Weekend reading and viewing: 15th - 16th June 2013

My Perspectives 2013
Down's Syndrome Association (London), 14th June 2013
Award winners in My Perspectives, a UK photographic competition for photographers who have Down syndrome.

What if ...

Meg Christo, My Imperfect EXTRA Ordinary Life,10th June 2013

What if parents of Carsten’s typical peers requested or even demanded that Carsten be in their child’s class? I have heard parents say things to the opposite effect while attending activities for my oldest son, Gabe, which infuriated me. I would say things back like, “I don’t feel that way. I feel like Child X brings a different set of skills to the classroom, and I am glad she is here.” I haven’t, however, requested that Child X be put in Gabe’s class the next year. Why haven’t I?

“A Doorway to a New Life”: A Conversation with George Estreich About Down Syndrome, Writing, and the Stories that Make a Family
Amy Julia Becker, Thin Places, 12th June, 2013 

An interview with George Estreich’s about writing The Shape of the Eye, making meaning in life, and whether Down syndrome is “bad” or “hard.”

Potential, Disability, and Human Worth

Jsun, Kimchi Latkes, 7th June 2013

So what is potential? Is it a bottle that we fill, predestined to be a certain size at birth? Is it a balloon that stretches and deflates according to our circumstances? What, specifically, are we discussing here? Potential for what? Happiness? Wealth? Influence? Raw ability? What kind of ability?

Love, no matter what, 

Andrew Solomon, Ted Talks, filmed April 2013, posted June 2013 

And I said, "Do you regret it? Do you wish your child didn't have Down syndrome? Do you wish you'd never heard of it?" And interestingly his father said, "Well, for David, our son, I regret it, because for David, it's a difficult way to be in the world, and I'd like to give David an easier life. But I think if we lost everyone with Down syndrome, it would be a catastrophic loss." A discursive talk on identity that touches on people with Down syndrome and their families.

The Simple Humanness of Jude

Green Tea Ginger, 10th June, 2013
I am ... a witness to the everyday humanness of my own child born with Down syndrome. I have often written about how I was devastated when I first learned that Jude had Down syndrome so I won't rehash those feelings. But I do want to emphasize that all those fears involved an inability to see my child as fully human, as worthy, as quite simply part of the humanity in which we all live. Love does not always involve respect, I think, so while I loved her greatly, I struggled, initially, with not seeing her as complete or whole.

A Word Can Be a Matter of Life and Death
Matthew Holder, Huffington Post, 5th March 2013 

... values can be fragile things. Sometimes when we are not paying attention they can be undermined. Sometimes they can be unintentionally compromised by something as simple as a single word.

Family Business: Manchild Coming of Age
Richard Conniff, Strange Behaviors, 10th June, 2013
My Dad died Saturday, age 92. He was a writer and a passionate teacher of the craft and love of writing. I’ll post an obituary later, but this is an article he wrote for the New York Times magazine about my brother Mark, who has Down syndrome, and about raising him at home when institutionalization was the more standard practice.

Dear mom with a prenatal Down syndrome diagnosis 

Lauren, Sipping Lemonade, 12th June 2013

I know how you feel. Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant. But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Free online magazine: Link

Link Disability Magazine's online June 2013 is now available to download free of charge.

The NSW Smoke Alarm Subsidy Scheme (SASS)

Since hearing impairment is not uncommon in people with Down syndrome, this scheme will be of interest to some NSW readers:

The NSW Smoke Alarm Subsidy Scheme is a joint initiative between the Deaf Society of NSW and Fire and Rescue NSW, made possible with funding from the NSW Department of Family and Community Services; Ageing, Disability and Home Care.

A standard smoke alarm costs around $50, but a smoke alarm with a strobe light, pillow shaker and beeper can cost around $500, which is cost prohibitive for many people. This is why the NSW government established SASS. The scheme will cover the costs of the alarm; however, you must pay a $50 fee with your application.

• Further information about the scheme, eligibility and how to apply is available here, on the Deaf Society of NSW's website

Commitment to real choice and control delayed by the NSW Government: Family Advocacy

Family Advocacy's position statement on news this week that the NSW Government has withdrawn one of the basic promises of Stronger Together 2:

'Stronger Together – The second phase provided a vital commitment. It said:

“Individualised funding arrangements will become available from 2011/12, and by the end of 2013/14, anyone receiving disability services will have the option of using an individualised and portable funding arrangement.” (page 21) 

This provided a target for the reform process. Hundreds if not thousands of people with disability and their families built trust with the NSW government and retained patience with the constraints in their lives waiting for 1 July 2014.

Minister Constance has now withdrawn the Government’s commitment to the 1 July 2014 start date indicating that the time line for the full implementation of the NDIS in NSW will take all the focus of Ageing Disability and Home Care. He reminds people that the NDIS roll out begins in the Hunter this July and will expand to other parts of NSW from July 2016.

This means depending on where you live, you may not get the opportunity to have control over your supports until 2018.'

Read the full statement and Family Advocacy's suggestions for responding to this action, here.

Research news update #4 for 2013

Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities
An Australian Research Council Linkage Project in partnership with Endeavour Foundation:

You are invited to participate in a survey aimed at increasing our understanding of what parents hope the lives of their young adult with an intellectual disability will be. 

• Click here to take the survey

10 year follow-up on inclusion
Include ... is about helping to build inclusion through staff training, service design support, direct consultancy and service evaluation as well as direct assistance to families and individuals.In 1992 the Disability Discrimination Act was passed which meant that all children with disabilities could attend their local school and classrooms with the necessary supports and changes made to ensure that they could be included. About 10 years ago we surveyed families and schools across Australia asking them to rate how well their STATE was doing on physical, social and curricular inclusion of children with disabilities. 

