Resources, publications

This information is reprinted from NSW CID eNews, August 2015:

Forgotten and Found, by Kim Walker
Forgotten and Found, written by NSW CID Life Member Kim Walker, tells her story from childhood, to institutions, to community life and to becoming an amazing advocate!

Kim tells us the story of her life to explain why no child should grow up in an institution and separated from family. Kim’s story provides a powerful case for what she always wanted – all disability institutions to be closed and all people with disability to have a good life in the community.

Click here if you would like to order a copy of the book.


Online recording of social policy debate on supported decision making

On the 11th of August, the Social Policy Research Centre at UNSW held a debate on supported decision making for people with disability. Click here to find out more about this debate, and click here to listening to a recording of the debate.

Nominations open for Down Syndrome NSW Board for 2016

Down Syndrome NSW members - it is now time to submit your nominations for the Board of Down Syndrome NSW. All nominations will be collected and a vote will be conducted at this years Annual General Meeting to be held on 18th October 2015, at Parramatta

Please download and print your nomination form and follow the instructions.

Please send your completed nomination via email to tracylee.arestides@dsansw.org.au
or by post:

Down Syndrome NSW
C/- Tracylee Arestides
PO Box 107
NORTHMEAD NSW 2152

All nominations must be received by the appointed Returning Officer by 5pm EST Monday 14th September 2015.

If you need to renew your membership, you can do it online on our website now.

News and commentary on the NDIS (36)

The National Disability Insurance Agency (NDIA) is proud to host 

NDIS New World: Disability in the 21st Century Conference and Trade Show to be held at the Brisbane Conference and Exhibition Centre from 27-29 October 2015.

This groundbreaking conference will be a dynamic exchange between people with disability, technology experts, entrepreneurs, policy makers and service providers, along with a vibrant exhibition and trade show and top national and international speakers.

NDIS Newsletter, July 2015

Disability Loop Newsletter #5.2, July 2015

Disability Loop Newsletter  #6 August 2015

Every Australian Counts News Hub
You can catch up with news from the Every Australian Counts campaign for the implementation of the NDIS here, and/or subscribe to weekly news updates, distributed by email

Easy English fact sheet on the Ombudsman and the  (NDIS)
NSW CID eNews, August 2015

The NSW Ombudsman has released an Easy English fact sheet on the Ombudsman and the National Disability Insurance Scheme (NDIS). The fact sheet includes information on how to complain about a service, what you can complain about, who can complain, what happens when you complain, and whether you can complain about the National Disability Insurance Agency (NDIA) to the NSW Ombudsman. More information and fact sheet download.

Carers and the NDIS Survey

Carers Australia
Please complete this survey if you are a family or friend carer that provides unpaid care and support to a person with disability who has a National Disability Insurance Scheme (NDIS) support plan. We would be very interested in your feedback on your experiences with the NDIS.

Carers Australia has been funded by the NDIS Sector Development Fund to collect feedback on how the NDIS is impacting on family and friend carers.

The Implementation of the NDIS: Who Wins, Who Loses?Jenny Green and Jane Mears, Cosmopolitan Civil Societies Journal, Vol.6, No.2, 2014
The National Disability Insurance Scheme, well into its pilot phase with bipartisan support, looks clear to be the future of support for Australians with disability. This paper takes a timely review of key research and reports, analysing the potential benefits and disadvantages of the person-centred approach on which the scheme is premised. It addresses these through the frame of services, employees and people with disability in the Australian context. Whilst there are potentially overwhelming benefits there are also potentially major losses ...

NDIS in the media

More people benefitting from the NDIS

Senator Mitch Fifield's media release on the NDIS Quarter 4 (2014-15) report, 17th August 2015

17,300 People on NDIS

ProBono News Australia, 18th August 2015
... People with Disability Australia President, Craig Wallace, told Pro Bono Australia News that he was satisfied with the progress made this quarter, “despite some of the early alarm that we saw 18 months ago and talk that the scheme wasn’t on track to meet targets”.

“The scheme appears to be moving closer to the bilateral target, the costs are on track and the struts of the scheme seem to be moving into place as expected,” Wallace said ...

Govt moves to quash rumours of 'Razor Gang' cuts and delays to NDIS roll-out

Peta Donald, The World Today (ABC Radio), 18th August 2015

The Federal Government is insisting today that it has no plans for cuts or delays to the multibillion dollar National Disability Insurance Scheme (NDIS) ...

Don’t mess with the NDIS

El Gibbs, Blunt Shovels, 18th August 2015

... The genesis of the scheme – what was that again? Oh yes, I remember. That would have been the Shut Out report, then the Productivity Commission hearings and report, and the Every Australian Counts campaign. The reports that so many people poured their heart and soul into. The ones that said that the NDIS was needed to stop a blow out in support costs, and to restore some basic rights and dignity to disabled Australians. Yes, that genesis.

And complexity? The NDIS is a market-driven system, where individuals are able to buy the supports they need in a competitive environment. Now, if that’s not right up a Coalition government’s alley, I don’t know what is. But just in case, here’s an explainer I prepared for the Treasurer earlier ...

Stop, go back, the NDIS board shake-up is going the wrong way
Simon Darcy, The Conversation, 31st July 2015
For any public policy reform to be successful, it needs to be appropriate, effective and efficient. At the heart of achieving such an outcome is good governance. This requires a balance of more than business skills and an understanding of the insurance industry.

