Reminder: 'Just a bit ... funny' is on this weekend

Several people with Down syndrome will be performing at the Sydney Comedy Festival this weekend, with Beyond the Square's  Just a bit ... funny project:

Sunday May 4th, 6pm 

The Factory Floor, Marrickville

• Booking 

We will be launching our new online sketch comedy show on the evening where you’ll get to view skits made by and about people with disabilities who have been involved in this two staged project.

The evening will feature some of Sydney’s leading comics with and without disabilities and all this for a good cause… Us! Yes, the night also acts as a fundraiser to keep Beyond the Square going! 

Our MC is the wonderful Tommy Dean with the line up being Alex Wasiel, Dane Hiser, Darien Brown, Billy Freeman, Madeleine Stewart, Phillip Debs & Tracie Sammut plus someone who we’re not allowed to mention! Oooo, mysterious!
The night is fully Auslan interpreted and video segments will be captioned.

Scrapheap Adventure Ride 5: time to start planning

If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome NSW by sponsoring a rider or just donating to the cause.

Scrapheap official website:

www.scrapheapadventureride.com.au

Rider registration, sponsorship and donations:

www.everydayhero.com.au/event/scrapheap

Facebook page:

www.facebook.com/scrapheapadventureride

If you would like more information please contact:

Perry Gilsenen

Benjamin Chinnock, Community Engagement Manager

0402 503 885 ben.chinnock@dsansw.org.au

What I'd say ... "I'm not here to tag along"

To brighten your Tuesday ...

What I'd Say (4 m 17s)



Open Future Learning, published on 25th April 2014
Listen to the words, 'What I'd Say' is a powerful song about our work. It is written and performed by Michael Steinbruck and Andrew Maroko, and stars Roger Crown. Visit www.openfuturelearning.org

Direct link to You Tube

Ph D Scholarship offered at UNE: research project on needs of older people with developmental disabilities

The University of New England is advertising a PhD scholarship associated with the award of a recent ARC Linkage grant.

This is a 3-year project, in partnership with aged care and disability agencies across two states (NSW and Queensland). It aims to examine the ways aged care, social and health needs of people with intellectual and developmental disabilities may be met in rural and urban settings. The ARC project will explore mechanisms that can lead to better integration of the aged care and disability sectors.

Closing date for applications is 15 May 2014.

• The advertisement, with full details of the requirements is here, on Seek.com

News and commentary on the NDIS (20)

Disability scheme supports everyone
Bruce Bonyhady, The Australian, 26th April 2014
"EveryAustralian counts” is the catchcry that has united the disability sector, galvanised the nation to support an increase in the Medicare levy and won multi-partisan political support for the National Disability Insurance Scheme.

For the first 30 years of my life, I mistakenly thought “every Australian counts” was a statement of fact. But from the time, nearly 30 years ago, that my eldest son was born with cerebral palsy, I have seen people with disability do not count. In those days, most Australians with disability were shut into Dickensian institutions. Invisible. Now they are largely shut out from an ordinary life, supported only by loving but increasingly exhausted and isolated families ...

• Bruce Bonyhady, a former fund manager, is inaugural chairman of the National Disability Insurance Agency. He has two sons with disability.
• Alternative link, via Every Australian Counts

Disability groups defend NDIS investment

Rick Morton, The Australian, 25th April 2014
Federal spending on disabil­ity will rival defence funding, ­approach parity with money spent on Medicare benefits ser­vices and outpace all spending on schools in the decades to come, according to Commission of Audit figures.

But disability groups and a conservative think tank said the combined figures for the Disability Support Pension and the Nat­ional Disability Insurance Scheme — which had forecast $36.8 billion of annual spending in 2023-24 — fail to take into ­account other economic ­dividends ...

iPad from NDIS gets Zoe talking and texting

Rachel Baxendale, The Australian, 25th April 2014
Zoe Lovegrove’s increased ability to let her family and friends know how she’s feeling has brought her mother to tears more than once since she received a tablet computer as part of her NDIS plan in December. The 18-year-old, from Bridport in Tasmania, has Down syndrome and often struggles to communicate, but the tablet, coupled with the extra support for her and her family from a caseworker, has made a huge difference ...

Safeguards and the NDIS
NSW Ombudsman, Fact Sheet, April 2013
On 10 April 2013, the Disability Complaints Commissioners met with the CEO of the National Disability Insurance Agency (then DisabilityCare), David Bowen, to discuss safeguards and the NDIS. Mr Bowen advised that it would assist the Commonwealth to obtain the perspective of the 
Commissioners on the necessary safeguards.

Below are the minimum safeguards the Commissioners believe ought to be in place under the NDIS for people with disability. At a minimum, all efforts should be made to ensure that the safeguards for people with disability under the NDIS are at least as robust, transparent and procedurally fair as those available in the current disability system ...

Liberal MP warns disability scheme could be run more efficiently

Margaret Paul, ABC News (online), 15th April 2014
The Liberal MP who is chairing an inquiry into the National Disability Insurance Scheme (NDIS) has guaranteed there will be no cuts or delays to the scheme in next month's federal budget ...

Fear, hope and disability

Kathy Evans, Sydney Morning Herald, 15th April 2014
While not without its problems, the National Disability Insurance Scheme has thrown some Victorians a lifeline ... What has been missing in the general hoo-ha has been the voices of those it seeks to protect. As the first year draws to a close, how exactly has it changed their lives? ...

