”

That is a message the 34-year-old Hahnville High School graduate has been carrying through his entire life, and Blackburn has had to overcome a lot. He was born with Down syndrome as well as a heart defect that had to be repaired through open heart surgery when he was an infant.

Man with Down Syndrome, father walk over 300 miles for awareness

Devon Dolan, KSL Utah, 12th September 2013

A 25-year-old man with Down's syndrome and his father laced up their shoes and set out to achieve what they never thought possible — they are walking across the state. The father and son team have made a goal to walk 300 miles from Washington County to Temple Square. Dave Allen said it's been a long journey, but every step has been worth it ... Bob couldn't walk even a mile seven months ago.

First Spanish TV presenter with Down’s syndrome to go on air

Letizia Orlandi, west, 12th September 2013

Spain’s first TV presenter with Down’s syndrome has made his debut on a programme that promotes the integration of people with disabilities in social and working life. Pablo Pineda, who is well known in Spain not only for being the first person with Down’s syndrome to obtain a university degree, but also for his performance in Yo Tambien, the award-winning 2009 film for which he won the Concha de Plata (the Silver Shell) for best actor ...

Fighter with Down syndrome wants to get in ring

Colette Bennett, HLN TV, 16th September 2013

When 23-year-old mixed martial arts fighter Garrett Holeve was told he couldn't enter the ring to fight an opponent on August 3, he was more than just frustrated -- and it wasn't because he'd trained tirelessly for the fight for two months.

Garrett Holeve said he believes the fight was canceled because he and his planned opponent, ​David Steffan, both have disabilities. But he's not ready to give up yet. With the help of his dad, who spoke to HLN in a phone interview, he's seeking another way to enter the ring.

Modeling dream comes true for girl with Down syndrome
Liz Fields, (US) ABC News, 22nd September 2013
Karrie Brown has all the makings of a model: energy, enthusiasm and a smile that could melt stains off your sleeves.

Hunter Down Syndrome Family Picnic

In lieu of Step UP! for Down syndrome (formerly Buddy Walk) not being held in the Hunter this year, a family and friends picnic day will be held to celebrate Down Syndrome Awareness Week in the region. 

Join Merran Manulat and her son Ryder at Newcastle Foreshore Park for a great day together.

Sunday 20 October

11am - 2pm

Newcastle Foreshore Park 

(grassed area near Carriageway Sheds)

Bring picnic lunch, beverages and rug

Contact: merran.manulat@gmail.com for more information

DS NSW Family Picnic Day in Sydney, July 2013

Contact: merran.manulat@gmail.com for more information

Weekend reading and viewing: 21st - 22nd September 2013

“Silencing” the extra 21st chromosome
Voices at the Table Advocacy (VATTA), 10th September 2013
... scientist(s) may be able to turn off the extra chromosome that makes people have Down syndrome. When I heard about this I had mixed feelings. Some talk was about “curing” Down syndrome. People with Down syndrome are not sick. It is only a small part of them and they do not need to be cured. There some positives to this research that make me feel hopeful ...

Beyond the gift,
Dave Hingsburger, Rolling Around in My Head, 14th September 2013
... She wasn't setting out to smash stereotypes, she was setting out to make a gift. And it was the fact that she had a gift to give that I hope people notice ...

'When he came along I was just a child myself and suddenly I had a child of my own with special needs.'
Mail Online, 17th September 2013
A teenager who became the youngest mother in Britain to a Down’s Syndrome baby after falling pregnant aged 15 has spoken of her pride in proving her doubters wrong. Despite being just a child herself, single teen mother Catherine Moore, now 19, refused to give her baby up after learning he had Down’s Syndrome, vowing to raise him herself despite concerns that she wouldn’t cope ... 
Note: the article says that ... 'Recent figures show up to 90 per cent of Down's babies are aborted - a figure which Catherine finds distressing.' The 90% estimate refers to pregnancies in which a definitive prenatal diagnosis is made in some populations.

I'm not a great parent just because I have a kid with special needs

Ellan Seidman, Love That Max, 18th September 2013
... The help we give Max is part of parenthood; we just happened to get a kid who needs extra assistance. When people admire me or Dave for the simple act of parenting Max, it makes me hyper-aware that they think it must be so tough—a burden, even—to parent a child with special needs. Considering parents of kids with special needs to be saints overestimates us, and underestimates our children ...

