Friday, 1 August 2014

The heartbreak of low expectations

Down Syndrome Australia (DSA) was greatly saddened to read the story of baby Gammy in today’s Fairfax media: Australian couple leaves Down syndrome baby with Thai surrogate.

“Our primary concern is for the wellbeing of this little boy and his family. In Australia we are fortunate that the additional health conditions often associated with Down syndrome are routinely managed through our healthcare system – something which is clearly not accessible from a village in Thailand,” said Down Syndrome Australia CEO Catherine McAlpine.

“We very much hope that the pro-bono reach of Australian hospitals and their partner charitable organisations will be available to assist in this heartbreaking situation. We are currently examining ways we can work with them to do so.

“In Australia life outcomes have never been better for people with Down syndrome and their families. Advcances in health care, early intervention and education have made a tremendous difference to the lives of people with Down syndrome.

“There remain however many barriers to ensuring people with Down syndrome have the opportunity to reach their full potential. Low expectations and lack of understanding mean that Australian children with Down syndrome still have trouble accessing mainstream education and adults with Down syndrome struggle to obtain jobs.

“For many people with Down syndrome the biggest challenge they face is the stereotyping and discrimination that follow from these negative attitudes and low expectations.

“Everyone in the Down syndrome community is heartbroken to see those attitudes played out with such devastating consequences for baby Gammy and his family.

“We will look at ways we can partner with other organisations to help this little boy and his family.

“It is a sad reminder to us of just how far we have to go to in changing attitudes to ensure people with Down syndrome can enjoy the same rights and opportunities as everyone else in the community. We have made great progress in recent times but there is still so much to do.”

Down Syndrome NSW response to media reports (1st August, 2014:
Executive Director of Down Syndrome NSW, Tracylee Arestides, has formulated the following brief response to media reports regarding baby Gammy. 
DS NSW is greatly saddened that baby Gammy's biological parents may have made the decision to abandon him based on the fact he has Down syndrome. 
We are looking at ways to help Gammy access the necessary health care he needs. 
We would also encourage people to support Gammy's Thai birth mother Pattharamon Janbuaand and her family who are caring for Gammy and bringing him up. 
We have had advice from Thailand that the GoFundraise campaign to support Gammy's surgery and his family is legitimate, however we are not in a position to make the decision for people to support Gammy in this way. We encourage our members to make their own enquiries and decisions.

Weekend reading and viewing: 2nd - 3rd August 2014





VATTA (Canadian Down Syndrome Society), 28th July 2014. 
Have you ever wondered what prenatal testing means to people with Down syndrome? A group of nine adults with Down syndrome want to share their overlooked perspective on this topic, in the film What Prenatal Testing Means To Me, available to watch on the Canadian Down Syndrome Society’s website. 
The film stars VATTA (Voices At The Table Advocacy), the Canadian Down Syndrome Society’s self-advocate-led steering committee. These remarkable adults, ranging in ages 22 to 43, reflect on their hopes and fears for the future of Down syndrome in Canada and around the world. 
Prenatal testing is a complex and controversial subject. VATTA’s view is simple: If people have fair and balanced information about Down syndrome, and take the time to know and learn more about people with Down syndrome, they will be able to make a better choice for themselves and their families. VATTA wants everyone to “See the Ability” and not believe misconceptions or fears about Down syndrome. 
The film was originally presented as a session at the 2014 Canadian Down Syndrome Conference in response to a growing number of concerns by parents and expectant parents regarding prenatal testing. 
VATTA’s mission is to help all Canadians “See the ability.” VATTA helps self-advocates use their voice and stand up for what they believe in. VATTA has been part of the Canadian Down Syndrome Society since 2005.

Gillian Marchenko, 8th July 2014
... Polly’s good moments resoundingly beat out her bad. Oh, of course she is human; mean and selfish and sneaky. “Polly, are your toys cleaned up?” “Yes,” she lies, happily running on to her next activity. But also, there’s this: she is a bell that rings daily. She was made to exude sunshine. She does her job well ...

What is the risk of not having a great life?
Stay Up Late, 29th July 2014
... These sessions were all built around talking about those impossible blocks that simply can’t be removed and get in the way of people leading the lives they really want, and how we can remove them. Here’s the run down of those top 10 blocks ...

