Speakers Series: Down Syndrome Program, Boston Children's Hospital

Dates and topics for the remainder of  the 2012 Allen C Crocker Speakers Series (designed for parents) have been posted by the Down Syndrome Program at Boston Children's Hospital.


The next live-streamed session will be on July 23rd at 7:00pm (east coast US time), when David Stein, PsyD will present a talk on Education and Down Syndrome: Translating Neurodevelopmental and Neuroscientific Findings to Practice.


Video of the talk will be posted in the archives page within a few days.

Using iPads with children with Down syndrome

The Educational Resources page on the website of the Down Syndrome Research Foundation (based in Vancouver) includes copies of the presenter's notes from three presentations on technology and speech therapy. Each includes the differentiation between '... using the iPad to aid speech output and using it to learn new speech, language and literacy concepts', and focusses mainly on the latter use.

11th World Congress on Down Syndrome, South Africa, August

It is not too late to book for the  ...

11th WORLD DOWN SYNDROME CONGRESS 

CAPE TOWN, SOUTH AFRICA 

15-17 AUGUST 2012 

... for what promises to be a congress to remember. For the first time on African soil, the 11th WDSC will take place in the beautiful city of Cape Town, South Africa at the Cape Town International Convention Centre (CTICC). 

REGISTER HERE TODAY! 

INTERNATIONAL AND NATIONAL RENOWNED SPEAKERS. JUST TO WHET YOUR APPETITE ...

Sheri Brynard - Hopes & challenges of living with Down syndrome
Sheri is the only learner with Down syndrome who has passed a National Technical College Diploma in South Africa, without having been granted any concessions. Sheri has a full life, working, motivating, travelling and most importantly she changes perceptions of people with Down syndrome. She is proud to be who she is, a girl with Down syndrome! READ MORE 

Christy Lynch - Employment - the time is now!
Christy is nationally and internationally recognised for his pioneering work in achieving integrated employment for individuals with a disability. READ MORE 

Roy McConkey - Self Actualisation of Persons with Down Syndrome - An International Perspective
Roy is Professor of Developmental Disabilities at the University of Ulster, Northern Ireland. 
READ MORE

Plus many more exciting speakers...Check out the programme on the website 

PRE CONGRESS WORKSHOPS - 14 AUGUST 2012

INDABA - For people with Down syndrome facilitated by the UN SPECIAL RAPPORTEUR - MR SCHUAIB CHALKLEN
The purpose of the Indaba is to give adults and young people with Down syndrome an opportunity to meet their peers from across the globe and to discuss issues that affect their daily lives in this open forum. The agenda will be based on the five themes of the congress. As a person with Down syndrome, registration for the full three day conference will include free registration for the Indaba.

BOOK TODAY! READ MORE 

DOWN SYNDROME MEDICAL INTEREST GROUP (DSMIG)
Health Professionals attending the WDSC are invited to an International Down Syndrome Medical Interest Group to be held the day prior to the main congress. It is only open to health professionals, who currently are actively involved in provision of health care to individuals with Down syndrome, or research in the field. The DSMIG meeting will also be open to local health professionals who are not able to attend the whole congress. READ MORE 

POST CONGRESS WORKSHOPS ON EDUCATION AND EMPLOYMENT - 18 AUGUST 2012

Education
Dr Gordon Porter, Dr Elizabeth Dalton, Prof Roy McConkey

READ MORE 

Employment
Christy Lynch, Ruth Parker & Alison Newby, Representative from the International Labour Organisation

READ MORE 

REGISTER TODAY! 

Wordless Wednesday

Spark Creative Arts Festival 2012

Junction Works will again host the 

Spark Creative Arts Festival

24th ~ 26th October 2012 

The Tops Conference Centre Bendena Garden Rd, Stanwell Tops

from the Spark Festival brochure:

The Spark Creative Arts Festival is a festival of the arts for people living with a disability.  In its ninth year the Sparks Festival is set to go off like a cracker and what better way than with this years theme of the year of the Dragon… but wait there’s a more we’ve added a twist of the rainbow serpent too. With 9 workshops, heaps of entertainment expect the Sparks to fly ... get ready to ignite what’s possible.