For your eyes
Esther Joosa, for Down Syndrome International, 18th September 2013
... As part of the events (at the 11th World Down Syndrome Congress in South Africa in 2012), to show their skills with communicative technology, the Conference provided opportunities for young participants with Down syndrome to enter a photography competition. Looking at the photographs, shows their engagement and that each camera person, not only has a story to tell, but is capable of doing so ... (Two Australian photographers are featured in this article).

Why Sign with your Child?

Cyndi Johnson, Down Syndrome Research Foundation, 17th September 2013
... Then along came my daughter R, born with Down syndrome. I knew instinctively that signing with her was anything but faddish. When I learned that hearing loss is common among children with Down syndrome, and that their speech and language is significantly delayed, I was determined to provide R the tools to communicate with her hands ...

Disability reform is enough to keep any minister busy

Stella Young, Ramp Up, 19th September 2013

Given Australia's lacklustre record and the number of people relying on improvement, let's hope we don't rue the abolition of a dedicated minister for disability reform ... Awaiting the announcement of Prime Minister Tony Abbott's new Cabinet appointments earlier this week, there was one question on my mind: Would Senator Mitch Fifield be our new minister for disability reform? I was hopeful. In his role as shadow minister for disabilities, carers and the voluntary sector, Fifield was a tireless champion ... (and) he understands that disability reform isn't just about the NDIS; it's about education, employment, infrastructure and inclusion in all aspects of Australian life.

From a service to a life
Ruth Gorman, Learning Disability Today, 12th September 2013
... I felt that if paid support could, in some scenarios, be replaced by richer, natural and more sustainable support networks and community connections we could enable people to enjoy a better life. Person-centred thinking was central to this approach ...

Disability care sector needs thousands of workers
Elise Worthington, ABC News, 20th September 2013
State and federal governments are working to more than double the disability sector workforce ahead of the roll-out of the National Disability Insurance Scheme (NDIS). A draft report by PricewaterhouseCoopers obtained by the ABC shows more than 80,000 extra workers will be needed across Australia. That includes more than 20,000 management and administration positions and a similar number of personal care assistants ...

When disability discrimination is legal

Alecia Simmonds, Daily Life, 18th September 2013
If Vincent van Gogh, Ludwig van Beethoven, Helen Keller or Frida Kahlo were alive today and in a moment of wild-eyed madness decided to permanently migrate to Australia, would we accept them?

I suppose you could argue that they’re highly skilled and their social contributions are quite possibly monumental. But judging by the requirements of Australian migration law the odds are against them. Why? Because they all had disabilities: Van Gogh suffered depression, Beethoven was deaf, Keller was blind and Kahlo had polio.

In order to migrate to Australia you have to pass a health test where disability is taken into consideration. Applicants are assessed based on the potential cost to the state of their disability ...

This weekend ...

12th World Down Syndrome Congress 2015: India

The 12th World Down Syndrome Congress is scheduled to be held in Chennai, India, in 2015.

The Congress website is now live.  Check in often for further information about speakers, the program,  social events, facilities and registration details.

Expertise for siblings

ExpertBeacon is US website aiming to provide expert advice and assistance to consumers over a range of topics.  Their 'Raising kids with special needs' section has recently published two articles from experts at the Massachusetts General Hospital Down syndrome program addressing matters of interest to siblings:

Helping sibs of kids with disabilities manage embarrassment
Brian Skotko and Susan Levine, ExpertBeacon, 12th September 2013

All sibling relationships are almost guaranteed to involve a humiliating moment or two. However, when you have a brother or sister with intellectual disabilities, you become more aware of the reactions of others. Does your sister embarrass you because of her disability? Are people noticing her--and you--because of her appearance? ...

Helping sibs advocate for people with intellectual disabilities
Brian Skotko and Susan Levine, ExpertBeacon, 19th September 2013
Brothers and sisters across the country are realizing that they can make a difference on behalf of their siblings with intellectual disabilities. Do you want the world to recognize all of the talents that individuals with disabilities have? Is there an injustice that you want to correct? Perhaps you are looking to become more involved in the lives of people with disabilities through volunteer service?

If you are having these ideas and feelings, you can become an advocate of people with disabilities. Advocates spread the truth, correct misconceptions, and stand up for the things they believe in. There are countless ways that you can become an advocate for disabilities ...

Arts news and events

Short film competition - Tweed Shire

As part of the 2013 Tweed Shire Access and Inclusion Awards, an inaugural short film competition is being held to encourage people to tell their stories about access and inclusion. Everyone living in the Northern Rivers or Gold Coast is invited to submit a short film - up to three minutes - on the theme:

My Life, My Story, My Community 

An accessible and inclusive community means creating possibilities. It enables people to live their lives according to their individual interests, needs and aspirations, no matter who they are or their circumstances. It means being able to physically move around the community, feeling included as a member of the community and being treated with equality and dignity ...