Seeing the Child, Not the Disability
Dennis Rosen, New York Times (blogs), 24th July 2014
..."I like the people in health care. People in health care, they don’t stare at my son like he’s some kind of freak, you know? They see him for who he is.” ...

Easy English workshop - Parramatta, 12th August

One day workshop with Cathy Basterfield - limited places available.

Image: pixabay.com
Developed in Australia, and now used worldwide, Easy English is a style of writing and presentation designed to provide understandable, concise information for people who do not have functional literacy.

Easy English training is recommended for anyone wishing to improve their communication with people who have 
  • an intellectual or cognitive disability 
  • a learning disability
  • an acquired disability, such as stroke, brain injury or 
  • degenerative condition
  • poor educational outcomes
Cathy Basterfield, of Access Easy English, is an internationally renowned Easy English developer, practitioner and trainer. She is a trained Speech Pathologist with over 25 years experience working with people with Complex Communication Needs. 

Tuesday 12 August, 2014
ICE (Information & Cultural Exchange)
8 Victoria Road Parramatta
$220 per person (GST incl)

This training is hosted by Down Syndrome NSW - for further information or to book a place, please contact Michelle Bamber on 02 9841 4444 or admin@dsansw.org.au

Access to information. Everyone’s human right.

Transition to School - online resource

Fittingly during NSW Education Week, the Minister for Disability Services, John Ajaka has launched the Transition to School online resource, designed to help children with disabilities make a smoother transition to school.


And this is a good opportunity for a reminder about this Down Syndrome NSW event:

Preparing for School
Down Syndrome NSW workshop for parents of children starting school in 2015/2016
Wednesday 13th August 2014 - Rosehill

Thursday, 31 July 2014

Rethinking College: online documentary, resources

Rethinking College is a 25 minute film produced by Think College that explores the growing movement to include students with intellectual disabilities in higher education. It is available for viewing online.
Through the perspectives of parents, educators, advocates, policy leaders, and most importantly, students, this film illustrates how colleges and universities can provide a setting for all students to grow, learn and build toward better futures

The Think College website has many more resources related to post-secondary education for people with intellectual disabilities. It is a US site, but much of the information is universal.

Dreamhouse documentary starts next Thursday


Three young adults with intellectual disabilities fly the nest and move into a new home for 10 weeks. If it works out, they can stay on and call The Dreamhouse home.
ABC TV 1 Thursday 7th August 2014,  9:30pm - trailer

Wednesday, 30 July 2014

Take part in the biggest conversation happening about intellectual disability and the NDIS this year!




Online group for grandparents

 Grandparents with Grandkids with Down Syndrome (GWGWDS) is a closed Facebook group:
We are an independent group of grandparents with grandchildren with Down Syndrome. We are not attached to any organization, agency, or entity. We answer to no one except ourselves. We exist to provide support, information, and education to those who want it. There are no commercial solicitations, no medical advice given, and never any derogatory comments. We welcome all grandparents worldwide with grandchildren with down syndrome without regard to race, creed, religion, or national origin.
Characteristics of a closed group are defined here.

Tuesday, 29 July 2014

Good health: mental health resources for people with complex communication needs

The Bridging Project aims to build bridges between specialist and community providers of mental health services in relation to people with complex communication needs. 
A person with complex communication needs cannot use speech to communicate so that others can understand them. Some people with complex communication needs may also have a mental illness. 
A person with a complex communication need may notice changes in the way they think, feel and behave. This can make it hard to cope with everyday things. It can be difficult finding the right kind of help. It can be even more difficult to find the right help when a person does not use speech to communicate. 

Imagine: Challenge 2014 Art Competition

Note that this art competition is open to people from all over NSW who are accessing a disability service:


The fine print says:
Entries are open to all persons with a disability attending 
a disability service in NSW.
For entry forms or for further information please contact 
Challenge Marketing on 02 6763 1806 
To download an entry, visit www.challengecommunity.org.au

Entries close on Monday 13th October 2014

Monday, 28 July 2014

Inverell's Scrappers in the news

Great story and a terrific photo with Emi Campbell and the Inverell Scrapheap Adventure team in the Inverell Times:

Taking up the scrapheap challenge
Michèle Jedlicka, Inverell Times, 25th July 2014
... Inverell riders have participated in the (Scrapheap) Challenge since 2011. Col, Mick O’Brien and Phil Kimber were the first three to take the trip, and since then, the riding ranks have swelled to 14, and more are welcome to join the effort.

