Address details

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

Saturday, 29 September 2012

Weekend reading and viewing 29th - 30th September 2012

Parramatta's Riverside Theatres wins award for challenging stereotypes, Elias Jahshan, Parramatta Advertiser, 27th September 2012

From Cincibility blog (where you will find other interesting reading too):

NSW Government response (delivered 6th September 2012) to the final report of the Inquiry into transition support for students with additional or complex needs.  The Social Affairs Committee's web page for the inquiry (established in June 2011) is here, including links to submissions, hearings and debates, and its report (tabled in March 2012).

Why disability history should be on the school curriculum, Sarah Ismail, The Guardian (UK), 26th September 2012

From the National Center for Learning Disabilities (US) website:

Countdown on to Junior National Games, Diana Bushby, NBN TV,  24th September 2012 
News story about the Special Olympics  Junior National Games in Newcastle in December

We need a sign! Comedian (and dad to Henry) Rob Snow has created comedy shows about '... the oftentimes humourous commonalities we share in raising a child with special needs, and how sometimes we just gotta laugh'. The site includes video clips.

Some singing and dancing for your long weekend:


  • Visit our Facebook page for more stories and news that we've highlighted this week, like Special Olympics Australia's photo and story about Newcastle athlete Cooper Slabin-Gay, 14, whose mum describes him as a 'sports nut' - he's been selected in basketball for the Special Olympics Junior National Games in December.

Friday, 28 September 2012

Dementia awareness and a new research proposal about Down syndrome

It's Dementia Awareness Week in Australia, a good time to hear about a new pilot study funded by Johnson & Johnson, at the University of California, San Diego, that could lead to a much broader project.  The well established link between Alzheimer's disease and older people with Down syndrome will be used to model treatment of Alzheimer's disease both amongst people with Down syndrome and in the general population. It is thought that Alzheimer;s disease in people with Down syndrome, although more likely to occur at an earliler age, more closely resembles the biology of late-onset Alzheimer's, than other early-onset forms, and affects more people.

University of Sydney: webinar on graduate level study in health and developmental disability

For potential future students in post-graduate programs:

Join Professor Roger Stancliffe as he speaks about the Master of Health Science (Developmental Disability) and how it expands the knowledge and understanding of the issues faced by people with developmental disabilities and enhance the skills of professionals to become well trained, research literate and leaders in the disability services and policy making.

Monday, 8 October 2012
10.30am to 11.30am 

Further information here, and online registration here

Embracing Life and Ageing Well

The Department of Developmental Disability Neuropsychiatry at UNSW is hosting a community forum for people with an intellectual disability (ID), their carers and family members. The forum aims to increase awareness to carers and people with ID on how to help look after the physical and mental health needs of ageing individuals with ID.

30 October, 2012
5.30 - 8.30 pm

South Sydney Juniors Club, Main Auditorium
558a Anzac Parade, Kingsford, NSW 2032

You will hear... 
  • Tips for healthy ageing
  • Ways to look after your mental health for people with ID and carers
  •  About practical support available for carers and people with ID
  • Answers from experts about ageing, mental and physical well
Speakers ...
A/Professor Julian Trollor, Chair Intellectual Disability Mental Health, UNSW
Dr Seeta Durvasula, Centre for Disability Studies, Sydney Medical School
Dr Lynette Lee, Director Geriatric and Ambulatory Medicine, St.Vincents Hospital Sydney
Ms Sam Mostyn, National Mental Health Commission

Call Anjali Bhardwaj for further information and to RSVP on 9931 9155 or e-mail

Shoalhaven support group: new!

A new support group for parents with Down Syndrome children aged 0-5 yrs in the Shoalhaven is about to launch.  Our first get-together will be on:

12.00 md lunch, Thursday 25th October

Refresh Cafe *, Bomaderry
*buy yourself a cuppa or lunch.

The cafe is located in the IGA building at Bomaderry.

More information: ring Judy 0419 477 428

Thursday, 27 September 2012

Medicare Locals and people with intellectual disability - NSW CID Fact Sheets

The NSW Council on Intellectual Disability continues its advocacy for excellence in health care for people with intellectual disability with the publication of three new Fact Sheets for and about Medicare Locals:

These fact sheets are about how Medicare Locals can improve the health of people with intellectual disability and how local intellectual disability groups can work with Medicare Locals.

