Thursday, 21 August 2014

From NDSC: the latest newsletter, 2014 Convention recordings online, and 2015 Convention announcement

The (US) National Down Syndrome Congress publishes Down Syndrome News, and hosts a highly regarded annual convention. Here is the latest on both:

Down Syndrome News, Vol 27 #2, Summer 2014

  • Speech Intelligibility: Helping Children and Adults Develop and Maintain Understandable Speech (Part 2), by Libby Kumin, Ph.D., CCC-SLP, This article is available in both English and Spanish.  Part 1 is here.
  • Civil rights breakthrough for workers with Down syndrome! by Bob Lawhead
  • No Greatness without Goodness
Back issues of Down Syndrome News are archived online here.

Convention

Each year, thousands of people from across the globe attend the National Down Syndrome Congress Annual Convention. For most, it’s to hear the latest information from world-renowned experts. For others, it’s a great vacation. But, for nearly all, there’s the one-of-a-kind NDSC family reunion feeling that permeates the convention weekend. (NDSC)

42nd Annual Convention (2014)
Streamed recordings from selected session of NDSC 42nd Annual Convention; July 11–13, 2014, held in Indianapolis, IN are available for purchase here. The recordings can be purchased as single sessions, or as a complete set.

The National Down Syndrome Congress 2015 Convention will be held in Phoenix, AZ 
June 25-28, 2015 
Convention Registration will open March 2015

Wednesday, 20 August 2014

Riverside Theatres: 'relaxed' performance to accommodate children with special needs

This growing trend is much appreciated by parents and children:
From Riverside Theatres, Parramatta:
As part of Riverside's commitment to theatre for everyone, we're offering a special relaxed performance of Señor Rabbit as part of this year Spot On Children's Festival. The performance will be held for children with autism and other special needs. Although this performance will be available to all patrons, those will special needs will be invited to enter the performance space early, lights will be kept on throughout the performance, there will be less Spanish used during the performance, and patrons will be welcome to come and go as needed.

Children will also be able to meet the performers before the performance begins to ensure they are comfortable and relaxed during the show. 
The dedicated relaxed performance of Señor Rabbit is on  
Wednesday 1 October at 10:30am
  • Further details and booking links are here.
(Thanks to Beyond the Square for passing this on)

Latest additions to 'Events' pages


Down Syndrome NSW Events


Step Up! 2014 
For further details contact Ben Chinnock via email: ben.chinnock@dsansw.org.au
Sydney Sunday 19 October 
Wagga Wagga Sunday 26 October 
Hunter Region Sunday 23 November

Other events

Rising to the Challenge
The Australasian Society for Intellectual Disability (ASID) NSW/ACT and the Centre for Disability Studies (CDS) in collaboration with the National Disability Coordination Officer (NDCO) program for Sydney - joint conference. 
Thursday 18th September and Friday 19th September 2014 - Homebush


The Centre for Disability Studies - a collaborative two day workshop for support staff and people with disabilities. Support staff  are encouraged to invite a person with disability to join them to attend the workshop where together they will explore increased opportunities to socially connect with their local communities.
Thursday 2nd and Friday 3rd October 2014 - Lismore

Tuesday, 19 August 2014

A note to a school ...

If you have a little one with Down syndrome starting 'big' school next year, you are probably already in the thick of preparing both yourselves and the school for that big step.  These thoughts from the parent of a soon-to-be kindergartener will resonate, and might help you to articulate your own hopes in a succinct note to your school, in just a few short months:

Because Kindergarten Will Begin Soon
Pudge & Biggie, 4th August 2014
An open letter to my daughter's Kindergarten teacher...
... Please give her the washable dry erase markers I sent for her.  She will be a maniac with them and I don't have the funds to replace her Kindergarten wardrobe.  I can happily provide them for your class, if you'd like.  It will be cheaper for me in the long run.  Please don't leave her alone with any artistic medium that doesn't have "washable" as the first word in the description ... at least not if you are happy with the current state of your carpet ...

More funding for NSW community preschool children with disability

NSW Dept Education and Communities media release, 17th August 2014:
Children with disability will be given more support to attend community preschool under an overhaul of funding arrangements announced today by the NSW Government.

The new Preschool Disability Support Program will make $17 million available to community preschools in NSW — including an extra $2 million directly going to support young children each year.

Funding for children with the highest needs will increase by 30-70 per cent, assisting children who previously were not getting the level of support they need.

Minister for Education Adrian Piccoli said the Preschool Disability Support Program recognises the impact of disability on children, their families and community preschools.

"Attending preschool is an important developmental stage in the life of any young child and it is important to extend this experience to young children with disability," Mr Piccoli said.

Monday, 18 August 2014

Jobs and Disability: Insight, SBS TV One, Tuesday




On SBS One's Insight, on Tuesday 19th August at 8.30 pm, 'Jobs and Disability' ...
... This week Insight looks at whether more people with disabilities should be working - and whats standing in the way. 
The discussion comes as the Federal Government reviews the disability pension.
Social Services Minister Kevin Andrews says the current system gives pension recipients no incentive to work. 
"There are a lot of people who are disabled who have capacity, who have ability, and with the right sort of approach we could actually encourage them to be in the workforce," Andrews said. 
So what are the hurdles? Practicalities? Attitudes of employers? Or the attitudes of the job seekers themselves?

