Tuesday, 4 August 2015

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.

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 ...

Monday, 3 August 2015

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.

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

Friday, 31 July 2015

Weekend reading and viewing: 1st - 2nd August 2015

Dr Brian Skotko, Co-director of the Down Syndrome Program at Massachusetts General Hospital drew our attention to this article, urging consideration of its content in relation to children with Down syndrome:

Teaching Social Skills to Improve Grades and Lives
David Bornstein, New York Times (Opinionator), 24th July 2015
... “These early abilities, especially the ability to get along with others, are the abilities that make other kids like you, and make teachers like kids,” said Mark T. Greenberg, a professor of Human Development and Psychology at Penn State and a co-author of the study. “And when kids feel liked, they’re more likely to settle down and pay attention, and keep out of the principal’s office, and reap the benefits of being in a classroom. And this builds over time; it’s like a cascade. They become more bonded with peers and healthy adults and they become more bonded to school as an institution, and all those skills lead them, independent of their I.Q., to be less at risk for problems.”
This isn’t a new insight. In a national survey, more than 90 percent of schoolteachers said it was important for schools to promote the development of students’ social and emotional skills (sometimes called 21st century skills, noncognitive skills, or character education). But many struggle to integrate this kind of teaching in their classrooms ...
When the urge to 'protect' a child is really a judgement
Jenna Price, Daily Life, 23rd July 2015

... "A lot of the discrimination is couched in political correctness, in people being overly protective of his condition," (Jackie Macedo) says. It also applies to her, she says – people feign concern at the way she manages her work as a chef and her life as a single mother of a child with Down syndrome.
It's part of what is often described as courtesy stigma – the way people treat those who are related to someone who bears a stigma, such as a disability; and was first highlighted by Erving Goffman in 1963. It's not just the intrusive inquires or the staring and pointing, it's also the kinds of devaluing remarks that strangers and even friends make. And, of course, social withdrawal.
It's public disapproval wrought on those who are doing the best they can to make sure their kids are having the best lives possible ...
Carly Findlay, Daily Life, July 27, 2015
... I said I'd like to see fewer stories about people with disabilities told by others. I want to see fewer stories of disability as a burden. I also said I want to see less of parents showing their child's disability on social media until their child can give permission.
I felt pretty brazen tweeting those statements. There is often a divide between people with disabilities and parents , and often I am scared of raising the the issue because I feel some parents may overlook the experience of disabled adults. Many of my writerly friends with disabilities are scared too. Deep breath. I don't want to create a further divide ...
Inside the Growth and Evolution of the Special Olympics World Games
P.J. Brown, Coca-Cola Australia, 28th July 2015  

July 20, 1968, was a glimmer of hope in what was one of the most volatile years in the history of the United States. The country was in turmoil. Eunice Kennedy Shriver was facing her own personal tragedy, as her brother, Robert Kennedy, was assassinated that June.
Yet, she decided to move forward with her plans to use sports to open the hearts and minds of people to those with intellectual disabilities, because she believed everyone deserved to be the best they could be ...
Intellectually disabled gain greater legal rights as bill passes South Australian ParliamentNance Haxton, PM (ABC Radio), 30th July 2015
Legislation promising people with an intellectual disability equal treatment in the justice system has been passed by the South Australian Parliament.
The vulnerable witnesses bill passed four years after a pivotal legal case involving seven intellectually disabled children who were allegedly sexually abused by their school bus driver.
Special Olympics World Games 2015, Los Angeles
Special Olympics Australia volunteer Peter Muhlbock is the official photographer for Team Australia in LA and will be sharing all the great moments of the Games in pictures. Click here to view the latest photo galleries.

The Games finish on Sunday 2nd August (US West Coast time)

Thursday, 30 July 2015

Latest additions to 'events' pages

'Other events' page:
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

Special Olympics World Games 2015 - Los AngelesSpecial Olympics Australia photos from the Games are updated every day - see them online here.
Send a herogram to the athletes here.
25th July - 2nd August 2015 - online

Seminar Series: Disability, Austerity and Resistance
Social Policy Research Centre - Toby Brandon from Northumbria University, Dan Goodley from the University of Sheffield and Katherine Runswick-Cole from Manchester Metropolitan University engage with the intersections of disability, policy, politics and austerity.
12:30 - 1:30 pm Wednesday 5th August 2015 - UNSW, Kensington

SPRC Social Policy Debate: Supported Decision Making
Social Policy Research Centre - the United Nations Convention on the Rights of Persons with Disabilities challenges the current legal assumption that sometimes supported decision making for people with disability must be replaced with substitute decision making because some people do not have capacity to make a decision, even with unlimited support. Is it feasible to change the way we think about supported decision making?
4:30pm - 6:30pm Tuesday 11th August 2015 - Australian Law Reform Commission, Sydney