Paralympic great Kurt Fearnley says the NDIS will benefit the whole of societyMichelle Pain (Hobart) Mercury, 11th April 2014

... (Kurt Fearnley) met Claremont’s Daniel Thomson, 21, who is among more than 500 already benefiting from the NDIS trial.

Daniel, a softballer, basketballer and Special Olympian, has autism spectrum disorder and has difficulty with everyday life skills. Mum Kathy said NDIS support, through Baptcare, had been life changing, and has allowed her to work more.

NDIS related events

Disability and a Good Life: What does it take?

UNSW Says Who? Public Panel Series
Wednesday 30 April, 2014 - Sydney

Parliamentary Joint Standing Committee on the NDIS in Newcastle

The Parliamentary Joint Standing Committee on the NDIS will be visiting Newcastle on 5-6 May.
The committee is to:

• review the implementation of the NDIS; 
• review the administration and expenditure of the NDIS; 
• review any matter in relation to the NDIS referred to the committee by a resolution of either House of the Parliament;

The Hon. Mal Brough MP, Chair of the committee said:

“Our visits to the trial sites are to allow NDIS participants, their carers and family members to tell us about their experience with the NDIS to date. The committee wants to understand the process that people with disability go through to become participants in the scheme, and how they have received and used their package of supports.”

Registration is required to attend: Visit the parliamentary website here

Getting the Best from the NDIS - making it work for people with intellectual disability
August 28 and 29 2014 - Newcastle
This NSW Council for Intellectual Disability (NSW CID) conference will include a focus both on issues of general interest and on:

• Health issues – how health services and the NDIS can work together towards good health and good disability support.
• People on society’s fringe – how the NDIS can be inclusive of people in contact with the criminal justice system and other people with intellectual disability living isolated and unsupported lives.

You can register your interest by emailing info@nswcid.org.au

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

For whom Wade was named
Leticia Keighly, Embracing Wade, 24th April 2014
... Early in my pregnancy I had been told that there was a high chance our baby may have Down syndrome and at 20 weeks it was all but certain. It was a very difficult time for us. We had decided to love and welcome this baby regardless but we worried about telling Jack. Alone with his thoughts, Dot worried it might be too much for him. They had raised a child with a severe disability and had lost him at 19 years of age. They did it with few supports and it was hard. She needn’t have worried because not long after I knew it in my heart that our baby had Down syndrome, Jack said to me, There’s something special about the baby”. Tears streaming down my face he told me he thought I would be a wonderful mother.
Our son was indeed born with Down syndrome and we named him Wade after both Dot and Jack. We visit pop at the nursing home every week and a couple of times a week, he asks Nan if it’s “Baby Day” tomorrow ...
For our readers outside Australia - 25th April is ANZAC Day, the day on which we remember those who have served our nation in war, those who returned, and those who did not.

A royal morning in Canberra

Juliet Rieden, Australian Womens Weekly (online), 24th April 2014

It's been a big morning for six-year-old twin brothers, Oliver and Sebastian Lye, who joined the Duke and Duchess of Cambridge to water the English Oak tree planted by the royal couple in Canberra's National Arboretum ... Sebastian has Down Syndrome, a vision impairment and is hearing impaired, but he doesn't let this get in his way of joining in everything his brother does. The twins both play soccer and they love to swim ...

Are mothers of kids with Down syndrome embarrassed?
Ellen Stumbo, Finding Beauty in Brokenness, 11th April 2014
... I am not offended when people ask a question like this. Not one bit. Why not? Because before my daughter was born with Down syndrome I actually wondered this very thing ... I was terrified to think if that ever happened to us! ... When my second daughter was born with Down syndrome two years later, embarrassment was not even in my radar. But there was a lot of fear. Fear of the unknown, fear of what I thought our lives would be like ...

Special Disability Trusts

Katherine Hawes, Link,Volume 23 - Issue 1 April 2014
All parents worry about their children. However, parents of children with disability often carry the additional burden of what will happen to their child after their own death. The good news is that the federal government’s Special Disability Trust Scheme may just be the way to reduce these worries and find you that all-important peace of mind ...

You will need to register to read articles - registration is free.

Facing Difference

Ian Brown (text), Jaine Hogge (photos), The Walrus, May 2014
Down syndrome in the age of prenatal testing - a photographic project

2014 photo campaign

International Mosaic Down Syndrome Association, 23rdApril 2014

Learning difficulties
Norman Hermant, Lateline (ABC TV), 17th April 2014
For students with physical and developmental disabilities schools that cater to their needs and allow them to thrive are the exception rather than the rule. Video and transcript.

Latest additions to 'events' pages

Links to further information about these events is also archives on the Down Syndrome NSW events page and Other events pages.

Down Syndrome NSW events:

Online Teapot Auction ends today, 5 pm

Other events:

Parliamentary Joint Standing Committee on the NDIS

Town hall style public meeting

5th May 2014 - Newcastle

Sex: Safe and Fun
Family Planning NSW - half day course will enable disability workers and teachers to deliver positive safe sex messages to people with intellectual disability.
15th May 2014 - Newcastle
20th May 2014 - Dubbo
18th June 2014 - Wollongong
10 July 2014 - Ashfield
13th August 2014 - Penrith

Relationships and Dating Skills Workshop

Relationships and Private Stuff
Saturday 10th May 2014 - Burwood

Date-ables Picnic
Relationships and Private Stuff
Saturday 31st May

NSW Disability Industry Innovation awards
A joint initiative of the NSW Government and the NDS (National Disability Services). 

