Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Saturday, 31 October 2015

Have a great day tomorrow!

All the best for the final Step Up! event for 2015, at Picton Botanic Gardens, tomorrow.

Friday, 30 October 2015

Weekend reading and viewing: 31st October - 1st November 2015

Kari Wagner-Peck, Huffington Post (blog), 29th October 2015
In 1984, Reagan inaugurated October as National Down Syndrome Awareness Month. His proclamation would encapsulate a failing in Down syndrome advocacy for the next 30 years:
"In the past decade, the United States has entered a new era of hope for its developmentally disabled citizens", Reagan intoned, "This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps. And, then, this: "Research has uncovered the genetic basis for the condition and points the way to its ultimate prevention."
It was a mixed message. We accept you and we would hope to prevent you. It was, after all, a proclamation not human rights legislation ...

On the Eve of 21
Lisa Bridle (guest blog), Mumma Love, 29th October 2015
My beautiful, amazing son turns 21 in a few short months.This impending milestone has me thinking I really must put my mind to booking a venue worthy of such an auspicious celebration. It has also had me recalling those scary early hours and days when Down syndrome seemed like such ‘bad news’. Over the years, I have often pondered all the things I would like to tell that sad and terrified young (well younger!) mother that I was back then, to comfort and reassure her, as well as help her navigate what was to come. How I would like to be able to reach out to her to break the spell of gloom and confusion and convince her that not only will she be completely besotted by this unexpected baby but she will also greatly value the rich adventure she is about to live – and all she will learn through it ...

Down Syndrome awareness month highlights need for understanding
Sage Swinton, Cessnock Advertiser, 23rd October 2015 
October is Down Syndrome awareness month, celebrating people with Down Syndrome for their abilities, not their disabilities.

Some local families who have been touched by Down Syndrome decided this was a great chance to raise awareness about the condition and the stigma surrounding it ...

My Special-Needs Son Hates Halloween
David Perry, Pacific Standard, 28th October 2015
The costumes are itchy, the candy bores him, and we keep asking him to be someone he’s not ...

... Holidays can be exhausting for people with disabilities—and for their families and caregivers. In most societies, holidays function to create shared social experiences. This can be a socially constructive arrangement, building bonds among members of communities, but establishing norms always puts pressure on people who cannot (or will not) conform ...

Down Syndrome: A letter to a mama who just found out…
Cassie Weber, Up Parenting Creek, 26th October 2015
October is Down Syndrome Awareness Month. I hardly knew a thing about Down Syndrome before my daughter came along. I’m sure many people who receive this diagnosis for their child don’t know much about it either ...

My Son Who Has Down Syndrome Tells Me Something That Changes Everything
Kari Wagner-Peck, Huffington Post, 24th October 2015
... "Listen, as long as we are talking about this--how are you feeling about your Down syndrome?" ...

The Answer
Dave Hingsburger, Rolling Around In My Head, 28th October 2015
... I got to sit there and listen, really listen, to them think, and reason, and figure, and joke and laugh and think again and reason again. A group of people who others think can't think and can't reason are doing just that, their words swirling around the room, their ideas slowly unwrapping the question to find the answer.

Then a woman at the back called out the answer. The room erupted. I didn't even have to say that she got it right ...

Time for a Special Minister for Disability
Peter Gibilisco, Pro Bono News, 6th October 2015
Disability support and policy is currently undergoing much needed and crucial reform. There is a lot of taxpayer money being spent on seeking to get things right.

The National Disability Insurance Scheme is a wide sweeping reform that will try its utmost to significantly improve the lifestyles of people with disability however severe or profound they may be. And there is a need for significant government financial support for people with disability. Which leads me to ask: should a special ministerial portfolio be created for people with disability? ...

Health news, information and resources

Bernadette S Zemel et al, Pediatrics, Vol 136, No 5, November 2015

Children with Down syndrome (DS) have lower birth weights and grow more slowly than children without DS. Advances in and increased access to medical care have improved the health and well-being of individuals with DS; however, it is unknown whether their growth has also improved. Our objective was to develop new growth charts for children with DS and compare them to older charts from the United States and more contemporary charts from the United Kingdom ...
  • The full text of the research report is free to download as a .pdf file. High resolution images of the graphs are available online under the 'figures and data' tab here.
Talking to the Doctor
Down Syndrome Program, Massachusetts General Hospital for Children, October 2015
Social story about talking to a doctor about feelings, and asking/answering questions with a doctor.

Neck Instability
Down's Syndrome (UK), 16th October 2015
We thought we would write a blog piece to raise awareness of neck instability in people with Down’s syndrome as it is a subject that sometimes causes worry for parents and professionals alike. Callers to our Helpline quite often ask whether or not children should take part in particular physical activities such as trampolining. Before we carry on with the blog piece we must stress we don’t want to cause a rush to remove children and adults from PE, DSActive sessions and the gym. The aim of this blog piece is to inform and not to cause alarm so please read through to the end ...

Down Syndrome Program Reflects Transition Effort
Kara Baskin, MassGeneral Magazine, June 2015
At the MassGeneral Hospital for Children (MGHfC), Ben Majewski opens the door to the waiting room at the Down Syndrome Adolescent & Young Adult Clinic. “Stacy?” he grins, greeting a teenage patient. He ushers Stacy and her family into a treatment room with plans to return shortly for more discussion ...

Mr. Majewski isn’t a doctor. The 24-year-old, who has Down syndrome, is a resource specialist with the clinic, which helps patients aged 13 to 21 years transition from pediatric to adult care. The clinic, housed within the MGHfC Division of Genetics, also works with patients on achieving milestones such as independent living and offers family support on topics like healthy eating, sleeping, working and dating ...