• This survey is a repeat of that research to see how we have progressed over the last 10 years.

Targeting an aspect of Down syndrome
Science Codex on 5th June, 2013
University of Michigan researchers have determined how a gene that is known to be defective in Down syndrome is regulated and how its dysregulation may lead to neurological defects, providing insights into potential therapeutic approaches to an aspect of the syndrome.

Normally, nerve cells called neurons undergo an intense period of extending and branching of neuronal protrusions around the time of birth. During this period, the neurons produce the proteins of the gene called Down syndrome cell-adhesion molecule, or Dscam, at high levels. After this phase, the growth and the levels of protein taper off.

However, in the brains of patients with Down syndrome, epilepsy and several other neurological disorders, the amount of Dscam remains high. The impact of the elevated Dscam amount on how neurons develop is unknown.

Down syndrome neurons grown from stem cells show signature problems

David Tenenbaum, University of Wisconsin-Madison News, 27th May, 2013
Anita Bhattacharyya, a neuroscientist at the Waisman Center at UW-Madison, reports on brain cells that were grown from skin cells of individuals with Down syndrome. "Even though Down syndrome is very common, it's surprising how little we know about what goes wrong in the brain ... These new cells provide a way to look at early brain development."

Cholesterol Increases Risk of Alzheimer's and Heart Disease 

Science Daily 15th April 2013
Researchers at the Linda Crnic Institute for Down Syndrome and the University of Colorado School of Medicine have found that a single mechanism may underlie the damaging effect of cholesterol on the brain and on blood vessels. Original article available free of charge on PLOS ONE

Small UK study on speech
A small training study – supported by Down Syndrome Education International – suggests that targeted training can improve blending skills.

The significance of aspects of screening for obstructive sleep apnoea in children with Down syndrome
Sleep problems among children with Down syndrome are commonly reported, but under-researched. This study – supported by Down Syndrome Education International – investigated measures of sleep and daytime behavior for children with Down syndrome.

Sleep Apnea and Its Association to Behavior, Learning Problems, and ADHD
In this study of 263 youth, sleep study and neurobehavioral data was collected twice, five years apart. Twenty-one of the children had persistent sleep apnea throughout the entire study. These children were six times more likely to have behavioral problems when compared to children with no sleep issues. Parent-reported behavioral problems were significantly higher for the children with sleep apnea; these observed problems included hyperactivity, attention deficits, aggressiveness, poorer communication, lower social competency, diminished self-care, and compromised adaptive skills.

Correlations of Autistic Behaviors Shown in Children with Down Syndrome
In a continuation of his research looking at children with a co-diagnosis of both autism spectrum disorder (ASD) and other well-known genetic disorders, Dr. Walter E. Kaufmann and colleagues recently published a study that examined the difference in brain structure between children with either Down syndrome alone and children with both Down syndrome and ASD. Dr. Kaufmann and his research team at the Center for Genetic Disorders of Cognition and Behavior (GCB Center) at the Kennedy Krieger Institute believe this will provide more clues to the cause of autism, and lead to better diagnosis and care of children with both Down syndrome and ASD.

Down Syndrome Research and Treatment's webinars  

... an ongoing series of webinars — web-based audio and slide presentations — with noted cognition researchers. (DSRTF) believes these sessions offer unprecedented access to the scientists who are actively advancing the field.

To listen to past presentations, click on the link. You'll be taken to a new window, where you can play back or download the session

Australian Law Reform Inquiry into how to reduce legal barriers to people with disabilities announced

On 7 June 2013, the Attorney-General announced a public consultation on the draft terms of reference for an Australian Law Reform Commission (ALRC) inquiry into equal recognition before the law and legal capacity for people with disability. 

The deadline for submissions is by close of business on 28 June 2013.

This inquiry will consider: Commonwealth laws and legal frameworks that deny or diminish the rights of people with disability to make their own decisions, and act on their own behalf, and what, if any, changes could be made.  Graeme Innes, Australian Disability Discrimination Commissioner

• Further information on the inquiry and how to make a submission is on the Attorney-General's website, here. 

Fundraising event for people with Down syndrome in the Hunter region

Weekend reading and viewing 8th - 9th June 2013

The Cynic v The Anxious Wreck: a war storyLeticia, Embracing Wade, 16th May 2013
From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not. Cutest blog banner photo on the web!

When the perfect baby you adore suddenly becomes a stranger: One mother describes how she fell into a black hole when her son was diagnosed with Down's Syndrome

Faith Bleasedale, Daily Mail online (UK), 31st May 2013
You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.

Is Down syndrome already starting to disappear?
Mark Leach, Down Syndrome Prenatal Testing, 30th May 2013
Since the dawn of prenatal testing and selective abortion, critics and commentators have wondered whether Down syndrome will disappear from society. Experience this year suggests that it may now be happening.

Leaving Loyalist (College) - an online graduation address
Dave Hingsburger, Rolling Around in My Head, 6th June 2013
I am impressed, first of all, that you have chosen the career you have chosen (disability support)- you will be told, over and over again, by those who don't know any better, that there must be something special about you, that you must be so kind, and so patient, and so special because you do what you do. Be wary of these compliments because they aren't complements at all - they are excuses for exclusion ...