  • Insight is repeated on Wednesdays at 1.00 pm.


PWDA campaign against the BSWAT Payment Scheme Bill 2014

People with Disability Australia is campaigning to have the BSWAT Payment Scheme Bill rejected in the Senate:
People with Disability Australia, in partnership with national peak disability and advocacy organisations, invite you to endorse our Joint Statement to Senators to VOTE NO and reject the Business Services Wage Assessment Tool (BSWAT) Payment Scheme Bill 2014
The Federal and High Courts of Australia have determined that the BSWAT discriminates against people with intellectual disability. However, this Bill will not provide compensation or an effective remedy for people affected by the unlawful discrimination of the BSWAT. 
We need your help to protect and promote the rights of people with intellectual disability:

Click here to read the Joint StatementTo endorse the Joint Statement as an individual or organisation email Paul Cain paul.cain@ncid.org.au 
Click here to read Background Information on the BSWAT and the legal actions underway to ensure that people with intellectual disability receive fair wages for a fair days work. 
You can also use the Joint Statement and Background Information to tell your Senator why they should vote against the Bill. 
We expect the Bill to be voted on before the end of August so take action now!
Thank you for your support, 
People with Disability Australia

Click here for more information on the Wage Justice Campaign

Friday, 15 August 2014

Weekend reading and viewing: 16th - 17th August 2014


My: 24 Sarai / Harry
ABC iView, until 10th September 2014 (broadcast 10th August)
Harry and Sarai. Harry's baby sister Millie was diagnosed with Down syndrome after arriving prematurely and Sarai came face to face with the very real possibility of losing her home and everything in it.

My son has Down's syndrome and I wouldn't swap a thing about him'
Caroline White, Ouch! (BBC), 13th August 2014
I have been saddened by the recent coverage of baby Gammy, a child with Down's syndrome born to a Thai surrogate. It shocked me that we still attach a value to people's lives. We are talking about twin babies here. Twins, who shared a womb for nine months, share the same birthday and share the same genetic make-up. Yet the way they have been treated has been very different ...

Josie's Art
Josie is an emerging artist, from Sydney

Down syndrome: A diagnosis story
Melissa Pelletier, Connecticut Working Moms, 9th August 2014
Just a few weeks ago, my girl turned four. And every year her birthday comes around, my brain goes back to the day she broke free from the mothership, the day she was born. We’d been so excited to meet her and finally reveal her name to our friends and family. Little did we know, she had a little secret of her own: a 47th chromosome, a tiny little extra #21 ...

Prejudice challenged by joy
Dave Hingsburger, Rolling Around in My Head, 9th August 2014
... I wished for just a second that all those who set editorial policy for the language used to present disability in the media were there. I wished that they'd take off the blinkers of prejudice and actually see what was in front of them.

Like the guy with Down Syndrome who could compete in any dancing contest any where in the world. He lights up the dance floor, his natural grace and his natural sense of rhythm makes it impossible to watch any but him. It would be hard pressed to see him, meet him and then write about people who 'suffer from Down Syndrome' ...


The Right Foot (video: 2m 36s)
Dirty Feet, June 2014
The Right Foot offers contemporary dance workshops to young people with and without disability. Sydney’s DirtyFeet is passionate about providing free opportunities for young people to improve health and wellbeing, build confidence and connect with Sydney’s professional dance artists.

Gabrielle review: Beautiful drama seamlessly combines disability and music
Paul Bynes, Sydney Morning Herald, 11th June 2014
This Canadian film treads a fine line with its mix of intellectually challenged actors and more traditional performers, but it does so to beautiful effect.
French, with subtitles. This film has had limited cinema release, but has been released on DVD, and is currently an in-flight entertainment option on some QANTAS flights. Look out for it on DVD, in local cinemas or on TV - and please let us know if you see it scheduled.

Dr. Lauren Lindstrom explores the inexorable link between disability and poverty
Sage Connections, 5th August 2014
... Researchers found that high parental expectations, work experiences, career-technical education, and postsecondary education were all strategies that expand employment opportunities and may serve as pathways out of poverty ...

Down Syndrome Australia media links
Down Syndrome Australia has posted links to media about the TV series The Dreamhouse, and about Baby Gammy and the Down Syndrome Australia community here.

ASID Conference - grants to attend

The Australasian Society for Intellectual Disability (ASID) has announced that there are a limited number of grants of up to $1000 each to support people with intellectual disability and their carers to attend the 2014 ASID Conference in Freemantle, Western Australia from 5-7 November.

The grants can be used for the concessional rate registration, for travel or towards accommodation whilst in WA.

Click here for more information and how to apply

ASID Student Travel Bursary, Student Research Awards and Student Scholarships  are available to Attend "All Aboard" - click here for more information

Thursday, 14 August 2014

Down Syndrome and Alzheimer's Disease: What Caregivers Should Know: online video

Video of an information meeting at the Adult Down Syndrome Clinic, in Chicago, recorded May 27, 2014
Down Syndrome and Alzheimer Disease: What Caregivers Should Know 
Presented by Brian Chicoine, MD (Clinic Director) and Daniel Kuhn, LCSW, (Community Educator, Rainbow Hospice)

Topics covered
  • Symptoms, diagnosis, treatment and prognosis
  • Ways to support someone with DS and Alzheimer Disease
  • Ways to cope
  • Questions and answers from the audience
  • 1 hr 42m 30s
The video employs a split screen to display both the speakers and their presentation slides.

