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.

Why Andrew rides in the Scrapheap Adventure

Andrew Hunter has an excellent motivation for becoming a Scrapheap Adventure Rider - his video tells you who it is (and you can see his great shed):



Direct link to this video

2015 Scrapheap Adventure Ride - Urana NSW

Awareness video from Karachi

Pakistan would be far from the easiest place in the world to raise and support a child with Down syndrome. To celebrate World Down Syndrome Day 2015, the Karachi Down Syndrome Program has launched its video aimed at raising awareness about Down syndrome and shattering negative stereotypes.

• Direct link to this video on You Tube

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 ...

'I can do it!': ways to grow your child's indpendence

The (US) National Down Syndrome Society, based in New York, hosts a series of webinars on topics of interest to the families of people with Down syndrome and professionals supporting them.  The next event is scheduled for:

Tuesday, 29th April 2014, at 1.00 pm (note: this is US Eastern time)

'I can do it!': ways to grow your child's independence

Presenter: Katie Bergeron Peglow, paediatric physiotherapist.

Video and slides from previous webinars are archived online.  Recent webinars have been on:

Your transition questions answered (February 2014)
Empowering individuals with special needs through music (February 2014)
Share the love: a sibling's journey, Parts ! and II (December 2013)

Visit the NDSS website for further information on registration and to access the archives.

Living My Way: new video from the Aboriginal Disability Network NSW

Aboriginal Disability Network NSW developed the video Living My Way to enhance understanding about disability in Aboriginal communities. Aboriginal people with disability and their families from around New South Wales allowed us to capture their stories to share and create awareness for others living with disability ... view it online here.

Living My Way
Jake Briggs, Ramp Up, 11th April 2014
... Many Aboriginal and Torres Strait Islander people do not recognise disability or identify as disabled. So, it is important that the implementation of the NDIS in Aboriginal and Torres Strait Islander communities is led by Aboriginal people.

This is a new conversation in many Aboriginal communities so we need to plan for the long-term to ensure the opportunities are realised and that all people with disability are empowered to participate in a truly inclusive society ...

Jake Briggs is Chairman of the Aboriginal Disability Network NSW and works in the construction industry. He is one of the people featured in the video.

In celebration of World Down Syndrome Day (6) ... 'This Kind of Love'

International Down Syndrome Coalition:

• Direct You Tube link

In celebration of World Down Syndrome Day (5) ... Dear future Mom

This short Italian video has met with a very positive response across the internet over the last few days:

• Direct You Tube link

IDPWD 21st Anniversary: Chris Bunton's video

International Day of People with Disability Australia called for people turning 21 this year to help them to celebrate IDPWD's 21st anniversary by recording a video - Chris Bunton answered the call with style, and a great message. Congratulations Chris, and happy 21st!

Aging and Down syndrome: a health and wellbeing video and guidebook

On 19th March, the (US) National Down Syndrome Society, based in New York presented its monthly webinar - the topic was Aging and Down syndrome, presented by Dr Julie Moran, a geriatrician specializing in older adults with intellectual and developmental disabilities (I/DD). Dr. Moran is on faculty at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, MA.

The webinar can be viewed online here (1 h 2m 28s).  Links are also provided to the slides from the presentation, and to view the new NDSS publication Aging and Down syndrome: a health and wellbeing guidebook, by Julie Moran DO.

Health information about adults with Down syndrome: online video

Spend 90 minutes with Dr Brian Chicoine Director of the Adult Down Syndrome Center  (in Chicago) via the online edition of his presentation to the (US) National Down Syndrome Congress  annual convention in 2012, now freely available here.

Dr Chicoine introduces the aim of their work as 'keeping people with Down syndrome healthy, so they can really rock that extra chromosome'.

Well worth the time.

Dr Chicoine identifies this as the single most important lesson he teaches medical students and practitioners about their patients with Down syndrome.