The Global Plight of Disabled Children
The Editorial Board, New York Times Sunday Review, 1st June 2013
A United Nations report, The State of the World’s Children, underscores the moral bankruptcy of Senate Republicans who blocked ratification of a treaty to help disabled people around the world.

Talk - Down Syndrome: series of posts on childhood apraxia of speech
Jennifer Bekins, Talk - Down Syndrome, starting 3rd June 2013
The first two posts in this series were posted on 3rd and 5th June.

Draft Proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector

Notification from Department of Families, Housing, Community Services and Indigenous Affairs, Disability and Carers' group:

On 3 May 2013, Standing Council on Community and Disability Services Ministers considered a draft proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector (the proposed National Framework). The proposed National Framework was developed jointly by the Commonwealth, State and Territory Governments and based on consultation to date from non‑government stakeholders.

An initial targeted consultation on the proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector was undertaken in April 2013 and that process confirmed the need for a wider period of consultation to be facilitated.

The proposed National Framework outlines key principles to guide work in this area and core strategies to be implemented to reduce the use of restrictive practices in the disability service sector.

This consultation process is open to all, it seeks comments from people with disability, their families and carers, disability and carer organisations, advocacy groups, service providers, human rights organisations, medical and allied health professionals, and anyone else concerned with this issue.

It is intended that the proposed National Framework will guide government activity and future policy initiatives in this important area into the future.

The deadline for feedback is Friday 28 June 2013. Feedback is sought in the attached template, or if another format is used, please use headings to identify the sections being referred to. Feedback and enquiries should be directed to disabilitypolicy@fahcsia.gov.au or via mail to:

Disability Policy Section
Disability and Carers Group (National Office TOP DE2)
Department of Families, Housing, Community Services and Indigenous Affairs
PO Box 7576
Canberra Business Centre
Canberra ACT 2610

• The linked documents and other formats are available from the FaHCSIA website, here.

News and commentary on how the NDIS will work at the front lines (2)

Geelong picked as home for headquarters of national disability insurance scheme DisabilityCare
ABC News online, 3rd June 2013
Less than a fortnight after Ford announced it was closing its Geelong manufacturing plant, the regional Victorian city has been chosen as the headquarters of the new DisabilityCare agency.

Committee to oversee NDIS rollout
news.com, 4th June 2013
The House of Representatives on Tuesday agreed to set up a joint select committee to inquire into and report on the implementation of Labor's DisabilityCare Australia.

Rural people want flexibility in disability scheme
Amy McCosker, ABC Rural, 24th May 2013
People with a disability in regional Australia and their carers say they hope the National Disability Insurance Scheme brings more flexibility to support facilities in their area.

A landmark Reform to Improve Lives
Jenny Macklin, Chifley Research Centre, 27th May 2013
As the Parliament prepared to pass laws allowing for an increase to the Medicare Levy to help fund DisabilityCare Australia, the Prime Minister reminded the nation what a significant transformation was under way. The Prime Minister’s emotion as she spoke in the House was easily understood.

Disability Care for Beginners - Revolutions with Jon Faine
774 ABC local radio Melbourne, 29th May 2013
All parties agree that Australia needs national disability care. But what will it do? How will it work? Who will get what? And who won't? Jon Faine and guests discuss The National Disability Insurance Scheme and its implications. Audio download.

DisabilityCare name 'patronising': Coalition
Dan Harrison, The Age, 3rd June, 2013
... Opposition disabilities spokesman Mitch Fifield suggested that the name should be reconsidered before the advertising started. Senator Fifield said that the name was "close to being hated" by people with disabilities.

Roll out of DisabilityCare Australia

DisabilityCare Australia website
DisabilityCare Australia is the national disability insurance scheme. We are introducing the scheme in stages from July 2013. This is because it’s a big change, and we want to get it right and make it sustainable.

From 1 July 2013, DisabilityCare Australia begins in Tasmania for youth aged 15-24, in South Australia for children aged 0-14, and in the Barwon area of Victoria and the Hunter area in NSW for people up to age 65. From 1 July 2014, DisabilityCare Australia will commence in the ACT, and the Barkly region of Northern Territory. Roll out of the full scheme will commence progressively from July 2016.

Service, Support and Success: Direct Support Worker Newsletter

Vita Community Living Services in Toronto, Canada publishes the Service, Support and Success: the Direct Support Worker Newsletter, a monthly publication aimed at providing practical information / suggestions for direct support workers who work with people with intellectual disabilities (they have a lot of family subscribers as well). It is available online, or by email.

Readers of this blog and other Down Syndrome NSW publications will be familiar with the quality of the writing, thinking and advocacy of  Dave Hingsburger, who edits Service, Support and Success, with Angie Nethercott.

The latest issue is Volume 2: Issue 6:

Well worth the (free) subscription if you work with or are interested in supporting people with intellectual disability.

Fundraiser for DS NSW

CDS anti-bullying project

Numicon workshops: July, Rooty Hill

Numicon - A multi-sensory approach to arithmetic teaching that uses patterns that are structured to encourage the understanding of number and number relationships. (Down Syndrome Education International)

Oxford University Press Australia is advertising professional development training in Numicon, a method of teaching maths, in Sydney on 29th July. Two sessions are scheduled at the same venue:

Introduction to the Numicon Approach: Transform the way students understand mathematics 

This session is a full-day session for educators and leaders of students from K-3 and those students experiencing difficulties with mathematics.

Introduction to the Numicon Approach: Transform the way children see numberThis 2-hour will focus on the Introduction of the play-based Numicon approach in the pre-school and childcare setting.

