DSA website makeover

The new Down Syndrome Australia website is now live. It has a fresh new look, links to DSA's Easy Read website and importantly is now mobile-friendly.

Your feedback is welcome.

John Livingstone Dance

Should we just allocate a whole separate page of this blog to dance? No stereotypes, but we could post links to it often ... like this new UK company:

John Livingstone Dance
John Livingstone has launched his own dance company. He has been selected to appear at the Resolution Dance Festival, at The Place, London in February 2017. You can start with a delightful short video of John performing, and explore his website for more information.

Resolution is The Place’s annual, new year festival of short live dance and performance works by emerging artists ... 2017 will be Resolution's 28th edition. It is a unique platform for artists to present their work on an established London stage, as well as offering support and guidance throughout the process, from application to post-performance.

Thanks to Down's Syndrome Association (UK) for the link.

New resources from UK to support people grieving

New resource in 'Breaking Bad News' portfolio
New guidelines have been released on the UK Breaking Bad News website, on talking about death to people with intellectual disability:

On this downloadable sheet you can fill in someone’s current ‘framework of knowledge’, describing a singular chunk of knowledge in each empty box. You can also describe the chunks of knowledge that need to be added.

Earlier posts on resources from this project are here (2012) and here (2013)

Managing Grief Better: People With Intellectual Disabilities

Prof Sheila Hollins, Intellectual Disability and Health, February 2016

It is imperative that all people, including those with learning disabilities, are able to access the supports given in their culture to understand death and loss.

• This article is a substantially re-written version of one that appeared in The Habilitative Mental Healthcare Newsletter, May/June 1995, Vol. 14 No. 3.

Down Syndrome Australia: Easy Read version of website

Down Syndrome Australia has launched an Easy Read version of their website, alongside the regular version. You can access it directly from the main home page ...

Diversity in advertising - some recent thoughts and action

Five years ago, NSW and Victorian families of adults with Down syndrome looked back on the changes they had been part of, for Views from the front lines: more than thirty years of family life, published in Voice (now the journal of Down Syndrome Australia). Their answers to the first question, What is the biggest change you have seen for people with Down syndrome in general? were summarised as ...

“Visibility. People with Down syndrome are no longer confined to family homes into old age. They are out and about – on public transport, in the supermarkets, at the beach, at the movies, on TV and in film.”

“There is a greater acceptance and understanding by the community in general.”

“Many people still have not had any contact with people with Down syndrome and do not realise their potential. People are still amazed that a person with Down syndrome can read, write, use mobile phones and use public transport.” (Voice, September 2010)

The evolution of the concepts of 'awareness', 'advocacy','inclusion' and 'acceptance', towards greater visibility, more appropriate representation in all forms of media and inclusion in all aspects of life remains a key interest of the Down syndrome community (and those interested in all people with disabilities), and has become the subject of more focussed campaigns and study, as in these very recent examples:

Starting with Julius
You might be aware of this Western-Australia based campaign (it has featured in the Australian Women's Weekly, as well as online) that is part of an emerging international drive (see Changing the Face of Beauty on Facebook).

Its website was launched last week, and includes a new blog well worth reading, with an initial post by Robert Hoge. Julius's mother, Catia Malaquias, advocates on a number of fronts in addition to her focus on advertising - she is interested in  the nature of 'awareness' and advocacy, international rights, and inclusive education, for example.

'We are committed to the equal representation of people with disability in advertising, media and beyond and the use of empowering and inclusive imagery and messages.'

Where Are All the Disabled People in the Body Positivity Campaigns?
Rachel Cohen-Rottenberg, The Body is Not an Apology, 23rd August 2015

... I was shocked when I realized that theories built on an awareness of the devaluation and stigmatization of bodily difference often ignore the category into which everyone might someday fit: disability ... In the popular media, so-called “body positivity” campaigns leave out disability to a remarkable extent. The body about which we are supposed to feel positive is nearly always the able body. That body might be fat or thin, white or black, Hispanic or Asian, tall or short, rich or poor, but it is almost always able ...

What people don't get about the hot model with Down syndrome

Love That Max, 20th August 2015
As the world cheers on Madeline Stuart, the Australian model with Down syndrome who just announced she'll walk the runway at New York Fashion Week, I'm cheering too. Yet I'm also feeling uneasy, because negative perceptions of people with disability are rearing their heads ...