Library Thursday: new DVD presents accommodation options for people with disability living in NSW

NSW Ageing, Disability and Home Care (ADHC) has released a set of communication resources to highlight the accommodation support options available to people with disability in NSW.

Page 5 of the new booklet

The Accommodation Support Options DVD is a collection of stories about people with disability who are accessing a range of accommodation funded by ADHC, and operated by both ADHC and the non-government sector.

The stories highlight the various support options that are available and how different individuals, with a range of ages, disability support needs and personal situations are currently using them.

Along with the DVD, an updated Accommodation Support Options booklet has been published, which reflects the contemporary models in an easy to read, and visually engaging format. It is available to read and/or download from here.

Fact sheets that explore some of the more specific elements of each model, including eligibility and suitability are also available.

• Find out more about Accommodation Support Options.
• Drop-in Support Fact Sheet, August 2012

Source: ADHC News page, 25th October 2012

• Copies of the DVD will be available for loan to Down Syndrome NSW members from our library

CALD community members invited to participate in making a DVD

Bankstown Area Multicultural Network is making a DVD to teach people from multicultural communities about HACC services. They are seeking people from the community who are interested in being part of the DVD (telling their story or even acting a role).

They are looking for people with disabilities, older frail people and carers from the following communities: Arabic, Chinese, Korean, Turkish, Vietnamese.

If you know of anyone who might be interested contact Rainier or Joyce by emailing map@bamn.org.au or phone 9796 3717 or 0488 231 001

Source: NSW CID e-Bulletin September 2012

New resources: online video, books, learning materials

Navigating a Prenatal Diagnosis of Down Syndrome - the 4th September Allen Crocker Speaker Series talk for families is now available as an online video.  The speakers are Linda Zaccagnini, RN, MSN, NNP of the Advanced Fetal Care Center at Boston Children's Hospital and Lori Dobson, MS, CGC of Brigham and Women's Hospital. 

Presentation topics for the rest of 2012 are listed here, and include:

• Anti-bullying strategies
• Celiac disease and Down syndrome
• Your new baby is here: what you should know
• infantile spasms and seizures in children with Down syndrome

 Links to video of previous events in this excellent series are  available online here.

Discovery at paradise Island, an e-book by Sharon Boyce, has been recommended as a disability awareness resource:
The fun and discovery starts as soon as Alexandria and Sarah arrive at Paradise Island. What would usually be a relaxing holiday on a tropical island turns into an exciting adventure. Sarah thinks because Alexandria's mum is in a wheelchair their holiday will be quite boring. How wrong is she?





Special Numbers (App)

Special Numbers contains a set of activities to help develop early number skills, including counting, matching, ordering, comparing and selecting. It was designed in collaboration with parents, children, teachers and educational psychologists, and with reference to research into how children acquire mathematics skills. It ... includes some pictures from the See and Learn Language and Reading resources published by Down Syndrome Education International. These will be familiar to children who have used the paper-based See and Learn activities, or our Special Words app (which also uses these pictures).

My Great Big Adventure: 'Disability' now on iView

Saturday's episode of My Great Big Adventure on disability (episode 8) is now available online on ABC's iView, until the end of the year:

• Click here to view it on computer
• Use the iView app to view via iPad (listed under ABC 3 programs)

Duration: 20 mins.

Weekend reading and viewing 21st - 22nd July

Living a good life isn't just about a job, Craig Wallace, Ramp Up, 16th July 2012

Asking others to be there ~ creating a place for support and friendship to grow, Margaret Rogers,   Communique, July 2012, pp 21-22, published by Family Advocacy (originally published in Thinking About,  Belonging Matters, Victoria, 2011)


This girl has special needs, and one day dreams of being a mum.  Does anyone have the right to stop her having a baby? Marie Claire magazine June 2012, and Women with Disabilities Australia.


Long Shots, Open Books Open Doors (blog), 16th July 2012. A 21 year old woman with Down syndrome who emerged from school unable to read, begins to learn.