The Adult Down Syndrome Clinic staff have asked, via their Facebook page, that we all ... 
... please share this with families, staff, and anyone else who knows, loves, cares for, and/or serves a person with Down syndrome and Alzheimer disease ...
and they have commented that ...
... it does require a time commitment to watch the whole video (1 hour and 40 minutes). However, following the recommendations on approaching a person with DS and AD (particularly in the second half of the video) will likely have a much greater time benefit and numerous other benefits for the audience ... The challenge of Alzheimer disease is substantial. We have walked (and we continue to walk) with many families through this journey. We are thrilled to be able to share this with the families we serve but also to a wider audience.
To investigate Down Syndrome NSW resources on Alzheimer's disease and Down syndrome by visiting the Members' Library Catalogue here.  

New resources

What to do when you worry too much 
- a kid's guide to overcoming anxiety
Dawn Huebner, Magination Press, 2005
An interactive self-help book designed to guide 6?12 year olds and their parents through the techniques most often used in the treatment of generalized anxiety. Metaphors and humorous illustrations make difficult concepts easy to understand, while prompts to draw and write help children to master new skills related to reducing anxiety. Engaging, encouraging, and easy to follow, this book educates, motivates, and empowers children to work towards change. Includes a note to parents by psychologist and author Dawn Huebner, Ph.D. (Goodreads)
Members' library
The Down Syndrome NSW library catalogue is available to view here.  



Toothbrushing App: Grinners are Winners
This cute new app is a fun way to encourage tooth brushing. When played on an iPad it also gives the midline a good workout.


See and Learn Saying More Words - App Editions
See and Learn Saying More Words apps are designed to help children with Down syndrome to develop clear speech. They may also be helpful for other children with similar speech difficulties.

See and Learn Saying More Words apps are available or under development for the following platforms:

Wednesday, 13 August 2014

Step Up! 2014 - Hunter flyer


Kitchen Masters - Chatswood


Kitchen Masters – Cooking with a Disability is a Program designed to give people with a mild intellectual disability and low support needs, an opportunity to learn new skills in cooking and preparing food and to learn about shopping for food supplies.

This course is specifically aimed at giving participants, who are transitioning to independent living from a home based situation, additional cooking skills. Participants need to have reasonable communication skills.

Participants will learn about the importance of eating healthy foods and of handling food safely. The classes are also about having some fun and getting to know other people. Participants will be making a hot meal. They will be learning how to use sharp knives (if appropriate), graters and other cooking tools and utensils. The class will involve using kitchen utilities such as a hot stove and hot water for washing up.

Tuesday, 12 August 2014

Comment on immigration law

Catherine McAlpine, CEO of Down Syndrome Australia was interviewed for this news.com article highlighting that the 2010 inquiry into immigration practices affecting people with disabilities and their families (Enabling Australia: Inquiry into the Migration Treatment of Disability) has resulted in no change in Australian Immigration law.

Baby Gammy isn’t the only one: The ugly law shaming Australia
News.com, 12th August 2014
It's the law you never knew we had. Or, if you remember the embarrassing case of Dr Bernhard Moeller, it’s the law you thought we’d gotten rid of.

(The usual caution about reading the comments applies.)

On obstructive sleep apnea in children with Down syndrome, from Boston

The good people at the Down Syndrome Program at Massachusetts General Hospital for Children recently have issued information for families about Obstructive Sleep Apnea, a common, and significant health problem for children and adults with Down syndrome. The information sheets are freely available online - we appreciate their generosity in sharing their resources so readily:
Have you been told that your child may have obstructive sleep apnea (OSA)?
OSA is a medical condition that causes breathing trouble during sleep. Check out our handouts below to learn more about OSA and how to test for it.

  • A long list of the Program's other handouts for families is also available from this page.

Monday, 11 August 2014

Step Up! 2014 - regional NSW dates




Sydney  Sunday 19 October 2014
Wagga Wagga  Sunday 26 October 2014
Hunter Region  Sunday 23 November 2014

Further details contact Ben Chinnock at Down Syndrome NSW via email:
ben.chinnock@dsansw.org.au

If you would like to hold a Step Up! event in your area, 
please let us know as we would love to support you.

NSW Carers Strategy 2014 - 2019 launched

The NSW Minister for Ageing and Disability Services, the Hon John Ajaka MLC, launched the NSW Carers Strategy 2014 - 2019 last week.

It is an important document for the 857,000 men, women and young people who are carers in NSW. Carers are the family members and friends who provide ongoing care and support to people who need it because of disability, chronic illness, mental illness, dementia or frail age.

The NSW Carers Strategy is a five year plan to improve the position of carers in NSW. It is expected that the Strategy will help carers to participate in activities outside their caring role, including education and employment, and to have input into the development of policies that affect them.
It was developed collaboratively and will be implemented collaboratively with carers, government, non-government, private and academic sectors to ensure we achieve better outcomes for carers.
The Strategy sets out at a glance the vision for carers and the planned reforms and outcomes for each of the five focus areas: employment and education; carer health and wellbeing; information and community awareness; carer engagement; and the evidence base about carers. It identifies the 16 projects that are the first to progress the work.