Monday, 29 July 2013 

Rooty Hill, NSW 2776

Registration closes Monday, 22 July

• Full details and registration links are available from the OUP Australia and New Zealand website
  
• Information about Numicon from Oxford University Press Australia and New Zealand

Information about the effectiveness using Numicon to teach maths to children with Down syndrome is available from Down Syndrome Education International:

Tony Wing and Romey Tacon, Teaching number skills and concepts with Numicon materials. Down Syndrome Research and Practice. 2007;12(1);22-26.

Joanna Nye, Sue Buckley and Gillian Bird, Evaluating the Numicon system as a tool for teaching number skills to children with Down syndrome, Down Syndrome News and Update, 2005; 5(1), 2-13

For further information from the Down Syndrome Education International website, just enter 'Numicon' into the search box.

Additional federal funding announced for students with disability in special schools

Media release from Prime Minister, Minister for School Education, Parliamentary Secretary for School Education
Monday 3rd June 2013

$76 million will be available to help more than 350 government and non-government special schools across the country over the next six years as part of the National Plan for School Improvement.

This funding will be over and above the additional resourcing that many special schools will already be eligible to receive as part of the new needs-based school funding arrangements being progressed by the Gillard Government.

The Review of Funding for Schooling recognised the high resourcing demands in all special schools and this extra investment will assist the more than 25,000 children with multiple and complex disability in the special school environment.

This extra help will ensure that students with disability attending special schools, their teachers and parents will receive the support they need to address these complex needs.

.... read the full media release here, 

Apraxia series on Talk-Down Syndrome

Speech and language pathologist Jennifer Bekins's excellent blog Talk-Down Syndrome focuses specifically on speech, language and communication in people with Down syndrome. Today she has published the first in a series of posts on apraxia of speech and children with Down syndrome:

... (a) series to explain what apraxia is (and isn’t) my hope is two-fold:

• My readers will understand apraxia and how it presents in children with Down syndrome
• Any negative emotions related to the term are relived and replaced with new perspective

... read on at Talk-Down Syndrome

Supported Living Fund Round 3 - applications opening 24th June 2013

Down Syndrome NSW will be holding member workshops on the Supported Living Fund in the coming months prior to the closing date for applications. The following information has just been released by NSW Family and Community Services (Ageing, Disability and Home Care):

The Supported Living Fund - Round 3

Round 3 (final round) of the Supported Living Fund (SLF) will be open for applications between Monday 24 June and Friday 30 August 2013.

Please read the important information below. This will help you notify and support individuals, families, carers, and staff in your organisation and networks to understand and work through the SLF application process.

100 SLF packages in 2013/14
100 packages will be allocated for Round 3 of the SLF. All applicants will be notified about the outcome by October 2013.

Timelines for SLF Round 3 intake process

• Click here for a timeline diagram.

Application process
As with all previous rounds, the SLF Proposal (My Proposal) is the only official application form for Round 3. Regional SLF Assessment Panels will use the information contained in Proposal Forms to assess and prioritise all SLF applicants. No other correspondence or supporting documentation will be taken into account and should not be submitted.

ADHC will be accepting applications from new applicants and people who were unsuccessful in their application for the Supported Living Fund in Round 1 and 2.

Electronic and printed versions of the My Proposal form can be accessed from the ADHC website here.

Applicants are encouraged to read all the SLF information which is available on the ADHC website at the link above. This will help them decide if the SLF is right for them and if they are interested in applying for SLF funding.

Should applicants have questions about completing the Proposal Form, they can contact Carers NSW on 1800 242 636 during the application period.

Closing date – Friday 30 August 2013

Round 3 Proposals will be accepted until:
5pm Friday 30 August 2013 for printed forms (postal submission), and
midnight 30 August 2013 for electronic forms (email submission).
Please see Proposal Form for detailed instructions. Applications will NOT be accepted by fax.

Carers NSW SLF information sessions – July/August 2013
The roll out of Supported Living Fund packages will again be complemented by information sessions for people with disability, their families and carers, as well as interested service providers, between July and August 2013. 

Carers NSW will deliver the information sessions and a flyer will be distributed via the service provider portal and will also be available on the ADHC website.

While these workshops are not compulsory, we encourage people with disability, their families and carers to attend where possible to learn more about the fund and how to apply.

SLF Rounds 1 and 2 unsuccessful applicants
All previous unsuccessful applicants will have the option to reapply by completing and submitting a Round 3 My Proposal form.

Previous applications will not be considered.

SLF service provider list
A list of approved SLF intermediary service providers (fund holders) is available on the ADHC website link above.

SLF Guidelines and fact sheets
SLF Guidelines and key policy documents, including fact sheets with specific examples of SLF policy areas are updated and added to regularly.

These will benefit new applicants, current SLF recipients and support workers, and are currently available on the ADHC website link above.

* * * * * * * * * * * * 

Reminder: Family Advocacy has a webinar on the concept of Supported Living scheduled for Friday 14th June 2013 - details here.

Visit the Family Advocacy website for further resources on supported living.

'Independence: Theirs and Ours': presentations and links

Presentations and links from the recent  Independence: Theirs and Ours  event hosted by Down Syndrome NSW:

Speakers

• Patricia Mckenzie

• Elizabeth Corbould

• Evelyn Scott

Links

• The Independent Living Skills Initiative program

• The Supported Living Fund, Round 3 (2013)

• NSW Ageing Disability and Home Care - Regional Areas and Contacts

• ADHC Support Planners

• Telstra GPS Tracking

• Wall mounted Key Safe

• Apple iPad

The presentations were filmed, and will be available for members to view online shortly. 

