Resources, publications

New See and Learn app bundles
Down Syndrome Education International's 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.

• Report of Reviewable Deaths in 2012 and 2013 Volume 2: Deaths of people with disabilities in care

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) 

or

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 

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 ...

The business owner with Down's Syndrome

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 ...

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

Families Getting NDIS Ready

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

Enable the Future

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

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.

Resources

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.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here.

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 ...

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.

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:

Grief
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

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

Free 'Getting NDIS Ready' workshops: Blue Mountains, August

For Family Advocacy's detailed 2 page flyer and registration form, click here

Family Advocacy is an independent and impartial advocacy organisation that works with families across New South Wales to promote and defend the rights and interests of people who have a developmental disability.

Weekend reading and viewing: 11th - 12th July 2015

Keeping Up With Chris
MiniDoc: Attitude TV, 8th July 2015 (3.00 m)

... At just 22 years old, Chris combines part-time work with university study as well as a demanding gymnastics training programme ...

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 ...

Kids with disabilities make friends more easily when they're learning not playing
Lori E Meyer and Michaelene M Ostrosky, Quartz, 2nd July 2015

Friendships provide children with joy, laughter and comfort. They may also prevent later bullying and support smoother transitions into kindergarten for children with a range of disabilities. Friendships are considered a vital developmental milestone for all children.
Yet, developing close relationships may be difficult for some children. This is especially true for children who enter school without well-developed social-emotional skills. About 40% of children with disabilities, for example, enter kindergarten without developing age-appropriate skills in this area ...

Hospitals and fighting for breastfeeding (all over again)
Beautiful Little Souls Blog, 4th July 2015

... I believe that this nurse took things further and pushed against going back to the breast because of Elva’s diagnosis. She saw Down syndrome and an ASD and simply assumed that Elva could not cope with breastfeeding. In hindsight there were several times that things were assumed about how Elva was fed based purely on her diagnosis. Several people assumed that she was on formula, a few that she was always tube fed and every single person was visibly surprised that she was exclusively breastfed, and was doing so well with it and without issues ...

Non-invasive prenatal testing for Down's syndrome - beyond the hype
Jane Fisher, BioNews, 22nd June 2015

... One thing NIPT will not change is the devastating impact of a confirmed prenatal diagnosis within the context of a wanted pregnancy, so we must be vigilant in employing the highest standards of care for expectant parents in this circumstance and support their individual choices.

Abuse and neglect of people with disabilities demands zero-tolerance response
Patsie Frawley and Susan Balandin, The Conversation, 7th July 2015

Violence, abuse and neglect of people with disabilities have historically been driven by exclusion, discrimination and institutionalisation. While the disability system has undergone significant and important reforms over the past three decades, many problems remain. We’re still failing to protect people with disabilities ...

Latest addition to 'events' pages

Down Syndrome NSW events:

Estate Planning Seminar
DS NSW will host an estate Planning Seminar in September. Our presenter will be Jonathan Harris from Harris Friedmann Lawyers. The workshop will address many important legal topics that families of dependents with disability need to be aware of.
Saturday 12 September 2015 - North Parramatta


'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

Get More Skills: A Good Life workshops 

My Choice Matters events - for people with disability and their family members. Free, but registration is essential. Click here for links to individual flyers:

10am - 1pm 14th - 29th July 2015 - Newcastle, Parramatta, Castle Hill, Penrith

Get More Skills: A Good Life workshops + expo
My Choice Matters events targeting those people who are currently funded, and using ADHC service such as accommodation and community access. Free, but registration is essential. Click on the links below for individual flyers:
10am - 2pm Tuesday 28 July - Woy Woy
10am - 2pm Wednesday 29 July - Gosford
10am - 2pm Thursday 30 July - Tumbi Umbi

World Down Syndrome Congress - programme feedback survey

Received from Down Syndrome International:

The World Down Syndrome Congress 2015 programme is now available to view on the WDSC website. We hope it provides a high quality mix of unique expert insight into all things Down syndrome, while celebrating our visit to wonderful India!

Click on the link below to access our WDSC Programme Feedback Survey.From here you can view the programme and we would really appreciate you completing our survey. Then why not register (if you have not already) to join us in Chennai 19-21 August 2015:

https://www.surveymonkey.com/s/2BK9RTS
We would like to get feedback from the global community so we can make reasonable changes that people feel strongly about, both this time and for WDSC 2018.