The balancing of skillsets on the NDIA board requires an understanding beyond the corporate sector. There, the business of disability is only one part of the equation. Fifield must understand that any change to the board should be true to the underlying philosophy of the UN Convention on the Rights of Persons with Disabilities and the desires of people with disability to have a say in their future ...

Big hopes NDIS will deliver jobs and services to Aboriginal people in remote areas 
John Stewart, Lateline (ABC TV), 30th July 2015
... One solution to getting the NDIS into remote areas is to have service providers employ local people. The Aboriginal Disability Network said the NDIS was likely to create a jobs boom in the disability sector, and many of the jobs could be done by Aboriginal people.

But Ms Riemer said that would depend on whether or not the disability service providers were prepared to train Aboriginal staff ...

Celebrate Down syndrome Awareness Week with us!

REGISTER NOW

Step Up! for Down syndrome is an event to bring people together in their local areas, celebrate the achievements of people with Down syndrome and raise funds.

This year there are five events state wide, including Nowra for the first time. Regardless of if you are fundraising or not we would love to see you there, so put the date in your diary and join us for a day of fun!

Registering to attend your local event is easy. Just click on the below link (for your preferred event) and follow the prompts to sign in.

If there’s not a StepUp! event in your area and you’d like to organise one, give us a call and we’ll help you get started (and give you all the support you need to organise a great day).

SYDNEY - Sunday 25 October 2015 

Parramatta Park, Parramatta

NOWRA - Sunday 18 October 2015 

Moona Moona Creek, Huskissons

WAGGA - Sunday 18 October 2015  

Collins Park, Corner Forsyth and Thorne Street, Wagga

PICTON - Sunday 01 November 2015 

Picton Botanic Gardens

CENTRAL COAST - Details TBA

StepUp! is about connecting, celebrating and fundraising. In addition to joining us on the event day, we hope you will choose to do some fundraising for us too. Once you register, the fundraising part is as simple as sharing the link that your sign in generates for you. Personalise the page with photos and stories and share with your friends.

If you’re not up to walking, you can still participate as we’re also looking for volunteers to help manage the day. If this interests you, please email us at stepup@dsansw.org.au

We’re looking forward to Step UP! for Down syndrome 2015 and are excited about reaching our fundraising goal of $60,000!

We look forward to seeing you sharing in the fun and excitement at one of these events.

See you there!
Sarah, Ben and the Down Syndrome NSW Team
Phone: 02 9841 4444 | Email: events@dsansw.org.au

New blog: 'The life that Max built'

Alex McAuley's blog The Life That Max Built is a new and very welcome addition to the scene - beautifully written, candid, funny ... she aims to reassure newer families that life will be good, without shirking the bits that will hard, and strikes just the right note. Max is 22, and one of four boys, so Alex and Max have a lot of well-considered experience to share.

(In addition to regular blog posts, the as-yet undeveloped pages 'Dancing to the Max' and 'Pottery to the Max' hold promise of other delights. If you can't wait, you can read a little more about Max here.)

Just three posts in, this one is going on the 'Blogs we read' list (scroll down the column on the right of this page) and into the blog reader so that no post is missed. It deserves to be shared around.

Two sobering international stories ...

The week of the 12th World Down Syndrome Congress is a good time to highlight that people with Down syndrome live everywhere in the world, in many different environments and circumstances:

Australians supporting people with Down syndrome in the wake of the Nepal earthquake

Down Syndrome Australia's  news page, 16th August 2015

Down Syndrome Association of Nepal has written a thank you letter to Down Syndrome Association of Northern Territory for collecting donations for them after the devastating earthquakes in April and May this year. The letter outlines what the funds were used for, and we have provided information for you if you would like to help too.

.... Now as life is coming back to normal and relief needs have been met to some extent with national/international help, thanks to it. Our concern now is to look into the ignored long term sustainable development of society and help people both family and children with Down syndrome to regain means of livelihood, e.g. small vegetable farming, local sweet making and also look for market to the produce ...

If you would like to make a donation to Down Syndrome Association of Nepal, visit the donation page on their website. You can also volunteer with them. Alternatively, you can make a donation to Down Syndrome Association of Nepal via the Down Syndrome Australia donate page. Just make a note that you would like your donation to be forwarded to Nepal.

Miracle Ali’s Nightmare at Sea
UNHCR Tracks, 14th August 2015

Just 40 days old, a boy with Down’s Syndrome may never remember his journey to Europe. His parents will never forget it ...

There is a link at the top of the UN Refugee Agency (UNHCR) page to ways to support the Agency.

12th World Down Syndrome Congress, Chennai, India: this week

From Down Syndrome International:

We are excited and looking forward to welcoming you to Chennai, India for the 12th World Down Syndrome Congress 19 - 21 August.

If you are not able to be at the Congress in person, you can follow us on social media where we will be sending updates during the proceedings of the Congress. 

• Instagram:  @worlddscongress
• Twitter:  @WorldDSCongress
• Facebook:  World Down Syndrome Congress w2015
• Blog: 12th World Down Syndrome Congress blog 

Business Services Wage Assessment Tool (BSWAT) Payment Scheme: registration now open

From disAbility e-news, Department of Social Services, Special edition, 12 August 2015:

Business Services Wage Assessment Tool Payment Scheme update

The Business Services Wage Assessment Tool (BSWAT) Payment Scheme (the Scheme) is now open for registration and application.