A further Independence: Theirs and Ours event is scheduled for the Central Coast/ Hunter region - date and venue to be confirmed.

• For any further information please contact Miriam Parker at Down Syndrome NSW, via miriam@dsansw.org.au or on 02 9841 4407

Weekend reading and viewing: 1st - 2nd June 2013

We can do it! 
Tyler Faith Feder, Roaring Softly, March 2013
Happy International Women’s Day, everyone!  A fabulous image of a diverse and inclusive collection of women.

Can you assist us and each other?
Brian Chicoine, Adult Down Syndrome Clinic, 30th May 2013
... I would like to explore is having you help update or write patient education material.We will post information about a topic and ask you to share additional ideas and we will write patient education material with your assistance.How about if we start with dry skin. Below is some information we share. How can we improve it?

Changing attitudes and shifting perceptions

Caroline White at TEDxKingsCollegeLondon, posted 22nd May 2013
Caroline's passion is to raise awareness of (Down syndrome) and help to shift outdated perceptions surrounding disability whilst championing inclusion and making 'different' normal. Caroline's talk shows her transformation from fear of her child suffering from Down's Syndrome to acceptance to finally show us the power of difference.

Brennan Goes to Camp
Margaret Froehlke, Down Syndrome-Autism Connection, 30th May 2013
Brennan has Down syndrome and Autism Spectrum Disorder (ASD). He finally received the diagnosis of ASD when he was six years old. Up until then, we had no idea why his “Down syndrome” was so different from all the other kids we had met through the special education programs, and we could not understand why he had so many transition, sensory, social, and communication issues. It might seem sad to some parents to learn that their child has an additional diagnosis, but not for us...we were relieved! It helped us, and his educational team, to finally understand how we could work with the ASD to help reach him!

The world lies upward
Kelle Hampton, Enjoying the Small Things, 29th May 2013

... Twenty-nine years ahead of us on this journey, her voice oozes with the same love I feel for my own kids except there's more--years of stories, struggles, victories, experience. You can hear it behind her words, you can feel it in her voice ...  we hang on to those powerful words of Helen Keller: "...my world lies upward, the length and the breadth and the sweep of the heavens are mine."

Let’s talk about sex, babyKimchi Latkes (blog), 23rd May 2013
...I want him to experience his own sexuality. He may grow up with an intellectual disability, but I don’t see how that precludes him from partaking in the universal human experience. Love and sexuality are a huge part of that human experience.

Escape from labels. be free, be different: Sarah Gordy at TEDxYouth@HackneyMichelle Rossi (producer), 2nd April 2013

A professional actor with over 10 years experience in TV, theatre, radio and film - recent TV credits include 'Upstairs Downstairs' (Series 1 & 2), Doctors and Holby City. Sarah is also a Trustee of The Oyster Project a charity led and run by disabled people. She has Down syndrome but does not believe labels should define or limit what you can achieve. Currently, with the support of Arts Council funding, Sarah is co-producing and co-directing Oyster's first play with a professional creative team and Oyster members on stage.

School said 'hi' — special needs student took it from there
Vikki Ortiz Healy, Chicago Tribune, May 25, 2013
A few months before Ryan Burke became the first student with Down syndrome to attend Notre Dame College Prep in Niles, his father made an emotional plea to his son's classmates.

"All we ask is that you say 'hi' to him. Just give him a chance," Kevin Burke recalled saying at a school assembly. "He'll take it from there."

How not to say the wrong thing,
Susan Silk and Barry Goldman, Los Angeles Times (op-ed), April 7, 2013
Susan has ... developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Not about Down syndrome, not about disability, but applicable - you'll get it.

Some people have been busy this week ...

Nice story and picture of Alannah McKeon and Rose Croxford in yesterday's Border Mail:

Alannah McKeown is proud. Not just because she recently won gold and silver in the pool at the state championships in Melbourne. And just not because she will now be one of four Ovens and Murray representatives at the Special Olympics Asia Pacific Games in December.

But because she will wear team Australia’s colours at the opening ceremony.
“I’m looking forward to meeting new people and feeling proud of wearing the green and gold,” Alannah, 17, said

... read and see it all here, in the Border Mail


More Success for The Interviewer
Bus Stop Films' most recent release, The Interviewer has been doing really well on the international film festival circuit, winning awards, and being screened in specialist and mainstream events.

This week, our very best wishes go with Gerard O'Dwyer, as he is nominated for another best actor award at the St Kilda Film Festival, in Melbourne:

Proudly presented by the City of Port Phillip, the 30th St Kilda Film Festival will draw to a close with the Closing Night Awards Ceremony, Saturday, June 1 at the St Kilda Town Hall to announce the winners in these categories as well as the 2013 Audience Award.

BEST ACTOR NOMINATIONS
Gerard O’Dwyer – The Interviewer
John Batchelor – Huge
Millie Spencer-Brown – Blue Monday
Nicole Nabout – Treading Water
Steve Mouzakis – Joey

Visit the Bus Stop Facebook page to see how busy and successful the Interviewer team have been.