Local pharmacist Brendon Campbell is riding for the first year in support of the program. His daughter Emi has Down Syndrome, and Brendon has just achieved his P plates and bought a motorbike to join the local Scrapheapers.

He’s been giving Emi rides around the paddock on his bike, and Emi said had fun on the bike with her dad.

“It’s a really good ride,” she said.

“She hangs on with her thumb on the horn if I go too fast,” Brendon laughed. “I don’t know what our neighbours think!” ...
read the full story and see the Inverell Times fabulous photo here.

Share your thoughts on the current welfare review with the National Welfare Rights Network

The Government has announced that they are reviewing the social security system. In the 2014 Budget, some significant changes were proposed for people receiving the Disability Support Pension which could affect people under 35. 
The National Welfare Rights Network (NWRN) wants to talk to people who may be affected by these changes. To have your say about the proposed changes - please participate in the research being conducted ... read more about the project and how you can participate here.

Friday, 25 July 2014

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


July Workshop Rehearsal Shots - Katrina Folkwell Does it Again!
An album of Katrina Folkwell's photos taken during a weekend integrated dance workshop on the far North Coast of NSW.



Voices at the Table (VATTA), Canadian Down Syndrome Society, 12th June 2014
Trailer for "What Prenatal Testing Means To Me".

About the film: Prenatal testing is gaining more prevalence in the news and society. With new and emerging tests, many people are failing to ask - what does this mean to people with Down syndrome?

VATTA, the Canadian Down Syndrome Society's self-advocate-led steering committee, will explore this topic from their unique and often overlooked perspective. Learn more about prenatal testing. Find out what their hopes and fears are for the future of Down syndrome in Canada and around the world. Join the conversation where people with Down syndrome reflect on their own value and contributions in their own community.

Who better to tell us? The finished film will be released next week - it will be available at www.cdss.ca and on VATTA's website.

Working towards arts accessibility
Ben Nielsen, Limelight, 17th July 2014
Australians with a disability are sometimes forgotten but a handful of organisations are championing the cause of arts accessibility ...

IBM Appoints Chief Accessibility Officer
Darryl K Taft, eWeek, 22nd July 2014
IBM has created a new position, Chief Accessibility Officer (CAO), aimed at redefining accessibility for users and ensuring that all users can have access to technology. Big Blue appointed Frances West as the company's first Chief Accessibility Officer. In this new role, West will guide IBM accessibility policies and practices. Additionally, she will lead IBM's collaboration with business, government and academia to advance accessibility standards and policy ... For more than 100 years, IBM has advanced technology access for people of all abilities. Some of its earliest innovations include the first Braille printer, a talking typewriter and the first commercially viable screen reader.

Disability Is Not Just a Metaphor
Christopher Shinn, The Atlantic, 23rd July 2014
The entertainment industry loves disabled characters—but not disabled actors ...

Accessible Arts (NSW) Newsletter, July 2014

2015 calendar - final reminder for photos !

DS NSW members - have you been meaning to send in photos to be included in the Down Syndrome New South Wales 2015 Calendar?

Well now is the time - photo submission close next Friday, 1st August 2015.


Please email your digital images to admin@dsansw.org.au to be included. 

We would prefer JPEG files, along with the name of the person with Down syndrome in the photo (first and last name please). Maximum of 8 images. Preference will be given to images that are in focus and showcase the person with Down syndrome.

Photographic prints will be accepted. Prints to be sent to our postal address:
Down Syndrome NSW
P.O. Box 107
Northmead NSW, 2152.
If there are other people in the photo we require your emailed assurance of each person’s permission to publish the image. Due to limited text space the photo will be labelled in the calendar using the name of the person with Down syndrome, along with brief text about any others in the photo (e.g ‘John Smith and friends’, ‘John Smith and Grandma’, ‘John Smith and family’, etc).
  • And if you still need to order your 2015 Entertainment Book, the details about both the paper and new digital editions are here.

