Down Syndrome Australia's new CEO

It was announced this week that Down Syndrome Australia has a new Chief Executive Officer, Ruth Webber.

Ms Webber worked in politics for many years, as a campaigner, policy adviser, political party official and as a Senator for Western Australia.

After leaving the Senate Ruth has advised a number of peak not-for-profit organisations.

In addition, Ruth is currently Deputy President of the Mental Illness Fellowship of WA, and has served on the boards of Carers WA, Women’s Health Works and the ArtSound FM radio station.

“I’m really looking forward to working with the Down syndrome community. In politics I always worried about the sections of our society that either didn’t know how to access the political system or weren’t able to.”

“I’m hoping I can use whatever skills, networks and knowledge I have to bring the Down syndrome community’s issues to the attention of the government and other key decision makers, in the hope that we can all work together and build a more confident and secure future for people with Down syndrome” said Ms Webber.

Weekend reading, listening and viewing: 31st January - 1st February 2015

Naturally
Michael Steinbeck, Open Future Learning, 28th January 2015
A song about the importance of home.




Dear New Parents of a Baby With Down Syndrome, I Feel Compelled to Tell You This

Jison Lee, The Mighty, 28th January 2015

... I don’t know you, so I will not tell you how you feel or what’s right and wrong. I feel compelled to tell you something, however, because I don’t want you to leave this place alone. You’re not alone. What’s done is done. Down syndrome has entered your life and that will never change, no matter what happens down the road. For that, I consider us connected ...

Hong Kong Down Syndrome Photo Series Challenges Stereotypes
Hong Wrong, 25th January 2015
A new photography project by Frank Freeman aims to challenge societal stereotypes and improve understanding of an important cause…

Watching granddaughter Lucy singing on stage, and grateful for the moment

Beverly Beckham, Boston Globe, 18th January, 2015
There is such joy in Lucy. I don’t always see it. Sometimes I’m too focused on improving her, reminding her to stand up straight, to look a person in the eye when she’s saying hello and goodbye, to slow down her words when she talks ...

My daughter's 'a different type of perfect'

Kelly Dugan, Sydney Morning Herald, 28th January 2015

... people think we are strong, because we just get on with it, we have no other choice. Keep going, just keep going. If I was strong, I would not have bad days. If I was strong, I could deal with the emotions in my life. I don't. I bury them and pretend they are not there.

I have no time for self pity and I do not have the luxury of having time out. I have no choice but to take a deep breath and keep going. I am not amazing, I am grumpy, I am tired, I am scraping through one day to the next. I am just a person that became the parent to a different type of perfect child and sometimes I wish I wasn't ...

The problem with ABC's new disability series, 'Attitudes'

Jacki Brown, Daily Life, 26th January 2015

... Is this series really changing attitudes? Or is it merely reinforcing them? I would argue the latter ...

New online resources from international colleagues

Down syndrome organisations the world over are renowned for their generosity in sharing information, especially for the use of families. Two substantial resources have been released online in the last day or two that will be useful to families everywhere, from the US, and the UK:

• The Winter 2014 issue of Down Syndrome News, published by the (US) National Down Syndrome Congress is now available online, via the NDSC website, here.  The content includes

Speech Intelligibility: Helping Children and Adults Develop and Maintain Understandable Speech (Part 3 of 3) by Libby Kumin. This article is available in both English and Spanish

Your child's strengths: what parents need to know by Ryan M. Niemiec and Karrie Shogren 

How can I teach my child to read ... when I don't have the time and I don't know how? by Judy O'Halloran 

• The Down's Syndrome Association (London) has published eight articles from the Journal, dating from 2009 to 2013, on the dual diagnosis of Down syndrome and autism spectrum disorder.

Research news and commentary #1 for 2015

Clinical Drug Trial for People with Down Syndrome Successful

Brian Skotko, Down Syndrome Program at Massachusetts General Hospital, 26th January, 2015

The results are now in: the Phase 2 clinical drug trial, sponsored by Transition Therapeutics, was a success! As many of you know, our Down Syndrome Program at Massachusetts General Hospital was one of 3 sites in the country selected to participate in this landmark study. We are thankful to the 6 adults with Down syndrome, and their caregivers, who participated at our clinic. Here’s a summary of the study, and what this might mean for your son or daughter with Down syndrome in the future ... click on 'show more' at the end of the introduction to read the summary.

Study Finds Postsecondary Programs Boost Outcomes

Shaum Heasley, Disability Scoop, 20th January 2015
Individuals with intellectual disabilities who attend postsecondary programs are finding greater success in the job market than those who do not pursue further education, a new study suggests.

Graduates of postsecondary programs reported higher rates of employment since completing high school, according to findings published online this month in the Journal of Intellectual Disabilities. The research offers support for a growing number of programs at colleges and universities specifically geared toward young adults with developmental disabilities ...

• Abstract available online

Lines of Enquiry, January 2015
Newsletter of the Centre for Applied Disability Research (NSW)

Rate of Urinary Retention in Adults With Down Syndrome: A Prospective Study
Brian Chicoine and Suela Sulo, Journal of the American Board of Family Medicine, January-February 2015

Down syndrome (DS) is associated with a higher incidence of many medical conditions, but little information regarding urinary retention exists. We assessed the urinary retention rates in a group of adults with DS and compared the characteristics of patients with and without urinary retention ... 

University of Kansas (KU) part of $12.5M grant to prepare young adults with disabilities for careersUniversity of Kansas, 24th November 2014
The University of Kansas is part of a partnership that has secured a $12.5 million grant to help states better prepare young people with disabilities for the transition to postsecondary education and careers ... Researchers in KU’s Transition Coalition, a team that focuses on helping young adults with disabilities, will develop online and blended professional development strategies that educators, rehabilitation counselors, families and others will be able to use to improve practices in working with young adults during transition ... 