We would like to hear from you as previous WDSC attendees. We would also be very grateful if you share this survey with as many of your friends and contacts as possible. That way, we can make WDSC a truly global meeting with something for everyone.

Please note: individuals who complete the survey will qualify for discounted registration fees equivalent to early rates, which are otherwise no longer available. So there is an extra incentive to complete this survey. Contact Roxy Harley roxy.harley@ds-int.org if you want to benefit from reduced fees.

Please help us to improve the WDSC experience by completing this survey today and sharing it as widely as possible.

Thank You

Andrew BoysDirector
Down Syndrome International
Email: andrew.boys@ds-int.org Website: www.ds-int.org

Resources, publications

Library Shelf - new title in the Down Syndrome NSW Library

The Sibling Survival Guide: Indispensable information for brothers and sisters of adults with disabilities, Edited by Don Meyer and Emily Holl, Woodbine House
This book has been written for adult and teenage siblings of a person with disability. Some of the areas covered include:

• statistics and research about siblings
• younger siblings' feelings
• impact on your life decisions
• caring for multiple generations
• ageing and disability
• taking care of yourself
• future planning

DS NSW members can borrow books from the library - contact Jo in the library via email library@dsansw.org.au

World Down Syndrome Congress - program 
The 12th World Down Syndrome Congress will be held in Chennai, India in August. The program is now available online here.

CAP THAT!
... is a national campaign asking Australian educators to simply turn on captions on videos shown in class to boost learning and literacy for all students.

The CAP THAT! website provides links to download its infographics
explaining how students benefit from captions,
and how to use them.

NDIS and Me - closed Facebook group

Social media, including Facebook has allowed people with disabilities and their families unprecedented access to the support of others with similar interests around the world, all the time, very inexpensively. 

That freedom also comes with a degree of vulnerability, so higher levels of privacy, and the oversight of administrators makes closed Facebook groups more secure for all. 

We have just passed the second anniversary of the implementation of first trial sites for the national Disability Insurance Scheme, and the full roll out is on its way. It has been called the biggest social change in Australia since universal health care, in the form of Medicare, was introduced in the 1970s. The NDIA is using many different platforms to promote the transition to the NDIS. This one is specifically for people with Down syndrome and their families:

NDIS and Me is a closed Facebook group for Australians with Down syndrome and their families. The aim of the group is to help its members to get ready and get the best outcomes they can from the National Disability Insurance Scheme (NDIS).

This Facebook group is just one of a number of Local Support Groups (LSG) being set up across the country by peer support organisations. Most LSGs will be face-to-face groups in local places, but you can take part in this group, wherever you are in Australia. We hope that people already in the NDIS as well as people yet to sign up will join this group to share information and support.

The group is funded by the NDIA and its goals include that people will learn how to:

• Exercise choice and control
• Effectively engage with the NDIS
• Effectively engage with mainstream programs, services and activities
• Increase opportunities for independence, self-management and community inclusion

DSWA runs the group with support from DSNSW and DSV.

• Get more information and request an invitation to join the closed Facebook group here.

Working

Employment has many dimensions for everyone - for people with Down syndrome there are extra considerations, arising largely from a history of low expectations that 'employee' was a role that most would ever fill. This post highlights just a few of the increasing variety of jobs that some people with Down syndrome hold down now, at the same time as some struggle to find a job at all:

Cafe in Istanbul only employs workers with Down syndrome

Daily Sabah, 20th June 2015

At first glance, there is nothing out of the ordinary in Down Café located in one of the more well off neighborhoods of Istanbul.

The hint is in the name. Indeed, all 25 employees, aged 18 to 25, have Down syndrome.

"Down Cafe was established to create employment and increase the self-confidence of young people with Down syndrome," says Saruhan Singen, who opened the café in Sisli district of Istanbul ...
Maddie Stuart, model with Down syndrome, lands her first gig with fitness brand Manifesta

Jenny Noyes, Daily Life, 7th July 2015

... Stuart has landed her first modelling contract, fronting a campaign for body-positive activewear brand Manifesta, which designs clothes specifically with curvy women in mind .... it also showcases its clothes on strong, healthy women of all shapes and sizes ...