The Scheme will provide a one-off payment to eligible supported employees of Australian Disability Enterprises (ADEs) who have been paid a pro-rata wage assessed using BSWAT. The Payment Scheme is entirely voluntary, and participants are required to seek independent financial counselling and legal advice, paid for by the Government (subject to limits), to help them make an informed choice.

To be eligible for the Scheme, a person must have, for at least one day in the period starting on 1 January 2004 and ending on 28 May 2014:

• had an intellectual impairment, which includes an intellectual disability, autism spectrum disorder, dementia, or impaired intellectual function as a consequence of an acquired brain injury been employed and provided with employment support by an ADE 
• received a wage based on a BSWAT assessment, or received a training wage while waiting for a BSWAT assessment. 

Other eligibility conditions are that:

• the person required daily support in the workplace to maintain employment in the ADE; and 
• the person has not accepted an amount of money in settlement of, or the court has not ordered payment of an amount of money to the person in connection with, a claim made relating to the use of the BSWAT to assess the person’s wage. 

All eligibility criteria have to be met for individuals to access the Scheme.

You must register to take part in the Scheme. Registering for the Scheme does not guarantee that you will be eligible for the Scheme or that you will be made an offer of payment under the Scheme.

A person can register for the BSWAT Payment Scheme, or find out more information by:

Visiting the DSS website at: https://www.dss.gov.au/bswat-payment-scheme

Phoning the BSWAT Hotline on 1800 880 052

Emailing bswatpayments@dss.gov.au

More information about the the current status of other aspects of the reform of wages in Australian Disability Enterprises can be found in disAbility e-news, Department of Social Services, Issue 221, 28 July 2015:

Weekend reading 15th - 16th August 2015

The words I don’t need anymore 
Sipping Lemonade, 10th August 2015

I spent some time today — procrastinating (let’s call it was it is) — cleaning out the “bookmarks” in my web browser.One particular folder I came across was labeled: “Down syndrome ” ... 

A Parallel Argument on Race and Disability: How Wyatt Cenac Got it Right and Wrong 

Kari Wagner-Peck, A Typical Son, 4th August 2015

... Is it really a leap to consider Cenac might believe that people with Down syndrome are losers who also may not have anything to live for? Otherwise why in his altered state is he suddenly talking in a “funny voice” and believing he just developed Down syndrome? Something informed that hallucination. Those thoughts did not randomly collide, they came from somewhere in Cenac. In other words did a pot brownie free his mind?

It also squares with what most people think of individuals with Down syndrome. It is such a compelling belief that there are existential consequences reflected in the fact most fetuses detected with Down syndrome result in abortion ...

Embracing labels to shape our identities

Carly Findlay, 3rd August 2015

Labels. They’re a blessing and a curse to live with. Fat. Thin. Beautiful. Ugly. Smart. Stupid. Rich. Poor. Athletic. Lazy. Normal. Different. Disabled. Able bodied ..
... Giving myself the labels of ‘disabled’ and ‘chronically ill’ has been very empowering. I feel great sense of belonging – and that’s as big a relief as a diagnosis is. It’s given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that’s committed to improving the lives of others. It’s also given me the courage to speak up and say I can’t do something because of my body’s limitations, and call out discriminatory behaviour ...

The Easy Choicelessness of the Non-Disabled

Dave Hingsburger, Rolling Around in My Head, 11th August 2015

... "I saw what you did there, you almost asked for help." She blushed and laughed, "You saw that?" I said that I had seen it and that I only noticed because sometimes I have to decide to be disabled or not. "My mom still makes my bed," she said and began to laugh, in seconds we were both howling as I understood the implication of her statement ...

Inclusive education means all children are included in every way, not just in theory

Kathy Cologon, The Conversation, 12th August 2015

Recent articles on The Conversation and in The Guardian question whether inclusive education can do more harm than good – but neither article presents examples of inclusion. Rather, they present tragic examples of exclusion that are claimed to be inclusion-not-working ...

What I See When I Look At My Daughter - Raising a Child with Special Needs
Jodi Shenal, 3rd August, 2015

Having a daughter with special needs has changed the way I see most things in this world. Aside from softening my heart and strengthening my spirit, she has given me the gift to see past life’s everyday imperfections. The trivial things that before could destroy a perfectly good day, are now easily shaken off and insignificant. Since she came along, I’ve begun to see a multitude of things in a different light ... 

I wish I could convey to her and to the world what I see when I look at my daughter ...

Hotel training makes room for learning disabled people at work

Nicola Slawson, The Guardian (UK), 4th August 2015

From the familiar purple decor to the signage encouraging guests to re-use their towels, if you stepped into the immaculate bedroom at Derwen College, you’d be forgiven for thinking you were actually in one of the thousands of Premier Inn hotels up and down the UK. In fact it is a fully functioning replica bedroom that has been cleaned and prepared by learning disabled students ...

Latest additions to 'events' pages

Down Syndrome NSW events

Older Parent Network Event 
Wednesday 19th August - Parramatta Park Event Centre, Parramatta Park
Saturday 22nd August  - Mary Mckilliop Place 7-11 Mount StNorth Sydney 

Estate Planning Seminar

Saturday 12 September 2015 - North Parramatta

Other events

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them.