Nominations close Friday 11 July 2014

Getting the Best from the NDIS - making it work for people with intellectual disability
NSW Council for Intellectual Disability conference: info@nswcid.org.au
August 28 and 29 2014 - Newcastle

New football program for women and girls

North West Sydney Women's Football Association (NWSWF) with the support of the City of Ryde is launching a special needs football program. This program aims to provide an opportunity for women and girls in the North West region who have a physical, intellectual and/or developmental disability to participate in the sport of football (soccer). The program will start with an Open Day/Come and Try, followed by eight weeks of coaching/competition and finishing with a Football4All Gala day. 

Sunday 27 April 2014 – Open Day and Come/Try daySundays 4 May – 22 June 2014 – Coaching and games (8 weeks) Sunday 26 May – FNSW Football4All Gala Day 

All games will be played at Morrison Bay Park, Frances Rd, Putney. 

• Flyer - venue and registration and contact details

People with Down syndrome in the media

The Lily Harper Show
AttitudeLive (NZ), 17th April 2014

Lily interviews herself about life as an independent woman and Special Olympic athlete who lives with Down Syndrome. Filled with humour, dancing and even impersonations… this is one show not to be missed! 

Joscelyn Sweeney from Vincentia recounts her brush with Will and Kate

Dayle Latham, South Coast Register, 17th April 2014
Self-confessed royal fan, Joscelyn Sweeney from Vincentia had a dream come true when she met the Duke and Duchess of Cambridge and baby George in Sydney on Wednesday ...

Youth Dance Festival appearance marks big achievement
Luke Mortimer, Northern Star, 9th April 2014
Alstonville dancer Tara Coughlan is a prime example of achievement over adversity.

The 18-year-old from Ballina, who has Down Syndrome, will perform at the Australian Youth Dance Festival in Renmark, South Australia, to be held from April 10 to 16.

She will be accompanied by her friend and duet partner Cassie Warman, 26, from Alstonville who teaches at the Alstonville Dance Studio they attend.

Miss Coughlan practices a variety of dance styles and said she was looking forward to kicking up her heels at the festival ...

My Radio Heart opens up different look at love

Sharon O'Neill, 7.30 NSW, 11th April 2014

Get a look behind the scenes of a love story inspired by Marvel's X-men featuring a collective of differently-abled artists putting their own spin on contemporary music.

Actress's Hilarious Run-In With Jimmy Kimmel
Ali Wentworth, Daily Shot, 10th April 2014
On "American Horror Story," Jamie Brewer plays Nan, the clever and mysterious young witch. The actress, who's been performing since she was a young teen, sees her work as more than just a career ...

What Makes This Film Special Is the Story Behind It

Megan Griffo, The Mighty, 16th April 2014
... Throughout filming, DeSanctis continued to prove himself ... “He’s a good actor,” Dowling told The Mighty. “Not a good actor with Down syndrome. A good actor."
... “I’m not done acting. I’m not close to being done,” he (David De Sanctis) told The Mighty. “I have to act with Jennifer Lawrence before I even think about quitting."

• David Desanctis and Chris Dowling - TV interview with the producer and star of the new feature film 'Produce'

• previous post about 'Produce'

NDSC Film Expert Reviews “Captain America: The Winter Soldier”
Chess Mitchell's latest movie review.

Congratulations on your wedding, Nica and Stephen

Joline Gutierrez Krueger, Albuquerque Journal, 12th April 2014

Ask Stephen Maes and Nica Bierner what they love about each other, and they stare at you as if you have asked the dumbest question in the world. Which you probably have. What don’t they love about each other might be the better question. Why wouldn’t they love each other would be another one.

Standing Out: Down syndrome doesn't stop Braydon Barker Bill Helm, The Bugle, 12th April 2014 Not too many children would name a pig after their favorite NCIS character. But Braydon Barker is not the typical 16-year-old boy. He has Down syndrome. But this genetic disorder is not the only thing that causes him to stand out ... Program offers college experience for those with disabilities Amy Neff Roth, Observer Dispatch, 12th April 2014 Jared Okun wants to go to college. But he doesn’t have the options of most 21-year olds. Okun, a Fayetteville resident, has Down syndrome. He already has a job he loves working in a pizza parlor. But Okun has set his sights on new horizons; he sees himself as a day care or pre-school teacher, a goal he hopes more education could help him meet, he said ... The Talented Mr Digby  websitelaunched The 'About' page gives insight into the broader context of the documentary, currently in production.

Proposed review of Disability Support Pension

No broken promises - Get Real on Jobs for people with disability People with Disability Australia (press release), 22nd April 2014