Ethical Hotel managed by staff with Down Syndrome

Annalisa Lista, WEST, 22nd June 2015
Italy’s first ethical hotel has opened in Asti, run by staff with Down’s syndrome. It has 21 rooms and a staff of impeccable waiters, receptionists, sommeliers and tour guides with Down’s syndrome offering a wide range of services, with something for everyone ...

A first for the Minneapolis Police Reserves
Everyone Employed, 1st May 2015
Ever since Sam was young he has been passionate about helping others in his community, information that was discerned during the early phases of his employment discovery journey. More recently, it has become clear that Sam has developed a strong interest in law enforcement and detective work ...

Research news and commentary #5 for 2015

Genetic disorders in children: An assessment of fathers coping strategies, wellbeing, and support

Find Lab (Family Interaction and Neurodevelopmental Disorders) is based in the School of Psychology at the University of Newcastle, Australia.

' ... (our research) acknowledges the importance of family and social support in promoting health and well-being in vulnerable children and young people. In particular the focus of our research is on young people with Neurodevelopmental Disorders such as 22q11.2 deletion syndrome (also known as velo-cardio-facial syndrome), Williams syndrome, Prader-Willi syndrome, autism spectrum disorders and their families. We also investigate the Mental Health of Parents and the impact of mental health issues on child development. This research includes biological and foster carers with and without mental health issues.'

You are invited to participate in this study as a father or male caregiver of a child diagnosed with a diagnosed neurogenetic disorder (such as 22q11.2 deletion syndrome, Velo-cardio-facial syndrome, DiGeorge syndrome/sequence, Fragile X, Down syndrome, Prader-Willi syndrome, Tuberous Sclerosis, etc.).

The online survey asks about experiences of well-being, coping styles and access to support.

• Contact: Kirsty Rudd, Kirsty.Rudd@uon.edu.au

Thick cortex could be key in Down syndrome

Drexel University,  19th June 2015
The thickness of the brain's cerebral cortex could be a key to unlocking answers about intellectual development in youth with Down Syndrome. It could also provide new insights to why individuals with this genetic neurodevelopmental disorder are highly susceptible to early onset Alzheimer's Disease later in life.

Dementia diagnostic criteria in adults with Down syndrome 
Rosalyn Hithersay, Learning Disabilities Elf, 5th June 2015

... Although we may think of dementia as covering a range of diseases that mainly affect people’s memory, in people with DS, carers may see personality changes and problems with planning and controlling behaviour before memory problems are noticeable (Ball et al., 2006).

As dementia may develop differently in people with DS, we do not know if the criteria that we use to diagnose dementia in the general population are suitable for this group ...

Down Syndrome Education International Research Forum (UK)
The Down Syndrome Research Forum is a regular international event, sponsored by Down Syndrome Education International, where researchers and practitioners meet to discuss current research, recent findings and implications for practice. Call for papers now open, closes 26th June 2015.

22nd - 23rd September 2015 - London

Can we model the development and maintenance of self-injury in children with developmental delay?

Alix Dixon, The Learning Disabilities Elf, 1st July 2015

Self-injurious behaviour is demonstrated in some children with developmental delay and is known to have a substantial impact on the well being of the children and their carers. Studies suggest that the prevalence of self-injury in children with severe learning disabilities is around 17% ...

Lines of Inquiry June 2015 - Centre for Applied Disability Research newsletter

Key Word Sign Workshop - Karuah

Key word signing workshop is coming to the Hunter! Limited places left.

This event is free for members of Down Syndrome NSW but registration is essential.

Local DS NSW member Olivia Hurstfield has organised Hands Can Talk to give a half day workshop on school based key word signing. Staff from local schools and community organisations will be attending as well as parents.

The session will cover

• Approximately 80 everyday signs used at school 
• Different situations where signs can be introduced 
• Techniques for remembering & practicing signs 
• Survival signs covering play, behaviour, lunch, recess and classroom activities. 

This is a great opportunity for school staff and parents to learn the same signs and techniques and be consistent at home and school with signing.

10am—12.30pm Monday 13th July 2015
Karuah RSL Club, Tarean Rd Karuah

Contact admin@dsansw.org.au to register or call 1800 811 629

Accessible Arts Grants Program 2015-2016

Accessible Arts is the peak arts and disability organisation across New South Wales.

