Weekend reading and viewing: 30th - 31st August 2014

The Truth About Down Syndrome

Jamie Edgin and Fabian Fernandez, New York Times, 28th August 2014

... Mr. Dawkins’s argument is flawed. Not because his moral reasoning is wrong, necessarily (that is a question for another day), but because his understanding of the facts is mistaken. Recent research indicates that individuals with Down syndrome can experience more happiness and potential for success than Mr. Dawkins seems to appreciate ...

An Awesome Life Lesson From My Son With Down Syndrome: Friends and New Beginnings

John Simmons, Huffington Post (The Blog), 26th August 2014

... Perhaps I would have no more anxieties with new beginnings than my son experiences, if I looked at them in the same light that he does. If I loved people like Jack does; if I valued friendship more than anything else someone could give me; if my ventures were solidly based on people and relationships rather than things; new beginnings, for me, would be different ...

Down Syndrome and Parenting: The Cold Current of Doubt

Jisun Lee, Kimchi Latkes, 22nd August 2014

It is hard sometimes when it feels like the world is telling you that your kid is more wrong than right, not to let some of it seep in. 

If you only know one thing about Down syndrome, know this 

Sipping Lemonade, 21st Auust 2014

“You know, Kate and me love rolling around on the ground in circles together. Kate is really good at rolling. And you know how my other sisters are scared to hide under the blankets and play tent? Well, Kate is never scared to hide under the blankets.” I smiled at the sweet things 5-year-olds value about their sisters.

Then he said, “Down syndrome makes her really good at some things” ...

New Concordia University program aims to help those with cognitive disabilities

Robert Gebelhoff, Milwaukee Wisconsin Sentinel Journal, 21st August 2014
Eight students with cognitive disabilities had the chance Thursday afternoon to do something few of their peers get to do: move into a college dorm.

That's because Concordia University Wisconsin, in partnership with Bethesda College of Applied Learning, will be housing the students through a new program aimed at developing independent living among adults with intellectual disabilities ...

Three-year-old Alice to star in Down's syndrome film after Plymouth student mum's photography project
Plymouth Herald, 21st August 2014
A mum has won an international award for telling the story of her relationship with her Down's syndrome daughter through photographs ... She embarked on the project after struggling to come to terms with the fact her daughter, Alice, was born with Down’s syndrome ...

Classic

On The Dignity of Risk
A Walk on the Happy Side, 20th January 2009
... Over protection can keep people from becoming all they could become.

Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too ...

Mothers and Others Luncheon

Our guest speaker will be the delightful and engaging Anne Therese Naylor. Anne is an author, artist, advocate and public speaker. Her book Art from Adversity: A Life with Bipolar describes living with bipolar and caring for her four children, her elder son has Down syndrome. She is a long standing member of Down Syndrome NSW and was named NSW Carer of the Year 2013.

Sunday 14th September 2014
from midday

The Bridge Room, Cafe Opera, InterContinental Hotel
117 Macquarie St, Sydney

Cost: Lunch incl sparkling wine - $83 p/person; Lunch only - $70 p/person

• Book online here, or phone the Down Syndrome NSW office on 9841 4444

New books

The Autism Discussion Page on the Core Challenges of Autism: A Toolbox for Helping Children with Autism Feel Safe, Accepted, and Competent (2 volumes: blue book and green book)

Bill Nason, 2014

Launched as both paperback and Kindle editions last week, and available for purchase from Amazon:

The Autism Discussion Page blue book focuses on the core challenges associated with autism (cognitive, sensory, social, and emotional) and provides concise, accessible information and simple tools for supporting children with these vulnerabilities. 

The Autism Discussion Page green book covers anxiety and stress, challenging behaviors, stretching comfort zones, discipline, and school issues. It also provides more general teaching and mentoring strategies for coaching children on the autism spectrum in basic daily living strategies to improve their day-to-day lives.

Based on posts on the popular online community page and organised by subject for ease of reference, these books offer an excellent understanding of how children with autism process and experience the world and effective strategies for coping with the challenges.