Carers deserve to be valued and the NSW Carers Strategy is a positive step towards achieving this.

The NSW Carers Strategy is available at www.carers.nsw.gov.au. You can also download the ‘Have Your Say’ online consultation report and background information that informed the development of the Strategy.

For more information contact Carers, Ageing and Disability Inclusion on 9248 0870 or email carerstrategy@facs.nsw.gov.au

Friday, 8 August 2014

Weekend reading: 9th - 10th August 2014


Living with intellectual disability in The Dreamhouse
Jan Gothard, The Conversation, 7th August 2014
... The series sets out to record a rite of passage: moving out of home. On board is a volunteer support crew who is working with the housemates and a “disability specialist” to develop the domestic, social and personal attributes necessary for success. Everyone is a winner; everyone can share the prize.
Yet the project aroused some disquiet within the disability support community when it was first mooted ...
I Couldn’t Find a ‘Back to School’ Ad That Included Kids With Disabilities… So I Made My Own
Katie Driscoll, The Mighty, 7th August 2014
... I scrolled through the beautiful imagery and you know what? I didn’t see anyone that resembled my daughter. Not one model in close to 50 ads included one child with a disability. Not one ...

  • Read about Julius Panetta's modelling carer here and here

David Perry, CNN Opinion, 6th August 2014
... It's hard to build a more inclusive society when people keep making fun of you. Even as people with disabilities and their allies make progress in so many ways, disability remains a target for mockery ...

Children with Down syndrome can bring great joy
Karen Hardy, Canberra Times, 6th August 2014
Ruth Faragher is your typical 18-year-old. She likes hanging out in Civic, going shopping with her friends and spending afternoons at Big Splash in Jamieson in the summer.

She’s thinking about studying to become a childcare worker once she’s finished school at Merici College, keen to make her own way in the world.

Ruth has Down Syndrome, one of the estimated 260 people in Canberra who do ...


Democracy, adults and children
Shamptons, 5th August 2014
... There are things happening in the world that disturb me greatly ... 'big picture' happenings where I can see how children's lives are disrupted, disturbed and sometimes destroyed by the conflict between adults. Gammy provides a peephole on to some of the same issues as they play out in the life of just a few individuals. His story resonates with me for many reasons ... one of my twins is male, the other female. One of my twins has Down syndrome, the other is 'typical'. My twin with Down syndrome was born with a congenital heart defect that required major heart surgery when she was just two months old. There the resemblence ends. I never dreamed of separating my twins ...

My Daughter With Down Syndrome Has Changed Me
our three little birds, 30th July 2014
When Ellie was born I knew my life was forever changed. I felt it, not in my heart but in the pit of my stomach. It was a fear that I would not be the same person from that day forward ...

You know it’s really love when… 
Laura Shumaker, 5th August 2014
... “You are so smart, Matthew,” I said, “You are funny and nice, and fun to be with. Girls like that.”

“I know,” he said, his brown eyes shining,” and if I was boyfriend and girlfriend with someone, I would want it to be like Dave who works with me at Camphill. Dave and his girlfriend get along really well and cook dinners together, and go to cool places and are so happy. But do you want to know the best thing of all? You have to guess.” ...

Online publications:
PWD eBulletin July 2014 (People with Disability Australia)
Link Disability Magazine, Vol 23, Issue 3, August 2013

Entertainment Membership and/or Book - support Down Syndrome NSW




Choose from the traditional Entertainment™ Book or the NEW Entertainment™ Digital Membershipwhich puts the value of the Book into your smartphone. 
Plus, 20% of your Membership purchase goes towards our fundraising – so please forward this email, or tell your family and friends, as the more Memberships we sell, the more funds we'll raise! 


PURCHASE NOW

Thank you for your support.

Contact:

Michelle Bamber, at Down Syndrome NSW

admin@dsansw.org.au or 02 9841 4411





Thursday, 7 August 2014

Proposal for online cooking support project

Look, Cook, Eat is running a Kickstarter campaign, until 29th August. It is planned for US delivery only, but the concept might well take off elsewhere, too. Worth a look if you are into planning for a more independent life for someone with Down syndrome or other intellectual disability. One to keep an eye on:
Look, Cook, and Eat is a digital how-to cooking magazine designed for those with intellectual disabilities, to help promote an independent lifestyle. 
Subscribers to LCE will pay a yearly subscription fee (much like some newspapers; likely in the $20 to $25 range). With their subscription they'll receive menus each month that can be viewed on their iPad, tablet, or PC. Each menu (which could be breakfast, lunch, or dinner) will be divided into three components and each component will be broken down into what to buy, tools to use, and three short videos (each less than a minute long). 
The material will be presented largely as images and videos--there will be very few words (in the event that reading is difficult). There will be audio voice overs of ingredients and tools to help identify items, and the videos will be able to be easily stopped and started for those who want to cook following the video.

Online Inclusion: disability hub (Australian)

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




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

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

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

Join Oi all over social media, including at:

Wednesday, 6 August 2014

DS Australia queries reality TV series

Down Syndrome Australia has issued a statement about the ABC TV series 'The Dreamhouse', that debuts tomorrow night (Thursday 7th August):

The Dreamhouse; will it make a difference in real life?