The Grants Program consists of Quick Response Grants up to $5,000 and Small Grants from $5,000 – $20,000 over two-grant rounds in 2015 and 2016.

Accessible Arts highly encourages applicants to consider artist with disability led projects and/or integrated projects with artists with and without disability as part of their application.

Applications are invited from across NSW and across all artforms. Applicants from regional and remote NSW are particularly encouraged to apply. Small Grants applications close this Friday, 10th July 2015.
Visit Accessible Arts website for more information.

Positions Vacant - Down Syndrome NSW

Down Syndrome NSW is currently looking for passionate, energetic and committed individuals to fill casual Community Connector positions in its National Disability Insurance Scheme (NDIS) Disability Support Organisation (DSO) Capacity Building Project.
The NDIS DSO Capacity Building Project team will be setting up local chapters of the Up! Club group, across various locations around New South Wales.

The goal of each local Up! Club group will be to build the social networks and capacity of people with Down syndrome or another intellectual disability, and their families to:

• Exercise choice and control
• Effectively engage with the NDIS
• Effectively engage with mainstream programs, services and activities
• Increase opportunities for independence, self-management and community inclusion.

1. Community Connector – Western Sydney and Blue MountainsThis position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability in the Western Sydney and Blue Mountains region.

The successful applicant will be based in the Western Sydney / Blue Mountains region, with strong networks in the local community.

The position is approximately 20 hours (2-3 days) per month – mainly weekends.

2. Community Connector – Far North Coast This position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability on the Far North Coast of NSW.

The successful applicant will be based on the Far North Coast, with strong networks in the local community.

The position is approximately 10 hours (1-2 days) per month – mainly weekends.

3. Community Connector – Mid North Coast This position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability on the Mid North Coast of NSW.

The successful applicant will be based on the Mid North Coast, with strong networks in the local community.

The position is approximately 10 hours (1-2 days) per month – mainly weekends.

For more information:
If you would like an information package please email admin@dsansw.org.au – specifying the position that you would like information about in the email subject line.

Applications close Friday 24 July 2015.

Weekend reading and viewing 4th - 5th July 2015

Jillian The Magnificent takes vows

Paul Daugherty, Cincinnati.com, 29th June 2015
... I don't know what it's like to scale Everest or to create a polio vaccine or bloop base hit No. 4,192 onto the plastic at Riverfront Stadium. I couldn't tell you how it feels to be elected president or walk on the moon ...

I know lifetime achievement, though. I know what it's like to spend every minute of every day working to defy perception and stereotype and How It's Always Been, in the pursuit of another person's happiness, and by extension my own.

At about 6:10 Saturday night, I was Edmund Hillary and Pete Rose, Jonas Salk and Billy Hamilton. That's when Jillian The Magnificent became Jillian Daugherty Mavriplis ...

The Down's Syndrome woman who shattered Stephen Nolan's prejudices

Stephanie Bell, Belfast Telegraph, 24th June 2015

... What a difference a few decades and a group of determined parents can make. When their daughter Louise was born with Down's Syndrome, Newry lawyers Emer (72) and Alan (73) Cleland couldn't have been given a more negative forecast of what the future would hold for their little girl ... Today, Louise is a happy 33-year-old doing her dream job of working as a classroom assistant in a primary school in Warrenpoint, having passed her NVQ levels 1 and 2.

Fast-forward 30 years and the birth of little Embarr McCourt, from Armagh, couldn't have been more different.

This time when parents Tom (46) and Gemma (36) left hospital with their little girl it was with the most encouraging words from a consultant ringing in their ears.
They were told that they had no idea yet of the joy that Embarr was going to bring and that their lives would be enriched by having a child with Down's ...

The secret teacher got it wrong: a response to 'I am all for inclusion in principle, but it doesnt always work
Cátia Malaquias, Global Observatory for Inclusion, 25th June 2015
This is a response to the article published on 23 May 2015 by The Guardian ...

What is “inclusive education”? Many, like the Secret Teacher’s school, profess to strive for it. Many, like the Secret Teacher’s school, profess to practice it. But the practical reality is that too often, inferior formulations are wrongly labelled “inclusion” and sold to students with disability, to their parents and to their teachers as meeting or even exceeding the mark – many drink it (or are forced to drink it) none the wiser as to its quality or limitations ...