Edit: added 30th August 2015:

Yes, fashion has flirted with using models with disabilities, but it has to do much more if it is serious about catwalk diversity
Hannah Marriott, The Guardian, 30th August 2015
... This handful of examples is a drop in the ocean of a multibillion-pound global industry, but it does represent “some increase” in the use of models with disabilities, says Cat Smith, a doctoral researcher at London College of Fashion. “In general there is real cultural invisibility when it comes to those with disabilities – in fashion, on TV, in film, in politics, in writing,” she says. “So it’s certainly important to see disabled models, because seeing people who look like you is important in fostering empowerment and making you feel a little less invisible. Visibility also creates a more realistic representation and understanding of the lives of people with disabilities ...

Launch of new NSW CID website

NSW Council on Intellectual Disability is excited to announce the launch of a new website. A new and improved design layout will ensure ease of access for everyone who is looking for information on all facets relating to intellectual disability.

Screen shot from the new home page

One of the first things you will see on the new home page is a link to information from the We Are Worth the Investment conference held in Sydney in July. You can read/download the presentations from the 2 days.

The NSW Council on Intellectual Disability is the peak body representing the interests of people with intellectual disability in NSW.

Welcome to our new website

Down Syndrome NSW has had a website since 1996 - we very quickly realised how effective the internet was going to be for us, in communicating with families, and with colleagues and professionals around the world, at great speed and low cost. Our website has undergone continual evolution and a few complete makeovers during that almost-twenty years.

Have you checked in lately to www.downsyndromensw.org.au? Go and look right away, and see its latest incarnation - updated, refreshed, easy to navigate, new images - and add it to your favourites or bookmarks for future reference.

Consider passing on the link to others who need information about people with Down syndrome, about events and services - family members, friends, your child's school, professionals who support your family, people in your community.

Bus Stop Films - new website

Bus Stop Films (Be My Brother, The Interviewer, Heatbreak and Beauty, and many more), international award winning inclusive film maker,  has launched its new website.

Visit to see the excellent work being done in film making by and with people with Down syndrome and other disabilities on both sides of the camera.

You will need to check in often to keep up with their new work and the astonishing frequency that they win awards (and film reviews, such as Nathan Basha's take on Gladiator).

Genevieve Clay-Smith has taken Bus Stop Films to great 

heights since first working with people with disabilities at 

Down Syndrome NSW. She is currently 

NSW Young Australian of the Year in recognition of her work.

Resources

Children’s Books Honored For Disability Storylines

Michelle Diament, Disability Scoop, 5th February 2015
The winners of this year’s Schneider Family Book Awards include tales of a boy who stutters, a girl with autism and young adults with intellectual disabilities during transition.

The Schneider awards are presented annually by the American Library Association to authors or illustrators for the “artistic expression of the disability experience.” One award is given for works aimed at each of three audiences — kids up to age 8, those ages 9 to 13 and teens.

Fasten Your Seatbelt - short videos
A series of very short videos featuring Brian Skotko and Sue Levine  discussing single topics from their well loved book for siblings, could be useful for discussion with siblings, about one thing at a time.




These resources are designed specifically for professional support workers:

• Every Moment Has Potential

' ... an online learning resource developed specifically for disability support workers. The resource provides an introduction to Person Centred Active Support - a way of working that enables everyone, no matter what their level of intellectual or physical disability, to make choices and participate in meaningful activities and social relationships.'

Produced as a collaboration between Greystanes Disability Services and the Living with Disability Research Centre at La Trobe University, funded by the Australian Government Department of Industry.

Service, Support and Success

The first two 2015 issues of Service, Support and Success, a valuable Canadian newsletter for direct support workers, are now freely available online:

The View from the Other Side of Care 

Dave Hingsburger, Service, Support and Success, Vol 4, issue 1, January 2015
... As someone who is now a care recipient, I’ve learned a lot about what it is to be on the other side of another’s Paid care, and as much as we say ‘we work for people with disabilities’... when receiving care, it never, ever feels that way ... There are those, however, who provide care in such a way that, while I may not feel like the employer, I don’t feel like the lesser, I don’t feel like a passive participant in the process.

I’m going to list a few of the things that those who help me, in a helpful way, leave me feeling simply helped and never lessened ...

Families and Staff: How to move from competing to complementary perspectives

Yona Lunsky, Service, Support and Success, Vol 4, issue 2, February 2015
... Sometimes when we have an interaction that is difficult, we put it on the person, especially when we feel like we are being criticized by them. But chances are, if the family is giving us a hard time, they are having a hard time ...

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'

New resources, publications

Durham author gets honest about parenting and Down syndrome
Corbie Hills, News-Observer (North Carolina), 3rd November 2014

Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ...