For Medicare Locals
This fact sheet has been prepared to help Medicare Locals act on the health of people intellectual disability.

For intellectual disability groups
This fact sheet has been prepared to help advocacy and family groups, government and non-government service providers. You can work with Medicare Locals to improve the health of people with intellectual disability.

Resources and references
This fact sheet has been prepared to provide further resources and references for intellectual disability groups and Medicare Locals.

New at Rozelle Neighbourhood Centre: singing and film

Do you like to sing? Would you like to sing?
Thanks to the Opus 50 Charitable Trust an accessible singing group, Chrysalis, has started at Rozelle Neighbourhood Centre. We would like anyone who can sing a bit to join in (maybe you belt out something in the shower but are a bit shy to sing in public yet, or you sang a bit at school thousands of years ago and enjoyed it).

People with and without disability are encouraged to come along ... this is an accessible group in the community and we absolutely hope people from everywhere will make this their cool place to be on Thursday evenings.

The music director for Chrysalis is Australian composer and musician Sarah de Jong. Sarah has composed music for film and theatre, recently a new Australian opera “Cockatoos” for the Victorian Youth Opera. But Sarah covers repertoire from Handel to MacArthur Park, Coldplay and Leonard Cohen. Sarah also teaches piano and singing everywhere.

What: Chrysalis
Where: Rozelle Neighbourhood Centre (accessible venue)
665a Darling St Rozelle
When: Thursday evenings 6.30pm to 8pm in session from 4 October to 6 December
Cost: free
Contact: Sue Johnston 9555 8988 extension 2 or

The 1 in 5 Film Project: Audition Callouts for emerging actors with a disability 
The 1 in 5 Film Project is a joint initiative of Torrid Films and Rozelle Neighbourhood Centre to develop and produce a professionally made short film in collaboration with emerging actors with disabilities. 

The finished film will be submitted to both national and international film festivals. Emerging actors who identify as having a disability are invited to audition for this exciting project. 

Auditions will be held the weekend of 6 and 7 October at Rozelle Neighbourhood Centre.

For more information, please contact Sue Johnston on 9555 8988 extension 2 or email:

Wednesday, 26 September 2012

New inquiry announced and two reports released

A new Senate inquiry has been announced in the Australian Parliament, a Victorian Human Rights Commission report on schools and students with disability,  and a new AIHW report on the use of disability services have been released:
On 20 September 2012 the Senate referred the matter of  involuntary or coerced sterilisation of people with disabilities in Australia to the Senate Community Affairs Committees for inquiry and report.
The closing date for submissions has not yet been set - please check this website for updates. The reporting date is 24 April 2013.

'The first report of its kind by a human rights commission in Australia, Held back examines how well students with disabilities fare in government, Catholic and Independent schools across Victoria – capturing the experiences of more than 1,800 students, parents and educators who participated in the research.'

Second call for participants in asthma research: University of Sydney

  • 15% of Australians with intellectual disability have asthma.
  • Inhaler devices are the preferred method of drug delivery.
  • Using inhalers (“puffers”) is a challenge.
  • Assistance is often provided to people with intellectual disability to take medication in residential care settings and the family home.
  • Do carers get the support they need to assist people with asthma?
  • We wish to interview family caregivers, direct healthcare workers and nurses who have cared for a person with intellectual disabilities who has asthma or uses inhalers.
 What does this mean for you?
  • We gain an understanding of caregivers’ experiences with giving respiratory medications, and the challenges involved.
  • You will be compensated for your time.
 Please contact Sharon Davis on 02 9114 1159 or 0411817299 for more information.

This study has HREC approval from the University of Sydney and is being conducted by the Faculty of Pharmacy. The Chief Investigator is Dr Sinthia Bosnic-Anticevich, Senior Lecturer in Pharmacy Practice, and the team of researchers includes Associate Professors Paul Young and Daniela Traini, Dr Seeta Durvasula, Dr Diana Merhi and Sharon Davis, PhD candidate.

