Want to join the #notspecialneeds campaign for World Down Syndrome Day 2017?

The CoorDown Italy collaborative video 'Not Special Needs' released late last week, has been enthusiastically received around the world, especially for its use of humour to make the point about universal human needs.

Do you have a favourite scene? The guy swaggering down the supermarket aisle in a full suit of armour is popular!

You can join in the #notspecialneeds social media campaign with Down Syndrome Australia, one of the international collaborators:

Write your poster, take a photo of you holding your poster and send it to the DSA Facebook page as a message to share on the Down syndrome Australia website, Facebook and Twitter. 

Here is what you put on your poster:

"I need ..........

Is that special? 

#notspecialneeds"

Visit the DSA Facebook page to see the posters already shared.

#notspecilaneeds ! World Down Syndrome Day video's important message

Starting with Julius

The 2017 World Down Syndrome Day (WDSD17) video campaign created by Publicis NY for CoorDown, Italy and with the participation of other Down syndrome organisations, including Down Syndrome Australia, is a powerful example of how inclusive and authentic representation of people with disability in mainstream media can help change cultural attitudes and assumptions to disability – even subconscious attitudes predicated on the well-meaning euphemism “special needs” ...

Watch the best short movie of the year

Maeriah Nicholl, Living with a Little Moxie, 17 March 2017

#NotSpecialNeeds just came out in time for World Down Syndrome Day and it is my favorite short of 2017.

... Main points from the #NotSpecialNeeds campaign are:

• People with Down syndrome have human needs; not special
• Accommodation for disability isn’t a “special need”
• The words “special needs” segregates, excludes and stigmatizes; it’s not by and for people with disabilities (who largely consider “special needs” to be patronizing and condescending) ...

More on health ...

Coincidental to our previous post, this appeared on Facebook today.  Now would be a good time to start following the Adult Down Syndrome Clinic on Facebook,  if you are interested in these questions, posted 29 June 2016:

Expansion of Research and Education Programs at the Adult Down Syndrome Center
What are the critical issues facing people with Down syndrome?

This is an important question for people with Down syndrome, their families, and agencies that serve them, including the Adult Down Syndrome Center.

While there are additional issues and each of us may have a different answer to what is important, our discussions with many individuals, our clinical experience and our review of others’ publications has led us to prioritize these 3 issues and seek ways to address them:

1. Healthy aging and Alzheimer disease
This includes addressing health care issues across the life span to promote good health for its own sake in the younger years but also to set the stage for healthy aging. This also includes determining appropriate health screening for adolescents and adults with DS as well as studying a variety of health conditions.

2. Social skills and daily function optimization
Our initial interest in this topic revolved around the issue of transitioning out of high school and the challenges that has presented for some of our patients. However, it is clear that there may be issues across the lifespan to be addressed.

3. Self-promotion of health
How do we include people with DS in the process of promoting their own health?

Over the next several days (and weeks), we will be posting information as to what some of the questions are that we are addressing and how we are addressing them. In short, we are expanding our research and education efforts. As we progress through this journey, we will be looking to you for input and feedback and will reach out to you as we develop the feedback process.

Resources: online and on the air

Down Syndrome Australia: Easy Read Facebook page - complements the Easy Read edition of the  Down Syndrome Australia website

Accessible Arts Newsletter, June 2016

The Power of 'No'

Service, Support and Success, Volume 5, Issue 6, June 2016
... think about our members (term used for the people we serve). Depending on their history, they may have been in situations where saying “NO” was not allowed or not respected, but I’m sure they heard it, repeatedly, throughout their day. I spent my early years in the field experiencing many different types of support settings, where a member saying “No” was not allowed and certainly not respected. ‘No’ is a word that invokes negative feelings just by hearing it and, if it is the first word of a sentence, we will hear nothing else. We are in a new era where a member saying “NO” is a member saying “NO.” We need to value and respect all requests our members make and consider each request as we would want our requests to be considered before we make a decision ...