My Child Has a Learning Disability - How Do I Prepare Her for a Hospital Stay?
Stephanie Nimmo, Huffington Post UK, 14th October 2015
... We know she will be in theatre for around seven or more hours, she will probably spend some time in intensive care afterwards being stabilised , the rest is all uncharted territory but we know she will be in for a long stay in hospital as she recovers and we find a regimen that enables us to look after her at home.

How do you prepare your child for something like this? Especially when, as in Daisy's case, she has a learning disability. Here's my advice to anyone with a child with complex needs facing an impending hospital stay, it's what has worked for us as we support Daisy through these traumatic and stressful times ...

I Can Quit Facilitator's Manual
Centre for Developmental Disability Health, Monash University, 2007
While smoking is not documented as a common problem for people with Down syndrome, it is not unknown. This program was first developed in 1995, updated in 2007 and is now available online.

Antipsychotic Drugs Often Given to people with Intellectual Disability in Absence of Mental Illness
Scientific American, 2nd September 2015
Antipsychotic drugs are widely used to blunt aggressive behaviour in people with intellectual disability who have no history of psychosocial disability, a UK survey of medical records finds, even though the medicines may not have a calming effect. The finding is worrisome because antipsychotic drugs can cause severe side effects such as obesity or diabetes ...

Thursday, 29 October 2015


NSW CID TV launched
NSW Council for Intellectual Disability has recently launched its own You Tube channel, CID TV. Leigh Creighton is CID TV's Hunter reporter - his first published video report is here.

Conversations That Matter
'An online values training program on disability and Community Living ...  designed with service providers in mind.' The latest release is a new 3-video series on "Advocates Against Abuse," an abuse prevention training program for people with intellectual disabilities, taught by self-advocate trainers. From Broadbeach Training Centre, Canada, run by Norman Kunc and Emma Van der Klift.
12th WDSC presentations
Presentations from the 12th World Down Syndrome Congress in Chennai 2015 can now be viewed here.

Resources on ageing and Down syndrome
The (US) National Down Syndrome Society (NDSS) has posted additional resources on ageing and Down syndrome, including video presentations on ageing issues given by international experts at the recent NDSS and Down Syndrome Community conference, Aging Matters: Growing Older with Down Syndrome, in Seattle.  5+ hours of video plus written materials.
Coping with Loss: Down Syndrome
Nancy McCrea Iannone and Stephanie Hall Meredith, Down Syndrome Pregnancy, October 2015
The book offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome by covering topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.

“This booklet provides an immense resource for families as they cope with the loss of their child. I take great comfort in knowing that it will reduce stress for future grieving families by guiding them through this difficult experience” ...

(This link was also posted in our weekend reading post for 17th - 18th October)

12th World Down Syndrome Congress, Chennai 2015

Up! Club members Rohan Fullwood and Tara Elliffe spoke about there experience at the 12th World Down Syndrome Congress in Chennai, India in August at our AGM on 18th October. Their presentation is on our website, here. Be sure to click on the link to see their wonderful photos. Down Syndrome NSW Executive Director, Tracylee Arestides also attended the 12th WDSC and reports back:

Every three years Down Syndrome International (DSi), a London based charity, organizes the World Down Syndrome Congress. August 2015 saw 500 delegates from over 25 countries come together in Chennai, the capital of Tamil Nadu in southern India, to share information, make connections and work toward making ‘An inclusive tomorrow’.

Of those gathered in Chennai just over 100 delegates were people with Down syndrome. One of the great things about this was that every time you looked around the room about every 4th or 5th person had Down syndrome! Australia had its fair share of delegates with DS including dancers and drummers from Victorian group eMotion 21 and rock’n’rollers Club Slick from South Australia. Many individuals travelled to India as well, including several members of DS NSW.

The Congress took place over three action packed days and covered a wide variety of subjects ranging from weight management to independent living to the paranormal abilities of people with DS!

An important part of each Congress is the parallel stream of presentations and activities that is exclusively for people with DS. At the end of the 2015 Congress, the self advocates session of this stream agreed on the following resolutions
  • To be respected and accepted so that disabled citizens are treated equally 
  • To have the right to date and get married like everyone else, without parental interference 
  • To have the opportunity for self-care and a healthy life, living independently including pay bills and make own decisions. 
  • Education be made free for all 
  • To be provided with a trained counsellor in all schools and colleges with inclusive practices without comparison to other people without Down syndrome 
  • Insurance policy coverage from birth 
  • The right to vote 
  • Right to transportation 
  • Develop a clear social model of service provision relating to the health, education. Training and employment and career development of persons with Down syndrome and intellectual disabilities ensuring that those involved in its implementation are adequately trained. 
  • Allocate resources to develop and sustain innovative approaches to training and employment related to programmes and services for persons with Down syndrome. 
  • Make reasonable accommodations, provide employer incentives, Encourage networking and collaboration in particular on supported employment 
  • Take strong measures to prevent sexual and physical abuse or exploitation and provide equitable justice where criminal activity has occurred. 
  • Provide access to general healthcare services which respect the dignity and privacy of individuals with Down syndrome and intellectual disabilities and which facilitates informed decision making. 
  • Sport and recreation policies of governments should facilitate sponsorships, accessibility, education training and participation at all levels. 
Many of the issues addressed in Chennai spoke directly to the experience of people with DS and their families in the Asian region. While it is interesting to see how far we may have come respecting the rights of people with DS in Australia it was also a reminder that those rights can not be taken for granted.

One of the most insightful and entertaining speakers at the Congress was American geneticist, and younger brother of Kristen who has DS, Dr Brian Skotko. Dr Skotko presented findings of some recent research he has undertaken about people with DS and their families. Among other things the research showed that 61% of siblings between the ages of 9 and 11 worry about their sibling with DS being made fun of while 89% felt that their friends were quite comfortable with their sibling and only 7% were embarrassed by having a sibling with Down syndrome.