Thursday, 24 July 2014

New resources

Racing Toward Better Speech: #NDSC14 Presentation 
Cincinnati speech and language therapist Jennifer Bekins  has generously made the slides from her presentation at the (US) National Down Syndrome Congress's annual convention available via her blog, Talk - Down Syndrome. The convention was held in Indianapolis, 12th - 13th July 2014

Newly published book for littlies
Animal Fun for Everyone!
Marjorie Pitzer , Woodine House, 2014
This photo-filled board book shows young kids with Down syndrome enjoying themselves with a veritable menagerie of animal friends—goats, dogs, cats, horses, fish, ducks, and more! Readers will smile as they see children hugging, petting, tickling, riding, and feeding these furry, feathery, and scaly creatures.

Excerpt from Animal Fun for Everyone
... images of less-commonly seen animals
In this latest book, author Marjorie Pitzer (I Can, Can You?, I Like Berries, Do You?) mixes fun with ample opportunity to learn and practice action and noun words (Talking to a parrot. Giggling at a guinea pig.). Youngsters will be entertained by the sheer variety of animals (there’s even a ferret!) and the obvious delight and wonder they inspire. (Publisher's notes).

This unique board book is recommended for children of all colors, shapes, sizes, and abilities ... Many board books contain pictures of animals, but less common are those that contain photographs of real children interacting with real animals. Animal Fun for Everyone! offers a closer connection to real interaction, instead of the more typical illustrations of children, or photos of animals alone ... read the whole review.

Belonging Matters 2014: Melbourne, September




Wednesday, 23 July 2014

Research news and commentary #8 for 2014

'Support cells' in brain play important role in Down syndrome
University of California Davis Health System News, 18th July 2014
Researchers from UC Davis School of Medicine and Shriners Hospitals for Children – Northern California have identified a group of cells in the brain that they say plays an important role in the abnormal neuron development in Down syndrome. After developing a new model for studying the syndrome using patient-derived stem cells, the scientists also found that applying an inexpensive antibiotic to the cells appears to correct many abnormalities in the interaction between the cells and developing neurons ...

Lines f Inquiry, Edition 4
Centre for Applied Disability Research, July 2014
If you weren’t among the 360-plus attendees at Centre for Applied Disability Research’s first ever Research to Action conference on 26 and 27 May 2014, you can catch up now on all the news and views.We report on a memorable two days in Sydney, and look at what happens next: how do we make sure the Australian disability research agenda really takes off?

Babies with Down syndrome could help delay the onset of Alzheimer’s disease
Annette Karmiloff-Smith, The Conversation, 3rd July 2014
... babies with Down syndrome, who always develop brains like those with Alzheimer’s later in life, don’t always go on to develop dementia. A study that I am involved in, called LonDowNs, is now trying to find out why this may be, with the hope of finding ways to slow down the development of dementia ...

Alzheimer’s Could Be a Form of Down Syndrome
Lisa Marshall, Scientific American, 17th June 2014
Scientists are studying them together to find underlying causes ... Is Alzheimer's disease an acquired form of Down syndrome? When neurobiologist Huntington Potter first posed the question in 1991, Alzheimer's researchers were skeptical. They were just beginning to explore the causes of the memory-robbing neurological disease. Scientists already knew that by age 40, nearly 100 percent of patients with Down syndrome, who have an extra copy of chromosome 21, had brains full of beta-amyloid peptide—the neuron-strangling plaque that is a hallmark of Alzheimer's ...

National Down Syndrome Research Resources
A list of links that will allow you to learn more about the latest national efforts related to Down syndrome research, provided by and recommended by the Down Syndrome Research Program team at Massachusetts General Hospital (Co-directors Drs. Allie Schwartz and Brian Skotko).

Just in case you missed our recent post about this recent archeological discovery:
Oldest case of Down's syndrome from medieval FranceColin Barras, New Scientist, 4th July 2014The oldest confirmed case of Down's syndrome has been found: the skeleton of a child who died 1500 years ago in early medieval France. According to the archaeologists, the way the child was buried hints that Down's syndrome was not necessarily stigmatised in the Middle Ages ... read on here(A link to the original paper is provided.)