'It Takes Two to Talk' Hanen Program
Lifestart Northern Beaches  - will be running this program from August through to December. Session schedule here. Orientation night for families to find out more:
7.00 pm Tuesday 11th August 2015 - Turramurra

Key Sign Workshop
Key Word Sign NSW - workshops presented by Meagan Rudd and will cover the use of Key Word Sign and natural gesture to assist individuals who have difficulties with receptive and/or expressive communication. Relevant for anyone living or working with a person with communication difficulties such as family members, education and medical professionals, teacher assistants, child care workers and volunteers. No signing experience necessary.
Saturday 15th August 2015 - Springwood
Saturday 12th September 2015 - Parramatta

Everyone needs a home
InCharge webinar - Stories of creative action to achieve a home. Everyone needs a home. It’s hard to quantify its importance in our lives. Our wellbeing, sense of safety and identity are so tightly bound up in home. CLICK HERE TO REGISTER NOW
12.00-1.15pm AEST Tuesday 18th August 2015 - online

Seminar Series: Housing aspirations, transitions and outcomes of people with disability
Social Policy Research Centre - Ilan Wiesel (Vizel) from the UNSW City Futures Centre will present findings from a recent study funded that identified some critical barriers, but also success factors, that enable people with disability to move into housing which better suits their preferences and needs.
12:30pm - 1:30pm Tuesday 25th August 2015 - UNSW, Kensington

Resources, publications

Library Shelf: new title
Practical dementia care for adults with Down syndrome or with other intellectual disabilities, by Vee Prasher (2014, Nova Science Publishers) is now available for loan to members.
Extract from the publisher's description:
Dementia in adults with Down syndrome or with intellectual disabilities is a rapidly growing field of health and social care. There is, however, limited information available for families and health care providers on how best to manage associated behaviours and difficulties. ... The book primarily emphasises how best to cope with the clinical problems of dementia but does include information on epidemiology, on the common types of dementia and on the historical perspective of dementia in Down syndrome and intellectual disabilities. It discusses the wide range of physical, psychological, social and legal issues of the different levels of dementia from the time of diagnosis to the end of life. The book includes chapters on aggression, epilepsy, drug treatments and end of life issues.
This book is aimed principally at family members and carers, but is also recommended for professionals, including physicians, psychologists, nurses, health related therapists, working in the field of aging and intellectual disabilities ...
Contact Jo in the library via email library@dsansw.org.au to arrange a loan.

Photographer Rachel Callander's wonderful gift to families of children with a disability
Rachel Browne, Sydney Morning Herald, 27th July 2015
... "Sam and I really wanted to balance the negative language around disability," Mrs Callander said. "The images really challenge that perception that disability is something negative. They celebrate ability, they celebrate the child's character and their personality."
... The 75 children featured in the book all have genetic or chromosomal conditions such as Down syndrome, Angelman syndrome and Prader-Willi syndrome.

Wednesday, 29 July 2015

'Women of the Future' semi-finalist

Genevieve with Gerard O'Dwyer,
with their Tropfest awards in 2009
The Australian Women's Weekly is currently running its 'Women of the Future' campaign. Film-maker Genevieve Clay-Smith is well known within our circles for her extraordinary inclusive work with people with Down syndrome and other intellectual disabilities. She is one of the semi-finalists, and readers can vote online now, here.

Genevieve's profile from the AWW page:
Genevieve Clay-Smith, 27, NSW
Co-founder, Bus Stop Films
Genevieve helps students with an intellectual disability make great films. Since winning Tropfest in 2009, she has held weekly workshops to teach special-needs students about film theory and brings in film industry experts to help them. “We are pioneering inclusion within the film industry – there is no other organisation in the world like us that is giving people with an intellectual disability access to producing films,” says Genevieve. They have already made six short films and won 40 international awards. She would use the prize to produce a curriculum and film studies program.
Genevieve is this year's Young Australian of the Year, NSW. 

SO World Games: Australia's photos online

Special Olympics Australia's fabulous photos from the opening ceremony of the 14th Special Olympics World Games in Los Angeles on Sunday can be viewed here. The stadium is huge!

Photos from Team Australia's pre-games stay in host town Huntington Beach are here.

Photos of Australia's first medals are here - look for the gold medal winning ten pin bowlers, including Josie McLean from Sydney. Congratulations!

The photographer is Peter Muhlbock, who has provided thousands of wonderful images for Special Olympics Australia for many years - he'll be one of the busiest members of the team.

The World Games run until 2nd August.

Tuesday, 28 July 2015

Would you like to help us influence the next generation of teachers?