Dr Skotko’s recommendations for parents arising from the research included
  • Allow brothers and sisters to express negative feelings 
  • Be open and honest and explain DS as early as possible 
  • Recognize the difficult moments that brothers and sisters may be experiencing 
  • Limit caregiving responsibilities 
  • Recognize the individuality and uniqueness of each child in the family 
  • Be fair
(Dr Skotko’s recent book Fasten Your Seatbelts – A crash course on Down syndrome for brothers and sisters is available from the library).

Overall the WDSC 2015 was a highly informative, very full and a joyous occasion.

Presentations from the 12th WDSCongress can be viewed here.

The next WDSC is in Glasgow, Scotland, 24th - 27th July 2018 
and its highly recommended - so start saving and planning!

Wednesday, 28 October 2015

University request for volunteers' input for training in mental health/intellectual disability

Good mental health services meeting the needs of people with intellectual disability require both mental health professionals and disability services professionals to develop skills and knowledge. The Department of Developmental Disability Neuropsychiatry  (3DN) at the University of NSW is developing online training resources, and is asking for input from professionals in the disability field about what they need:
Do you work with people with intellectual disability? Could you help us develop a new training resource? 
In 2013 The Department of Developmental Disability Neuropsychiatry at UNSW launched an online e-learning site to educate people about intellectual disabilities and mental health. The modules included were designed for people working in mental health services. We are now expanding the online learning site to include modules specific to disability professionals. In order to ensure the topics we cover in the modules and the style we use is appropriate we are interested in hearing feedback from disability professionals. 
If you currently work in a role supporting people with an intellectual disability and would like to share your opinions about the upcoming training resource please get in touch. Participation involves a short 20-30 minute phone interview and viewing sample material of the e-learning modules. Questions will cover your thoughts about the content and ask for your suggestions. 
If you are interested in participating, or if you have any questions please contact Kimberley Smith on (02) 9931 9153 or email:

Down Syndrome NSW Board 2015 - 2016

The activities and direction of Down Syndrome NSW are overseen by a Board of directors who are elected by the membership of the Association each year. A new Board was elected at the Annual General Meeting of Down Syndrome NSW on 18th October 2015.
Greg Simmons, President
Jason Lloyd, Vice President
Greg Simmons

John Namey, Treasurer
Board Members:
Josh Coburn
Graeme Dubé
Margot Elliffe
William Greive
Andrew Hinde
Jacqueline Little
Matthew Kelly
Richard Yee
Information about the Board members is available on our website. Members are also invited to contact the Board directly via with any queries.

Down Syndrome NSW staff members and information about their roles is listed here on our website.

Tuesday, 27 October 2015

News and commentary on the NDIS (39)

NDIS September 2015 eNewsletter

Disability Loop eNews Issue #9 (21st october 2015)
  • New information about NDIS and housing
  • What are people from Western Australia worried about? What's happening there that is different?
  • Queensland announces it's first NDIS sites: Townsville, Charters Towers and Palm Island
  • Quick links to the NDIS in the news
  • Have you decided not to take part in the NDIS? Have you been told you can’t join the NDIS?
Carolyn Campbell-McLean, My Choice Matters, 24th September 2015
I’m struggling to hold back tears right now. I’m relaying my thoughts to my colleague Annie over the phone. I can’t write them myself because I’m stuck lying flat on my back in bed, unable to access specialised nursing care for at least 5 days. This is the reality of somebody with high and sometimes varying support needs in the current disability system.

The NDIS is official. The rollout schedule has been released. The sector is rejoicing ...

Key Points from the conference We are worth the investment - people with intellectual disability and the NDIS, held in July 2015
NSW Council for Intellectual Disability, October 2015

Rachel Browne, Sydney Morning Herald, 9th October 2015
... With the government planning to transfer state-run disability services to the non-government sector, Mrs Pickering is concerned there will be no private provider willing to care for people with the most complex needs ...
  • NSW CID posted a link to this article on its Facebook page on 11th October - you might be interested in some of the responses.
For some, the long cold wait is over
George Taleporos, Every Australian Counts, 24th September 2015
... Imagine you’re waiting for a train, you’ve had a long, and tiring day. You wait on the platform for hours but there’s no announcement, no indication whatsoever about when your train will arrive to take you home. It’s cold and wet and it’s getting dark. A cold blustery wind is chilling you to the bone and moment by moment you look up to the platform monitor hoping to see when your train will arrive ...

How the NDIS is changing the lives of Hunter residentsJenny Marchant, ABC Newcastle, 23rd September 2015
Families in the Hunter who were among the first in Australia to use the National Disability Insurance Scheme (NDIS) have reflected on how it's affected them, as Federal and State governments prepare to roll out the scheme throughout New South Wales ...

Latest additions to 'events' pages

Down Syndrome NSW events

Preparing for School
A workshop for parents of children who will commence school in 2016 or 2017, presented by Down Syndrome NSW. Cost: Members $25 / Non-members $35. For more information call the Down Syndrome NSW office 9841 4444. Register online here
7 pm - 9.30pm Wednesday 18 November 2015 - Parramatta

Become a Leader in 2016
Do you want to learn more skills to be a leader in your own life and community?

Down Syndrome NSW is pleased to announce a partnership with My Choice Matters.

In 2016 we will offer the Become a Leader  program in an Easy Read format for people with Down syndrome. The program will be held in Parramatta over 2 days (one week apart).

This program in Parramatta is the only one specifically for people with Down syndrome, however more easy read programs are planned for regional NSW in 2016. The course is free, but places are limited. Program dates will be set to suit people’s availability. Support to travel to Parramatta from regional areas can be arranged.

 If you are interested in this program please contact Kate McNamara for more information.
Kate’s email is or phone 02 9841 4444.

This program is part of Down Syndrome NSW’s LEAP (Lived Experience Advisory Project).