People with Disability Australia (PWDA) calls on the Abbott Government to honour its election promise to make no changes to pensions in the upcoming federal budget, including the Disability Support Pension (DSP).  We urge the Government to work in partnership with people with disability and their representative organisations to address the jobs crisis and the reality of poverty and disability. Despite assurances by the Prime Minister that people on DSP would not be forced onto Newstart, the Government choose Easter to announce a move to retrospectively reassess thousands of people with disability who are on DSP.  This announcement has caused alarm among people with disability and their families. The reality is that for many people with disability, reassessment will mean being forced onto the lower Newstart payment which is around $160 less than the DSP.  PWDA President, Craig Wallace says, "Moving people with disability onto Newstart and lower payments signals a move into poverty and only makes it more difficult for people with disability to engage in work, training and volunteering.  It means making invidious choices between paying rent, electricity, medication or food, or having to choose between essential disability support and equipment.” "Describing 800,000 DSP recipients as out of control is simplistic and misleading," said Mr Wallace, "debate should focus on support for people with disability rather than portraying people on the DSP as malingerers.  Australia does not have a welfare crisis, it has a jobs crisis, with record low rates of employment of people with disability, including in the public sector." "With the McClure Review on welfare still ongoing, this alarmist announcement is premature and appears to be simply a cost-cutting exercise which avoids the real jobs crisis," said Mr Wallace. "Addressing the great moral challenge that is poverty and disability means focusing on removing the structural and attitudinal barriers that keep people with disability out of the workforce, along with a comprehensive economic participation package designed to employ and retain people with disability in the workforce," said Mr Wallace. "PWDA is ready to work in partnership with the Government to address the issue of economic participation for people with disability,” said Mr Wallace. “We want a fresh start on jobs using the ideas in PWDA’s Get Real on Jobs policy position, rather than attacks on people on the DSP." Media articles: Disability pension for under-35s comes under Coalition scrutiny Bridie Jabour, The Guardian, 20th April 2014 Minister for social services, Kevin Andrews, may renege on promise not to make retrospective changes to DSP AMA gives cautious support to disability support crackdown David Wroe, Sydney Morning Herald, 20th April 2014 An Abbott government proposal to have disability support pensioners independently reviewed has won the cautious backing of the Australian Medical Association, which says it can be hard for doctors to reject patients' claims they cannot work.

Tested to breaking point
Craig Wallace, Ramp Up, 21st April 2014
The Federal Government is considering using independent doctors to reassess whether disability pensioners should continue to receive the Disability Support Pension. Craig Wallace says it is wrong to put vulnerable people with disability through yet more assessments without addressing greater issues around unemployment, discrimination and job training ...
Craig Wallace is the President of People with Disability Australia.

People on the DSP are not wasting money, unlike the politicians who stigmatise them
Michael Vandus, The Conversation, 22nd April 2014
... Like any rehabilitation physician, I would welcome new expenditure to help young disabled people into the workforce. If one starts from the assumption that all DSP recipients are bludgers and require them to ‘prove’ their disability on demand, only hostility and injustice will result. Much better to start from the assumption that extra resources applied in an evidence-based and consumer-friendly fashion will always be the most cost-effective solution ...

Mothers Day photos: email correction

Oh dear - the email address given in the calls for photos for our planned Mothers Day gallery was wrong (yes, both times!).  If you have been trying to email a photo, please re-send to blogeditor@dsansw.org.au

Apologies ... and thanks for sending again!

Photos for Mothers Day gallery ...

Mothers' Day is celebrated here in Australia on the second Sunday in May - this year that will be Sunday 11th May.  For several years we have posted a gallery of photos of people with Down syndrome and their mothers, contributed by our readers.

If you would like to send a photo this year, please do so, to blogeditor@dsaansw.org.au, by Wednesday 7th May.

Note: the correct email address is blogeditor@dsansw.org.au

We look forward to seeing your photos - and thanks for re-sending your photos to the correct address ...

'I can do it!': ways to grow your child's indpendence

The (US) National Down Syndrome Society, based in New York, hosts a series of webinars on topics of interest to the families of people with Down syndrome and professionals supporting them.  The next event is scheduled for:

Tuesday, 29th April 2014, at 1.00 pm (note: this is US Eastern time)

'I can do it!': ways to grow your child's independence

Presenter: Katie Bergeron Peglow, paediatric physiotherapist.

Video and slides from previous webinars are archived online.  Recent webinars have been on:

Your transition questions answered (February 2014)
Empowering individuals with special needs through music (February 2014)
Share the love: a sibling's journey, Parts ! and II (December 2013)

Visit the NDSS website for further information on registration and to access the archives.

Advocacy and rights: news and opinion

Delays fuel fears about future of Disability Commissioner
Judith Ireland, Sydney Morning Herald, 10th April, 2014
Outgoing Disability Commissioner Graeme Innes has flagged concerns that no public process has begun to find a replacement for him in time for his July departure and that the disability role within the Human Rights Commission may be downgraded when he leaves ...

School eliminates boy with Down syndrome from group photo

Eri Iguchi and Yuichi Yamada, The Asahi Shimbun, 13th April 2014
A municipal elementary school in Nagano Prefecture excluded a boy with Down syndrome from a commemorative photo for a newly enrolled class earlier this month to avoid upsetting other parents. According to the boy's mother, the principal told her that the school can have two versions of the group picture taken: one with all the new pupils, and the other without the boy ...

An unlikely hero

gimpled, 14th April 2014
Somewhere in Perth, there lives a hero. The young woman I speak of is only 29 years old. She is an unlikely hero in the eyes of the public – she is severely affected by cerebral palsy and uses an electric wheelchair for mobility ...

Congress To Weigh Police Interactions With Disability Community
Danielle Gaines, Frederick News-Post (via Disability Scoop), 15th April 2014
Patti Saylor will share the story of her son Ethan’s death before a congressional committee later this month, national Down syndrome associations announced Monday ...

Who's afraid of anti-discrimination laws?

Rachel Ball, The Drum, 17th April 2014
Appeals to freedom are essentially calls to prioritise a right to discriminate over fair and equal access to employment, education and services, writes Rachel Ball ...

National Disability Advocacy Program videos
The National Disability Advocacy Program videos are now available on YouTube.