Oddysea
Sydney Opera House - Oddysea is a highly specialised, hands-on, interactive theatre experience for young people with special needs including those with multiple disabilities. Children will experience tactile, hands-on story where touch, taste and smell are as important as sight and sound. Recommended for children 5 - 8 years of age
Saturday 22nd August 2015 - Sydney

Relationships and Private Stuff events

Social events and courses about relationships for people with intellectual disability
August - October 2015 - Burwood, Granville, Winmalee

My Choice Matters events
August - September 2015 - across NSW

Out of Line

Bodylines Ensemble - set in a futuristic school-scape where the enforcement of rules borders on controlling, where self-expression is disallowed, and sameness is the status-quo, the Shopfront Inclusive Bodylines Ensemble present their explosive new live performance work, Out of Line, a remarkable bringing together of over 30 young people with disability from across South East Sydney.

12 noon and 7 pm 27th and 28th August 2015 - Australian Theatre for Young People, Walsh Bay

Catalyst Dance Residency Expression of Interest

The two-year Catalyst Dance Residency Program 2015 - 2016 call for 'Expressions of Interest' is now open nationally to all dancers with and without disability, and closeThursday 3 September 2015 at 4pm.
Key residency dates: 
Year One 2015 - Sunday 11 October – Saturday 17 October - Sydney
Year Two 2016 - Monday 15 August – Saturday 20 August - Sydney 

Smiles for Life: Oral Health Matters

A half-day program (8am to 1230pm) program that consists of presentations given by a Paediatric Dentist, Dietician and a team of Oral Health Therapists that focus on general dental knowledge, targeted oral hygiene and dietary advice, and behaviour management strategies when providing oral care. For family members, carers, teachers, nurses and support staff who care for young peopleThe morning also includes a free morning tea and hands-on workshop. Numbers are limited and registration is essential. Contact Smiles for Life on 9845 7423 or by email WSLHD-SmilesForLife@health.nsw.gov.au
Monday 7th September 2015 - Westmead

All About Us
NSW Council for Intellectual Disability - a social group for young people with intellectual disability aged16-26. In the group people will chat about what is important to them and what they might want to change about their lives and communities. People who come will also have a chance to learn about the NDIS and how it affects them. You will also makes new friends in a safe space. The group is free to attend. If you need any support to attend the group we can help. If you want to come please call Brandon on 9211 1611 or email brandon@nswcid.org.au
First meeting: 8th September 2015 - Penrith Library Theatrette

Employment 101 for Direct Payment Agreement Participants 

Ashurst Australia - seminar on the legal issues that Direct Payment Agreement participants should consider when deciding how to engage carers and support workers. For DPA participants, prospective participants, nominees, carers and support workers. RSVP by Friday 4 September. For enquiries, contact Shiranee Pararajasingham on 02 9258 6240 or shiranee.pararajasingham@ashurst.com
10th September 2015 - Sydney

Intellectual Disability Health Network Annual Forum
NSW Agency for Clinical Innovation
10 September 2015 - University of Technology, Sydney 

The Right Foot
DirtyFeet - creative dance workshops for people with and without disability between the ages of 14 and 26 years, providing a creative activity for those who may otherwise not have access to dance.Free, limited places. Registration is essential.
10am - 1:30pm, 12, 19, 26 September and 3 October 2015 - Glebe

Walk with Me 2015

Northcott - a community walk through Parramatta for people, with and without disability, across western Sydney to raise awareness and support inclusion. Starting at Prince Alfred Park at 11am, the walk will progress through the heart of the Parramatta community and surrounding businesses, finishing at Centenary Square. There will be entertainment, information and food stalls between 12 and 2pm on the day.
Wednesday 16 September 2015 - Parramatta

Launch of new NSW CID website

NSW Council on Intellectual Disability is excited to announce the launch of a new website. A new and improved design layout will ensure ease of access for everyone who is looking for information on all facets relating to intellectual disability.

Screen shot from the new home page

One of the first things you will see on the new home page is a link to information from the We Are Worth the Investment conference held in Sydney in July. You can read/download the presentations from the 2 days.

The NSW Council on Intellectual Disability is the peak body representing the interests of people with intellectual disability in NSW.

Library Shelf: new title

Active Support: Enabling and empowering people with intellectual disabilitiesby Jim Mansell and Julie Beadle-Brown

Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate in all aspects of their lives. The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful activity as active participants, and look at the communication style needed to foster positive relationships between carers and the people they are supporting. Highlighting the main issues for those trying to put Active Support into practice, they explain what is needed on a day-to-day basis to support the implementation, improvement and maintenance of the approach, along with possible solutions for the difficulties they may encounter. Finally, they look at how to integrate Active Support with other person-centred approaches, drawing on examples from various organisations and individual case studies. (Publisher's note)

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.  

Research news and commentary #6 for 2015

First Crnic Institute Graduate Fellowship Awarded

Global Down Syndrome Foundation, August 2015
... Last week, the first Blumenthal Graduate Fellowship in Down Syndrome was awarded to Amber Sorenson. The fellowship is designed to create a pipeline of excellent investigators engaged in Down syndrome research. Candidates are evaluated on the strength of their proposed science and the likelihood such science will lead to improving outcomes for people with Down syndrome ...

Trouble spot in brain linked to learning difficulties in Down syndrome identified

Medical Express, 3rd August 2015
New brain research has mapped a key trouble spot likely to contribute to intellectual disability in Down syndrome. In a paper published in Nature Neuroscience, scientists from the University of Bristol and UCL suggest the findings could be used to inform future therapies which normalise the function of disrupted brain networks in the condition ...