Other events
These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.
Sea Turtles Nippers
Collaroy Surf Life Saving Club - Sea Turtles Nippers is a fun outdoors activity for children and young adults with special needs to experience a nippers environment whilst receiving the support and care they require. Activities will involve swimming, wading, board riding, ski paddling, sandcastle building, beach flags and many other fun beach activities. February 2016  dates to be advised. All enquiries please phone Collaroy Surf Club on 9971 6663 or Fiona on 0410 669 432
9 am -11 am Saturday November 14 and Saturday November 21, 2015

T21 Ryder's Foundation 2nd Memorial Golf Day
Please join us for the 2nd T21 Ryder’s Cup to raise funds for children and adults with Down syndrome in the Hunter Region. Your attendance will assist with not only raising much needed funds, but help Ryder to leave his foot print on this world. Flyer
Monday 30 November 2015 - The Vintage Hunter Valley

Monday, 26 October 2015

Would you like to work with us?

Down Syndrome NSW currently has two positions for energetic and committed individuals who are passionate about the rights of people with Down syndrome.

Events and Communications
Do you have experience organising events and with implementing communications strategy? We have a three day a week position at the office in Northmead with our Community Engagement and Fundraising team. You will be working with our Members on a variety of events as well as using your comms skills to let people know about Down syndrome and what we are doing.

Peer Connector
Down Syndrome NSW is currently looking for a peer connector to help establish and run a local social group in the Hornsby/Ryde area, for adults with Down syndrome and intellectual disability.

The goal of the group will be to build the social networks, independence and skills of group members – while having fun at the same time. There will also be a focus on helping group members to prepare for the rollout of the National Disability Insurance Scheme (NDIS) in their local area. Prior knowledge about the NDIS is desirable, but not essential. The position is approximately 10 hours per month and will include some weekend work.

For further information about these positions email and put the position name in the subject line.

Congratulations Nathan Basha: Australian of the Year finalist

Australian of the Year Awards
Each year our nation celebrates the achievement and contribution of eminent Australians through the Australian of the Year Awards by profiling leading citizens who are role models for us all. They inspire us through their achievements and challenge us to make our own contribution to creating a better Australia ... 
... The prestigious year round program culminates in the announcement of the national award recipients in Canberra on Australia Day Eve.
Congratulations to Nathan Basha on being selected as a finalist for the NSW division of the Australian of the Year 2016 Awards, in the Young Australian of the Year category.  T This is Nathan's citation:

NSW State Finalist Young Australian of the Year 2016
Nathan Basha, Disability advocate

A social entrepreneur pushing boundaries, Nathan Basha is living proof that disability does not equal disabled. Nathan might happen to have Down syndrome but, as he says, “that’s not who I am”. As a motivational speaker, Nathan has presented at national and international conferences and political forums, universities and schools to share his insights into the possibilities when people are encouraged to reach their potential.  
An actor, university student, filmmaker and employee at Sydney’s NOVA radio station and Taste Creative, Nathan is also an ambassador for the Living Life My Way campaign. Through his social enterprise, NB* No Barriers, Nathan is focused on engaging with the corporate sector to change attitudes around employment for people with disability. He’s hosted workshops to inspire people with intellectual disability to find their dream job, teaching employment skills and the secrets to writing a super CV. 
 Just 10 per cent of people with intellectual disability are employed in Australia’s open labour market and Nathan is determined to smash this statistic while helping people live their dreams.

  • Previous posts to this blog, about Nathan Bash are here and here

Friday, 23 October 2015

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

Faces in the crowd and Down syndrome awareness
Mark Leach, Down Syndrome Prenatal Testing, 14th October 2015
This past weekend, my wife and I enjoyed a trip to New York City. Here’s what we saw, and what we didn’t see ...

How My Son Chooses to Teach Down Syndrome Awareness
Mardra Sikora, Huffington Post, 17th October 2015 
Earlier this week my son and I presented the animated short of the children's storybook, Black Day: The Monster Rock Band. We had a few stops scheduled; one was to the third grade classes at an elementary school near Austin. The teacher who arranged our visit told me, "I read the book to my class last week. They loved it! I told them that the author has Down syndrome and they asked, 'What is Down syndrome?'"

This has been my dilemma as Marcus and I have met each new group. Should we talk about Down syndrome? And to what extent? It is, after all, Down Syndrome Awareness Month, and Marcus does happen to have Down syndrome ...

In the case of the first graders we visited in Georgia, they were pretty focused on the monsters in the band, the angry mob, and loving the music.

When I advocate for Thorin, I see Monty too
Kari Wagner-Peck, Bloom, 16th October 2015
... Early on, professionals and lay people repeatedly assured us that all children with Down syndrome are happy. In time I came to realize that these people meant more than “happy.” They meant “simple.” They believed people with Down syndrome couldn’t understand the complexities and ambiguities of life, so, as a result, they were happy.

I knew this was not a universal truth about people with Down syndrome. No one is happy all the time. I had known someone with Down syndrome, and he was definitely not happy. He was also quite painfully aware of the complexities of life ...

When a Man Uttered 2 Magic Words About My Son With Down Syndrome
Maxine Sinda Napal, The Mighty, 22nd October 2015
... For days, the sense of being overwhelmed quietly threatened like black boiling clouds that precede a hurricane. It’s the big fear. The great unknown. The old what if.

But not today. No what if. Just what is. One older man on a bike grinning at a toddler toddling ...

Sometimes people need a little help finding romance and people with disabilities are no exception
Lesley Robinson, 7.30 Report (ABC TV), 22nd September 2015 (video 7m 23s)
Sometimes people need a little bit of help to find romance - and people with disabilities are no exception. That's where the Dateables Ball comes in. It's a singles dance, relying on some old-fashioned matchmaking to help people with disabilities looking for love ...