• Competition details are on the Tweed Shire Council website, here 

Dwell – exhibition, performance and panel discussion in the Northern Rivers
Dwell – a triple bill connects emerging and professional artists with and without disability from the Northern Rivers to create three short dance works, which will be performed at Byron Theatre on Saturday 28 September 2013. This cross art form project brings together dancers, visual artists and musicians to produce a dynamic recital. The performance is preceded by the opening of an associated exhibition and will be followed by a Q&A panel discussion including Accessible Arts North Coast Manager Julie Barratt ... read on at Accessible Arts

Provocative Supported Studio forum at MCA 
The one-day forum, Supported Studios: possibility and potential is an initiative of Accessible Arts designed to foster greater artistic exchange and as a consequence, greater artistic currency for supported studios within the Australian visual arts sector. Presented in partnership with the Museum of Contemporary Art, Australia, the forum will be held at the National Centre for Creative Learning at the Museum of Contemporary Art (MCA) on Thursday November 7. MCA Senior Curator Glenn Barkley is a key speaker and will address the end of Outsider Art and what this means for curators and the museum.

This forum will be of value to writers, curators, gallery directors, educators, collectors and those working in creative industries. By creating a framework for discussion and networking, Supported Studios: possibility and potential will scope possible futures for supported studios in Australian contemporary art.

Thursday 7 November 2013 
Museum of Contemporary Art, Sydney

• Details from the Accessible Arts website, here

Diversity in dance

Christine Harris-Smyth, Ramp Up, 13 Sep 2013
Inclusive dance practice is growing across the country, with professional integrated performing companies in Victoria and South Australia and soon, Christine Harris-Smyth hopes, in New South Wales too ...

• Photo gallery from Second Skin (referred to in the article above) - several people with Down syndrome took part

Accessible Arts releases free resource for global integrated dance community

Inclusive dance practice is growing both internationally and Australia-wide, with professional integrated performing companies in Victoria and South Australia and soon, we hope, in New South Wales. To meet the need for resources for participants and practitioners, Accessible Arts has revised and reissued Positive/Negative - Writings on Integrated Dance. First published in 2000 Positive/Negative has been updated to reflect current practice.

Accessible Arts CEO, Sancha Donald notes the burgeoning of inclusive dance practice across the arts and disability sector and believes that the rerelease of Positive/Negative is timely. Donald explains “Positive/Negative is a much needed resource for dance teachers, choreographers and dancers with disability. We provide it with the intention that practitioners will use Positive/Negative to grow and improve integrated dance practice across, NSW, Australia and indeed globally.”...

• Subscribe to the Accessible Arts Newsletter to keep up with arts news and events across NSW

NDSC 2013 Convention sessions recordings online

from the (US) National Down Syndrome Congress:

If you attended our convention in Denver (in July 2013), you know what an awesome learning experience it was. Now, you can listen to 55 of the conference workshops - which is probably about 50 more than you were able to attend while you were there! 

If you were unable to attend this year's convention, here's your opportunity to learn from the best, on topics that cover the lifetime of individuals with Down syndrome. 

These recordings will be available for your unlimited viewing/listening until July 2014. 

Of course, it is impossible for these recordings to capture the excitement and energy of our "giant family reunion", but you will be able to hear the latest developments and advancements from the Down syndrome community's leading voices, which were audio-recorded with sync to the presenter's PowerPoint (if used).

Some sessions from the Down Syndrome-Autism track are included. 

Access to the 2013 conference recordings is $45 for NDSC members and $75 for non-NDSC members.

• Register/login here. 
• Complete list of recorded presentations.

Short survey on voting in the Federal election

More from People with Disability Australia:

Following last week’s Federal Election, we want to hear from people with disability across Australia about your experience of voting.

PWDA has put together this short survey so that YOU can tell us about your experience, positive or negative, of voting in the 2013 Federal Election.

The survey will be open for 2 weeks until midnight Sunday 29 September

Domestic violence and women with intellectual disability: training programs

From People with Disability Australia:

Women with intellectual disability experience abusive and violent relationships – both romantic and otherwise – at exceptionally high rates. Many programs designed to develop relationship skills and prevent violence are not accessible to them. Unfortunately, many service providers also mistakenly believe that women with intellectual disability do not need these skills, contributing to their vulnerability. 