This festival is designed to allow people with a disability the chance to find their voice through the creative outlets of music, dance, art and performance.  In a positive and safe environment, people with a disability can come together to share their stories, interests and ideas and be given the opportunity to share their experiences.

 ... full details, brochure and registration options are available on the JunctionWorks website now.

Prostate cancer screening in men with Down syndrome

The (US) Adult Down Syndrome Clinic posted this advice on their Facebook page on 5th June.  It refers to current US recommendations.  The ADC's advice for screening in men with Down syndrome is congruent with the current Australian recommendations for all men (links below):


Should we do PSA screening for prostate cancer in men with Down syndrome? We have not been recommending prostate screening based on these thoughts:

PROSTATE CANCER SCREENING
Prostate specific antigen (PSA) testing (blood test) is recommended for men in the general population who are age 50 and over to screen for prostate cancer. It is recommended by the American Cancer Society to do this exam in those men who have a life expectancy of at least 10 years. 


For the following reasons, I generally do not recommend PSA testing in adult men with Down syndrome:

• The life expectancy of a person with Down syndrome is 56 years.
  
• Prostate cancer is believed to be less common in people with Down syndrome.
  
• There is great deal of false positive results in PSA testing. This means that while the test suggests there is prostate cancer, the person does not actually have prostate cancer. A positive result necessitates additional testing including an ultrasound through the rectum, as well as a biopsy of the prostate through the rectum. Generally, in our patients with Down syndrome this would require a significant amount of anesthesia. This would cause greater risk for follow-up testing.

However, the latest recommendation is against PSA screening for anyone. Please see the article through the link. 


Current Australian recommendations for all men

Cancer Council Australia and the Australian Health Ministers' Advisory Council:

Prostate cancer screening: joint key messages (last reviewed May 2010)


Cancer Council of Australia: 
Prostate cancer screening (last reviewed June 2010)

Weekend reading and viewing 23 - 24 June

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

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


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


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


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

Cultivate: professional development grants for artists with disabilties

The Cultivate professional development grants for Australian artists with disability are now re-opened for applications.

Now in its second year, Cultivate provides seed funding to artists who want to further develop their professional artistic practice. Grants of up to $8,000 will be available for skills or professional development opportunities, mentoring, training, travel and more.

... visit the Arts Access Australia website for full details. Application close on 31st August 2012.

Library Thursday: 'Down Syndrome News' and 'Impact' online

These excellent two newsletters are published online as well as in print:

Down Syndrome News, Vol 35, Issue # 3, June 2012, published by the (US) National Down Syndrome Congress.


Contents:
Beating the behavior battle blues
Memory activities may enhance learning
DS Headline News - a special publication of the Youth/Adult Committee of the NSDC

The NDSC website has been revised and Down Syndrome News issues are available online back to April 2011, plus selected articles from several years - a very useful resource.


Impact Volume 25,  Number 1, Winter/Spring 2012, published by the Institute on Community Integration (UCEDD) and the Research and Training Center on Community Living, College of Education and Human Development, University of Minnesota
A feature issue on supporting new career paths for people with intellectual and developmental disabilities


Archived issues of Impact are available from here.

Proloquo2Go 2.0 ...

...  a significant upgrade, will be released today (19th June US, 20th June Australia), by AssistiveWare.  You can follow Aileen Ryan's blog, Key Word Signing and Proloquo2Go for information and links about new features.  And/or 'like' her Hands Can Talk Facebook page.

From AssistiveWare's 'About' page:
Proloquo2Go™ is an award-winning Augmentative and Alternative Communication (AAC) solution for iPad, iPhone and iPod touch for people who have difficulty speaking or cannot speak at all. The application bring naturally-sounding text-to-speech voices, close to 8000 up-to-date symbols, powerful automatic conjugations, a large default vocabulary, full expandability and extreme ease of use.