Down Syndrome Australia (DSA) welcomes the focus on the daily lives of people with Down syndrome and the opportunity to discuss the issue of the significant unmet need for housing and support in the community for people with intellectual disability that ‘The Dreamhouse’, produced by Artemis International and broadcast nationally on ABC TV, provides.

Down Syndrome Australia acknowledges the good intentions of the The Dreamhouse, but regretfully finds the premise of the program quite discouraging. The ‘dream’ setting obscures the fact that the young people are living in a group home, a living arrangement we regard as outdated and paternalistic.

Disability Support Pension review - an analysis

Please note that the figures given in this article refer to the review of eligibility of some people receiving the Disability Support Pension proposed in the 2014-2015 Federal budget, not the interim report of the reference group reviewing welfare on behalf of the government. It is an analysis of when current DSP recipients are reviewed, and the outcome of those reviews under current provisions, conducted by ABC News:

Fact Check: Is the disability support pension a 'set and forget' payment?
ABC News (online), 5th August 2014
ABC Fact Check takes a look whether people are put on the disability pension and forgotten, irrespective of their long-term ability to work.
  • The claim: (Social Services Minister) Kevin Andrews says the disability support pension is a 'set and forget' payment.
  • The verdict: For some recipients, the disability pension could be a 'set and forget' payment, but there is also evidence to suggest some people are not reviewed because they have a long-term disability and cannot work. There's more to the story.

Tuesday, 5 August 2014

People with Down syndrome in the media

Disability self-advocates optimistic about NDIS
RN Breakfast (ABC), 4th August 2014 (9m 18s audio file)
Strengthening Disability Advocacy', a conference aimed at providing self-advocacy skills to those with intellectual disabilities, gets underway today in Melbourne and three people heading to the conference join us this morning.

The National Disability Insurance Scheme is being rolled out and the government has foreshadowed tightening eligibility to the disability pension, the Disability Discrimination Commissioner has had his position axed and disability advocacy groups enter their final year of contracted funding.

What can't be taken away is the new voice people with disability have in the public space -- a demand for the right to be heard.


Interview with: Diana Khouri, Tara Elliffe, Tom Maxwell - disability self-advocates, on their way to the Strengthening Disability Advocacy Conference 4 - 5th August

Marta and Mauro: story of a Down’s syndrome wedding
Ilaria Lonigro, West, 22nd July 2014
His daughter’s wedding was the first marriage in Italy between two members of the Italian Down’s Syndrome Association (AIPD). Luigi is the father of 30-year-old Marta, who tied the knot on 6 July with her fiancée Mauro, who is 40. Both have Down’s syndrome, and are now on their honeymoon in southern Italy until September ...  "I relived all her little great achievements. It was the sweetest feeling.”

Bosphorus no challenge for man with Down’s Syndrome
Mesuder Ersan, The Daily News (Turkey), 30th July 2014
Swimming 5.5 kilometers from Europe to Asia is now business-as-usual for Caner Ekin, a 32-year-old with Down’s Syndrome, who has managed to cross the Bosphorus for the fourth time in a rare tour de force of a human’s willpower ...

Women With Down Syndrome Respond to God’s Call
Kathy Schiffer, Seasons of Grace, 26th July 2014
... the Little Sisters Disciples of the Lamb, a contemplative order in France ... opens its doors to women who feel a call to religious life, but who may be turned away from other orders because they have Down syndrome ...

Chicago-area teen with Down syndrome sharpens his focus with photography
Elizabeth Diffin, Chicago Parent, 23rd July 2014
... Miles ... has gone through a number of photography “phases” over the years, including store signs, feet, and—like any teenager—selfies. But Miles’ ability to see beauty in even mundane things, like a box of watermelons at Trader Joe’s, is where Miles really excels ...

Living life to the fullest with Down syndrome
Karyn Odway, Advocate Health Care eNews, 14th July 2014
Anthony Coppola’s family describes him as an exercise enthusiast. A man with Down syndrome, this 26-year-old runs and bikes daily and moves to the music in a weekly Zumba class. If that isn’t enough, he watches his caloric intake and makes healthy food choices – grabbing for fruits and vegetables instead of chips, bread and sweet treats – each and every day.

Anthony’s life today looks much different than it did seven years ago when he weighed an additional 70 pounds.



Inspirational restaurateur Tim Harris to get reality show
Regina Ruiz, KOAT7 (ABC), 14th July 2014
The show, "Everybody Loves Tim," will explore the life of Harris who achieved his dream of opening a restaurant in the Duke City. Tim's Place is known for its signature friendly service, which often includes free hugs from the owner himself ...

The parish councillor with Down's syndrome
BBC News Magazine, 8 July 2014
Stephen Green, 49, is one of just a handful of parish councillors with a learning disability in the United Kingdom. Elected onto Nuthall Parish Council in Nottinghamshire last year, Green has Down's syndrome and his dad, Grenville Green, assists him to be an active member of the community ...