This FREE training program is designed to change all of that 

This is a primary prevention program, meaning that it is specifically designed to prevent personal, intimate partner, domestic and sexual violence before it happens. It takes a broad approach, addressing both service providers and women with intellectual disability to ensure coherence in supporting women in their personal lives. 

The training program is being run in three key regions around NSW. (Specific locations will be available upon RSVP). We are seeking your assistance particularly in reaching women with intellectual disability and encouraging and supporting them to attend. As a primary prevention program, this training is for all women with intellectual disability, including those not currently in a relationship.

• Hunter Valley: Wednesday 2, Thursday 3 and Friday 4 October 2013 

RSVP Weds 25 September

• Sutherland: Monday 25, Tuesday 26 and Wednesday 27 November, 2013 

RSVP - Monday 18 November

• Southern Highlands: Wednesday 11, Thursday 12 and Friday 13 December, 2013 

RSVP - Weds 4 December

Much more information about the content and purpose of the program and registration is available from the People with Disability website, here

Federal Minister responsible for disability

The new Federal Ministry has been announced, and will be sworn in tomorrow by the Governor General.

Senator Mitch Fifield (Liberal, Victoria), who has previously been the Shadow Minister for Disabilities and Carers, has been appointed Assistant Minister for Social Services, and will be responsible for matters relating to disability.

Coalition commitment to entitlement based scheme - media release, People with Disability Australia, 17th September 2013

MINISTERIAL APPOINTMENT FOR AGEING AND DISABILITIES

Media release, 17th September 2013, Senator Mitch Fifield, Parliament House Canberra ACT 2600
As Assistant Minister for Social Services I am delighted to have responsibility as the dedicated minister for ageing and disabilities. Having held the disabilities and carers portfolio for the Coalition for the past four years I am extremely pleased that there will be continuity in front bench representation at ministerial level for Australians with disability, their families, carers and the organisations that support them.

The Coalition is committed to the full implementation of the National Disability Insurance Scheme and this will be a priority as minister. Making a difference in the employment of people with disability will also be an important focus. 

With responsibility for disabilities and ageing under the one minister, the role of carers in the lives of ageing Australians and people with disability will fall within the one portfolio. The role of carers of all ages cannot be underestimated. This has been highlighted by Mr Abbott’s annual Pollie Pedal bike ride which for the past two years has raised awareness and funds for Carers Australia. 

I am looking forward to the added ministerial responsibility for ageing. The sector is the best teacher for an incoming minister and I look forward to getting to know and working on reform with those in this important area.

Two reflections on families, by families ...

10 Reasons I’m Blessed to Be Raising My Two Kids with Down Syndrome
Eliana Tardio, Living and Loving with Down Syndrome, 22nd August, 2013
It has been more than 6 years since my daughter was born. Her unexpected diagnosis of Down syndrome kept me frozen and living with uncertainty for her first few weeks of life. I already had a child with Down syndrome, my 2 year-old son, and becoming the mother of two kids with Down syndrome really made me think of the future and my ability to take care of two kids with special needs. (This blog is also published in Spanish)

Who is your real-life Superhero?

Paul (Emily's Dad)  Orange Juice Flavour Sky, 20th August 2013

Superheroes are recognised as such by others. They themselves think what they’re doing is normal, nothing extraordinary, no super powers - just getting on with life and being themselves. Superheroes don’t have to try to be superheroes just like chickens don’t have to try to be chickens ... Our family superhero is my wife Sheron.

Register now for Step UP! for Down syndrome 2013: Sydney - Wagga Wagga - Illawarra

Online registration for Step UP! for Down syndrome is NOW OPEN

We have set an ambitious national online fundraising target of $200,000 and we hope we can count on your help and participation again to assist us in reaching this goal.

Step UP! for Down syndrome is shaping up to be bigger and better this year with participation from every Australian State and Territory and the opportunity for national sponsorship. Please find your ‘Save the Date’ card with all the details.

This year, registering to attend the event and creating a Step UP! page are both part of the one simple online process. 

Information about Step UP! for Down syndrome has been sent to all Down Syndrome NSW members - it can be reviewed here.

Step UP! will be held in three locations in NSW this October: SYDNEY Sunday 13th October 9.00-9.30am for 10am start Meet: First Fleet Park, Circular Quay Finish: Milson Park, North Sydney WAGGA WAGGA Sunday 20th October  10.30am for 11am start Meet: The Botanic Gardens Finish: Wagga Music Bowl ILLAWARRA Sunday 27th October 9.45am for 10am start Meet: Stuart Park, Wollongong Foreshore walk and return If you have any questions about this year’s event, please do not hesitate to call Down Syndrome NSW on 9841 4404 or email us stepup@dsansw.org.au Thank you again. We look forward to seeing you there! Copyright © 2013 Down Syndrome NSW, All rights reserved.