Down syndrome students excel in new math teaching program in Canberra and Victoria

Claire Colley, Sydney Morning Herald, 14th December 2014

Maths is the most difficult school subject for 13-year-old Annie Lee, but thanks to a revolutionary new approach to teaching maths to people with Down syndrome it's now also her favourite ...

T21 Research Society

Trisomy 21 Research Society (T21RS) is the first non-profit scientific organization of researchers studying Down syndrome, founded to promote basic and translational research on Down syndrome and to apply new scientific knowledge to develop improved treatments and cures.

Its first international conference, T21RS 2015 is scheduled for 4th - 7th June 2015, in Paris

Clues to genetics of congenital heart defects emerge from Down syndrome study
... individuals with Down syndrome have a high risk of congenital heart defects. However, not all people with Down syndrome have them – about half have structurally normal hearts. Geneticists have been learning about the causes of congenital heart defects by studying people with Down syndrome ...

NSW schools are 'in' - have a great year!

From our Facebook page this morning:

Most NSW students return to school after the long holidays today, with kindergarteners starting later in the week. We wish all returning students with Down syndrome and their families and teachers a very good school year. 

We are especially thinking of the little ones starting 'big' school for the very first time, and adolescents embarking upon the adventure of high school ... all the very best. 

Remember that now, in 2015, many have gone before you - a great deal of expertise and experience exists in schools and with individual teachers, and it will grow with your child's schooling. A generation of families have broken ground in inclusive and special education, there are many effective resources and programs to tap into, and training for teachers, and research into quality education for students with Down syndrome is ongoing. 

And remember we are here also to help you through the bumps. 

Have a great school year!

One of the ways we can help is through community and professional education, like our Embracing Success conference in Sydney, 26th - 27th March - early Bird registration closes on 31st January, then regular pricing is available, so make sure your school has the flyer:

What siblings are saying

Every family questions how brothers and sisters will be impacted by one of them having a disability, the fact of the disability, the impact on everyday life, and of course their life long experiences. Sibling relationships are likely to be the longest that our sons and daughters with Down syndrome will have, so of course we are interested in what they have to say about each other - it's not always what you expect:

We’ve all had the flu! (A sibling’s take on Down syndrome)

Essential Take on Life, 18th November 2014

Before I tell my story, I should probably mention a bit about my family. Because, let’s face it – being an older sister is not the same as being a younger sister, or being a brother …

10 Things Siblings of Individuals With Down Syndrome Wish You Knew

Katie Grace, The Mighty, 21st November 2014

... Just as every individual is unique with or without Down syndrome, every family dynamic is unique. My story might not be in line with every sibling to a person with Down syndrome, but I believe many of us having more than a few of these qualities in common ...

Dear Parents of Children With Special Needs - From a Sibling

Christina Breshears, The Mighty, 31st December 2014

... you should also know that the beautiful compassion and empathy siblings have for their sibling (and for the world) is at first solely directed at you. We first feel compassion for you as we see you work and love and attend. We first express empathy for you as we take up what jobs we can to help with the task at hand ...

The North Side of Down, by Nancy and Amanda Bailey

Jisun Lee, Kimchi Latkes, 26th January 2015

A new book, written by a woman with Down syndrome and her sister, is reviewed by the mother of a young child with Down syndrome.

Warm congratulations to Kirsten Deane OAM

Down Syndrome Australia (DSA) and Down Syndrome Victoria (DSV) are delighted to congratulate our long term Board member and Past President, Ms Kirsten Deane, on being awarded the Medal in the Order of Australia in the Australia Day 2015 Honours List.

“It is hard to find the words that do justice to Kirsten’s contribution” said Mr Angus Graham OAM, Down Syndrome Australia Chairman. “From her revitalising work as Down Syndrome Victoria President, to her writing of the Shut Out report, to her vital role in the establishment of Down Syndrome Australia, Kirsten has been a key player in re-establishing the voice of people with Down syndrome and their families as well as her crucial role in helping bring about the National Disability Insurance Scheme (NDIS).”

In 2009 the National Disability and Carer Council thanked and acknowledged Ms Deane as the primary author of the report Shut Out – The Experience of people with Disabilities and their Families in Australia. Together with the the Disability Investment Group report, Shut Out is acknowledged as a key driver of the movement and process that lead to the establishment of the NDIS.

Matthew Wright, CEO of the Australian Federation of Disability Organisations, reinforces the importance of this work; “People with disability would like to acknowledge the most significant contribution of Kirsten Deane. She worked on the most significant reforms of our time, Shut Out, the National Disability And Carers Alliance and the Every Australian Counts Campaign. As well as being a tireless campaigner on the rights of people with disability she is also a delightful person.”

“Kirsten Deane is the most outstanding volunteer that Down Syndrome Victoria has been honoured to congratulate” said Sue O’Riley, Down Syndrome Victoria CEO. “She was an active Board member from 2003 to 2014, serving as President or Vice-President for most of that time.

Kirsten’s contribution stands out from others as she has generously provided thousands of hours of expert work and advice, including the innumerable hours doing the administrative work that community organisations need to survive.

She has contributed to the organisation by writing resources, providing media support and training, writing submissions to government inquiries, drafting and editing grant applications, visiting and supporting new and more experienced parents, public speaking, lectures to students, executive mentoring and participation on numerous reference groups, roundtables and advisory boards.”

Kirsten Deane served on the Victorian Disability Advisory Council for six years, and the (Vic) Ministerial Council on Students with Disability and Additional Needs for five years. In 2008 she was appointed Deputy Chair of the newly formed National Disability and Carer Council (NDCC), serving in this position, and then briefly as Co-Chair, until it was disbanded in 2014.

“Kirsten Deane has contributed enormously to the struggle for people with a disability and families in Australia to gain basic rights to an ordinary life. I am so pleased she has been honoured in this years Australia Day awards”, said Professor Rhonda Galbally AO, NDIA Board member and former NDCC Chair.