Step Up! for Down Syndrome - Huskisson, 2015

Step Up! for Down Syndrome - Huskisson, 2015
Step Up! for Down Syndrome - Huskisson, 2015

Step Up! for Down Syndrome at Parramatta Park: this Sunday, 25th

Sunday 25th October 
Parramatta Park, at ‘Salters Field’
  • car access via Pitt Street 
  • or catch the train to Westmead and it’s only a 10 minute walk from there
Arrive from 9.30am (real coffee from a Coffee Cart will be available!), with the walk commencing at 10am. Followed by free lunch, entertainment and activities until 1.30pm.

The walk itself will be ‘Passport Style’ – a route with different stations where you collect a stamps. A special prize awaits all those finishing with a full ‘passport’!

After the walk, there will be plenty of fun activities:
Free lunch for everyone, kindly provided by CMP
Kindifarm Petting Zoo will be there with a variety of baby farm animals.
Badge making by our UP!Club
Balloon Artist
A visit from our local Fire Brigade with their truck
Parramatta Brass Band will be performing throughout the day
There is a children’s playground adjacent to our area and plenty of shade provided by big Eucalyptus trees
Don't forget to buy a badge on Sunday from our badge making social enterprise
The next Step UP! event will be at Picton Sunday 1 November - details here

Thursday, 22 October 2015

People with Down syndrome ... being themselves, individually

Individual, personal stories told wherever stories are told in 2015 - on social media, in newspapers, through workplaces and community institutions have a different role, and are just as important as broad campaigns. Sometimes they are more important ...

A box is a box by any other name….
Alex McAuley, The Life That Max Built, 19th October 2015
... Max has risen to the challenge of living away from home brilliantly. He has shown us that he is more than capable of managing his own life as long as we ensure that the right supports are in place. So this brings me to my story ...

Down Syndrome Blessings
Jodi Myers, True North, 21st October 2015
I wish I knew then what I know now. These last twenty-five years have been nothing short of amazing. Let me take this opportunity to tell you about our daughter ...

Down Syndrome not getting in her way
Emma James, Waikoto Times, 20th October 2015
Cycling is just one of Courtney Duncan's favourite hobbies, and it is something she does well ...

#SeeTheAbilitySunday with Nick
Voices at the Table, 11th October 2015
“I was recently asked to give some advice to other people with Down syndrome? My answer was,
“When you have a goal, don’t quit, even if it takes more than one shot.”

I want to talk a little more about not giving up ... I wanted to apply to Campus For All because some of my friends were there, including my girlfriend. They all said, “Just get in. It’s great!” The first time I applied, I went for an interview but I didn’t get in. I didn’t really know why and that was that. I was disappointed but I knew that I would try again ...

Speech Pathology Australia Books of the Year

Great book list from Speech Pathology Australia, for families building a library for children:

The Speech Pathology Australia Book of the Year Awards aim to promote children’s books as literacy tools, as well as raising awareness of the role of speech pathologists play in helping children develop language and literacy skills.

The 2015 Awards were announced last week:
Birth to 3 years: Snail and Turtle and Friends by Stephen Michael King
Three to 5 years: Teddy Took the Train by Nicki Greenberg
Five to 8 years: Big Pet Day by Lisa Shanahan (Illustrations by Gus Gordon)
Eight to 10 years: Plenty – A Place to Call Home by Ananda Braxton-Smith
Indigenous children: Silly Birds by Gregg Dreise (Illustrations by Gregg Dreise).

Learn more about the winning books

The web page provides links to the 2015 short list, and award winners for several years - an excellent resource.

Wednesday, 21 October 2015

Rainbow Bridge Social Club

More 'rainbow' headlines, but this endeavour is local, and has a very different aim, with a similarly serious intent:

Rainbow Bridge: Mother and son start social club for LGBTQI youth with intellectual disabilities
Lucy Carter, The World Today, (ABC Radio) 20th October 2015
For many teenagers who come out as gay, working out how to start their first same-sex relationship can be a difficult process to navigate. For young people with an intellectual disability, it is even harder.

One mother and her teenage son are trying to make this experience easier for young people in New South Wales by starting up the state's first LGBTQI social club for 16 to 26 year olds with intellectual disabilities ...

Relationships and Private Stuff commented on Facebook with more information:
... Rainbow Bridge social club ... will start in late January 2016. The project is funded by My Choice Matters - The NSW Consumer Development Fund and supported by FRANS in Croydon and Twenty 10 in Chippendale.  
If interested in the social group and workshop

Ruby's Rainbow: cute images meet serious intent and practical outcomes

In discussion about the purpose of 'awareness' campaigns, and the need to move beyond 'cute' images of people with Down syndrome, here is one excellent example of a campaign that does just that.

Ruby's Rainbow is an on-going fundraising campaign with a very specific and serious purpose - financially supporting young people with Down syndrome attending college programs in the US, through individual scholarships.

During this current Down Syndrome Awareness Month they are effectively leveraging a series of very cute, professional quality images of two little girls with Down syndrome, photographed in college settings. They are beautiful images of beautiful children - but they make the viewer think way beyond how cute they are. The captions are funny too, and that helps.

"Ruby, did you know that Nicolaus Copernicus was a Renaissance mathematician and astronomer who formulated a model of the universe that placed the Sun rather than the Earth at the center of the universe?"

Did you know that there are over 250 programs across the United States that have post-secondary educational opportunities for individuals with intellectual disabilities? These inclusive college programs focus on the whole student with academic, internship, independent living, and social skills components.

The programs vary in length from 2 to 4 years depending on their focus. Some offer a university residential setting, while others are non-residential based. Many of the programs also take place in a community college setting. While a few students with intellectual disabilities will pursue a Bachelors degree, most program participants receive a Certificate of Accomplishment. They do, however, gain so much more! They are gaining confidence, lifelong friendships, and heading down the path toward independence!