Produced in collaboration with disability advocacy agencies and the department, they ensure people with disability, their families and carers have access to information on the role disability advocacy can play in their life, the responsibilities of advocacy organisations and how to access advocacy support.　

Under the National Disability Advocacy Program the Australian Government funds agencies across Australia to provide people with disability access to effective disability advocacy that promotes, protects and ensures their full and equal enjoyment of all human rights enabling full community participation.

This funding means that people with disability of all ages can receive support from one of these agencies free of charge.

Information about the six advocacy models funded under the NDAP are included, with stories told by people with disability, those who benefited from advocacy support, and the advocates who work with them.

The videos are also available through the DSS website. To obtain a copy or for further information about the DVD or NDAP, email disabilityadvocacy@dss.gov.au

Disability Rights blog
This blog is a project of the Australian Human Rights Commission

'Belonging' survey - about/for young people living in rural areas

Southern Cross University researchers want hear from young people with cognitive disabilities who live in rural areas, what helps them to feel good about their lives:

Excerpt from the information flyer for the 'Belonging' survey

- click on the link for further information, a link to the survey and 

contact details for the researchers

The survey builds on the results of a research project conducted by 30 young people with cognitive disability in regional towns. These young people told us through interviews and photography what matters in their lives. With this survey, we are seeking to understand the things that are important to a wider range of young people.

The research is being conducted by a group of academic and community researchers, led by Dr Sally Robinson at the Centre for Children and Young People (Southern Cross University).

Weekend reading and viewing: 19th - 20th April 2014

Ballerinas in the garden

A whimsical photo shoot of children with Down syndrome, posted on Facebook.  The event was a promotion to benefit the Down Syndrome Guild of Kansas City.

More than 21 quotes from more than 21 people
A video slide show of the popular '21 quotes' campaign from the (US) National Down Syndrome Congress, for World Down Syndrome Day 2014. (7m 51s)
Direct link to You Tube

Inside The Reveal
...  a short documentary capturing the essence of the pioneering art exhibition 'The Reveal' by the artist's collective Heart & Sold, held at The Menier gallery, London in March 2014.

Exhibition tells the stories of people with learning disabilities - in pictures
Guardian Social Care Network (UK), 16th April 2014
The Twenty exhibition documents two decades of change in social care and disability awareness through the eyes of some of the individuals the charity Brandon Trust has supported since it began in 1994 ...

To see or not to see disability
Nina-Marie Butler Ramp Up 17th April 2014
Nina-Marie Butler knows curiosity is simply part of human nature, but she also knows that sometimes people should really just mind their own business ...

Why Your Special Needs Mom Friend Might Be... 'One of THOSE Moms'

Trust Me, I'm a Mom, 1st April 2014

I know you have a special needs mom friend. And I bet you like her, but you're not super close to her, right? Maybe you feel like she never makes time for you or cancels on you. Or maybe you know of a special needs mom & you have no desire to be her friend, well, because she's one of those moms ...

Learning difficulties
Norman Hermnt, Lateline (ABC TV), 17th April 2014
Disability advocates fear a tough federal Budget next month could stymie moves to improve education for disabled children. Only about a third of disabled Australians between the ages of 15 and 64 complete Year 12. For students with physical and developmental difficulties, schools where they can thrive remain the exception, not the rule ...

Latest additions to our 'Events' pages

Down Syndrome NSW events:

Four T4321 High Tea teapots are now up for auction on Ebay.

Other 2014 events:
Holiday Dance Workshop
Sprung
Tuesday - Thursday 22nd - 24th April 2014 - Alstonville, NSW

Disability and a Good Life: What does it take?

UNSW Says Who? Public Panel Series
Wednesday 30 April, 2014 - Sydney

Shut In and Shut Out: Institutions, Segregation and the Promise of Living in the Community

Social Policy research Centre - workshop
5 May 2014 - UNSW, Kensington

Information session on the Compose Study
16th May 2014 - Randwick

Are you ready, Illawarra?
Conference - a joint initiative by The Disability Trust – Sport and Recreation Services, CatholicCare, Interchange Illawarra, Chatter Hands, Wollongong City Council and NSW Government
Friday 16th May 2014 - Wollongong

Keeping Carers Connected

Australian National Carer Conference

16th - 18th November 2014 - Gold Coast

T4321 around NSW, for World Down Syndrome Day

High Tea teapots up for auction on Ebay

As part of the World Down Syndrome Day celebration this year a number of artists generously donated their time and skill to paint 10 teapots to be auctioned. Kara Prior's tea pot At the High Tea held at the State Library we auctioned six of the teapots, the Hon. John Ajaka, minister for Disability Services acquired one. This means that four were retained so that we could offer them for purchase to people who were unable to attend. Four teapots are now up for auction on Ebay. Click on your favourite teapot to make a bid or visit the Down Sydnrome NSW Ebay Store.

T4321 St Patrick's College, Sutherland 

For some years the staff have supported the fundraiser to celebrate Down Syndrome Awareness Day. The morning tea was prepared by the Yr 11 Hospitality Class and the staff were invited by the young hosts Miss Sarah Clark (daughter of Mary Givney-Clark & David Clark) and Miss Ava Bulmer (daughter of Anthea & David Bulmer). The staff value the opportunity to foster greater community acceptance and understanding of people with Down Syndrome. They raised $620!

Yr 11 hospitality students showed their skills in style.

T4321 Cobar
A High Tea fundraiser was held last Sunday March 30 in Cobar, western NSW. 20 ladies helped to raise $800.