Events for June 2013

Richard and Estelle's Big Day Out
Down Syndrome NSW
Sunday 2nd June 2013
Five Dock

Free information sessions on individualised funding

Resourcing Families

Throughout June

Across regional NSW

Getting Started - workshopsMy Choice Matters

Thursday 6 June 2013  Hornsby
Thursday 27 June 2013  Newcastle

Dance to the Nines
Willoughby Council
Friday 7th June 2013
Chatswood

Nominations for NSW Don't Dis myAbility ambassadors close
Monday 10th June 2013

Proloquo2Go Workshop
Spectronics
12th June
Brisbane

Disability and retirement: Inclusive and active ageing - seminar

Centre for Disability and Research Policy

Friday 14th June 2013

Sydney

Supported Living - webinar

Family Advocacy

Friday 14th June 2013

Mothers Weekend Away

Down Syndrome NSW

14 - 16th June 2013

Sydney
Personal Development and Sexuality forum
Family Planning NSW
Saturday 15th June 2013
Ashfield

My Choice, My Control, My Future: national conference

DisabilityCare Australia
23 – 24 June 2013
Melbourne

Supported Living Fund, Round 3 applications open
NSW Ageing, Disability and Home Care
24th June 2013

Effective reading and language instruction for children with Down syndrome - webinar

Down Syndrome Education International

26th June 2013

Nominations National Disability Awards close

Friday 28th June

Library Thursday, 30th May 2013: new book, 'Body Talk'

Body Talk: Teaching Students with Disabilities about Body Language written by Pat Crissey, published by Woodbine House, has just arrived in the library.

The book details how to describe and interpret emotions, facial expressions, posture, body orientation eye gaze, personal space, touching and gestures. Written as a guide for parents and educators, the book contains clear explanations and many practical activities. Crissey has been a special educator for over twenty years.

Down Syndrome NSW members can contact Jo via library@dsansw.org.au to arrange a loan.

Special iApps releases Android version of popular Special Words app

Special iApps has today released a new version of Special Words – suitable for Android devices.

Special Words is also available for Apple iPad, iPod and iPhone devices.

The Special Words app is designed specifically for children with special needs, including children with Down syndrome. It offers various combinations of picture and word matching exercises to support the teaching of vocabulary and sight word reading (picture-picture, picture-word, word-word).

• See further information and links here, on the Down Syndrome Education International website.

2014 Calendar photos reminder, and Entertainment Books on sale

Siena and Jo have asked that we remind members who wish to see their photos in the 2014 Down Syndrome NSW calendar to please send them in as soon as you can - they are just about ready to begin designing and production so it can be ready in good time for sales.

•  Email your photos to admin@dsansw.org.au, telling us who is in the photo and what is happening

2013 - 2014 Sydney, Sydney North and Sydney Greater West Entertainment Books are on sale now! Enjoy the benefit of discounts and vouchers, and support Down Syndrome NSW at the same time.

• Click here to purchase your  Entertainment Book

Proloquo2Go workshops: Spectronics

Spectronics has signalled a new series of workshops around the new Version 3.0 of Proloquo2Go supporting use of iPads for communication:

Brisbane 12th June 

Sydney 24th July

Melbourne 31st July 

More dates and venues to follow

• Details and registration

Supporting your family member’s personal development and sexuality in a positive way: Family Planning NSW forum

A forum for parents and carers of people with intellectual disability of all ages
Find out how to support your family member’s personal development and sexuality in a positive way.

• Experienced presenters to answer your questions 
• Meet other parents 
• Free resource bag 
• Family Planning NSW bookshop open 

Saturday 15 June 2013, 1.00pm - 5.00pm
Family Planning NSW
328-336 Liverpool Road, Ashfield NSW 2131

Attend 2 workshops, choosing from a range of topics
Cost: $15 (includes afternoon tea)

Who should attend?
Parents, foster parents, relatives and other unpaid carers of people with disability are welcome. The forum will address sexuality issues across the lifespan including childhood, adolescence and adulthood.

For further information, visit the Family Planning NSW website here.

Contact: Danielle Fehir, Health Promotion

T: 02 8752 4388     E: daniellef@fpnsw.org.au

Note: This forum is not intended for service providers. Please see Family Planning's website for information regarding professional education for disability workers.

Dance to the Nines: Chatswood, Friday 7th June

Weekend reading and viewing: 25th - 26th May 2013

My Perspective - Short List Announced!
Down's Sybnrome Association (London), 17th May 2013
My Perspective Photographic Competition for UK people with Down's syndrome has gone from strength to strength since 2010, with more than 250 entries this year. The 25 short-listed images have now been dispatched to the judges for them to score in order of personal preference and the winners will be announced on Thursday 6th June at The Orangery, Kew Gardens in London. The shortlisted images can be viewed on the DSA website.

Sarah's Kitchen Creations 

Sarah and Valerie Strohl, United Media Now, 21st May 2013

... a new (online) cooking show for your enjoyment and learning ... you will discover some nifty tricks you can use to help your child learn to be an aficionado in the kitchen. Better yet, the more comfortable you become using these methods in the kitchen, the more comfortable you will become using them throughout your day with your loved one. Sarah is a 14 yr old who has Down syndrome.

New (Kentucky) state law educates about Down syndrome
Harold Kleinert, Kentucky Voices: Kentucky.com, 22nd May 2013

There is no event so momentous as the birth of a child, and there is no time when accurate information is more critical than when new or expectant parents receive a diagnosis of Down syndrome.

Read more here: http://www.kentucky.com/2013/05/22/2648854/ky-voices-new-state-law-educates.html#storylink=cpy

Are more babies with Down syndrome born to younger mothers?
Frank Buckley, Frank Talk (Down Syndrome Education International), 23rd May 2013
Although the chance of giving birth to a baby with Down syndrome begins to rise quite quickly for mothers aged over 30 years, in most countries it has traditionally been the case that more babies are born to younger than to older women. This was because, in general, many more babies were born to younger women than to older women. But, is this still the case?