The Doctors' Waiting Room, or, The Value of Our Daughter's Life, Down Side Up blog (UK), 18th July 2012


Tom, Conny Wenk News blog 19th July 2012. A beautiful family photo shoot with Tom (3) and his parents. Conny Wenk often features people with Down syndrome in her Lifestyle Photography.  

Partners in Policymaking: Altogether Better, In Control UK . Overview to PIP suite of leadership training leadership training courses for disabled adults, parents and  carers of disabled children, professionals and other service providers working in education, health and leisure.

Let the journey begin: video online

At Parliament House in Sydney on July 3, 2012 the Minister Andrew Constance formally launched the documentary Let the Journey Begin. The film explores the lives of three individuals and their families as they progress through the Independent Living Support Initiative (ILSI) program over the course of nine months. 

ILSI is an innovative program designed and developed by Down Syndrome NSW, in conjunction with service providers and NSW Ageing Disability and Home Care, to help people living with a disability live a more independent life. Throughout the documentary we watch Sophie, Jane and Leigh gain valuable living skills, set goals, dream big and gain more confidence.


The documentary is designed to show facilitators and potential participants and their families what to expect if they choose to enter into a transitional program such as the ILSI.

Watch Let the Journey Begin for free online here.

Weekend reading and viewing 7th-8th July

Review of 'When David was surprised, John Valeri, Hartford Books Examiner


People with Down syndrome can be jerks too, Kate Conway remembering her aunt in an earthy post (there is a little strong language), reminds us that people with Down syndrome are just ... people!


Why using the word 'retard' is retarding progress, Tim O'Donoghue - a 19 year old college student compares his high school experience with his younger brother's.

In disability services, 'profit' is still a dirty word, Graham Bennett - an opinion piece on Ramp Up.

The actors in this Judith Thompson play are rare, article about a play staged in the current Toronto Fringe Festival, Globe and Mail.

Four short online videos, making up a series on Down syndrome broadcast last week on Boston TV program Chronicle, recommended by the Boston Children's Hospital Down Syndrome Program (who participated in the program):

Part I: One family's decision 

Part 2: Easier Down syndrome test

Part 3: Determination trumps Down syndrome  

Part 4: Down syndrome equal treatment 

Weekend reading and viewing 23 - 24 June

A father's quest to make daughter's dreams come true - some wise people, including one of favourites, Dave Hingsburger, advises that we should not squash the dreams of people with intellectual disabilities in the name of 'reality', and have given some great advice on the purpose of dreams and how we can seek to incorporate them in real lives, just as this Dad is doing.

The Value of Work - people with intellectual disability speak for themselves about the value of work in this short campaign video from New Zealand.


Disabled Woman Dies While Awaiting Second Chance At Kidney Transplant - news report from the US


Killian and Laim: better together - a classic series of photos from a recent Special Olypmics event in Ireland


Do teens with Down syndrome give compliments? A nice anecdote, and here's the main link to the blog, because you might want to read more ...

Weekend reading and viewing: 16 - 17 June

(UK) Man with Down’s Syndrome who could barely leave house travels to Australia - short news piece about Andrew Parker, a man who was well supported to manage anxiety about travel.

Hope vs reality - a well thought out question and series of responses about balancing expectations for a young child with Down syndrome, published on an online forum.

How does the iPad impact on student learning? The Hills School iPad Project -  a Sydney school is trialling iPad technology with its students with special needs (a post on Spectronics Blog)

Becky from Glee: mum says I can't sing - a short post about actor Lauren Potter, and a link to a podcast interview with Lauren and her Mum, on Ouch!, the BBC's blog by and about people with disabilities.

Tim's Place restaurant takes unique approach thanks to special owner - a short CBS News video about Tim Harris, a young man with Down syndrome, who owns a restaurant in Albuquerque, New Mexico, and his Dad - this weekend is Fathers' Day in North America.