Luke Lewis eBay auction for Down Syndrome NSW

 

NSW State of Origin footballer, Luke Lewis, has generously made a number of autographed items available for auction to raise funds for Down Syndrome NSW. 

The auction will take place on eBay, bidding will close on 19 September 2013.

Luke Lewis framed football boot

Luke Lewis - hat

  

NSW State of Origin jersey

Weekend reading and viewing: 14th - 15th Septemer 2013

UnBard TV... unbarring the arts
Australia's only Arts and Disability weekly television program
Foxtel's Aurora Channel 8th September - 22nd December 2013

I'm extremely proud to support the Sunnyfield UnBard arts and TV program. UnBard will be Australia's first accessible creative community forum, enabling thousands of people to share and access Community, Culture and Arts programs by showcasing drama, music, dance and multimedia activities created through collaborations with people with disabilities, independent film makers and emerging artists. It will be a positive platform for people with or without a disability to share their creative stories, showcase their individual talents and celebrate their community achievements. UnBard TV will engage and capture your imagination and open the doors for everyone to enjoy. Congratulations to Sunnyfield on this groundbreaking innovative project." Rachel Ward - Ambassador for Sunnyfield

My story, my goals: Leigh Creighton

Leigh Creighton for DisabilityCare Australia, July 2013 (video 1:17)

A short video, shows that Leigh is a man who can speak for himself, and knows what he wants.
Leigh also features in this local news story about being a speaker at a My Choice Matters event in Taree on Tuesday next.

5 Compliments you need to stop giving about children with Down syndrome

Lexi (Sweatpants) Magnusson, Scary Mommy, 12th September 2013
... Then there are times…well… that well-meaning, very nice people say things that just drive me crazy. I know that they are just trying to be nice. But whether it’s because I hear these things all of the time, or because they just aren’t the reality of the world I live in, there are a few compliments that make me batty…

Need a Perspective Change?
Trudy Bourgeois, Huffington Post, 9th September 2013
If you've known me for a while or followed along on social media, you know that we have a 30-year-old son with Down Syndrome. His name is Adam. And let me tell you something... that boy has taught me some of THE MOST POWERFUL life lessons over the years. Here's one of them ...

Sadie
Brittany Nott, Down Syndrome Research Foundation, 12th September 2013
Running down the hallway, I could always hear her two footsteps right beside me. The one thing I could always count on would be that Sadie, my cousin was always right beside me. She is 16 years old so we are one year apart. Over the years Sadie has taught me countless lessons without even realizing it ...

There are around 250,000 people with Down syndrome living in the US – not 400,000

Frank Buckley, Frank Talk - Down Syndrome Education International, 12th September 2013

A paper published recently in The Journal of Pediatrics estimates the population of people with Down syndrome alive in the USA in 2008 – not the oft-stated 400,000. Even this may be an overestimate. It is important to understand the size and the demographics of populations of people with Down syndrome in order to plan services. In an important paper, recently published online by The Journal of Pediatrics, Angela Presson and colleagues present an estimate of the current population of people with Down syndrome living in the USA in 2008, which they calculate to be 250,700 with a 90% uncertainty interval of 185,900-321,700 ... Analysis of how the revised estimate was reached.

Keeping Adults with Down syndrome Healthy
Dr. Alison T. Schwartz, clinical co-director of the Mass General Down Syndrome Program, and Ben Majewski, self-advocate resource specialist, talk about how to keep adults with Down syndrome healthy.

Presumption
Lene Andersen, The Seated View, 10th April 2012
... How dare you presume to decide what makes life worthwhile? How dare you say that because this person can't walk, that person has an intellectual disability and the one over there lives with chronic pain, their lives are not worthy of being lived? Who are you to judge? By making these statements, you have proven yourself to not have the capacity to imagine a situation other than perfect health and therefore you cannot be trusted to make decisions about anyone else's life ...

The wonder of discrimination

Shakira Hussein, Ramp Up, 10th September 2013
As a brown-skinned Muslim and single mother diagnosed with multiple sclerosis, Shakira Hussein discovers the main lesson that some people seem to draw from their experience of discrimination is how to dish it out to others.