Read more here: http://www.newsobserver.com/2014/11/03/4290224/durham-author-gets-honest-about.html?sp=/99/106/#storylink=cpy

Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ... Her Dad's second book is an unflinching look at his own parenting experience. In the book, he’s not shy to admit his faults and failures. Over 278 pages, Paul documents the rocky path from the shocked new dad he was in 1987 – one who couldn’t see through his daughter’s Down syndrome diagnosis – to the parent he is in 2014, who simply sees a daughter, no qualifier needed ...

Not All History is Remembered Equally: Why You Must See the Film 'Menschen'

Kari Wagner-Peck, A Typical Son, 31st October 2014

This film is not (yet) on general release, but it is on the film festival circuit internationally - worth watching out for, if you are interested in the history of discrimination. Several video excerpts and lots of information are available on the film's website (links at the end of the post).

Royal Commission information and links
Children with Disability Australia provides links to information about all aspects of the work of the current Royal Commission into Institutional Responses to Child Sexual Abuse, on its website, here.

Members' library

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

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

Online Inclusion: disability hub (Australian)

Last week, Lifestart launched the Online Inclusion (Oi) disability hub, at a Sydney Opera House event. 

Launched by the Minister for Communication, the Hon. Malcolm Turnbull. Oi offers structured and informal online support for people living with disability, their families or carers.

It is a tool to guide people to information, resources and support, particularly for those who are may be newly diagnosed, have a newly acquired disability, isolated or concerned about where to get information.

Oi brings a number of specialist organisations, professionals and not for profit programs and supports together to ensure finding information about disability is easy, accurate. Content is available in many formats including visual, audio and written.

Join Oi all over social media, including at:

• Facebook
• YouTube 
• Pinterest 

Rethinking College: online documentary, resources

Rethinking College is a 25 minute film produced by Think College that explores the growing movement to include students with intellectual disabilities in higher education. It is available for viewing online.

Through the perspectives of parents, educators, advocates, policy leaders, and most importantly, students, this film illustrates how colleges and universities can provide a setting for all students to grow, learn and build toward better futures ...

The Think College website has many more resources related to post-secondary education for people with intellectual disabilities. It is a US site, but much of the information is universal.

'Ramp Up' will stop publication on 30th June

A message from the Ramp Up team
Stella Young and Karen Palenzuela, Ramp Up, 5th June 2014
After much speculation about the future of Ramp Up since the Federal Budget announcement, we have some news to share.
Over the last three and a half years, Ramp Up has published over 500 pieces of original content, facilitated discussion on a broad range of disability issues, developed a strong social media presence and, perhaps most importantly, published stories and perspectives that put forward a strong case for the establishment of the NDIS. We've also had the honour of publishing great work from many talented, emerging writers with disability.
As many of you are aware, in 2010 the ABC received funding to establish an online destination to discuss disability in Australia. The funding came from the Department of Families and Housing, Community Services and Indigenous Affairs, which is now the Department of Social Services. Our current contract with DSS finishes on 30 June this year and has not been renewed ...

Disability dissent silenced as ABC’s Ramp Up scrapped

Shakira Hussein, Crikey, 6th June 2013
Abolishing the ABC’s Ramp Up, a national platform for disabled voices, looks like an attempt to suppress dissent at a crucial moment for the sector, writes Shakira Hussein.

Registration (free) is required to read the whole article.

Petition to Mark Scott: Save Ramp Up

People With Disability Australia, Change, 23rd May 2014
Preserve the ABC Ramp Up website. The only consistent voice for people with disability in the mainstream media ...

Would you be interested in test-driving a new website?

Northcott is seeking families of young children who have a disability to participate in the testing phase of a new website focussed on inclusion.

... The focus of All In! is to provide community members who interact with young children who have a disability, with a range of tips and ideas on how to include that child into their setting or activity.

... Testing of the site will take place strictly between Monday 24 February 2014 – Tuesday 25 February 2014. The site will not be in operation before or after these dates.

You can participate from home - find out what you will need to do, and how to provide the feedback required, here.

Library Thursday: 21st November 2013

Reading About Me! Teaching reading to visual learners
2013 has been a big year for discussion about and resources for teaching people with Down syndrome to read.  This is a new program from a long-respected teacher and writer in the field:

Reading About Me! was developed by the Down Syndrome Association of Southern Oregon Patricia Oelwein, author of Teaching Reading to Children with Down Syndrome and co-author of Literacy Skill Development for Students with Special Learning Needs: A Strength-Based Approach, in order to provide individuals who have not typically been successful readers in school a chance to show that many can successfully learn to read.