From the University of Western Sydney School of Education:
We are looking for families who would be interested in sharing their perspectives to enhance students’ understanding of how disability influences an individual and family’s everyday life. This might include the challenges, the supports, the frustrations and the joys. 
The students are teachers and therapists undertaking further study because they are interested in working in the field of inclusive education. Their assignment requires them to interview an individual with a disability or a family member for about 30 minutes. We feel it is important for students to listen and learn from families. Therefore, we would like to invite you to provide a student with the opportunity to talk with you about your experiences. Please be assured that, should you agree for you and your child/adolescent to be involved, his/her privacy will be protected with no names or identifying characteristics used in the student’s two assignments, which will be marked by a university lecturer. The students have been fully briefed on issues of confidentiality and the importance of recognising individuals’ rights to privacy. If you agree the interview will be audio recoded. The information obtained from the case study will not be used for any other purpose than the assignments. 
If you would like to participate or have any questions or concerns please contact Kerry Staples, Unit Coordinator at School of Education, University of Western Sydney, Bankstown Campus at k.staples@uws.edu.au.

Calendar 2016: call for photos

It's time to get your cameras clicking to be included in next year's Down Syndrome NSW calendar. Send your image files via email to admin@dsansw.org.au

It is preferred that you send JPEG files that are suitable to print, ie high resolution.

Monday, 27 July 2015

Two research opportunities

Macquarie University Research: Invitation to participate in important research on Down syndrome

Children and adults aged 10 years and above, opportunities for up to 5 hours
Associate Professor Melanie Porter works within the Psychology Department at Macquarie University and is a practicing Clinical Neuropsychologist. She has over 15 years experience researching a wide range of genetic disorders, including Down syndrome.

Melanie would like to invite members of the Down syndrome community to participate in an ongoing program of research into cognitive, academic, social, psychological, motor and neurological features of Down syndrome.

What are the Research Components and What Would be Required?
Cognitive and Academic
Participation in this component would require parents/guardians to complete two questionnaires (taking approximately 5 to 10 minutes each) and they would be asked to participate in an optional 30 minute interview. Participation also requires up to 2 hours of cognitive testing with the person with Down syndrome, looking at things like attention, memory, language comprehension, problem-solving, reading and mathematical abilities.

Social Abilities 
This component involves completing a range of social tasks exploring emotion recognition and social reasoning abilities, taking one hour. Individuals with Down syndrome and their parent/guardian would also be asked to complete questionnaires that explore loneliness, social satisfaction, social behaviour and relationships (10 minutes in total per person). An optional extra one hour component requires participants to view faces on a computer screen while their eye movements are recorded.

Mental Health
This component explores mental health issues (depression, anxiety etc.) from a life-long perspective and requires parents/guardians to complete a 30 minute interview and questionnaires (taking 10 minutes) on their son/daughter’s mental health and behaviour. Where possible, individuals with Down syndrome also complete a short questionnaire on their mental health (10 minutes).

Motor Function
There is an option of taking part in our motor study. This involves looking at muscle strength, gait, posture, motor sequencing and reflexes. This component takes one hour.

Brain Imaging
Older children and adults (15 years or older) can also undertake a structural brain scan. This would involve a non-invasive, painless procedure, where the individual lies in a magnetic resonance scanner (the MRI machine). MRI equipment has been in use in human testing for over two decades with no documented ill effects. It is a bit noisy and claustrophobic, so may not be for everyone. We can send a DVD of the scanner and the sound it makes to those interested.

Participation is voluntary and families may withdraw their consent to participate in any component (or sub-component) of research at any time without consequence.

Research has been approved by the ethics committee at Macquarie University.

Associate Professor Melanie Porter and her team
Work Phone: (02) 9850 6768
Mobile: 0419 221 085
E-mail: melanie.porter@mq.edu.au

University of Sydney research study: Individual Supported Living
How well does individual supported living work? What is good about individual supported living?

You can help answer these and other questions by joining the ‘Quality and outcomes of individual supported living (ISL) arrangements for adults with intellectual and developmental disabilities’ study.

We are asking adults with intellectual and developmental disability to talk to us about living in their own home. We will also talk to other people involved in the arrangement, for example a family member.

There are many things that make individual supported living good and we would like to know what they are.

We will pick 150 people who live in different areas, in different types of housing and with different types of disability.

If you would like to join or if you would like more information, please contact:

Ms Friederike Gadow
Research Fellow, Centre for Disability Studies
Phone: (02) 9036 3611
Email: friederike.gadow@sydney.edu.au  

Applications close this week for positions at Down Syndrome NSW

Reminder: applications for Community Connector positions currently advertised at Down Syndrome NSW close this Friday,  31st July 2015

Saturday, 25 July 2015

Special Olympics World Games 2015: Los Angeles, now!