Read more here: http://www.kentucky.com/2013/05/22/2648854/ky-voices-new-state-law-educates.html#storylink=cpy

A green light to driving 

(US) National Down Syndrome Society, (My Great Story Project), 21st May 2013

Jay Nothnagle, a 30-something-year-old bachelor ... lives in his own apartment, has a job, owns a pick-up truck and happens to have Down syndrome. Jay shows how getting his driver's license changed his life and changed others' perceptions.

Helen Mirren gives royal welcome to boy with Down syndrome, terminal cancer

Randee Dawn, Today, 21st May 2013
Dame Helen Mirren stepped forward to invite (Oliver) to the Gielgud Theatre to see her play the Queen -- and invited him backstage to share tea and cake and to meet the corgis who star in the play with her. There were even footmen. And naturally, she was in costume the entire time.

Divorce: Does "Down syndrome advantage" exist?
Maureen Wallace, She Knows: Parenting, 23rd May 2013

Can a child's extra chromosome exponentially strengthen a marriage? Research points to a lower divorce rate compared with parents of children with other disabilities and even couples whose children have no special needs.

Studio ARTES promotional video
Studio ARTES,1st May 2013
Studio ARTES is an independent non-profit organisation offering creative programs to aduts with disabilities in Sydney's northern suburbs. 3m 15s

NDIS: Intentional community up and running

Fran Kelly interviews Sally Richards, ABC Radio National Breakfast, 22nd May 2013

Earlier this month we spoke with Canberra mother Sally Richards, whose son Jackson has a profound intellectual disability, about her strong support for the National Disability Insurance Scheme. Twenty-seven-year-old Jackson has since moved out of home into a unique housing estate known as an Intentional Community, which could be one of the very first of its kind in the world. Click 'download audio'. 8m 38s 

2013 PossABLE IDEAS Expo workshop presentations
IDEAS, 22nd May 2013
A program of community and individual capacity building workshops to assist individuals, family members, professionals and the community understand the changing environment and the move to individualised funding and a person centred approach. Weaving through the streams of workshops is the recognition that safeguards need constant tending and understanding for self advocacy, and other protections should they be necessary. A compilation of some of the workshop presentations from the 2013 PossABLE IDEAS Expo workshop program (from the event in Newcastle, 3rd - 4th May 2013).

Commentary on how the NDIS will work at the front lines

After the flurry of political activity and commentary as the NDIS and its funding was debated and legislated, this week has shifted to focus more on what its implementation will actually mean for  the everyday lives of people with disability and their families:

A plan for DisabilityCare in Aboriginal communities

Damian Griffis, Ramp Up, 16th May 2013

For the NDIS to be a positive change in the lives of Aboriginal and Torres Strait Islander people with disabilities, that change must be driven by the community itself ...

New bid to address Indigenous disability
Thea Cowie World News Australia (radio transcript), 21st May 2013
Indigenous people with a disability face many barriers including the fact that their own languages don't even recognise the word. But after years of neglect Australia's first people are hopeful they will finally get the assistance they need.

Passive to active: NDIS shifts disability focus

Ya'el Frisch, Ramp Up, 22nd May 2013

Until now, Australians with disability have seemingly been cast in the role of passive welfare recipients, with little control over whatever support was available. With the National Disability Insurance Scheme, Ya'el Frisch hopes this role shifts to active empowerment, where people are able to imagine, enable and realise the life they want.

DisabilityCare now a reality but how can we protect its future?

Donna McDonald, The Conversation, 20th May 2013

(This) is the first time in Australian history that disability has been at the centre of a federal budget ... These days, nearly all countries have some type of public funding program covering different aspects of disability assistance. Approaches differ based on the economic prosperity and status of disability rights in individual nations. The lessons that can be learnt from abroad depend on what we want to learn.

The long wait to fix a very broken system
Kirsty Needham, Sydney Morning Herald, 19th May, 2013
It will be a frustratingly long wait before Sydney families living with disability can experience the promised safety net of DisabilityCare Australia. For all the legislation passed in Federal Parliament, the bipartisan funding commitments, and the public goodwill that has helped a 0.5 per cent rise in the Medicare levy pass so swiftly - without even a murmur of ''no new tax'' - it will be five years before the new era of services based around personal needs and goals will begin for Sydney residents with a disability.

DS NSW Family picnic: revised starting time

Please note that the starting time for the Down Syndrome NSW family picnic scheduled for Sunday 2nd June has been revised to 12.30 pm, at Livvi's Place in Timbrell Park, Five Dock

• Click here to see the flyer with all details in your web browser

University of Western Sydney survey of parents with young children with additional needs

What is this study about?
The Australian Government will soon introduce the National Disability Insurance Scheme (NDIS). We think that most families will get information about the NDIS from websites. To make this as easy as possible we want you to tell us where you get information to help your child with additional needs, what you look for and how it should be set out.

Funding to do this study has come from the Practical Design Fund (Department of Families, Community Services, Housing and Indigenous Affairs).

Who is doing this study?
The researchers are Associate Professor Christine Johnston, Dr Danielle Tracey, Dr Fiona Papps and Sylvana Mahmic.

Early Childhood Intervention Australia (ECIA) is also helping with the study. If you would like more information please contact Christine either on c.johnston@uws.edu.au or 02 4736 0782

• The online survey is here

My Choice, My Control, My Future conference

DisabilityCare Australia is holding a two day conference in Melbourne.  It will feature speakers such as the Minister for Disability Reform Jenny Macklin and Disability Discrimination Commissioner Graeme Innes. Early bird registrations are now open. 