Pictured are Michelle, Sharon, Carly and Tahnee at the High Tea.

We called our group Danny’s girls in honour of our 8 year old friend Danny who has Down Syndrome. Danny is a well-known ‘celebrity’ in our town and his mum, family friends, teachers and others were keen to ‘frock up’ for the fundraiser to help a good cause.

This was our second high tea fundraiser for DS and we’ve also previously hosted a ‘Buddy Walk’.

Library Thursday: 17th April 2014 - on reviewing books about people with Down syndrome

Our colleagues at the (US) National Down Syndrome Congress, have developed a set of criteria for reviewing the many books and other resources that they are asked to evaluate and promote, published in the current issue of Down Syndrome News.  They would be useful for choosing books to purchase for your own library, or recommendations for others:

... Our goal is to present books here that will directly benefit our primary reader: parents and family members. Some criteria we consider when reviewing books are:

• Does the publication promote a positive image of people with DS?
• Does it use people first language?
• Does it enhance the dignity of people with DS?
• Does it avoid stereotyping?
• Does it present accurate information?
• Does it recognize the value of person with DS?

NDSC book review

Gross motor skills for children with Down syndrome (2nd edition), Patricia Winders, Woodbine House, 2013 

Every child with Down syndrome should be evaluated for physical therapy intervention as an infant, and nearly every child with Down syndrome will receive physical therapy services at some point. Pat Winders sees children with Down syndrome exclusively, which makes her a unique expert in treating our children. This book is for you AND for your child’s physical therapist, who will benefit tremendously from Pat’s experience. 

Gross motor development in children with Down syndrome is hindered by low muscle tone, increased joint flexibility, other medical issues, and decreased strength, but physical therapy can help overcome these challenges. It’s not so much about helping our children meet their physical milestones sooner, but helping them meet them in the right way — in a way that will serve them best as they grow. As Pat writes, “There are certain crucial results that need to be accomplished early in your child’s development so that he will have a body that is fit and functional throughout his life.” The focus in physical therapy should be on how and what your child learns, not how fast she learns it. (A hard lesson for all parents who like to meet those milestones!) 

This book is for parents of children from birth through early elementary school, and we recommend you share it with your child’s physical therapist. The information here can be read cover to cover, but also as a resource when you need help on a specific area or skill. It’s a book you’ll pull off the shelf again and again as your child learns new things. SJ

Down Syndrome News, Vol 37, Spring 2014

Patricia Winders specialises in the gross motor development of children with Down syndrome. She works at the Sie Center for Down Syndrome at Children’s Hospital Colorado in Aurora, Colorado. She speaks about gross motor skills nationally and locally and serves on the Professional Advisory Committee of the National Down Syndrome Congress. (woodbinehouse.com)

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

Submissions now open for Australia’s only arts and disability conference.

ARTS ACTIVATED 2014 
Creative Connections'

Tuesday 28 and Wednesday 29 October 2014
The Concourse, Chatswood

Arts Activated brings together leading thinkers, artists, advocates, practitioners and producers, with and without disability, from across Australia and overseas. Working together to strengthen Australia’s arts and disability sector. 

Accessible Arts is calling for proposals for papers, performances or workshops that address the 2014 conference theme, Creative Connections. 

The theme Creative Connections invites everyone to present on their chosen topic in ways that facilitate creative connections, with and among, the delegates. You can choose any topic related to people with disability and art, but you need to present in ways that encourage interaction.

Proposals can be in written, audio or video formats. All proposals must be submitted through Smartygrants by Monday, 28 April 2014, at 5pm.

• Further information and links to online submissions, here

Online forum on education and funding reforms open for 2 weeks

Children with Disability Australia has launched an online Facebook forum on education and funding reforms. The forum will run for two weeks, and can be accessed here.

CDA is currently working on an issue paper focusing on future funding for students with disability. We are seeking input about experiences of education of students with disability and views about future reform.

The Australian Government is currently developing a number of education reforms. These include implementing the reforms under the Australian Education Act 2013, national consistent collection of data, More Support for Students with Disability initiative and action regarding the Disability Standards for Education.

Right now, you have the opportunity to contribute your views and ideas.

Down Syndrome News, Spring 2014 issue online

Down Syndrome News is published by the (US) National Down Syndrome Congress
30 Mansell Court, Suite 108, Roswell, Georgia 30076
NDSC generously makes its newsletter archives freely available online, here.

The current issue is now available online:

Down Syndrome News, Vol 37, Spring 2014

Feature articles:

“To the moon”, Bret Bowerman
“You’ve probably seen them bagging groceries,” said the geneticist attempting to explain to my wife and me that our one-day old daughter, Ellie, had Down syndrome and what that meant for her future. Her age was measured only in hours and already, expectations for Ellie’s potential had been capped ...
In English, and in Spanish

Speech Intelligibility: Factors Affecting Understandable Speech (Part One), Libby Kumin
Children, adolescents and adults with Down syndrome have a lot to tell us. But, many times, we cannot understand what they are saying. Speech intelligibility is the term used to describe whether a person’s speech is understandable to a listener. Intelligibility sounds like an objective scientific term, but it is not. It is a subjective judgment made by a listener which can be affected by many factors ...

Book reviews

• Gross motor skills for children with Down syndrome (2nd edition), Patricia Winders, 2013 
• Raising Henry - a memoir of motherhood, disability and discovery, Rachel Adams, 2013
• Who's the slow learner? A chronicle of inclusion and exclusion, Sandra McElwee, 2014
• Wilderness blessing - how Down syndrome reconstructed our life and faith, Jeffrey Gallagher, 2013

Photos for Mothers Day gallery ...