• The Autism Discussion page on Facebook

BSWAT Senate hearing and court case: recent progress and commentary

Progress on the Business Services Wage Assessment Tool (BSWAT) debate is gaining more media attention as Senate hearings approach:

Back pay class action by 10,000 workers with disability will continue

Helen Davidson, The Guardian, 26th August 2014

A class action against the government over back pay allegedly owed to about 10,000 workers with an intellectual disability will continue, regardless of whether the Senate passes a bill establishing a repayment scheme, because lawyers representing the employees claim it will only pay around half of what’s owed.

The Business Services Wage Assessment Tool (Bswat), assessed wages for around half of the employees working in government supported Australian Disability Enterprises (ADEs) – previously known as sheltered workshops ...

Kicking an own goal for team Australia
Graeme Innes, Howzat, 26th August 2014
Mitch Fifield is one of the best ministers in the Abbot government- you would have to be to have piloted the National Disability Insurance Scheme unscathed through the tsunami of the recent federal budget. But he has been badly advised if he blames the situation of employees with disabilities in sheltered workshops or Australian Disability Enterprises on the Australian Human Rights Commission. Let me tell you the real story ...

First published in The Australian. This is the unedited version.


Disability advocates call on Senate to stop Bill stripping wages from workers with intellectual disability
People with Disability Australia (media Release), 25th August 2014
Today, four national peak disability groups will join with the AED Legal Centre and more than 30 community disability organisations to launch an open letter calling on politicians from all parties to vote against a bill to extinguish the legal rights of up to 10,500 Australian workers with intellectual disability. Some of these workers earn less than $1 an hour ...
Govt Puts Funds Towards Disability Wage Arrangements
Probono Australia News, 25th August 2014
The Federal Government has announced $173 million to help the supported employment sector work towards new wage arrangements for disability employees currently working in Australian Disability Enterprises (ADEs). This follows the suspension of the Business Services Wage Assessment Tool (BSWAT) in December 2012.

The Government says funding will be used in part to develop and implement a new productivity-based wage tool (including new assessments) for use across the supported employment sector. However the announcement comes as disability peak body People with Disability Australia, in partnership with national peak disability and advocacy organisations, have called on Parliament to reject the Business Services Wage Assessment Tool (BSWAT) Payment Scheme Bill 2014 ...

Minister Fifield must reward genuine effort not failureInclusion Australia (formerly National Council on Intellectual Disability), 22nd August 2014

The announcement by Minister Fifield of an additional $173 million to support employees get fair wages in Australian Disability Enterprises (ADEs) is welcomed as a step forward by Inclusion Australia.The announcement, however, does not resolve serious concerns about the treatment of employees with intellectual disability, nor the ongoing viability of ADEs ...

Idealism threatens jobs for the disabled

Mitch Fifield, The Australian, 21st August 2014

Few would deny that the Australian Human Rights Commission is comprised of well-meaning advocates who have the best of intentions discharging their duties ...
Disability wages system to get $173m

Michelle Webster, Illawarra Mercury, 21st August 2014

A plan by the federal government to create a national wage system for employees with disabilities should be made in association with the Fair Work Commission, Greenacres chief executive Chris Christodoulou says ...

What's fair pay for a fair day's work for the intellectually disabled?

Louise Milligan, 7.30 (ABC), 21st August 2014 (Video 8m 15s, and transcript)
Workers with intellectual disabilities from what used to be known as 'sheltered workshops' are seeking back pay after the Federal Court ruled that paying them a fraction of the minimum wage was discriminatory and they are fighting their case despite a Government offer of half what they're claiming in return for dropping their case.

• Australian Disability Enterprises are sharing their views through the website AEDs Work for Me

Research news and commentary #9 for 2014

Lines of Inquiry, #5, August 2014
Centre for Applied Disability Research (A national Disability Services initiative)
You can subscribe online to receive Lines of Enquiry by email, or read it from the website.