Tuesday, 25 September 2012

Happiness in self-managing disability funds

Parents of children and young people with disabilities who self-manage their funding support are significantly happier than other carers, an Australian-first study has found.
UNSW’s Social Policy Research Centre evaluated the Self Directed Support program, the first in Australia to focus on children with a disability aged 0-6 years, as well as 20-35 year olds with acquired brain injury.
The program was piloted over 12 months by the Queensland Department of Communities.
Families in the study were provided with a budget of $4,000 and chose which services to use with advice from an allocated coordinator.
Chief investigator, Associate Professor Karen Fisher, said the wellbeing of the parents was 25 per cent higher than that of Australian carers who weren’t self-managing their funds.
“Parents attributed the increased quality of life to having control over the support and services they chose for their child,” said Associate Professor Fisher.
One parent chose to spend money on equipment to help her son learn to walk, saying, “Since he has had that trolley for walking, you can’t stop him! He didn’t want to walk before.”
Other parents said having access to a knowledgeable support coordinator was invaluable. “It’s taken a huge amount of stress from us. It was such a relief to find this program.”
Associate Professor Fisher said the positive results of the trial have come at a critical time as the National Disability Insurance Scheme (NDIS) is about to be implemented.
“This pilot has national implications because children and young people are the most likely to benefit from the introduction of the NDIS. Improving their experiences, as well as that of their parents, is essential for early intervention and life stage transitions.”
Associate Professor Fisher said concern that individuals would mismanage their funds has overshadowed the positive outcomes of self-directed funding, and these fears are unfounded.

"People don't waste their funds on gambling or other activities," she says. "The families involved in the study were highly responsible and used the money wisely, often choosing to continue having their money managed by their support coordinator even when they had the option to do it independently."
The Sunshine Coast Children’s Therapy Centre and the Brisbane-based Acquired Brain Injury Outreach Service implemented the pilot and coordinated support.
Source: UNSW Newsroom

Signing and Visuals Workshop: Lifestart St Marys

Wednesday, 17th October 2012
6:30 to 9pm

 Lifestart Centre
 8-10 Carinya Ave, St Marys

For family members and Early Childhood staff

 RSVP: reply to Lifestart 9623 2100 by October 12th

Monday, 24 September 2012

Are you a parent or guardian of a child who has received a new diagnosis?

Carers NSW invites you to take part in a six week therapeutic group program that will allow you to connect to and share experiences with other people in similar situations. Facilitated by experienced counsellors, participants will be supported in exploring the emotional  impact of caring, as well as identifying and employing useful strategies to better cope in everyday life.

These group discussions will occur weekly over six weeks, with a follow-up session a few weeks later. Information, newsletters and other resources will also be supplied.

You may also choose from two types of groups - one face-to-face and one over the telephone - in order to best meet your needs.

Telephone support group:  
1st, 8th, 15th, 22nd, 29th November and 6th December 
10 – 11am

Face-to-face support group: 
6th, 13th, 20th, 27th November, 4th and 11th December 
9.30 – 11.30am (Sydney CBD) 

For more information or to register please contact 
Bozena or Nadia on 1800 242 636 (weekdays 9am-5pm)

Summer camp: dare2Bdifferent, Scripture Union

Dare to be Different 'will be five days of intense fun for able-bodied and disabled young people that will guarantee you new challenges and friendships. You’ll discover more about yourself, other people and God. You’ll learn new life skills and take away amazing experiences and memories.'

Friday 28th December 2012 to Tuesday 1st January 2013
Wedderburn Christian Campsite, Wedderburn (Campbelltown area)

Further information: Scripture Union NSW

Saturday, 22 September 2012

Weekend reading 22nd - 23rd September

11th Word Down Syndrome Congress presentations, Down Syndrome international, Capetown, August 2012 - downloadable copies of speaker's presentations 

Part 2 of Standardized Testing and Down syndrome: Age Equivalents, Jennifer Bekin, Let's Talk ABout Down Syndrome (blog), 17th September 2012. Includes link to Part 1, posted last week.

Ted joined Reds for a day, but changed team forever, John Eradi,, 16th September 2012 This article and photo gallery has lit up the internet this week.

'When he came along I was just a child myself and suddenly I had a child of my own with special needs.' How 15-year-old became Britain’s youngest mother of a Down’s Syndrome child, Mail Onine (UK), 17th September 2012

Joey has opened my eyes, Stephen Unwin, The Guardian on Facebook (UK), 15th September 2012. Joey has a complex, un-labelled disability.  His father writes about the challenges and joys in a straightforward, loving, but unsentimental way.

Letter to the Daily Mail, Frank Buckley, Down Syndrome Education International, and Keiron Smith (Author of The Politics of Down Syndrome), 7th September 2012

Email, Dave Hingsburger, Rolling Around in My Head blog, 21st September, 2012. Reflections on changes in attitudes of other towards people with disabilities expressing their sexuality.