The 14th Special Olympics World Games in Los Angeles run from 25th July until 2nd August, with the opening ceremony being broadcast live tomorrow morning Australian time. Special Olympics Australia's Aussie Stars newsletter provides information on the telecast:

If you are in Australia, don't forget to watch the 22-minute Road To LA broadcast and the three-hour Opening Ceremony broadcast live from 10.30am (AEST) Sunday 26 July 2015 on ESPN. ESPN is the global broadcast partner for the Special Olympics World Summer Games 2015.
Team Australia have settled into their host town of Huntingdon Beach - Aussie Stars will keep you up with all the news, photos and fun throughout the games. All the information for supporting the team is at the foot of the newsletter page - sign up!

The Games have their own Facebook page, here.

Special Olympics Australia on social media:
Web: www.specialolympics.com.au
Facebook: SpecialOlympicsAustralia
Twitter: @SOAustralia
Instagram: @SOAustralia
You Tube: SpecOAustralia

All the best to every athlete representing their country as a member of Team Australia!

Even Google is taking part in honouring the athletes and the World Games:

Today’s Google Doodle Celebrates the Special Olympics World Games
John Bonazzo, New York Observer, 24th July 2015
On your mark, get set, go! 
The newest Google Doodle celebrates the 14th Special Olympics World Summer Games, which kick off tomorrow and run through August 2 in Los Angeles. The athletes in the doodle are shown stretching, lifting weights, swimming and kicking soccer balls. 
The 2015 World Summer Games will feature 6,500 athletes representing more than 160 countries, along with 30,000 volunteers and an anticipated 500,000 spectators. It’s also the biggest single sporting event in Los Angeles since the 1984 Olympics. 
The games will take place in the same Los Angeles Memorial Coliseum where the 1932 and 1984 Olympics were held, and will also utilize athletic facilities on the USC and UCLA campuses.

Friday, 24 July 2015

Weekend reading and viewing: 25th - 26th July 2015

Advanced test for fetal abnormalities too costly for most women
Craig Butt, Sydney Morning Herald/The Age, 20th July 2015
A maternal blood test that determines fetal abnormalities early in pregnancy is too costly and should be made more widely available, a Medical Journal of Australia editorial argues.
However, women obtaining earlier knowledge of their child's gender and risk of conditions such as Down syndrome raises ethical concerns that the health system must be prepared to face, the editorial's authors warn.
The non-invasive prenatal test is carried out at about 10 weeks after blood is taken from the pregnant woman's arm. The sample contains the DNA of the fetus so doctors are able to determine its gender and risk of Down syndrome or other conditions.
The test has been available in Australia since 2012 but is not covered by Medicare. Women have to pay up to $900 for the test ...

How My Partner And I Protect Our Son From Sexual Abuse
Anne Penniston Grunsted, Role Reboot, 8th July 2015
As a victim of childhood sexual abuse, and now a mother to a 7-year-old boy, one of my driving motivations is to prevent victimhood from becoming a family tradition ... None of the advice on keeping a child safe accounts for a largely non-verbal child who relies on adult help ...

A Perfect Extra Chromosome, 12th July 2015
... The new mom was telling me that they received a pre-natal diagnosis and that all throughout her pregnancy, she was encouraged by doctors and medical professionals to terminate the pregnancy. As she was telling me this, I could feel my blood start to boil and my heart really did ache for this beautiful family. Mom is not from this country, so she has some difficulties expressing herself and getting out the right words, deemed to be a bit difficult. She was not able to stand up for herself in the way that she wanted to ...

Why Person-First Language Doesn’t Always Put the Person First
Emily Ladau, Think Inclusive, 20th July 2015
I vividly remember the first time I learned about person-first language (PFL). I was listening to a professor of special education speak to a group of students on disability “etiquette.” He handed out a sheet with rules on how to address or refer to a person if they had a disability. While lecturing, the professor seemed keen on calling me out, making me feel like a token, and prompting me to agree that when it came to disability, it was PFL or bust. I went along with it, but something didn’t sit well with me. I was born with my disability. It was news to me that calling myself a “disabled person” was an insult. It had always been just a fact of life, a part of who I was. And now, after all these years of calling myself what I am, here was an educator, who doesn’t even have a disability, telling me I had it all wrong.

SP21 at PossAble, Penrith

SP 21 will be at PossAble - the IDEAS Expo 2015 at Penrith Panthers.

SP21 is an independent support planning project of Down Syndrome NSW to help people with any disability get ready for the NDIS. Come over and say hello at stand 60 today (Friday 24th July) and tomorrow (25th July).

City2Surf: 21 runners dor Down Syndrome NSW!

We have an amazing team of 21 runners for this year’s City 2 Surf on Sunday 9th August. There are only a couple of days left to join the team. Will you run for DS NSW?

If you are interested in supporting the team by donating visit our Team DS NSW Everyday Hero page 

Contact Ben via email ben.chinnock@dsansw.org.au

Thursday, 23 July 2015

Resources, publications

New See and Learn app bundles
Down Syndrome Education International'See and Learn Speech apps for iPads are now available together as bundles - offering savings of 20% compared to purchasing the apps separately.