Special educators, speech language pathologists and occupational therapists have found Proloquo2Go a proven communication solution for children and adults who can access the iPad, iPhone or iPod touch. Educators see it as a cost-effective solution for special education. Augmentative and Alternative Communication specialists love the ease of programming and customization. Users love Proloquo2Go because it is not only powerful, but it runs on the iPhone, iPod touch and iPad. Parents appreciate the system because it is easy to program and makes their children cool.


 AssistiveWare Latest News 

Wordless Wednesday

Open Books Open Doors - Teaching Reading to Children with Down Syndrome is a new blog focussed on all aspects of developing literacy skills in children with Down syndrome, published by a Connecticut based project,  funded by grants from the Connecticut Down Syndrome Congress and the University of Saint Joseph in West Hartford, CT.

Current post titles will give you an indication of its coverage:

  Myths and realities 

  What about sight words? 

  There’s an app for that 

  Great resource for podcasts on reading! 

  Sue Buckley is my hero 

  Why we need universal literacy screening 

  Let’s raise the bar 

  The power of literacy

The content draws on research specific to children with Down syndrome and more generic research on emerging literacy. It is beautifully illustrated and well set-out, making it easy to navigate. 

A very apt new resource to appear during our National Year of Reading, worth adding to your regular reading list, and passing on to your child's teachers.

The Odyssey: conference

Family Advocacy is presenting the second Odessy conference in August:


The Odyssey ... celebrating achievements, progress and change, will again bring together local, national and international speakers who have information and stories to share about people with disability having a good life – whatever their age.


9 and 10 August 2012
Parramatta


Registrations now open


Speakers include:
Dr Michael Kendrick and Dr Patrick Schwartz
Conference webspage for all details, brochure and registration links

Richard Wilkins 25th Anniversary in TV ...

There are many pictures online today from last night's celebration of Richard Wilkins's 25th Anniversary in TV, hosted by Channel 9, and attended by many celebrities, Richard's family, and guests representing Down Syndrome NSW, which will benefit from the evening's fundraising, at Richard's very generous request. Here are links to just two of the many photos to appear so far:

• Rebecca Naso, Richard Wilkins and son Adam arrive at Richard Wilkins 25 Year Anniversary Fundraiser For Down Syndrome at Fox Studios on June 16, 2012 in Sydney

• Seal with some of the Down Syndrome NSW guests at the event.

There are bound to be more photos and news to come ...

• Video from Today Show this morning, look for the 'Star Charity Event' 17 June clip.

Weekend reading and viewing: 16 - 17 June

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

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

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

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

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

Putting a price on support needs in individualised funding: seminar

In Control Australia and National Disability Services 
invite you to a seminar with

John Waters, Director of Research and Evaluation, In Control UK

Putting a price on support needs in individualised funding: The UK Experience

Thursday 21 June
2.30 - 5.00 pm

Burwood RSL
96 Shaftsbury Road, Burwood


Registration is essential - click here for more information and link to register.

Website of the week: Australian Human Rights Commission - Disability Rights

The Australian Human Rights Commission is the new name of the Human Rights and Equal Opportunity Commission. The Commission was established in 1986 by an act of the Australian Parliament. It is an independent statutory organisation reporting  to the Australian Parliament through the Attorney-General. The Commission is charged with protecting and promoting the human rights of all people in Australia.


The Commission maintains a comprehensive website, with a section dedicated to the rights of people with disabilities, and the  Disability Rights blog. The Disability Discrimination Commissioner is Graeme Innes AM.


The Disability Rights office works on the straightforward premise (and Australian law) that ... people with disabilities have the same human rights as all members of the community.