Image: Ruby's Rainbow, used with permission
So what might they lead us think about, that cute alone does not? Not very long ago, the very idea of people with Down syndrome attending college programs (and in the US that often means on-campus living), was either not thought about, or was readily dismissed as impossible, so it opens up a whole new range of options for life after school. The captions are as much about campus life outside the classroom and curriculum, as about academics - and that challenges stereotypes (and parental thinking) too.

While college programs are a welcome and exciting development, they are not yet universally available, but these images can also open up thinking about possibilities for those who either don't have the option of college, or choose not to go to college - their options may be broader too.

The campaign is effective because it is engaging, and because it has a single, well articulated purpose: normalising and promoting the experience of post-secondary education for people with Down syndrome. It realises the concept by raising money for scholarships, going way beyond talking about a good idea, resulting in a tangible outcome impacting the lives of individuals with Down syndrome. It is relevant to both those of us 'in the know', and to the broader community.

There's a lot of 'bang' in Ruby's Rainbow's buck. And cuteness too, in just the right dose.
Earlier posts about post-school programs.

Tuesday, 20 October 2015

Seminars on supported decision making

'Look, Cook, and Eat' digital cooking magazine launched

Look, Cook and Eat is a logical progression from adapted cookbooks and menu planners, to an online service making the most of new media. The news about its release was passed on to us by well known dietician and advocacte Joan Medlen, so we know it is well worth considering:

Look, Cook, and Eat officially opened for business on 13th October - the first digital magazine designed to help teach people with special needs and learning challenges how to cook.

Screen shot from the Look, Cook and Eat website

With a yearly subscription, you have access (by computer or tablet) to new menus every other month (six issues per year). Every recipe in every menu will have photos of ingredients and tools needed and short, simple videos to show you how to make it. You receive an email when a new issue is available.

Several people with Down syndrome feature in the videos and images, and have been involved in development of the concept. Some unfamiliar products will appear on ingredient lists since it is US based, but it would be easy to provide images of local substitutes.

It would lend itself to classroom use or one:one learning with a support worker, as well as independent use. It could be a useful way to give in-family support at arms length.

Visit the website for further details, to see the promotional video, and to subscribe. And of course there is a Look, Cook and Eat Facebook page, and a blog!

Monday, 19 October 2015

Economic contribution of Australia’s family and friend carers dwarfs the amount spent on income support : Carers Australia

Porter Flags Cuts to Disability Payments
Xavier Smerdon, Pro Bono News, 15th October 2015
New Social Services Minister Christian Porter believes Australia is spending too much money and has flagged cuts to carer and disability payments ...

The Economic Value of Informal Care in Australia 2015
Carers Australia, 15th October 2015

Carers Australia Media release, 14th October 2015:
“A SkyNews interview with the new Minister for Social Services, Christian Porter, in which he suggests that growth in income support for unpaid family and friend carers is unsustainable, is disturbing,” said Ara Cresswell, CEO of Carers Australia. 
The Minister referred to a 14% growth in carer income support over a decade. “Such growth is totally understandable as the ageing population grows and as people with chronic health conditions and disability live longer due to improved medical outcomes.
“Importantly, there has also been a large growth in carer-identification in recent years due to the efforts of organisations such as Carers Australia and the efforts of governments - including the current government - to publicly recognise the value of unpaid family and friend carers.  
“Indeed, the Government is investing $33.7 million dollars over the next four years to build a Carer Gateway which will further promote such carer-identification and make more carers aware of the supports that are available to them,” said Ms Creswell.  
“For many carers, the intensity of the caring role means that they are unable to engage in work. In fact, 39% of primary carers (those who provide the majority of care to another individual) spend on average 40 hours or more caring every week – the equivalent of a full-time job,” said Ms Cresswell.  
“Even more to the point, a recent report by Deloitte Access Economics identified that the value of such unpaid care to the economy was $60.3 billion, or 3.8% of GDP, in 2015 – over $1 billion dollars per week. Not to mention the fact that aged care investment and the NDIS would be unaffordable without their contribution.  
“It is a pity that in National Carers Week many family and friend carers may feel that their access to the social security safety net is under threat.”

Sunday, 18 October 2015

Step Up! for Down Syndrome: some photos

Photos from both Step Up! events held today are on the Facebook pages of Down Syndrome NSW, and Step Up! for Down Syndrome Riverina. Here is a quick preview, but do go to the Facebook pages for more:

A good gathering at the beautiful registration point for
Step Up! for Down Syndrome Nowra -
Moona Moona Creek, Huskisson, on Jervis Bay

The weather was perfect for Step Up! for Down Syndrome
Riverina in Wagga Wagga
And sometimes, too much fun really is enough -
Dad's shoulder is the best!
Congratulations to all involved, organisers, sponsors and participants. Next week - Sydney!

Saturday, 17 October 2015

Step Up! for Down Syndrome this weekend

Wishing a very good day to those 

Stepping Up! for Down Syndrome 

tomorrow in 

and in 

Friday, 16 October 2015

Weekend reading and viewing: 17th - 18th October 2015

Abigail’s journey: A trip to Boston makes tomorrow possible
Thriving (Boston Children's Hospital), 12th October 2015
From the time Erika Jones was 30 weeks pregnant, she and her husband Stephen prepared for an excruciating eventuality. The Jacksonville, Florida, couple was told their daughter would die before or shortly after her birth. They arranged for pediatric hospice before Abigail was born. They made a decision tree factoring in clinical scenarios from intubation to a do-not-resuscitate order. They planned to scatter Abigail’s ashes on a Florida beach.

“We didn’t plan for this scenario,” says Erika, quietly glowing and cooing at the healthy newborn in her arms ...