See and Learn Speech is designed to help children with Down syndrome learn to hear the differences between sounds, learn to say individual sounds, practise simple sound combinations and whole words and phrases.

See and Learn Speech includes 5 steps - each available as a printed kit or an app: See and Learn Playing with Sounds, See and Learn Putting Sounds Together, See and Learn Saying Words, See and Learn Saying More Words, and See and Learn Saying Later Words.

The See and Learn Speech Bundle for iPads includes all five apps.

The See and Learn Saying Words Bundle includes three apps: See and Learn Saying Words, See and Learn Saying More Words, and See and Learn Saying Later Words.

New report from NSW Ombudsman 
NSW Council on Intellectual Disability, 13th July 2015: 
People in disability accommodation die 30 years earlier than the community norm! Alongside this alarming statistic the report outlines numerous recommendations to remedy this, many of which NSW CID has been advocating for over the years. Action must now happen. 
The interplay between health and intellectual disability also demonstrates a key reason why systemic advocacy needs to be able to work across multiple systems not just the disability sector.

Wednesday, 22 July 2015

NDIS news and commentary (35)

Control of $20b disability scheme on leaders agenda
Laura Tingle, Australian Financial Review, 21st July 2015
Talks have opened up between the federal and state governments about giving the states early access to a share of $20 billion of funds set aside for the National Disability Insurance Scheme, but there are concerns the states may have to cede control over the massive scheme in return.

The NDIS is expected to be discussed at the meeting of federal and state leaders in Sydney on Wednesday and Thursday, with the federal government proposing changes in the board of the National Disability Insurance Agency (which runs the NDIS) which the states believe may lead to them losing their right to nominate board members and, as a result, their say in how the scheme operates ...

Disability Loop eNews, issue #4, 15th June 2015
Disability Loop is a good way to find out more about the National Disability Insurance Scheme (NDIS) you can sign up for your own copy of the eNews delivered to your inbox, via the website.

Whose NDIS is it anyway?
El Gibbs, Blunt Shovels, 9th July 2015
... Last week, the NDIS kicked off in the Blue Mountains and Penrith with much fanfare from the Every Australian Counts campaign. Parents, politicians and service providers all talked about how wonderful the NDIS is and how much will change for people with disabilities. One person receiving supports from the NDIS spoke, outlining how much things were much better. One ...

NDIS Challenged by Market Size
ProBono News Australia, 16th July 2015
Even with bipartisan support for the National Disability Insurance Scheme governmental and other challenges remain around market size, writes social change strategist Suhit Anantula.

The National Disability Insurance Scheme in Australia is a new way to fund, provide support and enable people with disabilities to have a better life. This is a massive change to the sector and one in which there are multiple challenges from a political, governmental, organisational and individual point of view.

With bi-partisan support the political challenges are mostly gone for now. However, the governmental and other challenges remain ...

NDIS Gobbledegook – What is the difference between a planner, plan manager, a lead provider and a case coordinator?
Sam Paior, The Growing Space, May 2015
Using the terms used in any government agency can be like learning a new language – here’s a guide to a few of the key people you might come across with your NDIS plan ...

A reminder: people with Down syndrome and/or their families and carers can join the new closed Facebook Group, NDIS and Me.

DS NSW: Older Parent Network Event

The overwhelming response to our recent survey on your needs as older parents of adults with Down syndrome identified the top two areas of interest as the National Disability Insurance Scheme (NDIS) and accommodation.

Older Parent Network Event - two events on separate days, at different locations. The topics on both days will be the same:
  • The NDIS and how to prepare
  • Accommodation options, experiences and models
There will be opportunity for Q and A, library resources on a range of topics, and Down Syndrome NSW staff will also be available.
9:30 - 12:30 Wednesday 19th August 
Parramatta Park Event Centre in Parramatta Park (MAP
9:30 - 12:30 Saturday 22nd August  
Mary Mckilliop Place 7-11 Mount St North Sydney (MAP
Please choose the time and location that suits you best.
RSVP: 10th August
Cost: Down Syndrome NSW Members $30 and $35 non-members, morning tea will be provided

Register: Register Here
If you have any questions regarding this event please contact the Down Syndrome NSW Office:
Jane Gilsenan | Community Networks E: jane.gilsenan@dsansw.org.au 

Tuesday, 21 July 2015

Healthy Mothers, Healthy Families Workshops

From the NIB Foundation:
Caring for a child with a disability is a challenge for parents and can come at a personal cost for their physical and mental health. That's why we're proud to partner with the Australian Catholic University to deliver the Healthy Mothers, Healthy Families workshops, offering much needed support to mothers of children with a disability to achieve better health and wellbeing outcomes.