Popcorn Company Gives Boy With Down Syndrome Valuable Life Experience
Matt Vaughan, KoloTV, 9th July 2014
Popcorn is not only tasty, but it's easy to make. That's why Dave and Diana Rovetti thought it would be the perfect business model for their son Jack, and decided to open a Doc Popcorn franchise. The 15 year-old Reno High sophomore has down syndrome, but he doesn't let that get in the way of the things he wants to do. He stays actively involved in school while juggling the responsibilities that come with his new job.

"I make a little money, and I do my popcorn. I'm really busy right now," he says.

Monday, 4 August 2014

Responses to the story of baby Gammy

There have been many media reports and discussions around Australia and internationally over the last few days. The story of what actually happened is still emerging, but aspects are clear-cut (Gammy, who has Down syndrome, a heart condition and a twin, was left in Thailand). These are just some of the more considered responses we have read (see this post from Friday, too):

We're the family they didn't want to be
Catia Malaquias, Australian Women's Weekly, 4th August 2014
... Gammy's story stirred up so many emotions in me that I found it hard to think about much else throughout the day. The situation is now unclear as the alleged parents have claimed they didn't know about Gammy while the surrogate mother says that they did. But if the story of Gammy's abandonment is true, including reports that it is only one of many such tragedies, it is shocking to think that in some ways we are the type of family that those parents didn’t want to be ...

Because not doing it is harder
Leticia Keighley, Embracing Wade, 1st August 2014
... How is it that difference and disability is so feared and so misunderstood that getting on a plane and flying away, leaving your own child with a woman who cannot care for him to the extent that he may well die….is actually the preferred option? ...

Which is the harder choice after a prenatal diagnosis: continuing or terminating?
Mark Leach, Down Syndrome Prenatal Testing, 1st August 2014
... I took as a given that most people would view terminating a pregnancy following a prenatal diagnosis of Down syndrome as still a hard choice, but not as hard as raising a child with Down syndrome. No doubt, that is the analysis done by parents who do choose to terminate. But, I think Keighley makes a very good point: that choosing to not be there for your child is actually the harder choice ...

Latest additions to 'Events' pages

Down Syndrome NSW events

Easy English Workshop
Down Syndrome NSW workshop with Catherine Basterfield, Access Easy English
Tuesday 12th August 2014 - Parramatta

DS NSW Trivia Night 2014
30th August 2014 - Five Dock
 (note change of date)

Other 2014 events

PWDA Royal Commission Disability Support Project: Forum 
Commissioner Robert Fitzgerald will provide an overview of the Royal Commission into Institutional Responses to Child Sexual Abuse and answer questions. This forum will explain the processes and work of the Royal Commission to people with disability, their families, friends, supporters, and organisations. It will explore the various ways that children and adults with disability can participate in the Royal Commission, especially through telling their own story of sexual abuse in an institutional setting 
Date: Monday 11 August 2014Time: 11.00am-12.30pm
Location: York Conference and Function Centre (Bowlers Club), Bass Suites,
Level 2, 99 York Street, Sydney NSW 2000 
RSVP: by Friday 8 August email to stakeholders@childabuseroyalcommission.gov.au
Please indicate if you have any participation or access needs, such as an interpreter. 
For more information, please contact Davina Dressler by calling (02) 8282 3885, or on email stakeholders@childabuseroyalcommission.gov.au
 Source: PWDA E-Bulletin, # 92, July 2014

Tabiss - Sibworks Workshop
6 week program for 8-12 year olds who have a sibling with an intellectual disability. Enquiries: tabiss@interactionservices.org
Starts 3 September 2014 - Castle Hill

Nepean Disability Expo
Brings together consumers, service providers and businesses and aims to enhance the lives of people with a disability. 
12th -13th September 2014 - Penrith
2014 Belonging Matters conference - for people interested in authentic service transformation
11th - 12th September 2014 - Melbourne

The Right Foot dance workshops 
Presented by DirtyFeet in partnership with Bankstown Arts Centre. FREE contemporary dance workshops for young people aged 14-26 with and without disability. Bookings essential.
Saturday 13 and Sunday 14 September 2014
Saturday 20 and Sunday 21 September 2014

Bankstown 

2014 SPARK Festival
For people with a disability to find their voice through the creative outlets of music, dance, art and performance.
21 - 24 October 2014 - Stanwell Tops (NSW)

Friday, 1 August 2014

The heartbreak of low expectations

Down Syndrome Australia (DSA) was greatly saddened to read the story of baby Gammy in today’s Fairfax media: Australian couple leaves Down syndrome baby with Thai surrogate.

“Our primary concern is for the wellbeing of this little boy and his family. In Australia we are fortunate that the additional health conditions often associated with Down syndrome are routinely managed through our healthcare system – something which is clearly not accessible from a village in Thailand,” said Down Syndrome Australia CEO Catherine McAlpine.

“We very much hope that the pro-bono reach of Australian hospitals and their partner charitable organisations will be available to assist in this heartbreaking situation. We are currently examining ways we can work with them to do so.

“In Australia life outcomes have never been better for people with Down syndrome and their families. Advcances in health care, early intervention and education have made a tremendous difference to the lives of people with Down syndrome.

“There remain however many barriers to ensuring people with Down syndrome have the opportunity to reach their full potential. Low expectations and lack of understanding mean that Australian children with Down syndrome still have trouble accessing mainstream education and adults with Down syndrome struggle to obtain jobs.