Pathologising normality in intellectual disability
Peter Smith, LINK Magazine, Vol 22 Issue 3, August 2013
... this particular Elvis has a moderate intellectual disability with comorbid mental illness and lives right here in Australia. But, if you tried to ignore the Elvis persona, you'd be greeted with silence. So as a support worker you had to buy into the gig or be frozen out. Normal behaviour, abnormal behaviour, delusional behaviour – what label would you like to give it? Staff fell into two camps: normal and you went along for the ride, or abnormal and you tried to ‘extinguish’ the behaviour.

News, commentary and resources related to the NDIS (DisabilityCare Australia) (6)

Disability Care Australia eNews #2 (August 2013)

Will Disability Care work for regional Australia?

Alex Blucher, Tasmanian Country Hour, ABC Rural, 28th August 2013

Disability Care has been lauded as a revolutionary scheme that will change the lives of close to half a million Australians. It is designed to put the power in the hands of the people who are living with permanent and significant disabilities. But how will the scheme ensure people living with a disability in remote areas don't fall through the gaps?

Charities urged to boycott disability 'freeloaders'

Sue O'Reilly.The Australian, 26th August 2013
Private enterprise is cashing in on the national disability insurance scheme, with charities and government officials being charged up to $5000 a head to attend conferences on the multi-billion-dollar program's rollout. Outraged campaigners have called for a boycott of the Melbourne and Sydney conferences organised by the Sydney-based Criterion Conferences, which will be addressed by leading figures in the rollout of the NDIS, now called DisabilityCare Australia. 

View online - subscribe to receive NDCA News via email

The latest issue issue of NDCA News includes a guest blog from Senator Mitch Fifield, the Coalition Spokesperson for the National Disability Scheme.

"The Australian Parliament has a shared commitment to provide a better deal for Australians with disability. The Coalition has enthusiastically supported each milestone on the road to the National Disability Insurance Scheme (NDIS). 

In the words of Prime Minister-elect Tony Abbott “the NDIS is an idea whose time has come.” 

Our support for the NDIS is unequivocal ... read the whole post here.

Centre for Disability Studies workshop

Interaction: The key to good quality support for people with multiple disabilities

Workshop with Dr Sheridan Forster

30th September and 28 October 2013  
Camperdown

This 1½  day workshop will provide opportunities to discuss and problem solve issues relating to supporting people who have severe difficulties with communication (for example, people who have profound and multiple disabilities, people with autism and intellectual disability, people who appear to withdraw from interaction, and those who have behaviours which interfere with positive interactions).

• To register see flyer

stare case

stare case Issue 1, Spring 2013 is the first issue of an online Australian community newspaper written for and by people with a disability.  It will be published 'at spasmodic intervals, with a miniscule budget':

Share widely, talk, contribute and let's make this OUR magazine. You can email starecasenews@gmail.com with letters, stories or rants.

A snippet from this first issue:

The values of inclusion 

Everyone is born in
All means all
Everyone needs to be in
Everyone needs to be with
Everyone is ready
Everyone needs support – some more than others
Everyone can communicate
Everyone can learn
Everyone can contribute
Together we are better

• stare case on Facebook 

New advocacy resource for NSW - 'A Parent’s Toolkit: school issues for students with a disability'

A Parent’s Toolkit: school issues for students with a disability by Disability Advocacy NSWAdvocacy Coordinator Sonia Powazuk is now available to download from the DS NSW website, here.

Much of the reason for this toolkit is due to the large number of requests DA NSW receives each year from parents whose children are experiencing problems at school – many of whom have been suspended or expelled for behaviours associated with their disability. 

The aim of this toolkit is to provide a comprehensive guide for parents and advocates in relation to the NSW education system. The toolkit provides information on support funding, discipline, WH & S issues, bullying and discrimination. We hope that this toolkit will provide students with disabilities as well as their parents and advocates with useful information, including self-advocacy skills.

Disability Advocacy NSW provides advocacy services for people with disability in the Hunter, New England and Mid-North Coast regions of NSW Australia.

People with Down syndrome in the news

Scout with Down syndrome completes Eagle project
Mark Price, Charlotte Observer, 7th September 2013

William Fitzgerald Jr. finished his Eagle Scout public service project Saturday, after a series of frustrating delays that included puncturing an irrigation line two weeks ago. His mission was to erect a 40-foot flagpole and plaque outside Friendship Missionary Baptist Church on Beatties Ford Road – no easy task for any 15-year-old boy, let alone one with Down syndrome. But if William’s disability gives him anything, it’s determination. He was going to put up the flagpole, one way or another ...