The free workshops will be held in Sydney on 25 July and in Geelong on 21 August and will cover a range of issues including good nutrition, the importance of physical activity, social supports, improved communication, stress management, networking and advocacy skills, and paid work participation.

Occupational therapist, Dr Helen Bourke-Taylor, and women's health general practitioner, Dr Fiona Jane will present the workshops, which will also give mothers the opportunity to meet other women with similar interests, perspectives and life experiences.

These workshops provide an important and positive step forward for mothers of children with a disability and will better equip them to look after themselves in order to maintain a healthy and happy family.

Registrations for the workshops are essential. If you're interested in attending please contact Dr Helen Bourke-Taylor on 03 9953 3736 or email Helen.Burke-Taylor@acu.edu.au

People with Down syndrome online and in other media

Woman with Down syndrome to celebrate 40th birthday by skydiving
Steve Kuhlmann, The Eagle, 16th July 2015
Wendy Erdman likes to remind people as often as she can that while she may have Down syndrome, "we're more alike than different." Her most recent way of proving it: skydiving for her 40th birthday ...
AFL umpires bridging gap between sport and disability through Fiona McBurney Match Day Experience
Ben Waterworth, Fox Sports, 6th July 2015
Lewis Beeby loves to re-live his favourite photobomb. Over and over again ...
Seattle teen invited to White House
Alex Rozier, KING 5 News, 15th July 2015
An 18-year-old from Seattle has been selected to attend Michelle Obama's "Beating the Odds" summit at the White House on July 23 as part of the "Reach Higher" initiative ...

Kate Monaghan, BBC News, 10th July 2015
"I didn't want to work in Asda. I wanted to run my own business," says 28-year-old Laura Green. The young entrepreneur from Runcorn, Cheshire, says that because she has Down's Syndrome people didn't think it was even worth talking to her about her future ...
Canon PowerShot SX40 HS: David Kenward, winner of the My Perspective prize, on how his bridge camera takes him everywhere
The RPS Journal, July 2015
In June, the York-based photographer won the sixth My Perspective prize, awarded to photographers with Down’s syndrome, organised by the Down’s Syndrome Association (and supported by GlaxoSmithKline) ...
Bundy dancer to light up USA
Bundaberg NewsMail, 30th June 2015
A young Bundaberg dancer will have a once-in-a-lifetime opportunity to perform in front of a global audience at this year's Special Olympics World Games. As a member of Brisbane-based dance group Bust A Move Dance, Ellen Randle-O'Sullivan will travel to Los Angeles in July to line up as part of the Games' week-long entertainment ...
And in case you missed the link to Karen Gaffney's TEDs Talk on 10th July, here it is again:

All Lives Matter (14m 27s)
Karen Gaffney TEDx Portland, 30th May 2015
Karen Gaffney left the Rose City and the World in awe with a captivating Talk that explored the history, current state and progress of Down Syndrome. Her idea? All lives matter. Further, we must refine our vocabulary and eradicate “the R word” as the word “retard” has no place in our daily language ...

Monday, 20 July 2015

AFDO Disability Employment Plan Released

Pro Bono News Australia, 14th July 2015
The organisation chosen by the Federal Government to be the primary voice for people with disability has released a five point plan to address disability employment.

The Australian Federation of Disability Organisations (AFDO) has released its response to the Department of Social Services Employment Framework, recommending a move to a market driven approach based on the National Disability Insurance Scheme (NDIS) and practical measures and reform that support Australian businesses to become disability confident.

“Taking into account our looming workforce challenges, it is critical that people with disability and businesses are at the centre of a new employment framework to ensure that people with disability are not left behind,” CEO of AFDO Matthew Wright said.

“Clearly, we have had no tangible change in the last decade and it’s time that we had an open and frank conversation with business about what’s really holding back the employment of people with disability.”

The submission outlines a series of recommendations, including five critical components of a new model
... see more here.
  • AFDO’s submission can be found here.

Latest additions to 'events' pages

'Other events' page:
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
Understanding and contesting institutional disablism
Centre for Disability Studies - one day symposium with Dan Goodley and other international speakers.
Monday 3rd August 2015 - University of Sydney, Camperdown Campus

The Value of Self Advocacy
Centre for Disability Studies - a conversation with Dan Goodley and Katherine Runswick-Cole. Free entry.
Thursday 6th August 2015 - University of Sydney

Family Advocacy - free workshops for families. The NDIS starts in the Nepean Blue Mountains areas from 1st September 2015.
Thursday 6th August 2015 - Penrith
Friday 7th August 2015 - Richmond
Monday 10th August 2015 - Lithgow
Tuesday 11th August 2015 - Springwood

It's Alimentary
Australian Association of Developmental Disability Medicine ( AADDM) Conference 2015 - for doctors and other health professionals working with people with developmental disabilities. A lifespan approach to gastrointestinal conditions in people with intellectual disabilities. Flyer.
13th August 2015 - Sydney Children's Hospital, Randwick

26th Annual Professional Association of Nurses in Developmental Disability Australia (PANDDA) Conference - Choice-Rights-Wellbeing- Practice. “It could be better than you think” Dr Who.
15th - 16th September 2015 - Parramatta

Friday, 17 July 2015

Weekend reading and viewing: 18th - 19th July 2015

Glasses for children with Down syndrome
Sipping Lemonade, 15th July 2015
A couple of months ago, we learned that Kate needed glasses. My first thought (after learning all about her prescription, of course) was: She’ll be adorable in glasses!