In 2009 Kirsten’s considerable expertise and long term volunteer work as a campaigner for disability reform was recogised when she was selected as the Deputy Director of the Every Australian Counts campaign for an NDIS. As the planning for the Scheme progressed in 2012, Kirsten was then appointed to the ‘National Approach to Choice and Control’ NDIS Expert Group – her expertise and hard work acknowledged by her subsequent recent employment by the NDIA.

Bruce Bonyhady, NDIA Chairman, highlights her capability in his congratulations; “Kirsten is a true champion of people with disability and their families. Amongst her many contributions over many years, her achievements as the inaugural Executive Director of the National Disability and Carer Alliance, uniting the disability sector, and then as Deputy Director of the Every Australian Counts Campaign were ground-breaking. Australia is a better place because of her and her recognition in today's Australia Day Honours is truly deserved.”

Kirsten’s passion for change and commitment to community was well established during her years an an academic in the area of disability in the justice system, however it was the birth of her eldest daughter just before Christmas 2000 that prompted the focus on improving the lives of people with intellectual disability. Sophie was born with Down syndrome, and it has been for her and other people with disability that Kirsten has worked so hard for locally and nationally to ensure that peer support, national advocacy and a resourced disability system are all available.

Ara Cresswell, CEO of Carers Australia underlines the lived experience that has underpinned Kirsten’s work; "Carers Australia is delighted to see Kirsten's personal and professional dedication and commitment acknowledged in this way. There is no question that she is an Australian worthy of celebration. We are all richer for her contribution to the disability and carers sectors."

Kirsten and her husband Joel firmly believe in the value of an inclusive life as Sophie’s busy life attests. Sophie has just graduated from the same primary school as her two siblings, is a talented participant at the local gymnasium and is a valued member of the local junior cricket club. Sophie is most well known as the photographer who took a famous photo of the then Prime Minister, Julia Gillard – but the reason for the opportunity has frequently been overlooked. Sophie met the PM at a gathering Gillard attended to thank key contributors to the establishment of the NDIS. Kirsten Deane was one of the group being thanked.

“Kirsten is the ultimate team player” said Natalie Graham, Down Syndrome Victoria President. “I only agreed to take on this position if she stayed on the team to guide me. It is not only DSV that has seen the benefit of her willingness to share her talent and bring the team on her journey – it is the Australian community. Down Syndrome Victoria is delighted that Kirsten’s selfless contribution has been acknowledged”.


Kirsten Deane's volunteer biography:

2013 - 2014: Co-Chair National Disability and Carer Council
2012 - 2013: ‘National Approach to Choice and Control’ NDIS Expert Group member
2011 – 2013: Victorian Director, Down Syndrome Australia
2009 - 2013: Deputy Chair, National Disability and Carer Council
2009 - 2012: Executive Director, National Disability and Carer Alliance
2009 - 2012: Deputy Director, Every Australian Counts campaign
2009: Thanked and acknowledged as the primary author of Shut Out – The Experience of people with Disabilities and their Families in Australia.
2006 – 2011: Ministerial Council on Students with Disability and Additional Needs (VIC)
2004 – 2010: Victorian Disability Advisory Council
2003 – 2014: Committee of Management, Down Syndrome Victoria

Announcing ...

Weekend reading and viewing: 24th - 25th January 2015

What do you want to be when you grow up?
Mardra Sikora, Huffington Post (blog), 15th January 2015
... The general public, on occasion, puts me on edge. You see, I'm a bit paranoid and particularly attentive to how folks look at and react to us because Marcus, my adult son, has Down syndrome, and the patrons and employees at this Scooters tend to acknowledge Marcus but not bristle, are nice but not patronizing, a surprisingly tricky balance for some ...

Mardra Sikora's own blog, Grown Ups and Downs is one of the new links on our blog roll (scroll down the right hand column of this page)

Becky's New Boyfriend Darrell On 'Glee' Might Be The Only Open-Minded Person At McKinnley

Keetana Sastry, Bustle, 14th January 2015

The series that we all know and love came back in a great way as Glee tackled two important issues with powerful moments and quite a bit of class that has been inconsistent for the last several seasons ... 

Spoiler Alert: if you don't want to know what is happening with Becky's story in the new season of Glee, don't read this article.

These Are All the Things I Worried About When My Daughter Was Diagnosed With Down Syndrome
Sydnie Bell, The Mighty, January 2015
Looking back on our diagnosis day is quite surreal at this point. The feeling of having my perfect world shattered is hard to describe and painful to remember. I was scared. Could we handle raising a child with special needs? If I could write a letter to my past self, I’d say this:

Not only will you handle it, you will find your voice and your passion in it ...

Isn’t it a Pity? The Real Problem with Special Needs

Ollibean, 15th January 2015

... I could not believe how badly I had missed the boat. I was so caught up in the visual and the good feelings I had about doing this that I had not even considered that how she participated was her choice- and I had not even asked her. Without intending to, I had marginalized her ...

Education is power: An interview with Sarah Butler
My Choice Matters, 22nd January 2015
Sarah Butler discusses her passion for learning and how people with intellectual disability must be given the chance to further their education ...

Attitude - ABC TV series
Saturdays, 6.30 pm ABC 1
A showcase series on compelling stories of real people living with disability. Attitude will have 26 episodes which will air every week on Saturday at 6:30pm on ABC 1. You can view the latest episode on line here on iView.

NSW CID e-news
NSW Council on Intellectual Disability, January 2015
Find the latest news and information for people with intellectual disability - plus links to training workshops, conferences and interesting resources. Includes a link to subscribe.