Baby Prince George Raises Awareness For Down Syndrome

Ellen Siedman, Parents.com 10th September, 2013
Duke and Duchess William and Kate are purchasing a painting from an established British artist for Prince George’s nursery.  That wouldn’t be such headline-making news except the very talented artist, Tazia Fawley, happens to have Down syndrome. This could be an amazing thing for kids and adults with DS, and other special needs.

• BBC TV news interview with the artist.
• Daily Mail article with many more photos.

Meet a weightlifter who's lifting spirits

Steve Hartman, CBS News, 8th September 2013

Born with Down syndrome, Jonathan Stoklosa, 31, has the power to lift more than weights. 

Read more here: http://www.charlotteobserver.com/2013/09/07/4295214/scout-with-down-syndrome-completes.html#.Uiv162SSBe4#storylink=cp

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Children with Down Syndrome: Health Care Information for Families

These family-friendly guidelines, published last week, are based on the professional paper released by the American Academy of Pediatrics in 2011:

Image: © Denys Kuvaiev | Dreamstime.com

The American Academy of Pediatrics (AAP) has developed a special guide to help parents and families of children with Down syndrome. This document focuses on medical topics that affect physical health. Other issues can affect social and school success. While these issues may not require doctors or other medical resources, they are still important issues for children with Down syndrome.

Click here to download the complete guide, "Health Care Information for Families of Children with Down Syndrome" (PDF). 

The medical issues for a child with Down syndrome change with age. For this reason, the document is divided into several age groups (available as PDF downloads below). Each age group includes a list of issues that may be important to your child at that age.

The information in these guidelines has grown with the help of families, Down syndrome clinics, and doctors around the world. Most of the information is easy to follow. Many tests only need to be done once. Some areas might need to be looked at again, or even many times, as the child grows to an adult. Some tests or pediatric specialists might be needed that are not available in your area. Your doctor can help to sort out the best next steps when something can’t be done quickly or nearby.  Healthy Children (AAP website)

Sydney Theatre Company and Down Syndrome NSW offer

Taking cues from comic books and action movies, Sydney Theatre Company's new play Super Discount puts a room of actors to the test.

Who will be good? Who will be evil? Together, can they take responsibility for our world? Can we?

Hailed as one of the most inventive, complex and courageous performing arts companies in Australia, Back to Back Theatre returns to Sydney after a series of highly successful international tours with the world premiere of Super Discount.

Sydney Theatre Company and Down Syndrome NSW would like to present you with $15 off preview shows between 20 - 24 September as well as a chance to win a double pass.

Simply use promo word TALENT, when booking online here, for any preview performances between 20 - 24 September.

To go into the draw to win a double pass to Super Discount email STC your details with STC-DSNSW in the subject line.

Available now!

2014 Inclusive Learning Technologies Conference

From Spectronics:

Join us at the ILT2014 Conference!

Spend just five minutes viewing our ILT2014 Conference video. Feel the buzz of this event. Held only once every two years! You'll understand then why you need to join us in May 2014 on the sunny Gold Coast of Queensland in Australia. See you there? Or watch out for online "virtual participant" registrations coming soon too.

• Inclusive Learning Technologies Conference 2014 website

Research news update #7 for 2013

Experimental compound reverses Down syndrome-like learning deficits in mice

Johns Hopkins Medicine 4th September, 2013
Researchers at Johns Hopkins and the National Institutes of Health have identified a compound that dramatically bolsters learning and memory when given to mice with a Down syndrome-like conditionon the day of birth. As they report in the Sept. 4 issue of Science Translational Medicine, the single-dose treatment appears to enable the cerebellum of the rodents’ brains to grow to a normal size.

• Abstract 

Citation: I. Das, J.-M. Park, J. H. Shin, S. K. Jeon, H. Lorenzi, D. J. Linden, P. F. Worley, R. H. Reeves, Hedgehog Agonist Therapy Corrects Structural and Cognitive Deficits in a Down Syndrome Mouse Model. Sci. Transl. Med. 5, 201ra120 (2013).

This article from the UK NHS cautions against misleading mainstream media headlines claiming that the Sonic hedgehog study (above) is a cure for Down syndrome:

The Mail Online suggests there could be a “cure” for Down’s syndrome, saying that scientists have “discovered a way to reverse the learning difficulties caused by the condition”. It is not apparent from this headline that the research in question was carried out in mice, not people with Down’s syndrome.

How Dow syndrome may help unravel the Alzheimer's puzzle
Linda Carroll, NBC News, 6th September 2013
... “It’s a tantalizing and provocative question: Do people with Down syndrome hold the key to the mystery of Alzheimer’s development?” Dr. Brian Skotko, co-director of the Down Syndrome Program at the Massachusetts General Hospital in Boston, said in a telephone interview. “And what can we learn from those with Down syndrome that will benefit the rest of the population?” ...