Mothers' Day is celebrated here in Australia on the second Sunday in May - this year that will be Sunday 11th May.  For several years we have posted a gallery of photos of people with Down syndrome and their mothers, contributed by our readers.

If you would like to send a photo this year, please do so, to blogeditor@dsaansw.org.au, by Wednesday 7th May.

Note: the correct email address is blogeditor@dsansw.org.au

We look forward to seeing your photos - and thanks for re-sending your photos to the correct address ...

Two exciting dance/music opportunities with Dean Watson

Image: Pixabay.com

Ever After Theatre Company at Carriageworks

In association with the Ever After Theatre Company's new production of Social Network Stories we are holding a special one off movement class for people with disability.

Led by movement facilitator Dean Watson and accompanied by renowned percussionist Stuart Henderson the group will explore personal movement responses through a range of percussive sounds and rhythm. Numbers are strictly limited!

Carriageworks Track 8
Saturday 3rd May 2014 11am – 12.30pm
Cost - FREE

• Bookings are essential - everaftertheatre@gmail.com or phone 9556 9516

Australian Chamber Orchestra Education: ACO MOVE

ACO Education hosts a series of integrated movement and music classes for adolescents with disability, led by ACO movement facilitator Dean Watson.Over 5 sessions, participants aged 14 -19 years will have the exciting opportunity to become involved with our musicians ... participants will be encouraged to develop an original work of their own.

Students with experience in movement and classical music are encouraged to apply. Numbers are limited. All classes will be held in our Studio at Circular Quay. Classes are FREE of charge and run for three hours. 

2014 Workshop Dates

Saturday 28 June 10am - 1pm
Saturday 5 July 10am - 1pm
Saturday 12 July 10am - 1pm
Saturday 19 July 10am - 1pm
Wednesday 23 July 10am - 1pm

Please note, participants must be available for all 5 sessions.

• Visit the ACO Move web page for further information, a link to download an application form, and a gallery of photos from last year's ACO MOVE workshops.

To discuss your application and for further workshop details, email education@aco.com.au

Living My Way: new video from the Aboriginal Disability Network NSW

Aboriginal Disability Network NSW developed the video Living My Way to enhance understanding about disability in Aboriginal communities. Aboriginal people with disability and their families from around New South Wales allowed us to capture their stories to share and create awareness for others living with disability ... view it online here.

Living My Way
Jake Briggs, Ramp Up, 11th April 2014
... Many Aboriginal and Torres Strait Islander people do not recognise disability or identify as disabled. So, it is important that the implementation of the NDIS in Aboriginal and Torres Strait Islander communities is led by Aboriginal people.

This is a new conversation in many Aboriginal communities so we need to plan for the long-term to ensure the opportunities are realised and that all people with disability are empowered to participate in a truly inclusive society ...

Jake Briggs is Chairman of the Aboriginal Disability Network NSW and works in the construction industry. He is one of the people featured in the video.

Weekend reading and viewing: 12th - 13th April 2014

Life soars on

Sipping Lemonade, 4th April 2014

... After Kate’s Down syndrome diagnosis at birth, I wondered what the future would hold for our family. Would we have more children?  ... Would life go on? Little did I know ... 

To the typical siblings,
Ellen Stumbo, Finding Beauty in Brokenness, 9th April 2014
... You can be annoyed by hands pulling at you, and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears ...
I stood up for my son today and it felt good

Embracing Wade, 5th April 2014

... sometimes I feel like I talk the talk rather than walk the walk. It’s one thing to tell the world from the safety and comfort of my couch about respect for people with disabilities and it’s another thing entirely to tell it to someone’s face ...

The Party

Sally Felkai, Down Syndrome Research Foundation, 8th April 2014

... I stand watching my dear girl with her pals, having the best time. I see that she is not like them but she is also not that different. They all play together and all a little apart from each other. They wander around and find things they are interested in ...

What is Down syndrome? Google Search you will NOT define my daughter...

The Happy Soul Project, 8th April 2014
... Pip has a lot of what these definitions state but she is not defined by it. She is more than low muscle tone, heart defects, and facial features ...

Real Friends?
sassysoutherngal, 9th April 2014
Rachel came home from school yesterday and started asking me questions. “Were you invited to birthday parties when you were growing up, mommy?” ...

Why closing Stockton Centre divides disability advocates: opinion

Sue O’Reilly, Newcastle Herald, 7th April 2014
Around Australia, disability rights activists are baying for the closure of the Stockton Centre, attacking the motives and integrity of anyone fighting to keep it open.

Few, if any, have ever visited the place. Few, if any, have the slightest idea what conditions are like for the 400 or so intellectually disabled people now living there. It could be a Dickensian hell-hole or Newcastle's answer to Club Med. For disability advocates, however, it's completely irrelevant ...

People with Down syndrome in the media

Published on Apr 8, 2014
Trailer for The Talented Mr Digby ...  a feature length observational documentary that follows 26-year-old Digby Webster, a talented Sydney-based artist, on his journey to becoming independent. The film is being made by EDK Productions.

• The Talented Mr Digby Facebook page - posting one of Digby's painting each week.

Adults 'Latch-On' to new jobs
The Clare Champion (Ireland), 29th March 2014
Two years ago, the Clare branch of Down Syndrome Ireland became one of the first groups in Europe to introduce the first literacy program for young people with Down syndrome, entitled Latch-On: Literacy and technology hands-on ...