People with Down syndrome: online and in other media

As general news, news about people with Down syndrome is often thinner on the ground over the end of year/new year holiday period.  This time, people with Down syndrome have been making the news around the world, and much of it will continue to be felt into the future ... maybe even to Eurovision! Here is a sample of recent stories:

Baby Gammy, one-year-old at centre of Thai surrogacy scandal, granted Australian citizenship

Samantha Hawley, ABC News, 20th January 2015

Baby Gammy, who was at the centre of a surrogacy scandal in Thailand, has been granted Australian citizenship ... Gammy, who turned one on December 23 last year, has been granted citizenship and is now also eligible for an Australian passport, although that is a separate process that has not begun. It is unclear whether he could also be eligible for Australian welfare benefits ...

The Punk Syndrome: Band with Down Syndrome applies for Eurovision

Sputnik International, 19th January 2015Finnish punk band PKN, whose members suffer from mental disabilities, wants to raise awareness for Down Syndrome by participating in the Eurovision Song Contest.

The Making of - The Interviewer (Video - 10 mins)
Bus Stop Films, published 19th January 2015
See Bus Stop Films in action, creating the inclusive film 'The Interviewer' with 13 students with an intellectual disability (several of them people with Down syndrome)

James's Story
House With No Steps, 18th January 2015 (includes video)
... He lives in his own apartment in Armidale and has been receiving support from House with No Steps through a self-managed package for about 18 months. Dancing and singing are some of James’ favourite activities. He is a talented actor, and has been part of a drama group for 6 years ...

Josie Webster, Artist
Heart and Sold (News), 11th January 2015
Josie Webster, who lives in Sydney has been signed up by UK art collective, Heart and Sold.
You can see a short biography, a fabulous photo, and Josie's work on her Heart and Sold page, and purchase them there. Josie also has a Facebok page, showcasing her work.

Hello Dollie! Grady resident could be oldest in U.S. with Down Syndrome
Jessica Lane, The Express Star, 7th January 2015
... (Dollie) Grissom, 74, may also be one of the oldest living persons with Down Syndrome in the United States, Shari Brunt, Social Services Director at Chickasha Nursing Center, said ...

(Note - the current life expectancy for people with Down syndrome is about 60 years, rather than the lower figure suggested in the article.)

Young entrepreneur Val Nyhout shatters stereotypes
Debora Van Brenk, The London Free Press, 28th December 2014
It’s been a banner year for Val Nyhout. First, the London woman broke ground last summer as one of only a few people with Down Syndrome to blog about her life. Now, she has realized another dream by starting her own business, with plans to expand her product line in January and hire staff when her business grows large enough ...

Some last-minute resources on schooling

Is it too soon to start talking about back to school? Some are probably counting the days. Australian summer school holidays are coming to an end, as we send our kids back to school in the hottest, most humid month of the year! 

If your child is starting kindergarten or high school for the first time, you will have been preparing for months, and we wish you an excellent start. You are welcome to send us your 'first day' photos, to blogeditor@dsansw.org.au 

These links might give you some last-minute useful hints and resources for your own use, or for your child's school, always with the rider to take care not to overwhelm either yourself or the school with too much information in one go:

Back To School: How to Write your Child’s “Owner’s Manual” for Special Education Teachers

Michael Dorfman, The Friendship Circle, 21st August 2014... The “All About Me” pamphlet will describe your child, what makes him or her tick, triggers, biographical information, and any other details you deem pertinent. This pamphlet allows the school personnel working with your child to get to know him or her quicker and help plan efficiently ...

One Place for Special Needs provides a page of links to pre-written social stories covering a wide range of situations, and a link to articles on writing your own social stories.

Down Syndrome Education International's current weekly posting of 21 'examples of how educational research helps and why it matters' might be of interest to your child's teacher.  Each post addresses a single topic, and is available for delivery online, each week until 21st March 2015 (World Down Syndrome Day).

Five Principles for My Daughter's Teacher
Kevin A Thompson, 12th August 2014
In light of a new school year, here are five principles we hope Ella’s new teacher follows:

• Don’t feel the need to be an expert about Down syndrome, but do take time to learn more ...
• Demand obedience, but give her time to process your commands ...
• Be fair, but keep your expectations high ...
• Help her, but don’t be manipulated by her ...
• Shield her, but don’t smother her ...

Confessions of a Special Needs Parent: The Back to School Terrifies Me

Ellen Stumbo, Hope and Encouragement for the Special Needs Parent, 27th August 2014
Excitement is muddled with fear as a new school-year approaches. I’m ready for some quiet around the house but I have two kids with special needs and the back to school terrifies me ...

Everyone Everyday Program

Disability ACT’s Community Development team, 2014
The Everyone Everyday Disability Awareness Program has been developed by Disability ACT’s Community Development team. It is a comprehensive teaching resource for mainstream primary schools, and focuses on the concept of ‘inclusion’. The program aims to create a cultural shift in community attitudes towards disability. The underlying assumption is that we all benefit when the environments in which we work, live and play are inclusive; and that we all have a role to play in creating inclusive communities ...

This teaching resource won a National Disability Award in November 2014

And the most popular resources link ever on this blog, by a long way, is Visual Aids for Learning - free downloads of Australian produced visual support tools, designed specifically with children with Down syndrome in mind.

Enjoy the last week or so of your holidays!

Positions vacant at Down Syndrome NSW

Down Syndrome NSW has two positions vacant in the Information, Training and Support Team:

1. Adult Life-stage Worker:  We are looking for a person to work with families of adult individuals with Down syndrome through information and advocacy. 

2. New Parents Liason Worker:  We are looking for a person to work with families of young children with Down syndrome through information and advocacy. 

These are part time positions (14 hrs pw) based in Northmead, Sydney.