Why I Post Photos of My Child with Down Syndrome OnlineAmy Julia Becker, Parents.com, 29th June 2015
When I first considered blogging regularly about our oldest daughter Penny, who has Down syndrome, I had to think long and hard about sharing Penny’s image online. Not only does it involve the risk of strangers seeking her out and the possibility of someone stealing her image, but the internet is also full of sites that intentionally mock people with Down syndrome.

In spite of all the risks, I share pictures of and stories about Penny every chance I get ...

Dear Pixar: 'Inside Out' and Papercut Death
Jisun Lee, Kimchi Latkes, 22nd June 2015
... So I took my kids to see 'Inside Out' last week. It was good. Until it wasn’t.

There I sat, at the peak of the story arc, watching Joy and Sadness hang on for dear life while their buddies inside headquarters tried to figure out how to break open the glass and let them in. It was tense. Would they make it in? Would Riley get back in touch with all her feelings? Disgust had a righteous idea when she made Anger so mad he broke the glass open. Clever.

But why, Pixar, why???

These moments are little, I admit it. It isn’t like the punch to the gut that I feel when I hear short bus jokes or see that stranger stare at my child like he’s contagious. Instead, jokes like the one you made in Inside Out are like little paper cuts. Little stings that remind me that the world thinks that my kid’s existence is something that no one wants. In case I forget, you know. Wouldn’t want that.

Let’s not break up, Pixar. You seem like a decent force for good ...

Down Syndrome Australia welcomes Federal funding

Down Syndrome Australia posted this excellent news late yesterday (2nd July 2015). 

Recent difficulties in securing Federal funding were reported here, here and here:

Step in the right direction on federal funding

The Australian Federation of Disability Organisations (AFDO) has secured a $600,000 funding commitment from the Federal Government to work with ten national organisations representing people with disability and their families.

The funding will allow AFDO to identify practical solutions that can support people with disability to access information, peer support and best practice specific to their condition and build the capacity and self-sustainability of people with disability organisations.

AFDO CEO Matthew Wright said the Federal Department of Social Services funding was a “step in the right direction”.

“This is a welcome announcement which will enable specialist people with disability, representative and family organisations to keep their doors open this year and to continue to provide important support to over 200,000 Australians with disability. However there is still work to be done to secure our future” said Mr Wright.

“This is a step in the right direction and reflects an understanding that specialist people with disability, representative and family organisations play a valuable role in supporting the community and building an NDIS.

“I am very pleased with what our ten organisations have achieved working collaboratively to ensure that every person with a disability has a voice.”

“Two national organisations, through AFDO, will receive Federal funding for the very first time, including Down Syndrome Australia and Autism Aspergers Advocacy Australia. Mental Health Australia will also receive funding to build the capacity of mental health consumer and carer voices.”

CEO of Down Syndrome Australia Ruth Webber said it was the first time ever that Down Syndrome Australia had been funded by the Federal Government.

“We welcome the recognition of the important role we play for the Australian Down syndrome community and the support we provide to over 4000 people with Down syndrome and their families. This funding enables us to develop additional resources to support new parents and to provide information to adults with Down syndrome about the opportunities the NDIS can bring to make more informed choices,” Ms Webber said.

Our organisations look forward to working collaboratively with the Federal Government.

“We would like to thank Minister Fifield and the Department of Social Services for this important step forward. We will work collaboratively with DSS to ensure we build the capacity of our organisations as the NDIS commences full roll out,” said Mr Wright.

“AFDO and our ten people with disability, representative and family organisations would like to publicly acknowledge the significant support we have received from departmental staff, advisors, ministers, people with disability, carers and service organisations and the media. I have been overwhelmed with the support we have received, reflecting the value that Australians place on the importance and contribution of people with disability broadly.”

Matthew Wright, AFDO CEO

To download this article as a PDF, visit the AFDO website where the story was originally published.