Quantifying Nutrition and Weight Management Challenges with Possible Solutions for Individuals with Down Syndrome 
Caitlin Woglom et al, July 2015
Conference poster presented at Down Syndrome Medical Interest Group meeting in Phoenix, describing four projects conducted by researchers at Massachusetts General Hospital, Down Syndrome Program, Boston and Harvard Medical School.

Dying to Talk - invotation to participate in research

The Dying to Talk project is working out whether a training program delivered to community living staff helps them to have conversations with people with intellectual disability about the end of life. We are checking this by researching with both community living staff and people with intellectual disability. We need to compare people who have received the training program to those who have not (called a comparison group). We are now looking for people to be in the comparison groups.

The researchers are from Sydney University. Contact Michele Wiese on 02 9036 7418 or michele.wiese@sydney.edu.au

Information about two further opportunities to participate in research at Macquarie University and University of Sydney are in this recent post.

Arts access reviewers wanted

From Accessible Arts NSW:

Calling all artists with disability and supporters who attend performances, exhibitions, access programme events and other creative initiatives in NSW. 

Accessible Arts is looking for emerging or professional writers and reviewers to send us reviews for publication in our 'Accessing the Arts Collectively' publication. We want you to hear about your audience experience in relation to access in the arts. 

What worked? What didn't work so well? Who is doing good work? Who tried but failed? 

This is an unpaid opportunity with one review selected for each publication. Word length is 300 - 500 words. You can submit at any time by email to Tammy Brennan, Communications Manager, tbrennan@aarts.net.au

Removing dying and death ‘double taboo’ for people with intellectual disability

From HammondCare, timed to coincide with Dying to Know Day on August 8. It is an annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement. More here.

People with intellectual disability will be helped to overcome a “double taboo” in talking about dying and death through a new toolkit designed to train care staff.

A Chief Investigator with the Dying To Talk project, HammondCare’s Associate Professor Josephine Clayton, said there was already a widespread taboo in society in regard to talking about dying, death and bereavement.

This becomes a “double taboo” for people with an intellectual disability when well-meaning care staff and loved ones seek to protect them from end of life realities.

A/Prof Clayton said the Dying to Talk project has sought to research the needs of people with an intellectual disability in understanding and discussing dying and death and also the best ways of communicating these issues.

People with Down syndrome online and in other media

The Melbourne dance crew changing perceptions of young people with Down syndrome

9 News, 8th August 2015 (video)
A not-for-profit Melbourne dance ensemble will soon travel across the world to raise awareness for people with Down syndrome.

Kew-based group e.motion21 is a volunteer organisation which offers dance and fitness programs for children and young adults born with the condition.

More than 20 dancers from the group will soon perform in front of thousands at the World Down Syndrome Congress in India, where they will work to remove any stigma associated with disability ...

Finding her way: Paso Robles woman with Down syndrome is college-bound

Tonya Strickland, The Tribune, 31st July 2015
When Tricia Alessi graduated from Paso Robles High School in 2008, she watched her younger sister, Gina, go off to college.

It was then that Tricia, who has Down syndrome, asked, “ ‘Why can’t I go to college?’ ” said her mom, Cecile Alessi.

“We looked at each other, and I said, ‘I don’t know why you can’t.’ So we found a way.”

Read more here: http://www.sanluisobispo.com/2015/07/31/3744354_finding-her-way-paso-robles-woman.html?rh=1#storylink

This 25-Year-Old With Down Syndrome Just Published His First Book

Rachel Kassenbrock, The Mighty, 27th July 2015

Marcus Sikora has a flare for the creative. The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments ...

An animated short version of the book, which Marcus Sikora wrote, directed and voices for one of the characters, will be released on DVD around October 1 (trailer below). A “Black Day” music video is also in the works. In the meantime, Sikora is already contemplating the book’s sequel.

ADA at work: Two girls with Down syndrome honored at White House summit
Trisha Thadani, USA TODAY, 25th July 2015
... Just a few days before the Americans with Disabilities Act of 1990 celebrates its 25th anniversary Sunday, the two girls walked into the White House on Thursday, joined by about 140 other college-bound students for Michelle Obama's 2015 Beating the Odds Summit. This summit was a part of the first lady's Reach Higher initiative, in which she encourages students to overcome their struggles and continue their education past high school ...

Oliver's Wildlife and Landscape Photography BookWendy Carroll, IndieGoGo - current
We are raising funds to create Oliver's first official coffee table book, showcasing his remarkable photographic skills and improving positive awareness around Down Syndrome ...

This crowd funding campaign has surpassed its goal (although it remains open) - we are posting this link to let the many people who know and love Oliver Hellowell's work that a book is coming. The first edition of 1000 copies is already selling fast on pre-orders. Congratulations Oliver!

Let's dance!

Out of Line

Bodylines Ensemble - set in a futuristic school-scape where the enforcement of rules borders on controlling, where self-expression is disallowed, and sameness is the status-quo, the Shopfront Inclusive Bodylines Ensemble present their explosive new live performance work, Out of Line.

A Shopfront project in partnership with Autism Spectrum Australia and Kogarah High School, Out of Line is a remarkable bringing together of over 30 young people with disability from across South East Sydney.