For further information and an information package please contact Judy Davidson on (02) 9841 4401 or email judy.davidson@dsansw.org.au

Applications close Monday 9/2/15

Note: the closing date for applications has been extended to 16/2/15

Latest additions to 'events' page

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

Inclusive Community Education Programme

Sydney Community College - the ICEP is  funded by Aging, Disability and Home Care: Family and Community Services. It is a flexible respite program that aims to give carers a break by providing recreation and leisure courses for adults with a disability. It also aims to give people with a disability an opportunity to build social networks with their peers outside usual service hours.
Courses commence in February 2015 - Sydney city and inner west sites

Enriching Lives for people with disability 
Family Advocacy workshops - Explore typical adult opportunities by considering the individual interests of your family member! We will look at strategies for helping a person with disability to have a good life and provide the advocacy tools to make this happen.
Tuesday 24th February - Friday 27th February 2015 - Newcastle, Ryde, Hurstville and Wollongong 

Sydney Gay and Lesbian Mardi Gras 2015 float for people with disability
People With Disability Australia, Cerebral Palsy Alliance, Northcott and Touching Base have joined forces to have the brightest, most colourful presence of people with disability in the Mardi Gras parade yet! If you would like to participate in the float contact Patty: pattyp@pwd.org.au

Saturday 7th March 2015 - Sydney

ACT National Disability Insurance Scheme 2015 Conference

National Disability Services - as the ACT community transitions to the NDIS, people with disability, their families, carers and supporters are being faced with new processes, new supports, new people and roles, new opportunities and new risks. For people with a disability, their families and carers and service and support organisations.
23 - 24 March 2015 - National Convention Centre, Canberra

Carers NSW 2015 Biennial Conference 
For professionals, disability and other service providers, government representatives and employers working with carers to share strategies, research and innovative approaches in carer support. Call for Abstracts open until 31st January
21 - 22 May 2015 - Sydney Olympic Park

43rd Annual (US) National Down Syndrome Congress Convention 

25th - 28th June 2015 - Phoenix, Arizona

Intellectual Disability and Dementia: workshop for support professionals

Note: the closing date for registrations is tomorrow, 21st January 2015

Click here for the detailed flyer and registration form

21 examples ... #12

Down Syndrome Education International has just posted its twelfth 'example of how educational research helps and why it matters ...' in the series of 21 planned to take us up to World Down Syndrome Day on 21st March 2105.  

Check them out weekly, and pass them on to those in your circle who will benefit from concise, targeted evidence about particular aspects of your child's development. Each link takes you to a single page of information.

Sign up for emails, follow #education21 on Twitter, Facebook and Google+ or check back each week to find out more.

Refreshed

You might have noticed that the blog has new banner photos, a new background and that the text colours have been tweaked a little.  We hope you enjoy the new look.

The update has included a revision of the lists of links to other blogs and websites you will find by scrolling down the right hand column. The online presence of individuals and organisations  is constantly changing, so some of the previous listings remain, others no longer post, and have been removed. These are our recent additions - check them out, there is some very interesting and useful material there.

Use our links, or add them to your reader app. Happy surfing!

Links added to 'Blogs we read'

Links added to 'Websites we consult'

Weekend reading and listening: 17th - 18th January 2015

On Our Daughter’s Ninth Birthday, No Thoughts of Who She ‘Might Have Been’

Amy Julia Becker, Thin Places, 12th January 2015

... For years after Penny’s birth, her birthday hearkened back to that initial day of life. I could remember in my body the weight of fear and sorrow that stood in such stark contrast to the light and life in the little girl in front of me ...

Extra Ordinary (video, 5 m)
David Quinn, 2013
A glimpse into the lives of two young individuals with Down Syndrome living happy and fulfilling lives. With the goal of increased acceptance for the Down syndrome community, this film was created to challenge the associated stigmas. People with Down syndrome can, and do, lead meaningful, happy lives.

How we came to have a son with Down syndrome

Kari Wagner-Peck, Daily Life, 7th january 2015

... When we shared the news of our adoption with friends and family we found out what people really think about kids with Down syndrome. No one said "Hey, awesome you found a kid!" Instead, we heard "Why do you want to do that to yourself?" or "That sounds hard" or "Don't do that, please." ... 

Not a Mistake

Ellen Stumbo, 9th January 2015

I was sitting in the family room watching TV and stroking my pregnant belly when my husband, Andy, walked into the room. Ten minutes before, he had answered a knock at the door. When I looked up and saw his dumbfounded expression, I knew instinctively that something was wrong ... I didn’t know what to say and I certainly didn’t know what to think. Jennifer, the newborn daughter of our dear friends, Bill and Kristin, had Down syndrome ...

Why disabled achievers should be remembered

Tom Shakespeare, BBC News Ouch, 9th January 2015

... A free-thinking poet with visual impairment, a painter with learning difficulties, a sculptor with schizophrenia, a painter with cerebral palsy, that's what I've been talking about on Radio 3's The Essay this week.

Looking beyond the obvious names like Henri de Toulouse-Lautrec and Vincent Van Gogh, I've been exploring some of the more obscure figures from the past and present. For me, the stories are fascinating. But maybe they also offer role models for today's disabled people, whether they have artistic leanings or not ...

Friends of Mine, 2013
Trailer for an award winning documentary, with links for purchase via streaming

Doing Social Justice: Thoughts on Ableist Language and Why It Matters

Rachel Cohen-Rottenberg, The Body is Not an Apology, 28th November 2014

... Disability metaphors abound in our culture, and they exist almost entirely as pejoratives. You see something wrong? Compare it to a disabled body or mind: Paralyzed. Lame. Crippled. Schizophrenic. Diseased. Sick. Want to launch an insult? The words are seemingly endless: Deaf. Dumb. Blind. Idiot. Moron. Imbecile. Crazy. Insane. Retard. Lunatic. Psycho. Spaz ...

4 Disability Euphemisms That Need to Bite the Dust
Emily Ladau, Centre for Disability Rights

... While I know some people genuinely embrace words other than “disabled” – even some people who actually have disabilities – I just can’t get on board with that.