The link between Alzheimer's disease and Down syndrome

Maureen Wallace, She Knows - Parenting, 20th August 2013
Does Alzheimer’s disease scare you? Does Down syndrome confuse you? The link between the two should excite every parent or loved one of a child with Down syndrome, because identifying that link means the chances of discovering effective therapies are closer than ever.

Anti-Inflammatory Effect of Exercise, via Reduced Leptin Levels, in Obese Women With Down Syndrome

International Journal of Nutrition and Exercise Metabolism 2013, 23, 239 – 244

Recent studies have reported that obese young people with Down syndrome suffer from low-grade systemic inflammation. Whereas this condition may be improved in the general population by regular exercise, the problem has received no attention in the case of people with intellectual disability. Therefore, the authors’ aim was to assess the influence of aerobic training on plasma adipokines in obese women with Down syndrome. ...

Tokyo presentation on the Successful Ageing in Intellectual Disability (SAge-ID) project 
3DN (UNSW), 28th August 2013
Dr Anjali Bhardwaj recently attended the IASSIDD Asia-Pacific 3rd Regional Conference in Tokyo, Japan from 21st-24th August, focussing on ‘Multiformity and diversity: Combining individual care and community-based supports’. Anjali presented work on the Successful Ageing in Intellectual Disability (SAge-ID) project currently being undertaken at 3DN. The presentation included results from the pilot study consisting of 112 participants across NSW and Victoria. The paper was very well received at the conference, with a great deal of interest spurred from the work being conducted at 3DN. The presentation can be accessed via this link.

Factors associated with depression and anxiety in older adults with intellectual disabilities 

A large Netherlands study shows that increased anxiety symptoms are related to diabetes in older people with intellectual disability. The researchers conclude that the results highlight the importance and relevance of screening for diabetes in people with anxiety and depressive disorders and vice versa, screening for anxiety and depression in people with diabetes. People with Down Syndrome in the study were found to be less likely to have symptoms of anxiety.  The study is part of the large Healthy Ageing and Intellectual Disabilities Study, led by Prof Heleen Evenhuis at Erasmus University, Rotterdam.

Citation:

Hermans, H. and Evenhuis, H. M. (2013), Factors associated with depression and anxiety in older adults with intellectual disabilities: results of the healthy ageing and intellectual disabilities study. Int. J. Geriat. Psychiatry, 28: 691–699. doi: 10.1002/gps.3872

Dementia in Down's syndrome: an MRI comparison with Alzheimer's disease in the general population
Diane Mullins et al, Journal of Neurodevelopmental Disorders 2013, 5:19 doi:10.1186/1866-1955-5-19 Published online 20th August 2013
Abstract online. Provisional full text (pdf) is now online, the final draft will be published soon (21/8/2013)

Down Syndrome: The Measure of Intelligence
Vicki Vila, Modern Messy, 20th August 2013
... I discovered that the Down Syndrome Research Group at the University of Arizona is working on this very thing: cutting edge cognitive assessments. The research began a few years ago, and it was big news at that time, so I’m not the first to write about it. But I was curious about the status of the tests, so I contacted Professor Jamie Edgin, a developmental psychologist and one of the group’s lead researchers, and she agreed to an interview.

GONE: 150,000 fewer people with Down syndrome in the U.S.

Mark Leach, Down Syndrome Prenatal Testing, 26th August
The estimated number of people living with Down syndrome in the United States has been 400,000. This number has now been reduced by almost 40 percent. The number 400,000 was based on birth estimates: take whatever the birth estimate was, apply it as a percentage to total number of births and total number of lives, and 400,000 was the number that was arrived at. Last month, the Journal of Pediatrics published online a study that revises this estimate based on two key factors. The new study has already resulted in a revision on the Centers for Disease Control website, which lists the highlights.

Nothing about us without us

Katharine Annear, Ramp Up, 21st August 2013

... Some questions that come to my mind are: Do we want a world without certain types of people? Would we be better off as a society if certain types of people weren't born or could be altered in the very early stages of life through gene therapy? Who decides the research agenda?

National US registry for research into Down syndrome launched.
The US national Institutes of Health has announced the launch of its Down syndrome registry, DS-Connect. This centralized, secure database will link people with Down syndrome and their families to the doctors and scientists working to improve their health and quality of life.

“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”  DS-Connect

• DSA (London) now has a research section on its website.