12 noon and 7 pm 27th and 28th August 2015 - Australian Theatre for Young People, Walsh Bay

The Right Foot
DirtyFeet - creative dance workshops for people with and without disability between the ages of 14 and 26 years, providing a creative activity for those who may otherwise not have access to dance.Free, limited places. Registration is essential.
10am - 1:30pm, 12, 19, 26 September and 3 October 2015 - Glebe

The Australian Chamber Orchestra's Move Program

Morwenna Collett (Manager Project Controls and Risk at the Australia Council and member of ACO’s Disability Advisory Committee) - report on the 2015 program.

Catalyst Dance Residency Expression of Interest

Accessible Arts Newsletter, July 2015

The two-year Catalyst Dance Residency Program 2015 - 2016 call for 'Expressions of Interest' is now open nationally to all dancers with and without disability, and close Thursday 3 September 2015 at 4pm.

The Catalyst Dance Residency Program is a national artist development program across two years for dance practitioners with and without disability who demonstrate a commitment to integrated dance practice. It will comprise:

• a 7-day Skills and Career Development Residency, Carriageworks, Sydney, 2015 
• a 6-day Choreographic Research Lab Residency with Critical Path, Sydney, 2016

Key residency dates:
Year One 2015 - Sunday 11 October – Saturday 17 October
Year Two 2016 - Monday 15 August – Saturday 20 August

Visit the Catalyst Dance website to apply to this exciting opportunity.

Interested in working in support planning?

SP21, the support planning arm of Down Syndrome NSW, is currently seeking expressions of interest from people who what to learn about support planning for people with disability, with a view to training and possible contract work. 

Email supportplanning@dsansw.org.au for more information.

Weekend reading and viewing: 8th - 9th August 2015

The Greatest Teacher’s Secret School

Sipping Lemonade, 3rd August 2015
One of the greatest teachers I know is a 6-year-old boy. (My 6-year-old boy.)

He runs a classroom full of girls (i.e. his little sisters) and he is always teaching them the most important things in life, like: the difference between a Double A and a Triple A battery, which shade of green crayon makes for the most realistic looking dinosaur and which toys of his are not meant to be touched.

I Wish I Knew

Mardra Sikora, 31st July 2015
I wish I knew…Oh my, we could be here a while. There is no end to what I wish I knew. To what I want to know. To what I am trying to learn and what I wish was just deposited into my tiny brain without me having to work so damn hard for it!

Lately I’ve been reflecting and noticing what I’ve learned over the last few years especially about medical and social issues relating to disability, of course most specifically to Down syndrome as a condition, and the ramifications of trisomy 21 particularly as it pertains to a variety of potential medical implications ...

When it Comes to my Son with Down Syndrome, I’m Not an Optimist

Mardra Sikora, 4th August 2015
A realist, it was explained to me, doesn’t think the worst will happen every time like a pessimist does. A realist takes life for what it is and accepts the whole package. A realist doesn’t invest worry and emotion into a lost cause; a realist deals with what is real.

I Dreamed He Could Talk
Kelli McIntosh (guest blogger), Hope and Encouragement for the Special needs Parent, 31st July 2015

... I heard footsteps and knew Kaylie was on her way down. But when I looked up, it was Kyle who skipped into the room. It was Kyle who opened up his own bedroom door and walked down the stairs. It was Kyle who said, “Good morning, Mom!”

I couldn’t believe my eyes and ears and I was crying and hugging Kyle. Then I woke up ...

I see you
Shannon Dingle, Not Alone, 3rd August 2015
I see you, mama warrior. I see your tears, even as you quickly blink them away. I see your exhaustion, even as you try to hide the yawns. I see your plodding steps, one after another to do whatever it takes for your child.

You’re wondering if you’re doing enough. You’re wondering if you should look into one more therapy or one more device or one more specialist. You’re wondering if all your pushing toward the next goal is unintentionally communicating that your child isn’t enough as he is now ...

Making faces

Lintelfilm PLUS, April 2015
A short film about a professional artist making portraits of adults with learning disabilities as they take part in an art workshop.

Adult with Disabilities Shares What Kids with DisabilitiesNeed to Learn

Andrew Pulrang, Shared Abilities, 1st August 2015
What skills do children with disabilities need to become independent adults? There are plenty of transition planning guides and parenting tips to help answer this question. I would like to offer some ideas to consider, as an adult who was once a child with disabilities ...

City2Surf: only two more sleeps to go!

A big call out to all our wonderful runners who will be lining up this Sunday 9the August to run the City2Surf for Down Syndrome NSW. Keep an eye out for our star participant, Joshua Bamber, who's been training hard for months to lead Team DS to the finish line.  JB is a young (and fit!) 17 year old man with Down syndrome and this is his first major run. Find us at the finish line behind the DS NSW banner and come join the runners and other DS NSW members for a post-race picnic at Bondi to celebrate their achievement. And there is still time to show your support for Team DS NSW over at to everyday hero.  For more details see our Run with Team DS NSW Facebook page. All funds raised by our runners go directly to providing information support for people with Down syndrome and their families across the state. Date: Sunday 9 August Race Time: 8:20am - 10am Contact Ben via email ben.chinnock@dsansw.org.au

News from and for the disability community

National Disability Awards 2015: nominations now open

The National Disability Awards are part of the celebration of International Day of People with Disability (3rd December each year). 