• Back issues of Service, Support and Success

On the airwaves and on track
Wendy Andrews, Coffs Harbour Advocate, 16 June 2016
Community radio station 2CHY is giving young people with disabilities a voice. As the result of a grant received from the Law and Justice Foundation, 2CHY is working with students from Toormina High School's Support Unit on the My Voice, My Ability, My Rights program.

"What we're doing with the My Voice, My Ability, My Rights program is training students in broadcasting and interviewing skills," station manager Becky Cole said ...

Keeping up with 2016

Welcome back - didn't that end-of-year break go fast? There's a bit going on in the disability community generally, and Down syndrome community in particular, but we will ease into it, since some of us are still on holidays, especially here in Australia.

First up - just before Christmas we posted about 12 year old Caleb Jordan's debut as a catalogue model for Target Australia. If you'd like to follow his progress, you can do so via his Facebook page and Instagram account @caleb_jordan1312.

If you would care to share what you have been doing, or to recommend something we should follow or address in 2016, or send us a photo or two, you are very welcome.  Please use this email address to reach the blog editor directly: downsyndromenswblogs@gmail.com, or  admin@dsansw.org.au for the Down Syndrome NSW office.

Advocacy at work

Incidents of discrimination and bullying are still everyday events in the worlds of many people with disabilities, and the need for swift, responsive and effective advocacy exists alongside broader campaigns for inclusion and acceptance, as these two examples show:

When a journalist posted an insulting hashtag on Twitter earlier this week, in relation to comments about the lack of a Minister for Disability in the new Federal Cabinet, the NSW Council for Intellectual Disability came out to highlight, correct, advocate, and to offer disability sensitivity training. This morning, NSW CID posted on Facebook:

Good News!! - an update on the ‪#‎Rword‬ post!
Yesterday we received an apology from both the journalist and The Australian newspaper. Plus an apology on twitter! The paper said they will take us up on our offer to work with them on some disability awareness strategies.

Thanks to everyone who liked and shared our post. Lots of people agreed with us - don't use the #Rword 

Together we have made some noise and some progress! Well done and thank you!

NSW CID

You might also have been aware of an example of blatant discrimination that occurred in Brisbane

recently, and 'went viral' on social and other media. In this case, the young man's family and the media were his advocates, and an apology has been issued. Down Syndrome Australia CEO, Ruth Weber was interviewed on ABC radio:

• JB Hi-Fi accused of blocking man with Down syndrome, Natalie Bochenski, Brisbane Times, 22nd September 2015

• The Project, Ten-Play, 22nd September 2015

• JB HI-FI Statement, issued 22nd September 2015

JB Hi-Fi is committed to providing all customers with the best possible shopping experience. 

We have investigated the incident involving James Milne and his family at our Mount Ommaney store. 

We apologise to James and his family for any distress he has suffered as a result of this incident. 

JB Hi-Fi and the manager of our Mount Ommaney store believe that we could have managed this in a better way in the interests of James and his family. 

JB Hi-Fi is committed to learning from this and improving our customer experience across all of our stores. 

To support this we are reviewing our customer policies to make sure that they reflect best practice. 

Richard Murray CEO of JB Hi-Fi said “We would like to apologise unreservedly to James. We should have done better yesterday. We are going to make sure that we learn from this and do better in the future. I have sent a personal letter of apology to James and we are continuing to endeavour to contact the family to apologise directly.”

'Barriers to Communication' Social Media Forum

People with Disability Australia will host a Facebook event this Saturday, 29th August 2015
between 10:00am and 4:00pm.

Communication and access to information is becoming more important than ever for people with disability as the National Disability Insurance Scheme (NDIS) rolls out. 

People with disability will struggle to have a say or have our voices heard if we are denied access, on an equal basis, to communication and information ... We want to know what your experiences have been when it comes to comes to communication and accessing information.

Click here to go to the event page and see how you can participate.

NDIS and Me - closed Facebook group

Social media, including Facebook has allowed people with disabilities and their families unprecedented access to the support of others with similar interests around the world, all the time, very inexpensively. 