Of course, I can’t presume to speak for anyone other than myself, and everyone should have the right to choose how to refer to themselves so long as they don’t impose it upon anyone else. However, when non-disabled people try to dance around the word “disabled” in an effort to be more respectful, I don’t think they realize the hidden ableism behind the euphemisms ...

Summer

Library Thursday: new book review, extract from a well loved book

A Dad's Love: Professor Writes About Son With Down Syndrome

Gary White, The Ledger, 10th January 2015
... "Prior to having Jason, I worshipped at the altar of brains," McGuire said. "I judged people by how smart they were, how quick they were, how clever, and when my son wasn't going to be any of that, that was a hard blow and I had to, in effect, relearn love and love people for who they really are and not for their brains. Jason certainly has taught me that." ...

Gifts 2: How People With Down Syndrome Enrich the World, (Kathryn Lynard Soper, ed, 2009) is a popular book, especially with younger families, available for loan to members from our library. Ellen Stumbo has posted her essay for the book, Not a Mistake, on her blog.

Members' library

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

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

Does she know?

Many parents worry about whether their child will know/knows that they have Down syndrome, what their understanding of it is, and whether and when they should tell them. In our experience, by the time parents decide to address the issue, many children already have some understanding, regardless of their ability to communicate about it.

In most families today, Down syndrome will be part of everyday conversation, openly acknowledged. Some people with Down syndrome are quite comfortable with the term, and in the knowledge that they have Down syndrome.  Others are more ambivalent, and a few are even hostile to the very idea.

Part of the parental concern is the impact of teasing and other forms of bullying that a child might encounter.

A very wise man with Down syndrome who worked for Down Syndrome NSW for some years, until the late 1990s, spoke simply and eloquently about living with Down syndrome, often speaking with groups of students, and happy to answer their questions.

One of the many important things he taught us, in a conversation that he initiated, was that parents do need to tell their children that they have Down syndrome and that it is okay. He wisely pointed out that if we did not tell them, someone else would, inevitably, and that it might not be done kindly, or in a way that we would wish it to be handled. That had happened to him, and he regretted that his mother (who had died many years before) would not have wanted it to be so.

This thoughtful new blog post, written by Kelle Hampton in the lead up to her daughter, Nella's fifth birthday, addresses some of the nuances around Nella knowing about her own differences:

Speaking in tongues: an almost fifth year birthday, Kelle Hampton, Enjoying the Small Things, 8th January 2015
... Emotional procrastination was my savior the year Nella was born. “You don’t have to think about ten years ahead right now — just love her today.” I still tell myself that and yet things are different now. You eventually have to think about things because your child’s future depends on it. (And, if you’re brand new to this, don’t worry—you’ll be ready sooner than you think.) Some of the things I kept myself from thinking about are happening right now ...

Dr Brian Skotko's research on how people with Down syndrome see themselves:

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A: 155:2360-2369. 

•   Research article
•   Press release summarising the results

'The Interviewer' - now free online, from Bus Stop Films

What a wonderful way to start the year - Genevieve Clay-Smith's multi-award winning short film, The Interviewer, starring Gerard O'Dwyer, is now available for viewing online.  The film was made in 2012. Thanks, Bus Stop Films.

Made through the Bus Stop Films weekly film making workshops for people with an intellectual disability, this film has found it's way onto screens across the globe. Recently going viral in Europe after being exposed on Arte TV and Winning over 30 awards and screening at over 40 film festivals including Short, Shorts Film Festival & Asia, Cleveland, Flickerfest - this is a little film with a big message.

Thomas Howell gets more than he bargained for at an interview at a prestigious law firm. An insult about his tie, a rendition of Harry Potter, and the chance to change the lives of a father and son.

Bus Stop Films is a pioneering organisation which has a focus on creating inclusion within the film industry. So far Bus Stop has been involved with creating four inclusive films, that have been screened both nationally and internationally ... Bus Stop Films

• Bus Stop Films on Facebook 

2015 events listings

Many of us are back at work this week, including Down Syndrome NSW, with new diaries open and filling quickly. 

Throughout the year, keep abreast of events that might be of interest or use to you and your family through our  two 'events' pages (permanent tabs are located under the banner at the top of this page). Each list is updated regularly:

Down Syndrome NSW events 2015 - our first two events scheduled for 2015 are:

Tee Up! 2015 

Fund raising golf day to support the work of Down Syndrome NSW.
Friday 27th February 2015 - Coast Golf Club, Little Bay

Embracing Succes - a Teacher's Toolkit 

Down Syndrome NSW education conference -  an essential training event for any educator working with a student with Down syndrome. registration available for one or two days.

• Early bird registration closes 30th January 2015

Thursday 26th  and Friday 27th March 2015 - Sydney

Other 2015 events

Here we post links providing information about events run by other organisations (including other Down syndrome organisations) that might be of interest to people with Down syndrome, their families, carers and professionals who support them. Events listed here might be in NSW, in other Australian states/territories, or international.

Reminder about two surveys

Free Stepping Stones Triple P programs for Parents and training for professionals

Stepping Stones Triple P (SSTP) is a new initiative to support families of children with developmental disabilities. Research has shown the programs help to reduce children’s behavioural and emotional problems, decrease parent stress, and increase parent confidence. 

The Project's My Say surveys, one for parents, and one for professionals, are still open for completion, and registration for the participation:

DSA Surveys - The NDIS and people with Down syndrome

It's not too late to complete one of these surveys, and your information will help DSA and state Down syndrome associations to best support people with Down syndrome and their families as we move into the NDIS. Please take a few minutes to complete an online survey now. Thank you.

Many members of state and territory Down syndrome associations have questions and concerns about the National Disability Insurance Scheme (NDIS) and how it works for people with Down syndrome of all ages. 