Tuesday, 22 July 2014

DS NSW Trivia Night - change of date

The Trivia Night scheduled for Thursday 24th July 2014 has had to be rescheduled to

Saturday 30th August 2014


Please join us for a night of Trivia for your chance to win great prizes and support Down Syndrome NSW. It’s also a great chance to meet the DS NSW staff and extended network. Friends and family are welcome. There will be finger food and drinks are available for purchase. 

We have games, raffles and silent auctions so don’t forget some extra money for your chance to walk away with a great prize!

Saturday 30th August, 6:30pm for 7pm start 

Five Dock RSL, 66 Great North Rd Five Dock
Cost: $30 pp or table of ten, $250
Book your tickets online hereor  phone 9841 4444

News, commentary and resources on the NDIS (24)

NDIS ready for rollout, says disability advocate, despite suggested delay
Gabrielle Chan, The Guardian, 20th July 2014
President of People With Disability Australia disputes KPMG review finding that design of full scheme 'lacks clarity' ...
   
NDIS agency board puts cloud over rollout
Rick Morton, The Australian, 19th July 2014
The National Disability Insur­ance Scheme shows “limited evidence” of having created the flexible environment of individual support promised and there are “serious risks” to its sustainability, says a long-awaited ­review of its preparedness. The review, commissioned by the NDIS agency board and authored by auditors at KPMG, has long been touted by the federal government as the crucial factor in helping decide if the $22 billion scheme should be delayed.

It was released quietly online yesterday as the nation turned its attention to the Malaysia Airlines flight shot down over Ukraine ...
NDIS, 18th July 2014
The KPMG Paper is on the right-hand side of this page, plus NDIA's media release in response. 
NDIA chairman Bruce Bonyhady says the Agency is totally committed to delivering the full National Disability Insurance Scheme as quickly as possible and sustainably 
“What this KPMG paper does is identify some of the lessons from the trial sites to date together with some of the complexity surrounding rollout to full scheme. It is one of the many inputs, which will be considered as we start to talk to our stakeholders about the best way forward,” Mr Bonyhady says. 
More of Mr Bonyhady's comments are in the media release, KPMG paper released ahead of stakeholder consultation, 18th July 2014 
We welcome comments on the paper via this special feedback page.

Discover: A Resource for people planning for the future
Discover provides the information needed to navigate the new National Disability Insurance Scheme: NDIS. 
This resource combines complex information alongside Easy Read sections to enable people with impaired decision making to be supported through all stages of planning under NDIS.  
Discover also provides information about planning for whole of life including wills and trusts, as well as providing contacts to source additional information.
A free set of resources, including Easy English text,  published online by the Endeavour Foundation, through a Practical Design Fund grant.

Lake Macquarie added to NDIS trial
Matthew Kelly, Newcastle Herald, 16th July 2014
... After a year of operation, around about 2,000 people are receiving services under the Newcastle NDIS trial. The scheme will now be expanded to include Lake Macquarie, effectively doubling the number of people who will benefit ...

Monday, 21 July 2014

Launch of 'Living a Good Life' - DVD and podcast

‘Living A Good Life: Personal support networks’ is a series of powerful stories of people living with a developmental disability and their networked supporters exercising control and choice about their lives.

The stories show people with a disability, families and personal network members using individualised packages of support, including self-directed funding. Brenton, Victoria and Tom, three of the people featured, have Down syndrome.

Join us to celebrate this resource
Trevor Parmenter, Roger Stancliffe, Marie Knox, Anne Hillman, Michelle Donelly, Summer Hill Media and Ability Options invite you to a celebration.

2.30 p.m. - 4.00 p.m.
Saturday 16th August, 2014

Redfern Town Hall, 73 Pitt St, Redfern

DVD and Podcasts to be launched by:
Emeritus Professor Ron McCallum AO Vice Chairperson of the United Nations Committee on the Rights of Persons with Disabilities; Member of Administrative Appeals Tribunal as one of four people to hear National Disability Insurance Scheme matters. Former Dean of Law University of Sydney and Foundation Blake Dawson Waldron Professor in Industrial Law in the Faculty of Law of the University of Sydney; Senior Australian of the Year 2011.