“For many people with Down syndrome the biggest challenge they face is the stereotyping and discrimination that follow from these negative attitudes and low expectations.

“Everyone in the Down syndrome community is heartbroken to see those attitudes played out with such devastating consequences for baby Gammy and his family.

“We will look at ways we can partner with other organisations to help this little boy and his family.

“It is a sad reminder to us of just how far we have to go to in changing attitudes to ensure people with Down syndrome can enjoy the same rights and opportunities as everyone else in the community. We have made great progress in recent times but there is still so much to do.”

Down Syndrome NSW response to media reports (1st August, 2014:
Executive Director of Down Syndrome NSW, Tracylee Arestides, has formulated the following brief response to media reports regarding baby Gammy. 
DS NSW is greatly saddened that baby Gammy's biological parents may have made the decision to abandon him based on the fact he has Down syndrome. 
We are looking at ways to help Gammy access the necessary health care he needs. 
We would also encourage people to support Gammy's Thai birth mother Pattharamon Janbuaand and her family who are caring for Gammy and bringing him up. 
We have had advice from Thailand that the GoFundraise campaign to support Gammy's surgery and his family is legitimate, however we are not in a position to make the decision for people to support Gammy in this way. We encourage our members to make their own enquiries and decisions.

Weekend reading and viewing: 2nd - 3rd August 2014





VATTA (Canadian Down Syndrome Society), 28th July 2014. 
Have you ever wondered what prenatal testing means to people with Down syndrome? A group of nine adults with Down syndrome want to share their overlooked perspective on this topic, in the film What Prenatal Testing Means To Me, available to watch on the Canadian Down Syndrome Society’s website. 
The film stars VATTA (Voices At The Table Advocacy), the Canadian Down Syndrome Society’s self-advocate-led steering committee. These remarkable adults, ranging in ages 22 to 43, reflect on their hopes and fears for the future of Down syndrome in Canada and around the world. 
Prenatal testing is a complex and controversial subject. VATTA’s view is simple: If people have fair and balanced information about Down syndrome, and take the time to know and learn more about people with Down syndrome, they will be able to make a better choice for themselves and their families. VATTA wants everyone to “See the Ability” and not believe misconceptions or fears about Down syndrome. 
The film was originally presented as a session at the 2014 Canadian Down Syndrome Conference in response to a growing number of concerns by parents and expectant parents regarding prenatal testing. 
VATTA’s mission is to help all Canadians “See the ability.” VATTA helps self-advocates use their voice and stand up for what they believe in. VATTA has been part of the Canadian Down Syndrome Society since 2005.

Gillian Marchenko, 8th July 2014
... Polly’s good moments resoundingly beat out her bad. Oh, of course she is human; mean and selfish and sneaky. “Polly, are your toys cleaned up?” “Yes,” she lies, happily running on to her next activity. But also, there’s this: she is a bell that rings daily. She was made to exude sunshine. She does her job well ...

What is the risk of not having a great life?
Stay Up Late, 29th July 2014
... These sessions were all built around talking about those impossible blocks that simply can’t be removed and get in the way of people leading the lives they really want, and how we can remove them. Here’s the run down of those top 10 blocks ...

Seeing the Child, Not the Disability
Dennis Rosen, New York Times (blogs), 24th July 2014
..."I like the people in health care. People in health care, they don’t stare at my son like he’s some kind of freak, you know? They see him for who he is.” ...

Easy English workshop - Parramatta, 12th August

One day workshop with Cathy Basterfield - limited places available.

Image: pixabay.com
Developed in Australia, and now used worldwide, Easy English is a style of writing and presentation designed to provide understandable, concise information for people who do not have functional literacy.

Easy English training is recommended for anyone wishing to improve their communication with people who have 
  • an intellectual or cognitive disability 
  • a learning disability
  • an acquired disability, such as stroke, brain injury or 
  • degenerative condition
  • poor educational outcomes
Cathy Basterfield, of Access Easy English, is an internationally renowned Easy English developer, practitioner and trainer. She is a trained Speech Pathologist with over 25 years experience working with people with Complex Communication Needs. 

Tuesday 12 August, 2014
ICE (Information & Cultural Exchange)
8 Victoria Road Parramatta
$220 per person (GST incl)

This training is hosted by Down Syndrome NSW - for further information or to book a place, please contact Michelle Bamber on 02 9841 4444 or admin@dsansw.org.au

Access to information. Everyone’s human right.

Transition to School - online resource

Fittingly during NSW Education Week, the Minister for Disability Services, John Ajaka has launched the Transition to School online resource, designed to help children with disabilities make a smoother transition to school.


And this is a good opportunity for a reminder about this Down Syndrome NSW event:

Preparing for School
Down Syndrome NSW workshop for parents of children starting school in 2015/2016
Wednesday 13th August 2014 - Rosehill

Thursday, 31 July 2014

Rethinking College: online documentary, resources

Rethinking College is a 25 minute film produced by Think College that explores the growing movement to include students with intellectual disabilities in higher education. It is available for viewing online.
Through the perspectives of parents, educators, advocates, policy leaders, and most importantly, students, this film illustrates how colleges and universities can provide a setting for all students to grow, learn and build toward better futures ...