Overview from the Disability Rights home page:

• The Australian Human Rights Commission leads the implementation of the Disability Discrimination Act 1992. This Act makes disability discrimination unlawful and aims to promote equal rights, opportunity and access for people with disabilities.
• The Commission also has major responsibilities under the international Convention on the Rights of Persons with Disabilities.
• Complaints about discrimination and breaches of human rights can be made to the Australian Human Rights Commission.
• The Commission also performs a wide range of functions to assist organisations and individuals to understand their rights and meet their legal responsibilities.
• We conduct public inquiries, negotiate disability guidelines and standards, support organisations to develop Disability Action Plans and run community education programs.

20 Stories, 20 years is a project announced recently on the Disability Rights blog:

Australia’s Disability Discrimination Act will have been in force for 20 years in March next year, and we’d like you to share in the celebrations.

To recognise how the lives of Australians with disability have changed during this period, we are compiling a series called “twenty years, twenty stories”.

These stories, which we plan to turn into short videos, will illustrate those changes, and show how the law has been used to achieve systemic change.

WE NEED YOU TO TELL US THOSE STORIES ... click here for details of how to contribute.

SBS2 9.30pm, TONIGHT: Movie - 'Me Too'

From the SBS 2 schedule for TONIGHT at 9.30 pm: 


Me, Too 


A touching Spanish drama that delves into the life of Daniel, a young man with Down Syndrome. Highly intelligent and largely independent, Daniel doesn't fit the usual stereotype. Outside of his loving family, however, he struggles to find the intimacy he craves. When he develops romantic feelings for a co-worker that are not reciprocated, his frustration builds as the world refuses to see past his condition. Nominated for the Grand Jury Prize at the 2010 Sundance Film Festival. Directed by Antonio Naharro and lvaro Pastor, and stars Pablo Pineda, Lola Dueas and Isabel Garca Lorca. (From Spain, in Spanish) (Drama)


A rare opportunity to see this film, which screened in the Sydney Film Festival in 2010 - there's a little more information in this post from two years ago.


Trailer:

2012 NSW Budget and citizens with disabilities

The NSW 2012-2013 State Budget was delivered yesterday. Allocations specifically directed to meeting the needs of people with disabilities appear to be consistent with the Stronger Together 2 (2012 - 2016) document released last year.

The Minister for Disability Services, Andrew Constance has released this statement about the budget and funding of disability services.

An outline of the NSW Council of Social Services (NCOSS) budget briefing delivered at a community Services forum today, can be viewed and/or downloaded here. Notations on disability-specific funding are on pp 21 - 25.

Every Australian Counts (campaign for a National Disability Insurance Scheme) commented today that the NSW budget has '... no new money allocated towards a launch site for the NDIS', and that '... the Productivity Commission said the the Federal government should fund the extra money required for the NDIS, BUT that states should contribute by cutting inefficient taxes. In effect the report argued that funding the NDIS should be a shared responsibility between the states and the Federal government. The Federal government will need to pay the lions share.'

Resourcing Families workshop: The Power of Roles

Resourcing Families is hosting a one day workshop for families, presented by international speaker, Darcy Elks

Wednesday 18^th July 

Hornsby

Making The Vision Reality: The Power of Roles

It is important to have a positive vision for the future of your family member and the meaningful life they can lead but there need to be some practical strategies towards making it happen. In this practical workshop, Darcy Elks will share how valued social roles can assist people with disability to have active, positive and contributing lives in their communities.

Click here for the event flier and registration details, from the Resourcing Families website

Call Resourcing Families to find out more or discuss if this workshop is relevant to you – 9869 7753 or 1800 774 764 (for callers outside Sydney).

My Perspective competition winner announced

In London, the winner of the 2012 My Perspective photographic competition has been announced as 12 year old Victoria Campos-Davis.  This local news report includes a photo of Victoria with her winning entry, Brighton Beach Huts.