Coping with Loss: Down Syndrome
Nancy McCrea Iannone and Stephanie Hall Meredith, Down Syndrome Pregnancy, October 2015
The book offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome by covering topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.

“This booklet provides an immense resource for families as they cope with the loss of their child. I take great comfort in knowing that it will reduce stress for future grieving families by guiding them through this difficult experience” ...

On their Facebook page, the writers commented:
After 7 years of working on this book, our gift to the community during "Down Syndrome Awareness Month" and "Pregnancy and Infant Loss Remembrance Day" is "Coping with Loss: Down Syndrome." Our message to that minority of parents who have experienced either a miscarriage or the loss of their baby or child is this: we are so very sorry for your profound loss; you and your child are important and are not forgotten ...

Michele Jedlicka, Inverell Times, 13th October 2015
They were road-weary and dusty, but smiling.
“Big grins on our faces,” Inverell Scrapheap team member Brendon Campbell said.The Scrapheap Adventure Riders returned home last week from the trip, and raised a significant amount for Down Syndrome NSW. 

“We raised over $20,000, the state raised over $65,000, so our team won the award for Best Fundraiser,” Brendon said. “The next highest team, Sydney, raised $7000, and they have twice as many riders as us" ...
Emi Campbell, Col Meacham and Grace Gilsenan, 
daughter of Scrapheap Ride founder Perry Gilsenan. 
Photo:Brendon Campbell
People With Down Syndrome Design Unique Tattoos For Loved Ones -the results are gorgeous
Kimberley Yam, The Huffington Post, 17th September 2015
These tats are beyond awesome.

In an episode of tattoo reality show "Ink Master" that aired earlier this month, the contestants (all professional tattoo artists) were challenged to ink clients with designs created by their loved ones, who all have Down syndrome. The project not only produced beautiful results, it also moved several of the tattoo artists who were involved ...

Starting with Julius, 15th October 2015
A few days ago it was the International Day of the Girl Child and social media joined in the discussion about the importance of education and empowerment for girls. It was a day for standing up for the rights of young girls and to recognise their voice and their capacity to change our world for the better.

One young girl who is doing just that is Emily Prior, an eight year-old from Perth, Western Australia, who has cerebral palsy and is challenging the advertising industry to include people with disability, by forging a path as a model – on her terms ...

Congratulations: Ann Sherry, Australia's most influential woman, 2015

Congratulations to Ann Sherry on this significant award, presented in Melbourne last night. Ann won the overall award, and in the 'Diversity' category.  Another example of good timing, coinciding with Down Syndrome Awareness Week/Month. In addition to all of the influential roles and activities highlighted in the awards media, Ann has been a generous and influential contributor to the Down syndrome community, both locally and nationally, along with her family. And of course, we know her as Nick's mother, too:

From social worker to CEO: Ann Sherry named Australia's most influential woman
Australian Financial Review, 16th October 2015
Ann Sherry, former prison social worker who rose to head a major cruise ship line, has been named Australia's most influential woman. 
Ms Sherry, the chief executive of Carnival Australia, was named the overall winner of the 2015 Australian Financial Review and Westpac 100 Women of Influence Awards from more than 500 entrants across 10 categories for her corporate leadership and the promotion of diversity and female representation during her nearly 30-year career.

"Women from all walks of life across Australia know of Ann Sherry. They know of her sustained work for women, minority groups, business and the arts and her outstanding reputation of making a real difference," BHP director and 2015 Awards judge Carolyn Hewson said. "She is a woman of great influence and we thank her."
Ann Sherry named Australia's most influential woman
Michael Sheather, Australian Women's Weekly,
first published January 2014, updated 16th October 2015
She is one of Australia's most accomplished chief executive officers,
but her greatest achievement is seeing her son, Nicholas, flourish ...

Thursday, 15 October 2015

Well done, PWDA

NDIS Citizens’ Jury Scorecard Project awarded international honour
15th October 2015

People with Disability Australia has been awarded an international honour for its ground-breaking National Disability Insurance Scheme Citizens' Jury Scorecard Project.

The NDIS Citizens' Jury Scorecard Project gave people with disability the chance to have their say in how the NDIS is working. It was named International Project of the Year at the International Association for Public Participation (IAP2) Core Value Awards in Perth last night.

PWDA delivered the project in conjunction with the National Disability Insurance Agency (NDIA) and Max Hardy Consulting.

The project also won the Australasia Project of the Year Award and an Australasian Health Project Award.

PWDA President Craig Wallace said: “PWDA is thrilled we have been recognised for thinking outside the box and ensuring people with disability have their voices heard on an issue as big as the NDIS.

“The NDIS is a public asset and the Citizens’ Jury enabled a diverse group of citizens, including people with disability to develop a scorecard on this scheme after hearing from the real experts in the room – those actually receiving disability services under the new NDIS,” Mr Wallace said.

“We thank everyone who was involved in this project and the NDIA for their ongoing support and commitment to ensuring the voices of people with disability are heard.”

NDIA Acting CEO Louise Glanville said the innovative project had helped guide and shape the development of the NDIS.

“The NDIA congratulates People with Disability Australia for their work on the Citizens’ Jury Scorecard Project.

“This project has been an important part of helping us hear from people with disability as we prepare to roll out the NDIS across the country,” Ms Glanville said.