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

2015 Trevor Parmenter Lecture
The lecture topic, The potential of dis/ability to rethink the working of civil society, is in keeping with Emeritus Prof Trevor Parmenter's commitment to making the world a better place for all. Information flyer, online booking / or registration form.
Friday 31 July 2015 - Camperdown


2015 IDEAS Possability Expo

24th - 25th July 2015 - Penrith

News and commentary on the NDIS (34)

NDIS Progress Report: Year Two

NDIS e-News - June 2015

NDIS FAQs by My Choice Matters

Five fact sheets are available to download in Plain English and/or Easy Read:

NDIS FAQs 1 - Can I get the NDIS?
NDIS FAQs 2 - What should I know about plans?
NDIS FAQs 3 - How do I manage funding?
NDIS FAQs 4 - How do I make my plan come true?
NDIS FAQs 5 - What if I am not happy?

Disability Advocacy Review highlights need to be nimble

School for Social Entrepreneurs, 24th June 2015

As the Federal Government’s National Disability Advocacy Framework calls for people with a disability, their families and advocates to provide feedback, the need for disability service organisations to be nimble has also been highlighted ...

Federal NDIS trial has given my sons a new chance at life: Perth mum

Emma Young, Sydney Morning Herald, 17th June 2015

Taking part in the federal National Disability Insurance Scheme trial has given a Perth mum hope that her sons will have a chance to have careers and live independently ... She described being on the NDIA as being able to be like a business owner, able to self-manage your own funding, choose your therapists and sign your own service agreements. She had found it a bit overwhelming, so had chosen a partial model in which service providers looked after the boys' care but she self-managed respite services.

Overall, she said, accessing service providers and choosing what would suit the boys best became easier ...

Disability Challenge

Helen Gregory, Newcastle Herald, 10th ajune 2015
Dale Mulligan’s steady determination, combined with the efforts of Disability Advocacy NSW and his Legal Aid team, have made him the first person to successfully appeal to the Federal Court to access the National Disability Insurance Scheme ...

1st July - NDIS expands to Maitland, Blue Mountains areas

1st July - a major date for the implementation of government initiatives, new regulations and changes to existing programs.

Today sees the expansion of the National Disability Insurance Scheme trial site in the Hunter (to the Maitland LGA), and its beginning in the Nepean/Blue Mountains region of NSW.

NSW Council on Intellectual Disability recommends that potential new participants the NDIS in the Nepean Blue Mountains area pages on the NDIS website.

2000 children set to benefit from NDIS in the Nepean and Blue Mountains region

Rachel Browne, Sydney Morning Herald, 30th June 2015

... Initially available for 2000 children and teenagers, the scheme launches on Wednesday, with support packages available from September ...

... Early intervention is a priority for the scheme, which will be gradually phased into the Nepean and Blue Mountains region ...

... An information office will open in Penrith on Wednesday, followed by other shop fronts in the Nepean and Blue Mountains area. Staff from the NDIA, which is implementing the scheme, will be available to answer questions on the types of support which will be available.

National disability insurance scheme expands to Maitland 

Michelle Harris, The Newcastle Herald, 30th June 2015
The National Disability Insurance Scheme is set to roll out in Maitland from Wednesday, opening it up to 5000 more residents in the region two years after the NSW trial of the reform was launched in the Hunter ...

Independent Reviews of NDIS Decision Key to NDIS Success
Disability Advocacy NSW (DA), 29th July 2015 (media release)

With the National Disability Insurance Scheme (NDIS) trial beginning in Maitland, Disability Advocacy NSW (DA) is asking more people to seek reviews of NDIS access and care plan decisions as a way to make sure the Scheme works well in practice. So far the Hunter trial has had the highest ineligibility rates but very low review rates.

Recent issues of online newsletters

Hand in Hand - Summer 2015

Down Syndrome Research Foundation (Vancouver)
Feature articles on reading comprehension and fluency

• Back issues of Hand in Hand

Down Syndrome News Vol 38, Spring 2015 
(US) National Down Syndrome Congress
Feature article: Building a Strengths Mindset, Ryan M. Niemiec
Sometimes we all need a little push toward the positive. Parenting a child with special needs often presents challenges other families don’t face and scenarios in which no template for management exists ...

• Back issues of Down Syndrome News

Ombo Info - June 2015
NSW Ombudsman's Office newsletter
Safeguards for people with disability:

• Update on the commencement of the Disability Reportable Incidents scheme
• Submission to Australian Parliament Senate Inquiry
• Submission on Proposal for an NDIS Quality and Safeguarding framework

Accessible Arts Newsletter - June 2015
Arts and disability news around NSW