Friday, 21 September 2012

Arts news and events: exhibitions, competition, film festival, grants, arts worker database

Miroma’s Annual Art Exhibition will be held  over two weeks showcasing the creative talents of artists from Miroma Fine Arts program. The Miroma Fine Arts Program in Vaucluse provides a studio style setting where disability arts worker and people with disability come together to create expressive and distinctive works of art. 

19 September – 2 October 2012
Art2Muse Gally, 357 New South Head Road, Double Bay
Everyone welcome, entry is free.  Accessible venue 

Contact: Katrina Hampton at Art2Muse on 0424 809 849 or Douglas Channing at Miroma on (02) 9337 5167

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Challenge Disability Services Art Competition 2012
Challenge Disability Services Favourite Things art competition 2012 is calling for entries from all persons with a disability attending a disability service in regional NSW. $2500 worth of prizes available. 

Entries open until 1 October 2012

Open to: People with a disability attending a disability service in regional NSW. Entry is free.

Official exhibition of selected works opens on 13 November 2012 and prizes will be presented on International Day People with Disability (3rd December.)
Tamworth Community Space, Ray Walsh House, Peel Street, Tamworth NSW

Ray Walsh House is wheelchair friendly with accessible toilets and parking 

Contact: Challenge Marketing Assistant, Amie Collins on (02) 67 631 806 or

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Access All Areas Film Festival 2012

IDEAS is pleased to announce partnering once again with Access All Areas Film Festival. Access All Areas Film Festival is an accessible showcase of new Australian films for people with a disability in celebration of International Day of People with Disability as part of the Don’t DIS my ABILITY campaign. Every year Access All Areas invites community organisations and schools to host their own free screening of new family-friendly Australian short films equipped with captions and audio description. The films tour to 50+ venues around the country, including accessible cinemas, schools, community centres and disability groups.

Everyone is welcome to host a screening, all your venue needs is a DVD player and TV or projector. If you would like to get involved and host a FREE screening in your community, click on this link and complete the form! (Applications close 1st October, screenings must be held in October/December 2012). You will be provided with a DVD copy of the films, and information about each one, as well as marketing materials and information to help put your screening together. Head to the website for more details or get in contact with Adele Moleta (Tour Manager) on (02) 9281 5608.

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CASP Applications Now Open
Applications are now open for the 2013 Country Arts Support Program (CASP), offering small grants up to $3,000 per applicant, to regionally based arts and community organisations and local arts councils for short term, locally initiated projects.
CASP is administered by Regional Arts NSWApplications close on 1st October 2012
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Hunter Arts Worker Database
The Hunter Artsworker Database is a resource that can be used by organisations that wish to employ an artist who has experience working with people with disability. It will be housed online here, on the cultural database for the Hunter region under the 'Cultural Resources' section of the Directory. 

The Database will list artists according to artform, with a link back to individual artist profiles on, outlining their arts practice and experience working with people with disability.

It is expected that the Database will launched in November 2012 and Octapod is calling for artists who have experience working with people with disability to register for the Hunter Artsworker Database. There is no cost associated with registration.

* * * * * * * * * * * 

For Art's Sake
Support people with a disability through this vibrant exhibition of artworks by recognised and emerging artists, celebrities and people with disabilities, their families and friends. In its fourth year in 2012, For Art’s Sake, is an exciting FRANS annual fundraising initiative, highlighting the unique and inspired contributions that all people make towards Sydney’s dazzling, creative community.

 For Art’s Sake draws attention to the invaluable contributions to our society of  citizens with a disability, to their universal rights for access and inclusion and to the immeasurable value of the support that their families and carers afford them. 

Tuesday, 30 October 2012
Sydney College of the Arts, Rozelle
More information

* * * * * * * * * * * 

  • For  comprehensive news about the arts and disability in NSW, visit Accessible Arts NSW regularly

New web address for 'Let's talk - Down syndrome' blog

Let's talk - Down syndrome, Jennifer Bekins's excellent blog about communication and feeding in children with Down syndrome, has a new web address:  Change your bookmark/favourites/blog reader listing now to avoid missing anything!