That freedom also comes with a degree of vulnerability, so higher levels of privacy, and the oversight of administrators makes closed Facebook groups more secure for all. 

We have just passed the second anniversary of the implementation of first trial sites for the national Disability Insurance Scheme, and the full roll out is on its way. It has been called the biggest social change in Australia since universal health care, in the form of Medicare, was introduced in the 1970s. The NDIA is using many different platforms to promote the transition to the NDIS. This one is specifically for people with Down syndrome and their families:

NDIS and Me is a closed Facebook group for Australians with Down syndrome and their families. The aim of the group is to help its members to get ready and get the best outcomes they can from the National Disability Insurance Scheme (NDIS).

This Facebook group is just one of a number of Local Support Groups (LSG) being set up across the country by peer support organisations. Most LSGs will be face-to-face groups in local places, but you can take part in this group, wherever you are in Australia. We hope that people already in the NDIS as well as people yet to sign up will join this group to share information and support.

The group is funded by the NDIA and its goals include that people will learn how to:

• Exercise choice and control
• Effectively engage with the NDIS
• Effectively engage with mainstream programs, services and activities
• Increase opportunities for independence, self-management and community inclusion

DSWA runs the group with support from DSNSW and DSV.

• Get more information and request an invitation to join the closed Facebook group here.

Resources: social media, books, video and more

RLI Closed group
A closed Facebook group for families and educators using or interested in using Down Syndrome Education International's Reading and Language Intervention for Children with Down Syndrome (RLI).

RLI is an evidence-based program designed to teach reading and language skills to children with Down syndrome. It incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomized controlled trial and found to improve rates of progress compared to ordinary teaching.

Disabi(LIT)y - disability in literature
A blog about books focussing on or featuring people with disability - fiction and non-fiction, including reviews and recommendations, written by the mother of a boy with Down syndrome. If you are a reader, this one's for you. A link has been added to our list of 'blogs we read' in the right hand column of this page.

Too Many Elephants In This House - Auslan
Children's book in Auslan and text on video



New book for health professionals
Down syndrome: Current Perspectives

Richard W. Newton, Liz Marder, Shiela C. Puri, April 2015

Down syndrome; Clinical Perspectives provides doctors and other health professionals (Publisher's note)
with the information they need to address the challenges that can present in the management of syndrome. Chapters written by internationally respected paediatricians with a special interest in Down syndrome, cover Down syndrome comorbidities, such hearing problems, gastrointestinal disorders, congenital heart diseases, as well as the underlying biology and new developments in molecular genetics. Contributions from the UK Down Syndrome Association and Down Syndrome Medical Interest Group define how doctors can work effectively with other professionals to improve health care provisions for this group. Each chapter is illustrated by informative case scenarios and answers to FAQs from parents and carers.

New in the DS NSW library

Frans Families, by Lorraine Maclarty
A beautiful large format book, featuring photos and stories about twelve people with disability associated with FRANS, a Disability Support Organisation located in Sydney's inner west. The book features a number of young people who are also members of DS NSW. Thanks to Margot Elliffe for donating the resource to our library.

Email: library@dsansw.org.au


Safe at Schools - exploring safety and harm of students with cognitive disability

Dr Sally Robinson, Lel D'Aegher, Anne Graham, Dominique McGovern, Southern Cross University, 2015

Students with cognitive disability experience higher rates of abuse, neglect and exploitation than students without disability. This research project investigated what students, their families and other key supporters such as teachers, disability, and child protection workers think about personal safety in and around school, together with their perspectives on what might make things better. The research was supplemented by an extensive analysis of relevant law and policy in this area. 

The project resulted in a research report; and resources for students, families and professionals working with students who have cognitive disability.

Picture My Future

Picture my Future, also known as Image-supported Goal Exploration, is a visual support resource to assist people in the planning process, produced by researchers at Deakin University.