To be the best voice we can for the Australian Down syndrome community, we'd like to hear from you about your experiences with the NDIS, or (NDIS/NDIS My Way in WA) so far, and any thoughts, questions and concerns you may have. Your answers will also help DSA and the state and territory associations develop resources and tailor supports to help you, so please provide as much information as you can. 

There are two surveys to choose from: 

1. For people not yet in NDIS 

2. For people already in an NDIS or My Way trial site 

You don't have to be a member of your local association to take part.

Weekend reading and viewing: 10th -11th January 2015

The Most Important Thing I Did After My Son Was Diagnosed With Down Syndrome

Sharon Randall, The Mighty, 7th January 2015
... I know you feel like someone has turned off the lights and left you in a dark room without a door. You went into labor expecting that your growing family would look like all of the other families you know. Now, you’ve found out that your son has Down syndrome, and you feel completely alone ... as quickly as possible and with great urgency, you must search for someone who will travel alongside you on this new road, with an empathy that comes from having been where you find yourself now ...

Look Around (Public Service Announcement)
Paul Chitlik, Writers with Disabilities Committee, 6th January 2015
This PSA was produced by the Writers with Disabilities Committee of the Writers Guild of America to encourage screenwriters to write about people with disabilities.

Thoughts before opening the first report card ever

Sally Felkai, Wide Awake Planet, 29th December 2014

I am about to open my daughter's first report card ever. I am curious about the mix of feelings I have in this moment ... I can already see so much progress since our late September start to the school year and school career. It is that progress that matters. But I do care what the teacher thinks. I do care what the teacher sees. I hope that my girl is seen for who she is and that the professionals can feel the vastness in there ...

What I Saw, Through Tears

Dave Hingsburger, Rolling Around in My Head, 6th January 2015

... We made love a behaviour. And we wrote plans to eliminate that behaviour ...

I don't know how you do it
Gillian Marchenko, Not Alone, 1st January 2015
... I do it because they are my children. I do it because I am their mom.

On good days, I get up in the morning and cut my losses and struggles from yesterday (because when you parent a child with special needs, there are usually daily losses and struggles). I look my kids in the eye, breathe out a prayer, hug them, and hold on a while because they are worth it, and our life is blessed ...

‘Now I See’: Looking back, but without any anger
Fiona Place, The Australian, 30th December 2014

... The atmosphere in the NICu was so different to that of the delivery suite. The focus was no longer on our son’s genetic abnormality, on a tragic outcome, but rather on his health and wellbeing. And pulling up a chair I sat as close as I could to his crib and gently stroked his cheek, and whispered his name, and told him I loved him. Over and over ...

Fiona Place is a member of Down Syndrome NSW. This story was originally published in The Best Australian Stories 2014, edited by Amanda Lohrey.

Hope and Hopefulness: the light is on!

Dave Hingsburger, Rolling Around in My head, 24th December 2014

... this is a seasonal Facebook feature ... As a result of my work with various self advocacy groups, I have a significant number of self advocates 'friended' on Facebook. It has been with a sense of real awe that I've browsed through their Facebook years. The first I looked at was a young man, (anyone under 40 is young to me) with Down syndrome ... There were pictures of him hanging with friends, being with a girlfriend, competing and winning medals at a Special Olympics event ... pictures of him living and loving his life ...

Two Years In: Down Syndrome, Recognition, and Pride

Jisun Lee, Kimchi Latkes, 19th December 2014
... I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again? From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all ...

Reading this post might well lead you back to this one, written by Jisun Lee shortly after LP's birth, Tap, tap, tap

Family's passion drove Muncie hotel project
Keith Roysdon, The Star Press, 24th December 2014

... On this drizzly day at the end of October, a few hundred people have gathered in the Horizon Convention Center for the groundbreaking of the Courtyard by Marriott hotel, a few yards away at the end of High Street.

Nash, who is 13 years old and has Down syndrome, is called up to the speaker's platform by Mayor Dennis Tyler. As Nash shifts on the stage behind the mayor, eyes are drawn to his buzz cut, his bright blue shirt and his smile.

If Nash fully grasps that all the people here this day are here because of him and, by extension, his mom and dad's dedication to improving the lives of the nation's people with intellectual disabilities, the realization doesn't faze him. He chats amiably with strangers, gives his father a joking "thumbs down" after his time on stage and laughs heartily while posing for pictures ...

Emotional relating (sharing subjective experiences)
Bill Nason, Autism Discussion Page, 2nd January 2015

Emotional processing (Theory of Mind) is the ability to read the thoughts, feelings, and perspectives of others. This involves the ability to understand what they are subjectively experiencing, so we can understand how they are acting. We look for the hidden meaning behind what people say and do. We do not take language literally and (we) read between the lines ...

Erin's World glasses frames - Australian distributor

Erin's World glasses frames  are 'a specially designed frame to accommodate the unique facial features of children and adults with Down Syndrome, ' manufactured in the US for Specs4Us. 

Distribution within Australia has now been taken over by Little Optometry, in Queensland, from the previous distributor, Respecs.

Little Optometry Pty Ltd
Suite 4 North Lakes Medical Center
12 North Lakes Dr.
North Lakes, Australia 4509
eyecare@littleoptometry.com.au

07 3491 6786

• You can read the announcement on the Respecs Facebook page, 7th January 2015

Commentary on announcement of welfare cuts and funding the NDIS

The new Minister for Social Services, Scott Morrison, has attracted criticism for his announcement on welfare cuts and funding the NDIS, both for its content and timing at the start of the holidays. Craig Wallace, President of People with Disability Australia, took a different and broader perspective on the new Minister's opportunities for reform, as you will see in the first link:

The Abbott government needs a social services reset. Scott Morrison is the one to do it

Craig Wallace, The Guardian, 30th December 2015
... While some have rushed to judgment about the new minister of social services, based on views about Scott Morrison’s implementation of refugee policy, a heavy hitter determined to make a mark on the domestic front could reset the government’s performance in social services.  Changes in style and substance could be the first step. Paul Keating famously described it as “throwing the switch to vaudeville” as he worked to remake an unpopular persona as a cadaverous number cruncher. Here are some switches that Morrison might throw on welfare, disability and jobs ...