Thursday, 20 September 2012

NDIS Launch Transition Agency seeking expressions of interest about a range of jobs

Extract from National Disability Insurance Scheme Update 22:

From July next year we will launch the first stage of a National Disability Insurance Scheme. The first stage will benefit around 20,000 people with disability in the Hunter in NSW, the Barwon area of Victoria, South Australia, Tasmania, and the ACT.

The NDIS Launch Transition Agency is seeking people with the experience of living with disability to help deliver an NDIS.

We would like to encourage people with disability, as well as people who have worked with or supported people with disability, to submit an expression of interest to work for the Launch Transition Agency in one of the NDIS launch sites.

There will be a variety of employment opportunities at the Agency, including for management, leadership and finance roles, local area coordinators and customer service officers.

The Agency is also seeking people who have allied health qualifications who can help people with disability plan for their current and future needs.

These positions will be available across all five launch locations and are expected to commence from early to mid-2013, with a small number starting in the coming weeks or months.

We want to gauge people’s interest in working in the Agency from the outset, which is why we’re calling for expressions of interest well in advance of the launch of the scheme.

Library Thursday: Woodbine House ebooks and other useful resources

Woodbine House books on Kindle
Woodbine House, publishers of any of our most respected books about people with Down syndrome has released 13 titles as Kindle editions, available through Amazon. More are sure to follow, so we'll be looking out for them. As you would expect, they are considerably cheaper than the print editions
If you don;t own a Kindle, you will also be able to read them on Kindle for PC, or the Kindle iPad app.

Down Sydrome News - Convention Issue
The latest issue of Down Syndrome News, the magazine published by the National Down Syndrome Congress (US) is now available online.  It focuses on the recent NDSC annual Convention in Washinton.

New and improved versions of See and Learn kits
Down Syndrome Education International is making improvements to its See and Learn Kits - see the DSE blog, Frank Talk for details.

Assistive Technology - a super listing
Lauren Enders is a speech  and language Pathologist with a particular interest in assistive technology.  She has used Pinterest to provide a super organised collection of links to assistive technology tools, resources, apps (LOTS of iPad stuff) - and because she has used Pinterest, it's all *very* graphic and easy to follow. It might take a few hours to look through it all, but looks very interesting!

Spectronics online subscription service
Spectronics has launched its online subscription service - details of what is available and costs are in this brochure. Pass the link on to your child's school in case they haven't seen it - they need to know.

Wednesday, 19 September 2012

Survey on sleep disorders in children with Down syndrome

Ph D candidate, paediatric nurse, Shervin Chirchill is recruiting families of children with Down syndrome to participate  in an online survey about their children's sleep habits.  We have checked with Shervin that responses are welcome from around the world, as long they are made in English. Participants will also be eligible to enter a draw for a gift card that can be mailed outside of the US.  

Sleep disorders are a significant issue for people with Down syndrome of all ages, including children, so we encourage you to consider contributing, and/or passing this information on to a family that can:

I am mother to a 16 year old son with Down syndrome, and also a doctoral student at the University of Washington's School of Nursing. I have been a health researcher for the past 15 years - with a focus on children with special health care needs for the past 11 years, while working at Seattle Children's Hospital. 

 I decided to pursue a doctoral degree four years ago because I was interested in designing research studies that focus on the health and well-being of children with Down syndrome. I am most interested in designing interventions to minimize health problems in our children and maximize their health and well-being as much as possible through preventive measures. 

Prior to designing interventions however there is need for knowledge about what needs to be done.

To this end I have designed my dissertation research to focus on gathering information about sleep and activity patterns of children with Down syndrome who are 5 to 18 years old. There is a great need for research in this area and little has been done to find out about parents' perceptions of sleep and activity habits of their children with Down syndrome. 

We know from previous studies that some of our children with DS can be at risk for sleep problems and we know they can also be at risk for overweight and lower amount of physical activity than their typically-developing peers. But we do not know the details of our children's sleep habits and activity habits as a population.

This is why, along with my professor and advisor, Dr. Gail Kieckhefer, PhD, ARNP, I am inviting you, if you are a parent, to participate in an online survey for parents of children with Down syndrome and their typically-developing friends. The survey will take approximately 30-45 minutes to complete online. 

 If you are a professional serving families who have a child with DS, or if you are a family member of a child with Down syndrome, I invite you to inform the parent of the child you know to participate in this survey.

The survey is secure and does not ask for any sensitive information. There are no questions about income or race/ethnicity - only questions about child's sleep and activity habits, some questions about parents' sleep and family environment, and some background information about child's health. There is also no identifying information within the survey. 