Reimagining disability: Ground-breaking new research

University of Waikato (NZ), 13th August 2014

University of Waikato PhD candidate Ingrid Jones is conducting ground-breaking new research into changing the way society thinks about disability. Her research, entitled “Reimagining disability: Towards learning disability pride” aims to explore the concepts of disability pride and ableism with a group of learning (intellectually) disabled people.

“Having a disability is largely viewed as having a problem, when it shouldn’t be,” she says. “It’s just a part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being “able” is seen as the norm, when society is more diverse than that.” ...

Homo floresiensis: scientists clash over claims 'hobbit man' was modern human with Down's syndrome

Richard McKie, The Observer (UK), 17th August 2014

A furious international dispute has erupted over the publication of a paper that claims the hobbit man of Flores was a modern human who had Down's syndrome ...

Inclusive Classrooms Provide Language Boost, Study Finds
Michelle Diament, Disability Scoop, 29th July 2014
For young children with disabilities, the key to mastering language may be surrounding them with their typically-developing peers, researchers say. Over the course of just one school year, a new study finds that preschoolers with disabilities who attended mainstream classes with highly-skilled peers were using language on par with their classmates without disabilities ...

• Peer Effects in Early Childhood Education: Testing the Assumptions of Special-Education Inclusion Laura M. Justice et al, Psychological Science, published online 25th July 2014 Abstract free online

Hearing new words first helps children with Down syndrome when reading
Down Syndrome Education International, 29th July 2014
Recently-published findings suggest that when children with Down syndrome attempt to read unfamiliar words, it is helpful if they know what the word sounds like ...

Down syndrome teens need support, health assessed
Rebecca Graham, ScienceNetwork Western Australia, 24th July 2014
Young adults with Down syndrome experience a range of physical and mental health conditions over and above those commonly reported in children with the condition—and these health problems may significantly impact their daily lives, according to recent research. The collaborative study between the Telethon Kids Institute, Curtin University and the University of Queensland also found these young people often experience multiple conditions, and that mental health conditions were almost four times more prevalent in these young adults than in those from the general WA population ...


Mothers of children with autism benefit from peer-led intervention: study
Jennifer Wetzel, Research News @ Vanderbilt, 21st July 2014
... In a first-of-its-kind study, researchers from Vanderbilt University examined two treatment programs in a large number of primary caregivers of a child with a disability. Participants in both groups experienced improvements in mental health, sleep and overall life satisfaction and showed less dysfunctional parent-child interactions ...

Down syndrome diagnosis - new support available

Dawkins ill-formed comments a reflection of current advice

Down Syndrome Australia 

26th August 2014

The recent ill-informed and anti-choice comments by Richard Dawkins, directing prospective parents who have a prenatal diagnosis of Down syndrome to terminate the pregnancy, are an unfortunate reflection of the attitudes of many medical professionals in Australia. Expectant parents receiving a diagnosis of Down syndrome have traditionally been offered little in the way of relevant, up-to-date, evidence based information and co-ordinated support at this time of heightened emotional vulnerability.

Contemporary research shows that the provision of balanced information from a number of sources and sufficient space for deliberation have a critical impact on the wellbeing of families in this situation.

Down Syndrome Australia welcomes technological advances that support improved health outcomes for expectant women and their children. ‘Down Syndrome Australia respects the right of families to make decisions appropriate to their beliefs and circumstances,’ says Catherine McAlpine, CEO Down Syndrome Australia, ‘but we also believe that the current level of care usually experienced by prospective parents does not meet this standard of balanced information and sufficient space for decision making.’

Down Syndrome Australia is pleased to address this issue with the launch today of two support resources;

• Down Syndrome Australia pre and post natal information line 1300 881 935. This national 1300 number will connect callers to their local state or territory Down syndrome support organisation to enable access to non-directive information, to ask questions and to speak to, or arrange to speak to, a parent of a child with Down syndrome.

• Prenatal testing for Down syndrome fact sheet. This fact sheet contains easy-to-understand, factual and balanced information for people considering prenatal testing or if a test shows that a baby may have or does have Down syndrome. Download it here.