There are five modules:

1. Introduction to Picture My Future
2. Communicating with a person with disability
3. Where does Picture My Future fit in the planning process?
4. Picture My Future - a guide
5. Using pictures to explore hopes and dreams

Someone is No One. Someday is Never 
Crystal Lynn,  Service, Support and Success, Volume 4, Issue 5, May 2015
A person receiving services (the term ‘member’ will be used hereafter) approaches a staff supporting him in his home and says, “I want to go to the movies.” Staff looks up from a pile of paperwork and responds, “Yeah, that sounds nice. Someone can take you soon.” ... These are common dialogues between members and staff. On the surface it seems harmless, but it can actually be quite damaging. In the field of service provision to people with disabilities, we’ve talked about the importance of supporting individuals to make choices. We’ve talked about the hazards of saying ‘no.’ What we need to talk about now is the tendency to – and the danger of – non-committal responses ...

• Link to back issues of Service, Support and Success on the Vita Living Services website, here.

PWDA 'Citizen Jury' on the National Disability Insurance Scheme

 People with Disability Australia is hosting a 'Citizens' Jury' event on social media. This information is from the PWDA Facebook page:

Saturday, November 29 at 12:00pm - 4:00pm 

It’s time for people with disability to have OUR say on the NDIS (National Disability Insurance Scheme)! PWDA members, and the disability community are invited to tell us what YOU think at the online forum.  

PWDA President Craig Wallace and Board members will be online to join the conversation and you can also have your say on Twitter #ndisscorecard 

Your input will form the People’s submission for the NDIS Scorecard Project and will be presented by PWDA to the Citizens' Jury being held in Sydney in February 2015.

• Sign up for the event here

Down syndrome awareness ... and beyond (5)

As she has done for some years, Angela Lombardo, Down Syndrome Program Coordinator, Boston Children's Hospital, is posting each day for Down Syndrome Awareness Month on the program's Facebook page - her personal reflections will resonate with families everywhere. This selection is reprinted with her generous permission: 


DS Awareness Month Post #18/19:

Honestly, I have nothing. Some days I don't even think about DS. This word isn't on the tip of my tongue at all times. I am not "dealing" with it 24/7. I am raising my son. I don't forget but it's not on my radar all the time. I didn't wake up today thinking "I will take my son with DS to the mall today". 

This label "DS" plays a huge role in our world. My son has it. I work in a DS program and say this word countless times each week. It doesn't leave my tongue at work but when I am not at work and home and just LIVING it's not the main focus. When he was little, it was. It's all the doctors wanted to talk about. It's what everyone focused on. "He has DS, so...." "Because he has DS, we need to...." Maybe since it was so new to me, it felt like it was always in the front of the line. 

As time goes on, it sort of lost the "need" to be said so much. It doesn't go away, he still has it. Living day to day though, it's not a focus it's more of an understanding. We do things differently DUE to the fact he has DS. We adapt, we accommodate, we bend/twist things as needed but it just goes without saying why. It's just living. It's my knowing what Isaiah needs and meeting those needs. It's less on the label and more on the kid who has it. 

I guess my thought today for DS Awareness Month would be .. yes, I am aware and families are aware but it's not always the main focus...the child is. I look at this picture of us and see my son not just a label.

DS Awareness Month Post #16: 

Does your neck hurt from all the hats you have to wear sometimes on your head? How on earth can we do it all? 

I remember when Isaiah was young and I would just shake my head and say forget it, you are not getting any floor time today! He hated floor time so he would get grumpy and then I would get grumpy and neither of us benefited from his laying on his belly. I felt guilty then would lie to the EI PT who asked if we got our floor time in. Of course, we did ... how could I tell her no way? I was worried I'd be judged. What kind of mother am I if I can't deal with some exercises and his cranky ways? I remember skipping Speech so I could take him to the zoo. I justified it easily since we talked about animals. 

We had so many appointments between doctors and therapists. I felt so much pressure to get him ALL the services he could have so he could do his best BUT I started to feel we were losing focus and burning out. 