Nominations for the 2015 National Disability Awards opened on 3rd August, giving Australians the chance to celebrate the people and organisations that have made a positive impact on the lives of people with disability. 

The Assistant Minister for Social Services, Senator the Hon Mitch Fifield encouraged people to nominate a person, organisation or initiative in their community that is helping to break down barriers and improve the lives of people with disability.
Nominations for the National Disability Awards close on 4 September 2015.

Details of the award categories and how to make a nomination are here, on the International Day of People with Disability website.

Laws improving rights for intellectually disabled should be national, Human Rights Commission saysNance Haxton, The World Today (ABC Radio), 30th July 2015

Australian-first laws that give people with an intellectual disability equal access to the court system should be implemented nationally, the Human Rights Commission says. It is calling on all states to implement similar legislation to the South Australian Vulnerable Witnesses Bill which passed parliament unopposed yesterday ...

Young carers encouraged to apply for study support funding

Senator Mitch Fifield, Assistant Minister for Social Services, 5th August 2015 (media release)

Applications for the 2016 Young Carer Bursary Programme will open on 18 August 2015. The 2016 Young Carer Bursary Programme will deliver 333 bursaries worth $3,000 each to assist young carers up to 25 years old to continue studying and to relieve the financial pressure on them to work in addition to their caring. 

The Government recognises carers play a vital role in the lives of many Australians, and in our communities more broadly. Young carers often have to juggle part-time work and caring responsibility with their study. 

We want the programme to provide an effective level of financial support to as many young carers as possible ...

Brisbane brothers with disability allowed to stay at home
Amy Remeikis, Brisbane Times, 4th August 2015

After three years, countless tears and sleepless nights, the Leneham family received the news they had been waiting for. Their four boys, Andrew, Bradley, Nathan and Brocke, will be able to stay in the only loving home they have ever known, with Disability Services agreeing to fund at-home care for the family ...

National launch of peer-led network for young women with disabilities

Women With Disabilities Australia, 30th July 2015

Today, the Minister Assisting the Prime Minister for Women, Senator the Hon. Michaelia Cash, is launching the WWDA Youth Network – an initiative of Women With Disabilities Australia (WWDA) – at the Australian Human Rights Commission. WWDA is the peak organisation for women and girls with all types of disability in Australia. WWDA’s Youth Network has been created by and for girls and young women with disability in recognition of the need for a stand-alone initiative that builds the capacity of girls and young women with disability to realise their human rights ...

Resources, publications

A one-day free offer! 

Do your kids love a good mystery novel? The Kindle edition of  Sam's Top Secret Journal - Book 1: Sam Spies by Sean Adelman is currently available for free download for just one day, from Amazon.

Join Sam as she embarks on her first big adventure in this middle-grade mystery full of fun, suspense...and just the right amount of spying! Sam is a middle school girl living a normal life-except when she is occasionally bullied for the differences kids perceive in her. Sam has Down syndrome. See how she and her brother John work together to find some stolen money, help a new friend and escape real danger in this exciting adventure!

Amy Julia Becker reviews a new online resource for parents of newborns from the highly regarded DownSyndromePregnancy.org:

A New (Free!) Resource for Parents of Babies with Down SyndromeParents, 3rd August 2015 

... provides honest, comforting stories alongside accurate, helpful information. It is filled with facts and figures in conjunction with personal perspectives and beautiful photographs of individuals with Down syndrome. I suspect all new parents will find it a helpful guide as they enter into life with a child with special needs and welcome a new baby with Down syndrome ...

Diversity in Disability has released a toolkit for organisations - you might like to pass it on to those that serve you:

These are tools to help you make a difference.
These are resources designed to help you and your organisation make a difference for people with disabilities from culturally and linguistically diverse backgrounds (CALD).
... (It) comprises a suite of exploratory resources on how to:

• Develop your workforce for cultural diversity
• Engage and partner with CALD carers and community to make a difference
• Develop leadership for cultural diversity
• Review where your organisation is at and begin planning for change

Chris Burke retiring from NDSS

Do you remember Chris Burke from his starring role in the 1990s TV series, Life Goes On? Following TV, Chris has had a long career as an advocate with the National Down Syndrome Society (NDSS), based in New York. Chris has decided that it is time to retire, and the NDSS has paid tribute to his work here:

... NDSS Board Chairman Rob Taishoff said, “Chris has been an inspiration to generations of people across the country with disabilities. Throughout his lifetime, Chris has given hope to millions of families who may not have known what to expect when given a diagnosis that their child has Down syndrome. Seeing what he has accomplished makes every parent realize that their child will be able to achieve great things” ...

Chris's advocacy and support for families was international, both through his work as an actor and entertainer, and his speaking and presentation roles at many meetings and conferences around the world. We thank him for his work, and the dedication and fun he brought to it, and wish him an enjoyable retirement.

The first series of Life Goes On is available on DVD for members to borrow from the Down Syndrome NSW library, as is Chris Burke's autobiography, A Special Kind of Hero,  co-written with Jo-Beth Daniel - contact Jo, at library@dsansw.org.au to arrange a loan.

Family facing very difficult challenges

This story is heart-breakingly sad, and confronting for viewers - it is, of course, much more so for the family.