I will need the e-mail address of the parent to send a private survey link to them. If you are, or someone you know is, interested in taking the survey the first step is to contact me to get more detailed information about the survey and how to access it.

In the end of the survey the parent will be asked if they have a friend a relative with a typically developing child who would be willing to participate in the survey as part of a comparison or "control" group. The parent need not share the name or e-mail address, only to give the friend or relative my contact information for them to get in touch me to receive a survey link.

There are no direct benefits to parent or child; only that taking the survey may spark an interest in finding out more about sleep and activity for children with Down syndrome, or perhaps encourage the parent to discuss sleep and activity issues with their family health care provider.

Otherwise by participating you will only invest your time in helping advance research in issues related to children with Down syndrome.

Please contact me if you wish to participate in the survey or if you have any questions. You may send me e-mail at, or call me at 425-785-5706.

Most sincerely,
Shervin S. Churchill, MPH, PhD Candidate
Department of Family and Child Nursing
School of Nursing
University of Washington, Seattle

Wordless Wednesday (words on T shirts are OK!)

Tuesday, 18 September 2012

NDIS: ways to have your say

The National Disability and Carer Alliance has received funding from the Federal government to 'ensure people with a disability, their families and carers and specialist disability service providers have a chance to have their say about the design, introduction and implementation of the National Disability Insurance Scheme.'

... this project is about ensuring people have as many opportunities as possible to have their say about how the scheme should work on the ground so it best meets the needs of people with a disability and their families. 

... This project is not about the current system – there is a great deal of evidence already about how the system has failed to meet the needs of people with a disability and their families. What we are looking for is what people would like to see done differently in the future – what works well now, what could work well in the future and what would need to be done to make that happen

NDIS Engagement Project
The Alliance will ... hold a series of forums across the country, including in regional and remote areas. Some of these will be held jointly to include people with a disability, families and service providers all working and responding together. Some will be held separately to make sure people feel comfortable and safe and are able to express themselves in a manner that suits them.

The Alliance website lists scheduled events for people with disabilities, their carers and families, and events for service providers.  No events for people with disabilities and their families have yet been listed for NSW locations, but we are assured that dates in October and November are expected to be announced by the organisers, People with Disability Australia and Carers Australia
In the meantime, NS residents can complete the online survey:If you are unable to come to an Engagement Forum, or did not get to say everything you wanted to at the forum you attended, we’d like to invite you to complete the online survey. We are very keen to hear what you think the NDIS should look like.

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National Disability Insurance Scheme - Your Say
Starting in July 2013, the first stage of a National Disability Insurance Scheme (NDIS) will become real for people with significant disabilities in South Australia, Tasmania, the ACT, the Hunter region of NSW and the Barwon region of Victoria.

National Disability Insurance Scheme - Your Say is a new website set up by the Commonwealth government where you can have your say about what you want the NDIS to be; what would work best for you and your family. 

You can register for updates, tell the designers your story and what you want from the scheme, your thoughts about what makes a good support worker, for example.

Please take the opportunity to have your say.

* * * * * * * * * * 

Every Australian Counts
The community campaign for the implementation of the NDIS continues to monitor progress and lobby to raise community and political awareness of the urgent need for the NDIS. Visit the website for information on currents activities and events.

Monday, 17 September 2012

Resources to counter bullying: PACER Center

The PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old, located in Minneapolis.  It was established in 1977.

One of its prominent projects focuses on preventing bullying for all children, including those with disabilities.  Online resources include the 'Action Sheet', Bullying and Harassment of Students with Disabilities: Top 10 facts parents, educators and students need to know.

A focused program of activities is scheduled for the month of October.

Down Syndrome: the BIG Picture - invitation to participate

Families from around the world are invited to contribute photos to the exhibition Down Syndrome: the BIG Picture, being curated in the UK, to promote awareness of people with Down syndrome. The vision is to '... educate, inform and entertain though art and photography'. 

A few Australians have contributed, but there appears to be room for more -  the aim is to collect 5000 photos by the end of the year!

The blog included in the website tells stories behind the project.

Saturday, 15 September 2012

Weekend reading and viewing 15th - 16th September

Special Ed Advocacy: 9 Rules of Thumb, Robert K. Crabtree, Refers to US laws, but there is much of use wherever you live.