Childhood sweethearts who both have Down syndrome to marry nearly 30 years after their mothers met at support group for children with disabilities
Jessica Jerreat, Mail Online, 3rd April 2014
When Austin Wayne Underwood proposed to his girlfriend Jessica Smith, it marked a celebratory milestone for the Texas couple, who both have Down syndrome. Austin and Jessica first met when they were three years old, after their mothers connected through a support group for children with disabilities ...

Overcoming the stigma of Down syndrome
Fred Dickey, U-T San Diego,7th April 2014
... Karen still has Down syndrome — you don’t lose that — but no longer does it seem a calamity. But what you can lose, because Karen did it, is the stigma attached ...

David Park, an American professional photographer has put together a tribute to 12 people with Down syndrome (including his own son) for World Down Syndrome Day 2014.  Their stories and photographs are here.

Library Thursday: 10th April 2014

New in our collection
Equity and Full Participation for Individuals with Severe Disabilities - A Vision for the Future, Martin Agran et al (eds), Paul Brookes Publishing, 2013

What key issues and challenges affect the lives of people with severe disabilities today—and what should tomorrow’s professionals do to address them? 

Aligned with the core values and agenda of TASH, this visionary text prepares professionals to strengthen supports and services for people with disabilities across the lifespan. Readers will fully examine more than a dozen critical topics in the lives of people with severe disabilities; explore necessary reforms to policy and practice; and set clear goals and priorities for improving early intervention, education, health care, behavior supports, and social services.  

Whether used as a textbook or a professional reference, this innovative volume will help usher in a new era of services that support full inclusion and quality of life for people with severe disabilities.

Siblings: 2nd edition
A new edition of Siblings, by Kate Strohm has been released in print and as an e-Book available from Siblings Australia or Wakefield Press.

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

World Down Syndrome Day : high tea at the State Library of NSW

Extract from Julie Cromer's speech at the 2014 World Down Syndrome Day high tea, held at the State Library of NSW. Renaming of the Down Syndrome NSW library as The Julie Cromer Library Resource Centre was announced by the Hon. John Ajaka, NSW Minister for Disability:

"Our library has been growing for over 35 years and now houses a significant and comprehensive collection of books, journals and resources about Down syndrome. In fact the collection is the only major resource on Down syndrome in Australia, and numbers over 2000 items. And it has now been catalogued. 

You may well ask why the collection was not catalogued before? The library of DS NSW has never received any funding, not for staffing nor the purchase of resources: so we have creatively managed with support from a grant here and there and donations from user members. 

Recently, when Vice President of the Association I saw that the collection was in danger of fragmenting, so we had to catalogue this important collection, now, to preserve it and house it in appropriate library management software. So what was the way forward here? 

I phoned the State Library NSW. I was happily connected to Barry Nunn of Policy and Partnerships. Barry then contacted TAFE Sydney Library and Information Services Head Teacher, Jo-Ann Bathurst, who advised that two of their top cataloguing students had just graduated: Jillian Seymour and Yan Ling Fen who volunteered to take part in the project." 

We have just heard that Jillian Seymour has received the CreatIT Industry Achievement Award from Sydney TAFE for her work with us in the Library and has been nominated for the State Award as well. Down Syndrome NSW wishes to congratulate Jillian and thank her again for her outstanding volunteer contribution to our library.

Down Syndrome NSW e-Update: #1, April 2014

New resources on sexuality/sex education and assessing consent

New additions to the growing body of good quality information and resources about sexuality education designed to specifically meet the needs of those with intellectual disability are always welcome.  These two are the latest to come to our notice, both are freely available:

Sexuality education is vital for teens with intellectual disabilitiesLeslie Walker-Hirsch, Expert Beacon
... Many parents ask, “Does my child really need sexuality education?” The answer is an emphatic yes. A person with a cognitive, intellectual or developmental disability needs the same information about sexuality that everyone else needs in order to be a safe, healthy and responsible member of the community. This article provides first steps for parents and teachers--and clears up some misunderstandings about social and sexual development of individuals with intellectual disabilities ...

The release of a useful and necessary new assessment tool was announced on Dave Hingsburger's blog, Rolling Around in My Head, yesterday:  

Two agencies, Vita Community Living Services and The Centre for Behaviour Health Science, have worked together since November 23 of 2012 to create a new assessment tool: The Assessment of Levels of Knowledge - Sexuality and Consent (TALK-SC).  

The tool can be used as a pre/post test for sex education or relationship training classes. It also can be used to determine if a person with an intellectual disability can give consent in the area of sexuality and relationships.   

The tool is designed such that if someone, undergoing a consent assessment, does not pass, the score will give information that will allow education to be pinpointed to the exact areas of need. TALK - SC will be released tomorrow, free of charge.  

Any clinician, educator or agency who wishes a copy of the assessment tool may simply request one by sending an email to dhingsburger@vitacls.org

The Down Syndrome NSW members' library holds several books and videos useful for supporting sex/relationship education for people with Down syndrome from an early age.

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

Compose Study - information session, Randwick

The Compose Study is recruiting participants with Down syndrome in NSW now.  Information sessions are also scheduled for other states:

Prof Rhoshel Lenroot - profile

RSVP email: k.burton@neura.edu.au

Compose website

• Press interview with Dr Helen Leonard: New drug hope for people with Down syndrome, Connie Clarke, The West Australian, 18th December 2013