My second thought was: Wait — how in the world will we get her to keep them on? ...

Light (music video)

Published 14th July 2015
... in 2014, we had a beautiful little girl with Down Syndrome and two heart conditions. We named her Lucette, which means 'light." Lucie has taught us how much every life matters. This song is for her and all the beautiful people on this planet with special needs. We think that you make this world a better place ...

“The sock is in the dog!”
Wyn Evans, Down's Syndrome Association (UK) blog, 13th July 2015
...  “Where are your socks?” IB’s mum asked. “In the dog!” came the reply. Mum evidently assumed that her girl was struggling to find the right words, but ‘The Boss’ and I both knew that IB was speaking no less than the truth.

You see, we have two Wire-Haired Hungarian Vizsla bitches; Hearth-Rug is twelve years old and Sock-Gobbler two ...

10 things I love about my child with Down syndrome
Kidspot, 14th July 2015
Giving birth to a child with Down syndrome does alter your path through life ... in a way that Kat Abianac would not trade for the world ...

Soccer Photos Capture Special Bond Between Dad and Son With Down SyndromeMelissa McGlensey, The Mighty, 14th July 2015
Henry Pavitt started kicking soccer balls when he was still using a walker — a full six months before he started walking independently.

Henry, 6, from New South Wales, Australia, was born with Down syndrome and a congenital heart disease that requires regular surgery ...

The Threat of Disability: Catastrophe
Sharon Horgan, Criptiques, 14th July 2015
I would love to see disability presented as something to be celebrated and welcomed, not feared. I would love to see a show featuring anything that disrupts the ubiquitous ableist narrative that disability = tragedy. Why is that so impossible to find? Answer: non-disabled people are writing for other non-disabled people. We as disabled people are not included in the intended audience.

The most important role of my life
Vanessa Diaz, Revolucion Latina, 7th July 2015
For as long as I can remember I have craved adventure, a life full of challenges and excitement ... Then I felt it again, fear. I didn’t know what to expect and it scared me to my core. The only thing I knew for sure was that I loved these boys ...

Cultivating successful roles
Libby Ellis, In Charge, 25th March 2014
Lucy and her family have been very thoughtful in creating a role at her local florist. In this article we share the very practical steps they took ...

'Focus on Ability' - voting now open for international category

23 finalists have been selected in the 2015 Focus on Ability Film Festival, run by Nova Employment. Entries come from 14 countries, as well as from within Australia.

Visit the website to check them out  and vote for your favourite film (voting in the International category is now open). Voting closes August 10, 2015. Random voters will be selected and they will win a $50 iTunes voucher. You can also comment on films as many times as you like. To share a film you love on social media, be sure to #focusonability.

Thursday, 16 July 2015


Interaction is the journal of the Australian Institute on Intellectual and Developmental Disabilities (the information, research and development arm of Inclusion Australia). Interaction is principally a print journal, but some articles are published online for a short time.

Currently, two articles from recent issues can be read online:

Perceptions control reality: our family's journey to embracing an inclusionary vision
Catia Malaquis,  Interaction, Vol 28, Issue 2, 2014

Choice does not equal 'informed choice' around inclusive education
Catherine and Andrew McDonald, Interaction, Vol 28, Issue 2, 2014

Both articles, and the link to subscribe to Interaction can be reached here.

The Scoop on Poop
Yona Lunsky and Angela Gonzales, Service, Support and Success, Volume 4, Issue 7: July 2015
... it is not a popular conversation topic, it is also one we tend to veer away from when it comes to the individuals we support. And this is worrisome because it is actually one of the topics that needs to be discussed ...

Service Support and Success is well worth the (free) subscription or a bookmark if you work with or are interested in supporting people with intellectual disability.

Recognising Fathers

Foundation for People with Learning Disabilities (UK), 2009
Ideas for practitioners in education, health, social care and family support settings to involve fathers in meetings and appointments about their children with learning disabilities ...