My Choice, My Control, My Future: DisabilityCare Australia
23 – 24 June 2013
Melbourne Convention and Exhibition Centre

The conference will bring together more than 1,000 Australians to discuss DisabilityCare Australia, the national disability insurance scheme.

The conference will provide a forum for people to share their unique experiences with disability, find out about the DisabilityCare, how it will work and how governments will help people and service providers transition to this new system of support.

• Details of cost and registration process

Library Thursday, 23rd May 2013

• The Shape of the Eye ebook

George Estreich’s book The Shape of the Eye has just been published in paperback and e-book formats. Originally published in 2011, this memoir is a work of creative non-fiction written by poet and stay-at-home father George, exploring the arrival of Laura into the family. 

You can read the Introduction  here. 

Now that the book is available in new formats, consider asking your local library to purchase a copy -  it is good to encourage public libraries to increase their  resources about Down syndrome available to the general community. DS NSW does not currently hold e-books, but we do have a copy of the 2011 hard cover edition of The Shape of the Eye available in our library, for members to borrow.

• Down Synrome News Vol 36, Spring 2013, published by the (US) National Down Syndrome Congress, is now available online. This issue's main features are:
  

Managing Behavior in Children with Down Syndrome -  How Understanding Leads to Intervention: Sensory Considerations (Part 1)Mary Pipan, MD, Clinical Director, Trisomy 21 Program, Children’s Hospital of Philadelphia
Adorable, well mostly. Loved, absolutely. Frustrating, of course. Social, usually, but not always appropriately. Communicative, but not always easy to understand. Can be compliant, but “no” is a favorite word. Not quite“my way or the highway.” Flops and drops ... This article is available in both English and Spanish.

My First Voting Experience, Jenna Quigley
This year was my first time voting - and it was in the presidential election. 

Reviews of When Down syndrome and autism intersect; Lucky dogs, lost hats and dating don'ts; Try reading again: how to motivate and teach older beginners, age 10 and up; The boys' guide to growing up: choices and changes during puberty

... and further information about the NDSC 2013 Convention in Denver, Colorado.
An archive of past issues of Down Syndrome News isavailable here.

• People with Disability Australia E-Bulletin, Edition #84 May 2013

Calling for professionals - share your experience with SAGE-ID?

On the Successful Ageing in Intellectual Disability Study's Facebook page 21st May 2013:

The Successful Ageing in Intellectual Disability study is calling for professionals who are involved in the care and support of people with ID or have experience of working with adults with ID. 

We are conducting focus groups, asking professionals to come together across service sectors and share their experiences of these issues. 

We hope that together we can build a complete picture of the needs of the ID and family carer population and generate ideas on how we can respond effectively to this ageing group of individuals. 

If you are interested in attending this discussion group, please RSVP to sageid@unsw.edu.au indicating your availability: 

WEEKDAY AM/PM/EVENING
WEEKEND AM/PM/EVENING

Professor Cliff Cunningham 1941 - 2013

Carol Boys, Chief Executive, Down’s Syndrome Association in London has posted a tribute to Professor Cliff Cunningham (Liverpool John Moores University), psychologist, writer and researcher, who worked with children and adults with Down syndrome and their families for more than 40 years. Prof Cunningham died last week in the UK after a long illness.

Read it here, on the Down's Syndrome Association blog, 20th May 2013

Prof Cunningham was an advisor to the Board of Down Syndrome International - their information about his work is here.

If the person with Down syndrome you care for more than 20, it is quite possible that Prof Cunningham's book, Down syndrome: an introduction for parents and carers, was one of the first and most useful information sources you discovered. It was first published in 1982, with a third edition published in 2006.

His work will continue to be highly valued, and he will be sadly missed.

Inner West social club: CatholicCare

CatholicCare has formed a new Social Club for people with disabilities over the age of 18 years old, that live with a carer, within the Inner West area of Sydney. 

Referrals will be taken to the end of May.

We will be taking small groups out into the community to the picnics, bowl

ing, arts and craft, cooking, clubs, putt putt golf, BBQ’s, movies, beaches, train and ferry trips and museums all these activities will be held across the week. 

We are aiming to keep activity costs as low as possible, however there will be a small cost involved in each activity to cover the price of entry, lunch or materials. The costs, time and date will be sent out on a quarterly calendar, then you will need to return to the office and then you will receive the confirmation of your activity choice prior to the first activity. 

We may not be able to offer you a place in every single activity, however we are we aim to offer an alternative activity where possible.

• Contact: Terrie or Anela on 8778 4222 for more information.

NSW Carers Awards 2013

NSW Ageing, Disability and Home Care has announced that nominations for the NSW Carers Awards 2013: 

More than one in 10 people in NSW are carers. Carers can be anyone including parents, partners, brothers, sisters, friends, sons or daughters. They provide unpaid support to those who need it because of a disability, mental illness, chronic health condition, dementia or ageing. 

The 2013 NSW Carers Awards acknowledge and celebrate the significant unpaid contribution carers make to the person (or people) they care for and to the community.

• Further information on the NSW Carers Awards and how to make a nomination

Natalie runs 42k all the way for Down Syndrome NSW!

Thank you Natalie Bartolo, for your support of the work of Down Syndrome NSW, and our best wishes for your preparation and training and for the Marathon:

I am going to be running in the Gold Coast Marathon on 7 July 2013. It has given me the opportunity to raise funds for Down Syndrome NSW.

You can support Natalie and her fundraising for Down Syndrome NSW here.