RSVP by 4th August, 2014 to Michelle Donelly
michelle.donelly@scu.edu.au
0423 986 386

2014 Special Olympics National Games: Team NSW

Team New South Wales is heading to the 2014 Special Olympics National Games in Melbourne.

243 athletes and 70 officials will represent Special Olympics New South Wales in Melbourne in several sports. 

See who's in the team here, and prepare to cheer them on - there are lots of familiar teams amongst the athletes, coaches and assistants, and the Head of Delegation is Lorraine Clarke.

Support the team by following their progress on Facebook

You can also make a tax-deductible donation to the team or an individual athlete. 

Friday, 18 July 2014

Weekend reading and listening: 19th - 20th July 2014


How I Found Inspiration In The Typical
Christie Taylor, TED Weekends (Huff Post), 14th July 2014
... Wil is not typical because he has 47 chromosomes, while all the other children in his classroom have 46. In other words, Wil has Down syndrome, and his classmates do not.Seeger is not typical, because it's not common to hear kids share these everyday types of conversations with Wil ...

Little Miss Swiss
Tom Bachofner, The Future's Rosie, 24th June 2014
... Grandad just 'gets' Rosie, they always interact so well together regardless of which language they converse in!

Life with a Disabled Child (12m audio file)
BBC Radio (Woman's Hour), 10th July 2014
A listener (the single mother of a child with Down syndrome) on the realities of being the main carer for a disabled child.
Sandy Banks, Los Angeles Times, 14th July 2014
... Iland is trying to make sure young people like her son who are pushing for independence, don’t wind up as law enforcement statistics. Since 2007, Iland has been trying to teach Los Angeles Police Department officers how to recognize and interact with people who have autism spectrum disorders. Now she’s trying to teach people with autism what to do if they are stopped by police ...

In Defense of People Who Need Caregivers: Disability Should Not Erase Dignity
Emily Ladau , Huffington Post (The Blog), 16th July 2014
... For children of any age and any ability, the care they need from their parents can sometimes be messy or personal; these are the moments to keep behind closed doors purely because it is the respectful thing to do to protect a child's privacy ...



Stepping Stones Triple P: free in NSW in 2015

Free Stepping Stones Triple P programs for Parents and training for professionals

Stepping Stones Triple P (SSTP) is a new initiative to support families of children with developmental disabilities. Research has shown the programs help to reduce children’s behavioural and emotional problems, decrease parent stress, and increase parent confidence. 

This initiative will make the programs widely available to NSW families with children with disabilities aged 2-12 years. It introduces parents to a range of proven strategies to encourage positive behaviour, teach new skills and to more effectively manage challenging behaviour.

The NSW SSTP Project is led by Professor Stewart Einfeld from the University of Sydney. The project has received approval from the University of Sydney Human Research Ethics Committee.

Professor Einfeld said the SSTP project aims to reduce high levels of emotional and behavioural problems in children with a disability by providing parents with more support.
“Children with developmental disabilities, such as autism spectrum disorders, Fragile X and Down syndrome experience three to four times the emotional and behavioural problems of typically developing children,” Professor Einfeld said.

“This has an enormous impact on parents, and understandably many struggle to cope with the daily demands of raising their child and the extra challenges it involves.”

The SSTP Project offers free parenting sessions through Stepping Stones, which is a Triple P – Positive Parenting Program for parents of children with a disability.

A 2007 study¹ found 71 per cent of children with a developmental disability showed substantial behaviour improvement after their parents completed a Stepping Stones program.

The three-state SSTP Project is funded by the National Health and Medical Research Council, Australia, and is being rolled out in New South Wales, Queensland and Victoria.
Parents and professionals can indicate their interest here: complete the My Say survey.





Thursday, 17 July 2014

One page profiles - ' ... a simple way to start personalising education ...'