Weekend reading and viewing: 9 -11th June

Read:

• Dear you ... a word to parents
• Sorting the wheat from the chaff ... the National Disability Insurance Scheme and Individual Budgets, by Christine Regan (NCOSS)
• Tim Harris serves up food and hugs ... a young man with Down syndrome runs his own restaurant
• High School Inclusion is Easier! ... some practices that make high school inclusion easier.
• Down Syndrome Education International (UK): Restructuring to better deliver new research and services ... CEO Frank Buckley explains recent changes, and the move from Portsmouth to Cumbria
• Throne of shame ... Dave Hingsburger on disability and pride

Watch:

• This is quite a short video, of interest here because of the last 30 seconds, in which Stuart, a very articulate young man with a gorgeous accent and Down syndrome tells Prince Charles about his contribution to the project.
• Peter Rosset, pianist
• The Cook, The Thieves, The Cake and The Mother ... a silent movie from a UK drama group, with just a tiny bit of overacting as you would expect from the genre!

Enjoy your long weekend ... your pictures are welcome (please send them to blogeditor@dsansw.org.au )

The Bunnies are shaved!

The excellent and fun Shave a Bunny fundraiser peaked last night with South Sydney Rabbitohs Matt King, Dave Tyrrell and Chris McQueen shedding their considerable locks on Channel 9's Footy Show ...

... raising more than $30,000 (and incalculable awareness) to support the work of Down Syndrome NSW !

Our very grateful thanks to Matt, Dave and Chris, the South Sydney Rabbitohs, Channel 9, and of course, every donor, for your generosity and ongoing support.

Beyond the Square: workshops for 8 - 15 year olds, Parramatta

From Accessible Arts:


Beyond the Square, Riverside Theatre's inclusive arts program and Circus Solarus, a local street theatre company, present this workshop for young people who identify as having a disability. Participants will use found objects and recycled materials to create their own instruments and then perform together with Circus Solarus

Tuesday 3 July:  8-12 years 10:00am-12:00pm; 13-15 years 1:00-3:00pm

Riverside Theatres, corner Church and Market Streets, Parramatta

For 8-15 year olds interested in craft and music

Contact: Alison Richardson (02) 8839 3359 or beyond_riverside@parracity.nsw.gov.au

Further information, contact details and links to enrolment forms for other Beyond the Square programs are available from the Riverside Theatre's website, on the Beyond the Square menu.

Preparing for school: a DS NSW workshop

For answers to these and many other questions, register for this free workshop with Judy or Lyn at the Down Syndrome NSW office by Monday 18th June

This workshop will be cancelled if minimum numbers are not registered.

Phone: 02 9841 4401

Fax: 02 9841 4444

Email: support@dsansw.org.au

www.dsansw.org.au

Get Ahead Speech Therapy

Our thanks to Get Ahead Speech Therapy for providing this information for our members.  It is also located under the Better Start Registered Providers list here, in the right hand column of this blog, for quick reference.

The team at Get Ahead Speech Therapy supports local families in the Hunter Valley, Lake Macquarie and Port Stephens areas. We are paediatric specialists providing functional communication therapy in one of our three clinics or at an outreach location of your choice.

We have a passion for working with children and can help with:

«  Expressive language

«  Receptive language

«  Speech sounds

«  Attention and behaviour

«  Social skills

«  Phonological awareness

«  Reading, spelling and writing

«  Autism Spectrum Disorders

«  AAC forms, including:

-       Key Word Sign

-       Picture Communication

-       High Technology devices (e.g. iPad)

-       Visual aids, such as reward charts or visual schedules

«  Developmental Disabilities

Our promises:

«  Family friendly services

«  Individual assessment and programs

«  Contact with allied health and school support networks

«  Bulk billing in clinic

«  Recognising commitment - 25% off your 10^th visit

«  Access to FaHCSIA funding

«  Access to Medicare Funding

  

Get in touch with one of understanding our Practice Managers today

1300 657 220

office@getaheadspeechtherapy.com.au  

Catalyst Dance Masterclass at Carriageworks

From Accessible Arts -  a wonderful dance opportunity at a fabulous Sydney venue:

The Accessible Arts Catalyst Dance Masterclass Series aims to provide skills development and training for dance practitioners, teachers, choreographers and dancers with and without disability currently working or interested in working in inclusive practices. 