Down Syndrome Australia recommends that whenever prenatal testing is provided in Australia, good quality information and time for prospective parents to deliberate are also included to ensure best practice. Current, up-to-date and balanced information on Down syndrome, examples of lived experiences and links to other non-directive resources and avenues for support can be found here.

The production of these resources was assisted by a grant from the federal Department of Health.

People with Down syndrome in the media

Katrina

Ours, Issue#1, August 2014
... I’m in my last year of school, at high school. I want to be a kindergarten teacher so I’m doing a special early childhood program through Gateway, where I do a lot of writing and reading. I’m doing really well. I passed Level 2 NCEA, and last year I passed algebra and calculus in Level Two of NCEA ...

• Ours is an independent '... platform for young people to start conversations with one another about what matters to them in the lead up to the (NZ) general election ...' (September 2014)

Downright successful, capable and happy
Debora Van Brenk, The London Free Press, 18th August 2014
She is an artist, a dancer, a six-sport competitive athlete with two part-time jobs. And now Val Nyhout has added blogger to her list of achievements.

One of the region’s most versatile Special Olympics athletes is finding the Internet an ideal place to tell the world what a great life she has.

While there’s a wide network of parents blogging about life with children who have Down syndrome, it’s a rarity that someone with Down syndrome writes her own ...

What a married woman with Down syndrome wants you to knowParker Myles, 13th August 2014
Meet Kate Owens. Kate got married 3 years ago, and is busy loving life. I felt her beautiful love story needed to be shared, so I asked Kate to share some things about herself as well ...

Meet Hollie, the six-year-old cancer survivor who's chopping off her waist-length hair to help others
Carys Lewis, Wales Online, 6th August 2014
... Six-year-old Hollie Evans was diagnosed with acute myloid leukaemia, a rare form of the cancer, at just 19 months old, and underwent five months of gruelling chemotherapy. On December 10 this year, the Tremains Primary School pupil, who was also diagnosed with having Down’s syndrome 10 days after she was born, will mark five years since the last of four rounds of chemotherapy. But her parents Hayley and Steve were last month given the long-awaited “all-clear” confirmation they’ve been desperately hoping for ...

Meet Alex Snedden (video 26m 52 s)
AttitudeLive (NZ),  2013
Alex Sneddon’s parents have always wanted the best for their son. From early on they helped him to create the kind of life he wanted. Now the 24-year-old who lives with Down Syndrome is holding down four jobs and living an independent life ...

National Disability Forum - online survey

As part of the Australian Human Rights Commission’s ongoing commitment to the protection and promotion of the rights of people with disabilities, Acting Disability Discrimination Commissioner the Hon. Susan Ryan AO is holding a National Disability Forum on 15 September 2014. Participation in the forum will be by invitation. 

 As part of our consultation process we are conducting an online survey, and we welcome responses from the public as outlined below. Further information about the availability of live streaming of the forum will be available in due course.

• More information  about the survey from the AHRC's website
• To participate in the survey, click here 
If you have any queries about the forum or have difficulty accessing the survey please email: disabilityforum2014@humanrights.gov.au

Related: Acting Disability Discrimination Commissioner Announces Forum

Notice of Annual General Meeting

35th Annual General Meeting Sunday 28th September 2014 10:15am for a 10:30am start at Information and Cultural Exchange Inc. (ICE)  8 Victoria Rd Parramatta  (Corner Victoria Rd and Vickers St Parramatta)  At this year’s AGM you will have the opportunity to get together with other members, meet the new Board and review the past 12 months of Down Syndrome NSW. Please join us for light refreshments after the meeting. For catering and seating purposes, please RSVP here or call the Office on 9841 4444 if you would like to attend the 2014 AGM. The Information and Cultural Exchange centre is easily accessible by train, bus or car. Parking is available on the street. To plan your trip by public transport visit www.131500.com.au or call 131 500. Nominations for the Down Syndrome NSW Board are now open. For more information on becoming a Board member or to complete a nomination form please visit our website. Board nominations close at COB Friday 5th September 2014 If you'd like to have a chat in person with our Executive Director, Tracylee Arestides, email her, Tracylee.arestides@dsansw.org.au or our current President, Matthew Kelly president@dsansw.org.au and we'll make a time to talk.

Weekend reading: 23rd - 24th August 2014

The first two links are just a small sample of responses to Richard Dawkins (see previous post) - there will be more:

Dear Richard Dawkins, You Are Wrong

Hayley Goleniowska, Huffington Post, 21st August 2014
Richard Dawkins, atheist author, provocateur, scientist, you must by now be well aware of the furore over your comments yesterday. Comments that it was 'immoral' to bring a baby with Down's syndrome into the world if you have a choice.

'Abort it and try again', was your advice because it is the 'civilised' thing to do as 'they are foetuses, diagnosed before they have human feelings.'

As I watched the Twitter debate unfurl, you continued that you would not recommend abortion for individuals with Autism, say, as they 'contribute' to society, for they are 'enhanced', which, in your view those with Trisomy 21 are not. You even went so far as to say children with Down's syndrome 'suffer'.

Now hold your horses just one moment Mr Dawkins. I think perhaps you are confusing non-essentialist, humanist thinking with a loss of humanity here ...

The power of being wanted
Ginger Stickney, Green Ginger Tea, 20th August 2014
Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." ...  and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me."

Young people with disabilities campaign for the right to learn

Andy Merriman, The Guardian, 19th August 2014

In June, my daughter attended a demonstration outside the houses of parliament. Sarah, who has Down's syndrome, travelled by coach from Somerset with fellow students and staff from her college, where she met 80 other young people to launch a campaign highlighting the need for educational equality for people with disabilities ...

Andy Merriman wrote 'A Minor Adjustment' in 1999, a popular book in our library collection.

What is the magic sauce for unlocking your child’s full potential?

Sipping Lemonade, 10th October 2013

... this eagerness to do, give, provide, find, research, etc. gave me a bit of anxiety early on. How much was enough? Was there ever too much? Were the therapists I was using the BEST I could find? Were the books I was reading the BEST I could read? What was the magic sauce? I needed to know ... It is the unconditional love that tells your child: you are worth the world not when/if you accomplish x, y, z—but because you are you. And you are enough ...

Down Syndrome International Statement in Response to Richard Dawkins

Down Syndrome International Statement in Response to Richard Dawkins' Comments on Twitter Regarding Down Syndrome
21 August 2014

People with Down syndrome are active contributors to family life, not passive recipients of care. 

Personal testimony from parents, siblings and other family members has shown that having a member with Down syndrome can have a positive impact for all. This has been supported by several independent research findings. 

DSi does not consider Down syndrome in itself a reason for termination. People with Down syndrome can and do lead full and rewarding lives and contribute as valued and equal members of their communities. 

However, families must make their own choices. DSi works with our national member organisations around the world to ensure that all prospective parents are given accurate, up-to-date and unbiased information about Down syndrome and what life may hold for someone with Down syndrome today. 

For further information, please see our Position Statement on Prenatal Testing.

• The Guardian's report of Richard Dawkins comments on Twitter and the public response

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

Among a long lists of activities, events and supports offered to people with Down syndrome, their families and professionals, 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

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 Working Together - to build social connections  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

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.

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

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

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.  

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au

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.  

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au

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:

• Android tablets - now available - download from Google Play
• Apple iPads - now available - download from App Store
• Windows 8.1 tablets and PCs - now available - download from Windows Store
• Windows 7 PCs - expected soon
• Further information about content, activities and versions

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.

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.

• Obstructive Sleep Apnea in Children with Down Syndrome - Overview
• Preparing for Your  Child's Sleep Study
• 
  

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

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

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 ...

• The Dreamhouse, Episode 1 on iView

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

Is Down syndrome comedy fodder?

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 Membership, which 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

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:

• Facebook
• YouTube 
• Pinterest 

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.

... read the full report here, on ABC News online.

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.