Last night, Channel 9's A Current Affair featured a story about Sharon Chan and her family from country NSW. Sharon has two boys, one with Down syndrome who has just completed treatment for leukaemia. She is about to give birth to her third child, and her husband, Rob, died very unexpectedly last week - enormous challenges for any family to deal with at any time, let alone all at once. The story is sensitively told, and Sharon is a remarkably stoic woman.

A Current Affair's report is summarised online here, along with the 19 minute video from the show. Rotary Australia has set up an appeal for the family, with a link on the Channel 9 page, should you wish to contribute.

5/7/2015: in just two days, the response to the appeal has been huge. See today's ACA video here.

Special Olympics World Games wrap

The 14th Special Olympics World Games  has wrapped up in Los Angeles. Special Olympics Australia's photos from the closing ceremony are here.

The final editions of SO Australia's Aussie Stars newsletter, include the medal tally - for details of who won which medals in each sport, view Aussie Stars here and here:

At Special Olympics we don’t keep official medal tallies because the focus is on individual achievements of people with an intellectual disability, but hey we all like to know how many medals are heading home to Australia!

Team Australia has been amazing both on and off the field throughout the Special Olympics World Summer Games in Los Angeles. So here is the ‘unofficial’ medal tally for Team Australia.

Team Australia 2015 will return home with:

Gold – 23; Silver – 19; Bronze – 18; Place Ribbons (4-8) – 22

Congratulations all round! Thanks to Special Olympics Australia for keeping us so well informed during the Games. Safe travel home.

The Games prompted some thoughtful media articles with wide distribution, like these:

Special Olympics and the Burden of Happiness

Lawrence Downes, New York Times, 31st July 2015

... The glow has to last, because the athletes will need it when they get home and become invisible again. 

This is the conundrum of Special Olympics, an organization so good at making its athletes and the public happy, so bursting with good will and smiles, that nobody has to take it seriously. It has waged a nearly 50-year battle for inclusion and acceptance for people with intellectual disabilities, and people still think it’s a track meet. 

It’s not that the organization has given up the broader struggle, which by many measures is failing. The Special Olympics chairman, Timothy Shriver, convened a round-table discussion at the World Games to try to get world and corporate leaders, the United Nations and other organizations to commit to greater support for people with intellectual disabilities, a group perennially left out of global development programs and priorities. They are not on the world’s agenda, however much their ever-smiling advocates keep trying to put them on ...

Paul Daugherty, sports writer and author of An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter, had two pieces published on Special Olympics during the World Games:

The Special Olympics: Kindness, optimism, a step on the road to joy
Paul Daugherty, Los Angeles Times, 31st July 2015

I've never been crazy about the descriptive "special" as applied to people with disabilities. It's limiting and overly defining. It's everything I've never wanted for my 25-year-old daughter Jillian, born with Down syndrome. I don't want her to be special. I want her to be included. Besides, doesn't everyone believe his or her children are special?
The special in Special Olympics shouldn't be used to describe the disabilities of the competitors. That comes off as patronizing. It should apply to how they compete, though. They are special that way ...

Special Olympics can open your eyes
Paul Daugherty, CentralJersey.com,  1st August 2015

... The Special Olympics are not only about athletes competing, though having witnessed Jillian in several local and state swim meets, I can tell you Special Olympians are as competitive as the rest of us. But more than that, the Special Olympics are about a realized ideal.
Watch these Olympians. See how they interact. The hope they share, the happiness they make, for themselves and each other. We ask our jocks to espouse fair play, to shake hands when they’re done. To show us the uplift that sports can provide. Special Olympians do that instinctively ...

Willing to Work inquiry: national consultations

Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with Disability (Australian Human Rights Commission)

... Consultations are a critical part of understanding the key concerns and challenges, as well as identifying leading practices and effective strategies.
The Inquiry is interested in hearing the views, experiences and ideas for change from as many people as possible ...

Dates and registration information for consultations are now available here.

Willing to Work –  NSW Consultations

• Parramatta 7 August
• Sydney 10 and 12 August
• Albury-Wodonga 3-4 September
• Newcastle 7-8 September

We Can Work with the Right Support: petition and campaign

This Inclusion Australia campaign has the support of Down Syndrome Australia and the NSW Council on Intellectual Disability:

We Can Work with the Right Support is an Inclusion Australia  petition and campaign. Please spread the word about the petition to as many people as possible. Share this email with friends, and post on Twitter and Facebook.

I Can Work
Meet Gerard from Melbourne, and Janine from Tasmania. You can read Gerard's and Janine's stories of working in open employment at "I Can Work".

Did you know?
UK researchers in the 1950s tested beliefs about the capacity of people with significant intellectual disability to work. By 1958, researchers found that while the initial ability on work tasks tends to be low, this initial ability has little relationship with the work capacity achieved with training. This is still true today -- 57 years later! Unfortunately, the current disability employment system imposes job capacity testing on youth with intellectual disability. This often 'brands' them as having little or no work capacity and prevents this group from an opportunity to get the right support to work in the open labour market.

Inclusion Australia is proposing that a new disability employment support system should presume work capacity and provide evidence based transition-to-work and open employment support. Belief + Evidence Based Support = The best opportunity to achieve employment outcomes.

Videos
The campaign web site has a collection of Australian and international videos demonstrating the capacity of people with intellectual disability to work in open employment with the right support. Watch the videos.

More Information
The campaign website contains information about open employment and people with intellectual disability including documents, news, videos, FAQs, and facts and figures.

Inclusion Australia

wecanwork.nationbuilder.com