At what expense did we do all that? Can't he just be a kid? Can't we just not "treat" or "work" on something? Can we sit around in PJ's watching a movie without feeling we are missing CRUCIAL learning moments? Will he never perfect his pincer grasp due to our love of Toy Story? 

Balance is everything. I had to shake off that self-inflicted pressure of doing it all. He will have a pincer grasp. He will be just fine. He is not a science experiment or a part time job that I have to punch in and punch out each day making sure I completed all tasks required. He still got his therapies. We still played hooky now and then when we felt wild and crazy. It's a balancing act.

 Find your balance and don't forget that you can always practice the pincer grasp eating Cheerios while you watch Toy Story!

DS Awareness Month Post #3: 

It's fine to cry. There are so many reasons why tears can come. 

When you first hear diagnosis, you may have tears from shock, tears from being afraid, tears from loss, tears from being overwhelmed. You may cry when you first hear from relief, understanding, peace. Your tears may not come until later. You can have tears from loving someone so much it just hurts. You can have tears from wanting to fix something way out of your control. 

We can cry about wanting to take away troubles that we can't prevent from coming. We can cry out of pride and feeling so much relief about something wonderful that happened. We can cry with others since we can relate. We can cry for others since we can relate. We can cry when we learn things weren't as bad as we thought. We can cry when things get harder than we ever thought they could be. I am not a huge crier but when it comes it's needed. It's a release. It's a huge reminder that something means so much to me. 

Some may feel crying is negative but I think it's a huge testament that we have hearts, feelings, love and people that mean the world to us. I have shed tears for so many reasons. I have been with so many families shedding their own tears out of sadness, fear, happiness, joy, etc. People apologize but I say don't. You are doing what you need to do right now. You need to cry and there is nothing wrong with that. It's fine to cry.

Special Olympics National Games 2014, Melbourne: on now

Congratulations to all the athletes selected to compete in Melbourne at the 2014 Special Olympics National Games.  The Opening Ceremony was on Monday evening, and competition started yesterday.

The very first gold medal of the Games was won in the pool, by our own Louise Richardson - congratulations Louise!  There were lots of pale blue shirts (go Team NSW) sporting medals by the end of the day, and the excitement is building as each sport begins.

Special Olympics Australia is posting photos regularly on Flickr and on Facebook, and most state and regional teams have their own Facebook pages where you can follow along with the competition and other Games events.

Good luck for the rest of the week, Team NSW - have a wonderful time!

• Special Olympics National Games 2014 on Facebook
• Special Olympics NSW on Facebook

Tuesday Chatter on Facebook

The last Tuesday Chatter for 2013 is in session on the Down Syndrome NSW Facebook page.

The topic is, naturally, holidays ... tips for promoting family fun and reducing stress for a successful
holiday.

You are welcome to join in by contributing your thoughts or questions as a comment to today's Facebook status.

'2013 Formals' album

A gallery of photos from this year's school formals (Year 6, Year 10, Year 12) is growing on our Facebook page - thank you for sharing.  You are welcome to post yours to share with followers and visitors.

And do drop by to see them.

Q and A with Hank Jongen (Centrelink) on Disability Support Pension

The Department of Human Services is hosting this practical event through their Facebook page. 

Do you have a question about the Disability Support Pension? 

On Tuesday 3 December from 1-2pm (AEDST), join Department of Human Services General Manager Hank Jongen where he will answer your questions during a live 1 hour Q & A session. If you have a question, all you have to do is be here on this event page on the day when we’ll open comments and post it on this event wall. 

The Q & A session will take place on International Day of People with Disability (IDPwD), as part of our celebrations.        ... Event description - further details here. 

Opportunity for artists to gain exposure on social media

Here is a great offer from Accessible Arts, NSW peak body for the arts and disability:

Hello artists living with disability! We'd like to feature your artwork on our Facebook header.

Send images to info@aarts.net.au with information about the artist and the artwork. All images will be credited and featured on our website along with a short story about the work.

The first one is up already, so don't hesitate!