A new edition to look out for
The very popular Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, by Patricia Winders is being re-edited, for an expected December release by Woodbine House.

Note to Australian readers: Although Woodbine House does not accept online orders from Australia, they are releasing many of their titles as e-books, as well as in print, and print editions of their titles are readily available from other booksellers.

New(ish) website: analysis of people with disability and the Australian media

Are you ever bothered by how people with Down syndrome and/or other disabilities are portrayed in the local media?

Disability and Media Matters is a blog and Facebook page, started in April this year ... 'exploring the representation of people with disability in the Australian news media, and perception of people with disability to that representation.'

The site belongs to Shawn Burns, who describes himself as a  '... father, husband, son, journalism lecturer at the University of Wollongong, PhD candidate, former print and television journalist/news director  ...'

Disability and Media Matters discusses and highlights the representation of people with disability in the Australian news media, and, importantly, showcases the reaction and perception of people with disability to that representation. 

It highlights stories that feature people with disability, and the issues that impact their lives, and their families.

New website: Intellectual Disability and Ageing

The content of the new website Intellectual Disability and Ageing is produced by the Australian Catholic University in conjunction with La Trobe University Australia and The University of Wisconsin-Madison.

The Victorian Department of Human Services (DHS) saw merit in the staff health manual and the training manual developed as part of a 2010 - 2012 research project having a broader audience. ... (DHS) agreed to fund the development of a website on intellectual disability and ageing, that would include the materials used in the research project, together with additional information, exercises and links to further resources for improving support for ageing people with an intellectual disability. The peak body National Disability Services (NDS) Victoria agreed to host the website on the NDS website. (Intellectual Disability & Ageing - home page)

While the website refers to some services and processes that are specific to Victorian health and disability services, there is much that will be useful to residential staff working in other States, making it a useful addition to the growing body of knowledge and resources available in this field. 

Free online training in intellectual disability/mental health: new website launched

We have been looking forward to launch of these pages by 3DN (Department of  Developmental Disability Neuropsychiatry, University of NSW) - and we look forward to the development of additional pages designed to meet the needs of people with intellectual disabilities, and their families and carers:

Would you like to gain knowledge, skills and confidence to improve the mental health care of people with an intellectual disability?

People with an intellectual disability have a higher rate of mental disorders than the general population, but have less access to mental health care.

The University of New South Wales is providing free online training in intellectual disability mental health, in partnership with Ageing Disability and Home Care, NSW Health and the Health Education and Training Institute.

The content of the Intellectual disability mental health e-learning website was developed by a team of medical, mental and allied health professionals. The team has clinical, administrative and research experience and represents the health, welfare and disability sectors. People with an intellectual disability also had a role in developing content for the site, as you will see when you progress through the modules.

You can work through the training at your own pace. 

Topics include:

• Introduction to Intellectual Disability
• Living with Intellectual Disability
• Changing Perspectives of Intellectual Disability
• Introduction to Mental Disorders in Intellectual Disability
• Communication
• Assessment of Mental Disorders in Intellectual Disability
• Management of Mental Disorders in Intellectual Disability

• For more information, email idhealtheducation@unsw.edu.au, or go directly to the Intellectual disability mental health e-learning website.
• ADHC media release about the launch

Library Thursday, 20th June 2013

Cerebra is a UK based organisation. They currently have a number of articles likely to be of interest to families of people with Down syndrome. Members can follow this link to find a list of all articles.

These articles may be of interest to families:

Potential stress factors faced by adolescents with Down’s syndrome
Carole Butler, Swansea Metropolitan University
There are many challenges which young people face during adolescence, such as developmental tasks which include identity formation, changes in school from primary to secondary, and physical changes which happen during puberty. Typical stressors that young people face include self-esteem issues, appearance, dating and sexual relationships, personal health, school grades, employment, work and educational plans. To continue reading follow this link.

Self-injurious behaviour in children with intellectual disability

Prof. Chris Oliver, Dr Louise Davies and Dr Caroline Richards
Offers clear and succinct explanations of terms and possible treatment strategies. “Written to help parents and carers of children with an intellectual disability to understand what self-injury is, what the causes are and which interventions are effective. The briefing focuses on children with profound to moderate intellectual disability ... To continue reading follow this link

Writing Slope Innovation

Six year old Lucy improves her reading and writing by using a writing slope…