Calling artists with and without disability - emerging and professional dancers, physical theatre performers, dance teachers, educators, choreographers and arts practitioners.


Participants will

• Experience professional development and training
• Explore strategies and methods for devising work
• Engage with Australia’s leading choreographers

The Catalyst objectives are in response to several key recommendations identified from the Dance Symposium held in 2011.

As the series is designed as a progressive skills development process participants are encouraged to attend all three workshops to gain the most benefit.

Masterclass I - Saturday 30 June and Sunday 1 July 
Masterclass II -  Saturday 8 and Sunday 9 September
Masterclass III - Sunday 4 November
Final Showing - Sunday 4 November


All at Carriageworks, Everleigh (Redfern)

More information, details of costs and registration are here, on the Accessible Arts website.

The Catalyst Dance Masterclass series is supported by Accessble Arts NSW, ANZ Trustees, Ausdance NSW, Carriageworks and the Ian Potter Foundation'

For and about carers

Carers sought for NDIS research focus group
Carers are being recruited for a focus group on the NDIS to be conducted at Carers NSW Sydney office, by researchers from Flinders University.  

The focus group is scheduled for 21st June, with registration required by 15th June.


Details are available from Carers NSW website. 




NSW Carers Award 2012 nominations
Opening of nominations for the NSW Carers Awards 2012 has been announced by NSW Ageing, Disability and Home Care (ADHC). 


Show your appreciation for carers, carer support groups or organisations that support carers by submitting a nomination now. Nominations can be made in the following categories:

• Individual Carer Award
• Carer Support Group Award
• Supporting Working Carers 
• Supporting Young Carers 

 Nominations must be submitted by 13th July 2012.


Further information and links to nomination forms.




To keep up to date with news, information and events for carers and about caring, visit the websites of NSW Ageing, Disabioity and Home Care, and Carers NSW.

Disability Discrimination: new information brochure

The Human Rights Commission has released a suite of new brochures in the  “Know Your Rights” series, one of them focused on disability discrimination. It aims  to assist people to understand their rights, identity situations where their rights are not being met and to know what actions they can take.


What is disability discrimination?

Disability discrimination is when a person with a disability is treated less favourably than a person without the disability in the same or similar circumstances.


For example, it would be ‘direct disability discrimination’ if a nightclub or restaurant refused a person entry because they are blind and have a guide dog.


It is also disability discrimination when there is a rule or policy that is the same for everyone but has an unfair effect on people with a particular disability.


This is called ‘indirect discrimination’.


For example, it may be indirect disability discrimination if the only way to enter a public building is by a set of stairs because people with disabilities who use wheelchairs would be unable to enter the building ...

You can read the brochure or download a copy from the Human Rights Commission website, here.

June 2012 events summary

A recap of events scheduled for June 2012:

School leavers expo - Chatswood


Shave a Bunny fundraiser


Down Syndrome NSW Mothers' Weekend


Dysphagia Workshops for professionals

Preparing for school: DS NSW workshop


Easy English course - Blacktown

Fest(of)All - for Young Carers


Risky Business: dementia conference


Networks, teams and circles of support seminar


Down Syndrome NSW Mothers' Weekend

Weekend reading 2-3 June ...

Some potentially contentious reading this week, some opinions and some information ...


Had enough of Holland?  A parent's blog post on whether 'Welcome to Holland' is what new parents really want and need to hear. 


Merits Of Sensory Processing Disorder Questioned - Disability Scoop report


People with disabilities have inherent value - from The West Australian

Finding The Words To Talk About Disability - from The Huffington Post, Amy Julia Becker on talking to young children about disability


The road to Proloquo2Go 2.0 and the AssistiveWare Newsletter, June 2012 - two new posts on Aileen Ryan's blog,  Key Word Signing and Proloquo2Go