The IAP2 said there were a number of aspects of the NDIS Citizens’ Jury project which make it unique and stand out as a finalist. They include:
The extraordinary level of trust and commitment to the outcomes shown by the National Disability Insurance Agency senior leadership - a start-up public sector agency with a $22 billion per annum budget at maturity, in a deliberative process which exposed them to unprecedented transparency and scrutiny. The NDIS is, arguably, the biggest social reform since Medicare in the 1980’s;
The random selection of both jurors and witnesses to ensure that the process pulled in genuinely random and new voices to render the scorecard on the NDIS;
The efforts made to ensure that populations of people with disability normally excluded from jury processes were fully included, especially the innovation used to include people with intellectual disability;
The innovative methods used to combine random witnesses, advocate witnesses with a disability, random interviewee’s, focus groups of people with an intellectual disability and an agile use of social media to ensure that the process cut deep and wide in a way that matched the ambition of the NDIS;
The application of the deliberative process to a social policy space in a way that was uniquely appropriate to produce a participant lead scorecard that was uniquely timely and appropriate;
The work to document and film the project, to debrief and to learn from the project in a way consistent with the values of the NDIS and best practice in public participation; and
The steps taken to ensure the integrity, good governance and standing of the project, especially through robust application of the IAP2 core values.

Click here for more information about the IAP2 Awards (PDF) or here for a Word Version of this information.

Click here for full background and additional information on the NDIS Citizens’ Jury Scorecard Project.

Click here to access the Think Films documentary on the NDIS Citizens’ Jury Scorecard Project.


From CHW School Link (supporting the mental health children and adolescents with an intellectual disability):
The Traffic Lights® App helps adults to identify, understand and respond to children’s sexual behaviour.
The App is based on the Traffic Lights® framework used by child protection authorities around the world. It supports the development of healthy sexuality and protects young people from harm and abuse.

Traffic Light colours are used to describe whether a specific behaviour is normal or not. It follows a logical structure:
- Enter the child’s age, sex and type of behaviour
- Identify whether the behaviour is green, orange or red by clicking the traffic light colours
- Swipe to see the possible reasons for this behaviour and how you might respond
Most sexual behaviours of children and young people are normal and healthy. However, please note that laws vary from place to place. While green light behaviours are normal and healthy, they may not be legal in every jurisdiction. 
The app is currently available for $2.49. It has been developed by Family Planning Queensland who have some other great disability specific teaching resources which you can access here.

Wednesday, 14 October 2015

Lightening up ... a little

Here is a bit of fun to lighten up some of the more serious thinking Down Syndrome Awareness Week/Month sometimes requires.

The first one has both lighthearted and more serious intent, but it is presented in a fun way, by an understanding and pretty cool Dad. You can join the Facebook group to see your own daily dose of Just Jessica ...

Dad Starts Each Day Drawing Comic of Daughter With Down Syndrome
Melissa McGlensey, The Mighty, 13th October 2015
Jessica Wills may have Down syndrome, but she’s still “just Jessica.”
The 15-year-old from Stratford, Connecticut, is the inspiration behind her father’s ongoing comic, called “Just Jessica” ...

A little extra
Conny Wenk is a German lifestyle photographer, well known internationally for her work with children and adults with Down syndrome, and the calendar she produces. Her 'A Little Extra' blog has moved to an Instagram account, connywenk, where she posts a photo each day with the hashtag #alittleextrabyconnywenk

Who should protect children with disabilities? Everyone.

NSW Council for Intellectual Disability is the very active peak NSW body for people with intellectual disability. The blog they started about a year ago, addresses important current matters concisely and directly direct. The latest, a guest post by Sally Robinson was published yesterday:

Protecting children is everyone's business!
Guest post by Sally Robinson, NSW Council for Intellectual Disability (blog), 13th October 2015
"Protecting children is everyone's business" - It is especially worth thinking about how much really goes into making the protection of children and young people with intellectual disability everyone's business. 
Sadly, research and experience show that in the lives of too many children and young people with disability, there is a reluctance on the part of many people to make it their business to help keep children safe, or to step in to prevent or stop harm from occurring. 
The horrifying statistic that children with disability are over three times more likely to experience abuse than their peers without disability should give us all pause ...

Tuesday, 13 October 2015

Good story, well told

It's easy to find fault with the ways people with Down syndrome and other disabilities are presented and represented in the media - we have aired our share of criticism, and will continue to do so. 

Alexander Darling's recent article in the Sunday Age, and Simon O'Dwyer's accompanying photos of Phoebe Mitchell's preparation for the 2015 City2Sea to be held in Melbourne in November, lift the bar considerably.

Phoebe speaks for herself about her race preparation, her previous achievements are acknowledged, and her mother adds some information about how some of the physical manifestations of Down syndrome impact running. Not a mention of 'overcoming Down syndrome', or of 'inspiration' - just how Phoebe gets on with her training, illustrated with excellent photos of an athlete looking as though she has been working hard, sweating, looking fit, focussed and determined, doing what she has to do to compete in such an event, in a beautiful setting. The support she has is acknowledged, but not lionised.

Phoebe is representing and raising funds for Down Syndrome Victoria, with none others. All the best, Phoebe and the DSV team. Thanks to the Sunday Age for a good story, well told. 

Go and look and those photos.


Six performers with Down syndrome make up RUCKUS ensemble. Some of their names and faces will be familiar to regular readers. They don't make 'Down syndrome theatre',  or 'disabled theatre' -they make original theatre.

Learning about their latest initiative is timely in Down Syndrome Awareness Week/Month, in light of questions about awareness, activism, inclusion, rights, leadership, and agency. Whether you decide to support their project's fund-raising drive or not, the page is well worth reading to learn how they see themselves, and what they want to achieve.

From the Speed of Life campaign page, launched this week:
RUCKUS is a Sydney based disability led theatre ensemble who through their original, thought provoking and powerful performances smash stereotypes and challenge audience’s preconceptions of what people with disability are capable of achieving. 
RUCKUS reject being victims of pity but rather embrace being active agents of individual and societal change. 
As leaders in the disability community RUCKUS work to address inequality, social exclusion, the lack of meaningful employment opportunities for people with disabilities and address the basic human right everyone has to lead a rich, full and vibrant life free from prejudice and harm ...

You can follow RUCKUS on Facebook, Twitter and You Tube - links on the campaign page.