Standardized Testing and Down syndrome: Growth and Comparison (Part 1), Jennifer Bekin, Let's talk about Down syndrome (blog), 11th September 2012

Down's Syndrome Man Sues East Kent NHS Trust Over Do-Not-Resuscitate Order,  Jessica Elgot   The Huffington Post UK  13th September 2012.  A disturbing report from the UK, about an apparent breach of human rights, that has been prominent online this week.

Scientific Workshop Discusses Alzheimer’s/Down Syndrome Research, Global Down Syndrome Foundation (Denver, Colorado), 14th September 2012

Actors with Down Syndrome Raise Awareness, Sydney Lupkin, ABC News (USA), 14th September 2012

Two British blog posts on children with Down syndrome using Makaton (in Australia, the equivalent is now called Key Word Sign):
A little Star, Makaton website, 10th September 2012
Do we really need Makaton? Hayley Goleniowska, Downs Side Up, 10th September 2012

Changing the face of beauty - on online gallery

Friday, 14 September 2012

Photograhic Opportunity: 22nd September

Micaela Alcaino, a photographer based in Sydney is interested in doing a portraiture series with people with Down syndrome of all ages called 'Eternal Sunshine'.

Location: to be advised, but it will be somewhere in Petersham or Alexandria
Date: Saturday 22nd September
If you are interested in participating please contact Micaela Alcaino on before 20th September.

Note: There will be a range of ages included and places are limited 

Spectronics blog: 'the little red book' on Key Word Sign

We said last week that the Spectronics blog is a mine of information - and a lot of you have checked it out.

In this post speech pathologist Katie Lyon updates readers about Key Word Sign,  an updated 'little red book', and links to further information about why and how Key Word Sign can open up communication for people with Down syndrome and other conditions affecting communication.

Lawn bowls fund-raising fun day: Punchbowl, 23rd September

Robyn – 0403 542 857   Darren – 0423 955 815


Priscilla Leong, Fundraising and Events Coordinator, Down Syndrome NSW  
9841 4404  or  0402 503 885  or  

Thursday, 13 September 2012

Speak Up and DS NSW News and Update, Winter 2012

Down Syndrome NSW Winter 2012 publications are now online:

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).

Wednesday, 12 September 2012

$250,000 for swimming lessons for children with disability in NSW

Rainbow Club Announcement
The Rainbow Club Australia will soon be helping to change the lives of many more children, with news it has received significant Government funding towards teaching children with disabilities how to swim.
The announcement was made by NSW Minister for Disability Services, Andrew Constance, who said that $250,000 would be invested in the Rainbow Club, a charity that has been providing swimming lessons for young people with disabilities and helping them find their independence through recreational activities for more than 20 years.
Alexandra Finley, President of Rainbow Club Australia, said the organisation was delighted by the news.
“Our goal is to ensure that as many children as possible have the opportunity to learn and build on their skills in the water, so we are absolutely thrilled that the NSW Government has provided us with such a generous grant.
“While we already have over 500 children learning to swim with us, we also have at least 100 children on our waiting lists at clubs throughout New South Wales.
“The funding will not only help to reduce our waiting lists, but will also go a long way towards assisting us in establishing clubs across the state over time – particularly in those areas where children don’t have access to swimming lessons tailored for their needs,” she said.
Rainbow Club patron and Paralympic gold medallist Louise Sauvage was similarly enthusiastic about the news.
“I started swimming at the age of three. I know firsthand the difference it can make to the lives of kids with a disability – the health benefits and social interaction truly can change a young life.
“I am currently in London as Assistant Coach with the Australian wheelchair track and road team, and right now I am witnessing the impact of sport on the lives of individuals with a disability at the highest level.
“You never know the Rainbow Club’s programs could be creating some of our future Australian Paralympians,“ she said.
Ms. Finley emphasised the importance of ongoing fundraising to keep up with growing demand for the services offered by the organization.
“While we are extremely grateful for this one off grant, we also want to be able to ensure a sustainable future for the Rainbow Club Australia.
“The grant will go a long way towards helping us achieve this, but we are also dependent on a regular stream of funding to set us up for future success,” she said.
The Rainbow Club facilitates swimming lessons for children with disabilities, supporting 16 local clubs across NSW that meet on a weekly basis.  Approximately 500 children are presently learning to swim with the Rainbow Club and many more have benefited from their experience with the Rainbow Club since its inception.

For more information about the clubs visit: