PWDA 'Citizen Jury' on the National Disability Insurance Scheme

 People with Disability Australia is hosting a 'Citizens' Jury' event on social media. This information is from the PWDA Facebook page:

Saturday, November 29 at 12:00pm - 4:00pm 

It’s time for people with disability to have OUR say on the NDIS (National Disability Insurance Scheme)! PWDA members, and the disability community are invited to tell us what YOU think at the online forum.  

PWDA President Craig Wallace and Board members will be online to join the conversation and you can also have your say on Twitter #ndisscorecard 

Your input will form the People’s submission for the NDIS Scorecard Project and will be presented by PWDA to the Citizens' Jury being held in Sydney in February 2015.

• Sign up for the event here

Show Off Arts Festival - call for volunteers

We need some volunteers to help with the event on the day. If you, or any of your friends or family, are interested please email: events@dsansw.org.au

Show Off Arts Festival showcases people with Down syndrome involved in all aspects of the arts. The all-day extravaganza includes live performance, exhibitions and workshops across dance, drama, music, film and fine arts.

This event is for families and community members to meet, connect and be inspired.

10am - 3pm Sunday 30 November 2014
Riverside Theatres Parramatta

Official opening at 10.30 followed by live performance from 11am.

Workshops during the day will include drama, drumming and dance. Don't miss out, book now to attend these workshops, online bookings here

Show Off is part of Riverside Theatre's Beyond the Square STARE FEST - an inclusive arts festival that will make you look again.

• Brochure and program available here

People with Down syndrome in the media

Forgetful hen a prompt for author

Shannon Hampton, Albany Advertiser, 13th November 2014
Local author Naomi Lake will launch her first children’s book this weekend. The story follows a forgetful hen named Harmony who loses her eggs and her journey to find them before they hatch. Lake, 24, who has Down syndrome, drew inspiration from the chickens in her backyard ...

Man with Down syndrome empowers others using technology

Microsoft, The Firehose, 13th november 2014
For Carlos De Saro technology is a tool that’s helped him open doors he never imagined possible. Now, he’s using his knowledge to help others with disabilities achieve their dreams ...

Brixham chef Mitch Tonks works with Down's Syndrome Association
Herald Express (UK), 13th November 2014
... "As chefs we don't understand disability as well as perhaps we should and that's probably the same for most people. The WorkFit programme was a real bridge to all of that for us; really making it very easy, so that we could actually make it happen without any duress on our business ...

Cafe serves opportunity with coffee

Claire Tyrrell, The West Australian, 7th November 2014
... "I have learnt a lot here. I talk to the customers and serve a lot of food and coffee," Ms Childs said. Through Uniting Care West's Community Options program, The Warehouse Cafe helps train 20 people with disabilities ...

Nicholas Popowich talks about life with Down syndrome
CBC News Saskathewan, 1st November 2014
Nicholas Popowich is an ambitious 24-year-old. He spends half of his working week studying theatre arts at the University of Regina, and the other half working at a SaskTel kiosk in a Regina mall ...

HSC 2014: Two determined girls on a road less travelled
Amy McNeilage, Sydney Morning Herald, 27th October 2014
... "Success at the end of school is not just about a number and it means something different for everyone," Jenny Fowler, the girls' principal at Our Lady of the Sacred Heart College at Kensington, said. "Marnie and Lucy are leaving school happy, confident and equipped, which is a great achievement." ...


Louisville man serves as advocate for those with Down syndrome

Kimberli Turner, Colorado Home Town Weekly News, 22nd October 2014
... "I enjoy being an advocate, because I want to have fun, do new things, do my best and inspire other people," said Long, who is an NDSS ambassador and . "I thought it would be fun for family, friends and former classmates and teachers to see what I look like since graduating from high school in 2012. I look much older now. The video helps people everywhere understand that people with Down syndrome are changing the world." ...

Port Alberni teen makes a special blanket for Cpl. Nathan Cirillo’s son

Amy Judd, Global News, 27th October 2014
Seventeen-year-old Angel Magnussen is hard at work on another Hugginz blanket. She lives with Down syndrome and devotes her life to helping others. She spends hours making blankets for sick children, among other things. But when Magnussen heard about the shooting in Ottawa last week she learned Cpl. Nathan Cirillo had a six-year-old son, Marcus. So Magnussen knew she had to start making a special blanket ...

Photographic exhibition at Sydney Opera House for IDPWD

Merry Makers Australia

Weekend reading and viewing: 15th - 16th November 2014

Down Syndrome Australia has some brilliant photos and results on its Facebook page from the 7th World Down Syndrome Swimming Championship in Mexico, that wraps up 15th November. Send one last Herogram, via Down Syndrome Swimming Australia.

It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome
Leticia Keighley, Embracing Wade, 13th November 2014
... It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome, but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born ...

Thinking about College - We can do this

David Perry, How Did We Get Into This Mess? 11th November 2014

I am a college professor. We have a college savings fund for my daughter, principally funded by parents so far, though we're beginning to be able to contribute too. We do not have a college savings fund for my son, because he has Down syndrome, and we never thought that college was a reasonable option. We were wrong ...

Seeing the light: One mother’s story of raising a child with Down syndrome

Melinda Carstensen, Fox News, 6th November 2014

... The biggest lesson LeVeque has learned from her son is to accept others for who they are— and to not try to change them, rework them, or fix them ...

Sam & Mattie's Teen Zombie Movie + Making-Of Documentary!
Two young men with Down syndrome are planning to make a movie, and are using social media to organise funding and support - they have passed their minimum fundraising totla, but you can still pledge support over the next five days.

• Media story about the campaign

Opal Card - pensioner concession cards now available

Transport for NSW has recently released the Opal Card for pensioners, including those with a Disability Support Pension. Other concession card holders can apply 'later'. 

Many people with Down syndrome and other intellectual disabilities use public transport regularly. Not having to handle money for fares for every trip, and not having to ensure they have the 'right' money will be welcome.

The Opal card is being rolled out across public transport in Sydney, the Blue Mountains, Central Coast, Hunter, Illawarra and Southern Highlands. The Opal card can currently be used on ferries, trains, and many buses - check online for routes that are 'Opal enabled' so far, and for timelines for the full roll-out.

You can apply for your card online, by phone, or at an Opal card retailer. When you apply online, your eligibility is checked online as part of the process (via your pension/concession card number), very quickly. The card is then mailed to you within a few days, you can activate it online and begin to use it on public transport displaying the Opal logo.

There are a number of options for ordering, initial payment and 'topping up', so set aside some time (it took us about 20 minutes online, and the card arrived in three days) to go through the process and decide how you want to manage it.

Chris Bunton - on 'The Nationals', for IDPWD

In the lead up to International Day of People with Disability on 3rd December the annual NSW campaign 'Don't DIS myABILITY' is gearing up. This week, their blog is introducing in more depth, the 2014 Ambassadors who were announced last week.  Here is Christopher Bunton's post about his recent participation in gymnastics at the Special Olympic National Games in Melbourne - just one of the many strings to Chris's bow:

... At the end of October I traveled to Melbourne with the NSW team to compete at the Special Olympics National Games in gymnastics. 

Of course it was a lot of hard work in the gym to get there. I started gymnastics at the age of six, and had my first competition when I was nine. Since then I have continued training and competing at regional, state, national and even world games ... 

 ... read or listen to all of Chris's article, and see some excellent photos here.

Chris is an accomplished young man who has often featured in our blog, you can read about some of his other achievements here.

2014 National Disability Awards - finalists

The finalists for the 2014 National Disability Awards have been announced - they are listed here, by category, with brief information about why they were nominated. The judging criteria are here. 

The 2014 National Disability Awards will take place at Parliament House in Canberra on Tuesday 25 November 2014.

The National Disability Awards are an International Day of People with Disability (Australia) activity.

Bike riding clinic - Strathfield

Learning to ride a bike can be challenging for both children and adults with Down syndrome, but the benefits are clear from both research and families' reports - local clinics are becoming more available, like this welcome new initiative from Strathfield Council:

• LEARN TO RIDE A BICYCLE CLINICS – FLYER and PARTICIPANT REGISTRATION FORM
• Venue: Dutton Centre, 40 Augusta Street, Strathfield 

The bike riding clinic is being offered by Strathfield Council - but you do not have to live in the Strathfield LGA to participate. For further enquiries please call Strathfield Council on 9748 9999. 

Congratulations Genevieve Clay-Smith, 2015 NSW Young Australian of the Year

How good to hear that the very talented and innovative Genevieve Clay-Smith has been selected as NSW Young Australia of the Year 2015.  Genevieve has worked with Down Syndrome NSW, and has been instrumental is promoting the careers of many young people with Down syndrome in the film industry. 

Genevieve directed Let the Journey Begin exploring the lives of three individuals and their families as they progress through the Independent Living Support Initiative (ILSI) program over the course of nine months. (ILSI is an innovative program designed and developed by Down Syndrome NSW, in conjunction with service providers and NSW Ageing Disability and Home Care, to help people living with a disability live a more independent life.)

Genevieve directed Be My Brother the winner of Tropfest 2009 (in which Gerard O'Dwyer also won Best Actor). She founded Bus Stop Films, and has included many people with Down syndrome, and other disabilities on both sides of the camera, winning awards and honours along the way. The Interviewer is currently on the international film festival circuit, and continues to win both critical and popular acclaim, and awards. 

... Genevieve Clay-Smith has been named the 2015 NSW Young Australian of the Year. The filmmaker and social entrepreneur, 26, is the co-founder of not-for-profit organisation Bus Stop Films, which teaches members of diverse and marginalised communities how to create short films that voice their experiences ... She is currently working with 12 of her intellectually disabled students on a film called Heartbreak and Beauty, in which they share their experiences of love and loss through poetry, dance and visual metaphor 

Ms Clay-Smith is also the co-founder of Taste Creative, which provides students with paid employment on film sets ... Genevieve Clay-Smith NSW Young Australian of the Year 2015, Helen Gregory, Newcastle Herald, 10th November 2014

The writer/director (Genevieve Clay-Smith) has been nominated in the annual Australian Financial Review and Westpac awards for her contribution to creating inclusion in the film industry ... Genevieve Clay-Smith has been recognised in the Young Leaders category for her efforts in creating inclusion within the film industry.
The gifted writer/director has won numerous accolades for her empathetic film work including Tropfest’s top prize and in 2012, Clay-Smith co-founded Bus Stop Films, a pioneering not-for-profit organisation dedicated to giving people with a disability the opportunity to learn the ropes when it came to professional filmmaking ... Genevieve Clay-Smith Named One Of The 100 Women Of Influence For 2014, Film INK

Bus Stop Films

Bus Stop Films on Facebook

Photos and medal tally - direct from Mexico

The 7th World Down Syndrome Swimming Championships are well under way in Mexico, as noted yesterday.  The very first gold medal of the meet went to Stephen Donovan from Western Australia - Down Syndrome Australia's Facebook page is proving an excellent place to keep up with Team Australia's performances and medal tally as they happen, direct from supporters by the pool.

Congratulations Team Australia on your performances so far, good luck for the rest of the week!

Embracing Success: Down Syndrome NSW Education Conference 2015

Download the flyer and registration form here - forward it to your child's school now (before the end of the school year), early bird rates currently apply until 30th January 2015

News and opinion on employment matters

Economic Security and Employment
People with Disability (Australia) E-Bulletin, November 2014
Wage Justice Campaign - PWDA continues to work on wage justice for employees with disability in Australian Disability Enterprises (ADEs), previously known as ‘sheltered workshops’ ...

Cafe serves opportunity with coffee

Claire Tyrrell, The West Australian, 7th November 2013
... "I have learnt a lot here. I talk to the customers and serve a lot of food and coffee," Ms Childs said.
Through Uniting Care West's Community Options program, The Warehouse Cafe helps train 20 people with disabilities ...

Vermont closed workshops for people with disabilities; what happened next?

Halle Stockton, PublicSource, 28th September 2014

... The sheltered workshops that are still prevalent in Pennsylvania were shut down in Vermont more than a decade ago. And now, the employment rate of people with developmental disabilities in the New England state is twice the national average ...

Move to shift disabled workers from 'sheltered workshops' to community jobs stirs debate
Mary Spicuzza, Wisconsin State Journal, 28th September 2014
For decades, facilities where people with disabilities do basic jobs while separated from non-disabled workers were praised for providing those with developmental disabilities opportunities to learn skills and build friendships.

But in recent years, increasing numbers of people, including disability rights advocates and federal officials, have raised concerns that many of these nonprofit training programs, known as “sheltered workshops,” keep disabled workers trapped in low-wage jobs — often making $2 to $3 an hour — and fail to help them move on to higher-paying opportunities in the private or public sectors ...

New York Times Wins Disability Reporting Award
Arizona State University, 13th October 2014
A New York Times story about a group of men with intellectual disabilities who worked in servitude for decades has won top honors in the 2014 Katherine Schneider Journalism Award for Excellence in Reporting on Disability ...

7th World Down Syndrome Swimming Championships this week - send a herogram now

The swimmers are in Mexico, acclimatised, and ready to compete all this week in the 7th World Down Syndrome Swimming Championships - send a herogram to Team Australia via Down Syndrome Swimming Australia, here.

Messages will be collected and read out to the swimmers by the support team every day while in Mexico. Herograms are a great way to encourage the swimmers! They love receiving messages from home during the competition or from people they know. Spread the word to friends, supporters and people in your individual networks so others can send Herograms too. 

Weekend reading and viewing 8th - 9th November 2014

The Cradle Will Fall
Sergey Chernov Transitions Online, 4 November 2014
In Russia, parents of babies with developmental disabilities face pressure from both society and the medical establishment to abandon their children at birth.

DREAMS to Reality
D.R.E.A.M. Partnership, 27th August 2014

Clinton Township resident, Michelle Purri, receives national award

The Hunterdon County Democrat, 29th October 2014
Michelle Purri of Clinton Township is on a roll. Earlier this month the 22-year-old resident of Hunterdon County received the Melissa Riggio Voices Award from the National Down Syndrome Society and the Riggio family, founders of Barnes & Noble. The award is given annually to someone with Down syndrome who the family deems best exemplifies the spirit and outlook on life of Melissa Riggio, who died in 2008.

Purri accepted the award at a luncheon in New York City where she spoke before 250 attendees, telling them, "If you dream it and believe in yourself, all things are possible." ...

BRIGHT SIDE: Megan Sutton opens up world of dance for kids with special needs
Simon Walker, Newcastle Herald, 3rd November 2014

Fired by personal loss and the desire to give everyone a fair go, dance teacher and choreographer Megan Sutton has set up a dance school devoted entirely to kids with special needs ...

The beautiful dancers with Down syndrome

Australian Women's Weekly, November 2014

Short excerpt from a much longer article in the print and iPad editions.

Dr Janet Carr honoured at the House of Lords

British Pychological Society, 31st October 2014
... Dr Carr’s unique study has been generating findings of importance to the families and care services as well as to the scientific community. There is unlikely to be any comparable study of this special group of people from a psychological perspective. Her research was initiated by the Psychiatric Genetics Research Unit of the Medical Research Council, based in the early 1960s, at the London Institute of Psychiatry. It’s aim was to establish the educational requirements of the local population of children with Down’s syndrome ...

I Won't Pretend That Disability Simulation Works

Emily Ladau, Huffington Post (The Blog), 5th November 2014
Activities meant to simulate the experience of disability are so often lauded as moving, powerful, eye-opening experiences. With just a few hours in a wheelchair, wearing earplugs, or wearing a blindfold, people supposedly gain a deeper understanding of what life with a disability truly entails. I, for one, don't buy it ...

Parents with learning difficulties awarded £12,000 as judge rules Leicester City Council breached their ‘basic human rights’ by taking their baby away
PA_Warzynski, Leicester Mercury, 29th October 2014
A couple with learning difficulties who were separated from their baby daughter for more than a year have won £12,000 in compensation after a judge ruled Leicester City Council had violated their basic human rights ...

Team Inverell - Scrapheap Adventure Ride 2014

Team Inverell's float in a local parade celebrated their enthusiastic and 

highly successful participation in this year's Scrapheap Adventure Ride, 

in September.  They are already preparing for next year's adventure.  

Thank you for allowing us to share your Facebook photos, and thank you Inverell.

Don't DIS my ABILITY 2014 ambassadors and posters

From the Don’t DIS my ABILITY website, announcements for the 2014 campaign:

Ambassadors support and strengthen the Don’t DIS my ABILITY campaign by serving as its voice. Ambassadors share their personal stories and campaign messages, ultimately raising awareness of the abilities and achievements of people with disability. 

The 2014 ambassadors are a diverse group of people from across NSW who represent a range of backgrounds, ages and disabilities ...

Our congratulations to all the 2014 ambassadors, who you can read about here - especially to Christopher Bunton. What a wonderful, and hard working year you are having:

Christopher lives by his personal mottos: don’t give up, just have a go and reach your personal best. In 2010 Chris, who has Down Syndrome, achieved great results in the Higher School Certificate and has gone on to complete a Certificate III in Sports and Recreation. Twenty one year old Chris gives it his all and has represented Australia in the Special Olympics in gymnastics. He also loves to perform with Accessible Arts. Chris lives in St Clair with his family.  

Posters released this year's Don't DIS myAbility campaign:

'Include or exclude? It's your choice' message detail:

Download a large-format (A2) .pdf version here
- where you will be able to read the text easily.

WANTED! People with disability living independently - interviews for research study

An important study from the University of NSW (Built Environment) is looking for people to interview:

$50 for a one-hour interview

In the next few years, reforms in the disability sector in Australia will allow many more people with disability to move out of their parents’ homes or shared supported accommodation, and live independently. Finding and sustaining housing that is accessible and affordable will be one of the key challenges for people wanting to move to live independently. 

The Australian Housing and Urban Research Institute (AHURI) is currently undertaking research on housing and independent living for people with disability. We are interested in interviewing people who have already made such a move and can tell us about their experiences ... see more here

New resources, publications

Durham author gets honest about parenting and Down syndrome
Corbie Hills, News-Observer (North Carolina), 3rd November 2014

Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ...

Read more here: http://www.newsobserver.com/2014/11/03/4290224/durham-author-gets-honest-about.html?sp=/99/106/#storylink=cpy

Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way ... Her Dad's second book is an unflinching look at his own parenting experience. In the book, he’s not shy to admit his faults and failures. Over 278 pages, Paul documents the rocky path from the shocked new dad he was in 1987 – one who couldn’t see through his daughter’s Down syndrome diagnosis – to the parent he is in 2014, who simply sees a daughter, no qualifier needed ...

Not All History is Remembered Equally: Why You Must See the Film 'Menschen'

Kari Wagner-Peck, A Typical Son, 31st October 2014

This film is not (yet) on general release, but it is on the film festival circuit internationally - worth watching out for, if you are interested in the history of discrimination. Several video excerpts and lots of information are available on the film's website (links at the end of the post).

Royal Commission information and links
Children with Disability Australia provides links to information about all aspects of the work of the current Royal Commission into Institutional Responses to Child Sexual Abuse, on its website, here.

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

Ph D scholarship on offer at UNSW: research on mental health in people with intellectual disability

You might know someone who would be interested in this very valuable academic research opportunity that will benefit people with an intellectual disability, at the University of NSW:

The Department of Developmental Disability Neuropsychiatry (3DN) within the School of Psychiatry, UNSW Australia, is offering a three-year full-time PhD stipend to one or more highly motivated student/s to work with Associate Professor Julian Trollor on a project that will improve access to, and quality of mental health services for people with ID. The PhD is to be undertaken as part of a broad program of research under the ‘Improving Mental Health Outcomes for People with an Intellectual Disability’ National Health and Medical Research Council Partnerships for Better Health Project.

Applications close 30th November 2014. All details are online here.

Stare Fest: Riverside Theatres, Parramatta

STARE FEST brochure - for information on all events

STARE FEST website

All shapes. All sizes. All types. All abilities. STARE FEST is an arts event for everyone.

STARE FEST is produced by Riverside Theatres’ Beyond the Square, an inclusive creative program uniting arts and disability organisations together to present an exciting two week program of theatre, film, dance, music and art across Parramatta.

Get yourself involved in one of the many free workshops, attend a show, buy some original artwork, see a film but most of all come and STARE!

Down Syndrome NSW's Show Off! Arts Festival is a STARE FEST event - 30th November 2014

Online Show Off! workshop registration

Note: the Stare Fest banner artwork is by Digby Webster