Wednesday, 15 July 2015

News from the Scrapheap Adventure Ride 2015

The Scrappers are gearing up for Urana, in September:

Perry and the girls trying out this year's Scrapheap Adventure Ride
T-shirts - they are the beautiful colour of the big Australian sky.
Visit the website to learn more about the ride, and how you can support the Ride.
26th - 27th September 2015
Scrapheap riders kick start charity appeal
Michèle Jedlicka, Inverell Times, 14th July 2015
... The ride is a major fundraiser for Down Syndrome NSW, supporting research, education and support for those with Down Syndrome. There are several activities and a generous raffle before the ride to raise money for their charity, Down Syndrome NSW.

Organiser Col Meacham said the state ride has raised over $300,000 since the inception in 2011, and Inverell has been part of that effort.

“We’ve been involved for five years, and we’ve raised $40,000 so far, as of last year,” he said.

“They’re looking for 100 riders, $100,000 this year, and if we look for 15 riders, $15,000 I reckon we’ll be doing pretty good.” ...

Welcome to our new website

Down Syndrome NSW has had a website since 1996 - we very quickly realised how effective the internet was going to be for us, in communicating with families, and with colleagues and professionals around the world, at great speed and low cost. Our website has undergone continual evolution and a few complete makeovers during that almost-twenty years.

Have you checked in lately to www.downsyndromensw.org.au? Go and look right away, and see its latest incarnation - updated, refreshed, easy to navigate, new images - and add it to your favourites or bookmarks for future reference.

Consider passing on the link to others who need information about people with Down syndrome, about events and services - family members, friends, your child's school, professionals who support your family, people in your community.

Tuesday, 14 July 2015

On grieving ...

The Adult Down Syndrome Clinic, established in suburban Chicago for more than 20 years, is a continual and generous source of good information for people with Down syndrome, their families and the professionals who support them, based on unparallelled depth and breadth of experience.Their latest blog entry is sound advice on appropriately supporting a person with Down syndrome who is grieving:

Adult Down Syndrome Clinic, 12th July 2015

... How do people with Down syndrome grieve and how can others help them?There is no one answer that fits all-either for the person that is grieving or the person that is helping ... We have found that many people with DS don’t do well with scheduled “Grief Groups”. Often the ideal time to discuss the person’s grief is when he brings it up and opens the door to a discussion. That doesn’t mean only waiting to he brings it up but does mean being sensitive to when he is ready to discuss it ...
If you need further information or resources on supporting someone with Down syndrome who is grieving, contact the Down Syndrome NSW library: library@dsansw.org.au

Is the NDIS working for people with intellectual disability?

NSW Council on Intellectual Disability media release, 13th July 2015:

Is the NDIS is working for people with intellectual disability? 400 people to discuss this week!

Following the launch of the Nepean NDIS site earlier this month - over 400 people will gather in Sydney this week for a national conference - “We are worth the investment – the NDIS and people with intellectual disability”.

The Chairperson of NSW CID Michael Sullivan, who has an intellectual disability, coined the conference name - “I say the ‘I’ in NDIS should stand for ‘investment’. We are worth the investment. To move forward we need people to believe in us, to back us up, and create opportunities.”

Sullivan is one of over 30 speakers at the conference alongside other self advocates with intellectual disability, NDIS participants, NDIA CEO David Bowen, Hon Mitch Fifield Assistant Minister for Social Services, the Hon. Jenny Macklin, Ageing Disability and Home Care CEO Jim Longley and Every Australian Counts Campaigner John Della Bosca.

The conference will raise issues that have particular significance for people with intellectual disability such as safeguards needed to prevent abuse, housing,health care, children, the closure of ADHC and the provision of support for people with complex needs. It will examine the progress of the NDIS, but also discuss policy for the way forward.

“NSW CID has welcomed the introduction of the NDIS, but we must ensure that it works properly for all people with intellectual disability – some people are especially vulnerable, isolated or may have had contact with the justice system – there needs to be specific strategies to ensure they do not fall through the gaps” says Aine Healy Executive Director Advocacy of NSW CID.

The conference will be the biggest conversation on intellectual disability and the NDIS yet! It will be held over 2 days, July 16 and 17, at Waterview in Bicentennial Park and will act as a catalyst for future systemic advocacy that NSW CID, a peak body for people with intellectual disability, undertakes.

More conference details here.

Media: Aine Healy P: 0418 450 717 E: aine@nswcid.org.au T: #cidconf15

Monday, 13 July 2015

City 2Surf 2015 - still time to support Team Down Syndrome NSW

Down Syndrome NSW is going big with City2Surf this year! Josiah Bamber has been training for several months to run the 2015 City2Surf in August.

Join Josiah in our campaign for the 2015 City 2 Surf and help Josiah become the first person with Down syndrome to run the 14km.

It's getting closer to the starting line - come and join our team!

Sunday 9 August 2015

Team Down Syndrome NSW

For further information or any questions please contact: Benjamin Chinnock at Down Syndrome NSW

T: 0402 503 885 | E: ben.chinnock@dsansw.org.au