NDIS: Morrison says welfare clampdown needed to fund disability scheme

Oliver Milman, The Guardian, 24th December 2015
... Mary Mallett, the chief executive of the Disability Advocacy Network Australia, said Morrison was “deliberately confusing people” over how welfare spending related to the NDIS.

“They are conflating two issues where there is no connection between them,” she told Guardian Australia. “The NDIS replaces the care and support provided by the states and territories, money that is already being spent. The majority of people who have a significant disability will be on the disability support pension [DSP], but that’s the only relationship to welfare ...

NDIS fully funded, Labor tells Morrison

9 News, 24th December 2015
... Just hours after being sworn in in his new role, Mr Morrison sent tremors through the welfare and disability sector by suggesting the government might need to prune spending on other welfare to pay for the full rollout of the landmark scheme.

The minister went further on Wednesday, telling News Corp that to achieve sustainability of the welfare safety net - "of which the NDIS is the holy grail" - sustainability in other parts of the system was needed ...

Scott Morrison needs to realise the Disability Support Pension actually saves money and lives
El Gibbs, Sydney Morning Herald, 24th December 2015
... Despite the tabloid rhetoric about rorters and bludgers, the rate of people getting the Disability Support Pension (DSP) is falling, with more than half the applications refused. The eligibility criteria have been repeatedly tightened, and the work threshold is now only 15 hours a week. The DSP also recognises that having a disability costs money - for example, if local public transport is not accessible, a taxi may be the only transport alternative. This financial cost has nothing to do with whether a person is on the DSP or another safety net payment; it's because having a disability is expensive ...

NDIS funding: Cry of blackmail at move to slash welfare

Rachel Browne, Sydney Morning Herald, 3rd January 2015

... The disability sector was quick to point out that the Medicare levy was never intended to cover the entire cost of the insurance scheme and that , rather than being a drain on the public purse, the scheme was a revenue raiser with a multitude of economic and social benefits.

Research commissioned by non-government disability peak body, National Disability Services, found that the scheme will increase the country's GDP by between $18-22 billion once it is fully rolled out, as people with disabilities and their family carers enter the workforce. It will also create jobs, with the Treasury estimating the number of disability care worker numbers will have to double to accommodate the needs of the 460,000 people covered under the scheme ...

Adding Fear to Disability
Jenny Macklin, The Australian, 30th December 2015
... The government has two motivations — first, it is intent on destroying Labor’s record when it comes to the NDIS. That doesn’t hurt the fortunes and opportun­ities of people with disability. Far more damaging is its calculated effort to try to scare people with disability, that Australia can’t afford to look after those most in need ... (You might find that this article is behind The Australian's pay-wall)

Peak body funding

Commentary on the defunding of peak disability organisation continues, following its announcement just before Christmas:

Funding Cuts Closes Disability Orgs

ProBono News Australia, 5th January 2015
Peak disability support organisations have been forced to either close their doors or reduce services and retrench staff thanks to Federal Government funding cuts.

CEO of the Australian Federation of Disability Organisations (AFDO), Matthew Wright, said 10 peak organisations run by people with disability will be left with no choice but to either close their doors or reduce services, with seven organisations subject to drastic funding cuts by outgoing Minister for Social Services, Kevin Andrews.

Wright said he had requested an urgent meeting with new Social Services Minister Scott Morrison to discuss the funding cuts.

He said together the disability peak bodies represent over 90 per cent of Australians with disability and 83 per cent of the identified disability groups in Australia ...

• Fears specific disability expertise could be lost after funding cuts - Matthew Wright interviewed on Radio National, 5th January 2015

Funding Cuts Threaten Our Voice

Purple Orange, 5th January 2015

... The defunded agencies provide leadership and voice for many people living with disability and their families, and it is hard to imagine how the views of these important demographics within the disability community will be fully heard and understood in the absence of grass roots agencies ... The apparent budget savings come at an unacceptable cost to the disability community and we urge the Commonwealth Government to reconsider.

National Ethnic Disabilty Alliance, 6th January 2015

Added 9/01/15: Graeme Innes has weighed in today, with this opinion piece in The Guardian:

Were disability advocacy groups too successful? It may explain their funding cuts

Graeme Innes, The Guardian, 9th January 2015

... 200 years of expertise will be lost when the money runs out in three month’s time; expertise that can never be regained. Their 200,000 supporters – people with disabilities who have the greatest need – will be further disadvantaged. The government will lose the benefit of this expert advice on issues as critical as income support for, and economic participation of, people with disabilities.

It’s hard to understand the reason for this funding cut. Is it the lack of importance to this government of expert advice on disability issues? Is it that these organisations were such good value for money that they were achieving too much change too quickly? Is it that the best way to silence government critics is to take away their money? Or is it just that they were collateral damage in the government’s continued cuts? ...

Summer in Australia

Plenty of weighty matters await our attention in 2015, but just before we get into that, here is the first of  photo series that will appear from time to time throughout January, on 'summer', since we are enjoying it here in Australia, right now. 

You are very welcome to send in a photo that fits that theme - someone with Down syndrome enjoying their summer - it is not intended that captions or names will be used.  Email photos to blogeditor@dsansw.org.au any time during January.

Post school literacy teacher position - Down Syndrome Association of Queensland

The Down Syndrome Association of Queensland is seeking a Post School Literacy Teacher, part-time (contract), 1 day per week,  who has a passion for working with students with disabilities. The position will commence in 2015.

Closes 16th January 2014

Details and application procedure here, on Seek.com