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

Dreamhouse documentary starts next Thursday


Three young adults with intellectual disabilities fly the nest and move into a new home for 10 weeks. If it works out, they can stay on and call The Dreamhouse home.
ABC TV 1 Thursday 7th August 2014,  9:30pm - trailer

Wednesday, 30 July 2014

Take part in the biggest conversation happening about intellectual disability and the NDIS this year!




Online group for grandparents

 Grandparents with Grandkids with Down Syndrome (GWGWDS) is a closed Facebook group:
We are an independent group of grandparents with grandchildren with Down Syndrome. We are not attached to any organization, agency, or entity. We answer to no one except ourselves. We exist to provide support, information, and education to those who want it. There are no commercial solicitations, no medical advice given, and never any derogatory comments. We welcome all grandparents worldwide with grandchildren with down syndrome without regard to race, creed, religion, or national origin.
Characteristics of a closed group are defined here.

Tuesday, 29 July 2014

Good health: mental health resources for people with complex communication needs

The Bridging Project aims to build bridges between specialist and community providers of mental health services in relation to people with complex communication needs. 
A person with complex communication needs cannot use speech to communicate so that others can understand them. Some people with complex communication needs may also have a mental illness. 
A person with a complex communication need may notice changes in the way they think, feel and behave. This can make it hard to cope with everyday things. It can be difficult finding the right kind of help. It can be even more difficult to find the right help when a person does not use speech to communicate. 

Imagine: Challenge 2014 Art Competition

Note that this art competition is open to people from all over NSW who are accessing a disability service:


The fine print says:
Entries are open to all persons with a disability attending 
a disability service in NSW.
For entry forms or for further information please contact 
Challenge Marketing on 02 6763 1806 
To download an entry, visit www.challengecommunity.org.au

Entries close on Monday 13th October 2014

Monday, 28 July 2014

Inverell's Scrappers in the news

Great story and a terrific photo with Emi Campbell and the Inverell Scrapheap Adventure team in the Inverell Times:

Taking up the scrapheap challenge
Michèle Jedlicka, Inverell Times, 25th July 2014
... Inverell riders have participated in the (Scrapheap) Challenge since 2011. Col, Mick O’Brien and Phil Kimber were the first three to take the trip, and since then, the riding ranks have swelled to 14, and more are welcome to join the effort.

Local pharmacist Brendon Campbell is riding for the first year in support of the program. His daughter Emi has Down Syndrome, and Brendon has just achieved his P plates and bought a motorbike to join the local Scrapheapers.

He’s been giving Emi rides around the paddock on his bike, and Emi said had fun on the bike with her dad.

“It’s a really good ride,” she said.

“She hangs on with her thumb on the horn if I go too fast,” Brendon laughed. “I don’t know what our neighbours think!” ...
read the full story and see the Inverell Times fabulous photo here.

Share your thoughts on the current welfare review with the National Welfare Rights Network

The Government has announced that they are reviewing the social security system. In the 2014 Budget, some significant changes were proposed for people receiving the Disability Support Pension which could affect people under 35. 
The National Welfare Rights Network (NWRN) wants to talk to people who may be affected by these changes. To have your say about the proposed changes - please participate in the research being conducted ... read more about the project and how you can participate here.

Friday, 25 July 2014

Weekend reading and viewing: 26th - 27th July 2014


July Workshop Rehearsal Shots - Katrina Folkwell Does it Again!
An album of Katrina Folkwell's photos taken during a weekend integrated dance workshop on the far North Coast of NSW.



Voices at the Table (VATTA), Canadian Down Syndrome Society, 12th June 2014
Trailer for "What Prenatal Testing Means To Me".

About the film: Prenatal testing is gaining more prevalence in the news and society. With new and emerging tests, many people are failing to ask - what does this mean to people with Down syndrome?

VATTA, the Canadian Down Syndrome Society's self-advocate-led steering committee, will explore this topic from their unique and often overlooked perspective. Learn more about prenatal testing. Find out what their hopes and fears are for the future of Down syndrome in Canada and around the world. Join the conversation where people with Down syndrome reflect on their own value and contributions in their own community.

Who better to tell us? The finished film will be released next week - it will be available at www.cdss.ca and on VATTA's website.

Working towards arts accessibility
Ben Nielsen, Limelight, 17th July 2014
Australians with a disability are sometimes forgotten but a handful of organisations are championing the cause of arts accessibility ...

IBM Appoints Chief Accessibility Officer
Darryl K Taft, eWeek, 22nd July 2014
IBM has created a new position, Chief Accessibility Officer (CAO), aimed at redefining accessibility for users and ensuring that all users can have access to technology. Big Blue appointed Frances West as the company's first Chief Accessibility Officer. In this new role, West will guide IBM accessibility policies and practices. Additionally, she will lead IBM's collaboration with business, government and academia to advance accessibility standards and policy ... For more than 100 years, IBM has advanced technology access for people of all abilities. Some of its earliest innovations include the first Braille printer, a talking typewriter and the first commercially viable screen reader.

Disability Is Not Just a Metaphor
Christopher Shinn, The Atlantic, 23rd July 2014
The entertainment industry loves disabled characters—but not disabled actors ...

Accessible Arts (NSW) Newsletter, July 2014