This simple-to-prepare resource could be useful in supporting people with disabilities beyond the classroom, and across all ages.  This post describes a UK educational implementation, that could be easily adapted:

Using One Page Profiles for your special needs child
Debs Aspland, Special Needs Jungle, 17th February 2014
... A one-page profile gives a shared understanding about the child, built from the knowledge of the child, the family and friends and teaching staff.

They give parents an opportunity to share their learning and expertise on what good support means for their child, and what is important to them. It is these ‘little things’ that make a huge difference ...
read on here.

Wednesday, 16 July 2014

National Disability Forum announced

Acting Disability Commissioner Announces Forum

Australian Human Rights Commission, 14th July 2014
As the Age Discrimination Commissioner Susan Ryan today adds Disability Discrimination to her portfolio, she's announced plans to hold a National Disability Forum to work out ways she can improve lives for Australians with disabilities. 
Commissioner Ryan has taken advice from the recently departed Disability Discrimination Commissioner, Graeme Innes, who earlier this month called for a jobs plan to engage people with disabilities in the workforce. 
"I want to reinvigorate a national discussion and what better time to do this than now, as the Government considers significant changes to the welfare system, including the disability support pension," said Commissioner Ryan. 
In preparation for the forum the Australian Human Rights Commission will shortly release a survey asking people with disabilities to identify the key issues that they face, especially in relation to access to jobs. This will be used to inform discussion at the National Disability Forum (to be held in September) and to guide the development of the Commission’s future work priorities in advancing the rights of people with disabilities ... read the full announcement here.

PWDA on the big issues

People with Disability Australia e-Bulletin #91 covers some big issues. You can read it online, or subscribe to receive it by email:

Contents
Individual advocacy
Disability support and the NDIS
Economic Security and employment
Human rights and the Convention on the Rights of Persons with Disabilities
Housing and living in the community
Preventing violence and abuse
International development
Training
Disability News
Consultations, Surveys and Petitions
Resources
Conferences and Events

Tuesday, 15 July 2014

News and commentary on the NDIS (23)



Toby O'Connor, Opinion, ProBono News Australia, 15th July 2014
CEO of NFP service organisation St Laurence Community Services, Toby o’Connor, reflects on the challenges to providers and consumers after 12 months of the trial in Geelong’s Barwon region ...
... There is no doubt the Scheme is throwing out challenges to providers not used to operating in a competitive environment. At the same time it is bringing many new opportunities for Geelong. There will be new jobs but these will rely on new ways to offer old services and increased flexible work practices ...

National Press Club Address: Bruce Bonyhady NDIA chairman
National Disability Insurance Agency chairman Dr Bruce Bonyhady addressed the National Press Club in Canberra on 9th July 2014. You can see the video of the event here, on the ABC website. Video (57m, 10s)

Fears NDIS blind to remote reality
Rick Morton, The Australian, 14th July 2014
The agency responsible for the National Disability Insurance Scheme has been criticised for dragging the chain on involving Aboriginal Australians in the rollout of the $22 billion social reform after throwing the sector into confusion at the weekend ...

The NDIS, one year on: a Colac mother and disability worker reflects on a year of change
Lily Partland, ABC Ballarat, 2nd July 2014
Not many people have had such a close-up view of the rollout of the National Disability Insurance Scheme as Jacqui Suares. She runs a Colac-based disability organisation and has a daughter with a disability ...

First remote NDIS trial begins in NT
7 News (via AAP), 1st July 2014
The National Disability Insurance Scheme has launched the country's only remote community trial in the Northern Territory. The two-year trial began on Tuesday in the Barkly region, around Tennant Creek in central Australia ...

National Disability Insurance Scheme (NDIS) trial begins in the ACT
Elise Pianegonda, ABC News, 1st July 2014
For the Mowbray family, it has been a long, anxious wait for the rollout of the National Disability Insurance Scheme (NDIS). But today the National Disability Insurance Agency (NDIA) opened its doors in Canberra and will begin the task of developing individual care plans ...

NDIS funding levels not satisfactory, disability service providers say
Ewan Gilbert, ABC News, 1st July 2014
The peak body representing disability service providers has flagged major concerns with the Federal Government's level of funding for the National Disability Insurance Scheme (NDIS) ...

Uncertainty around Canberra NDIS rollout sparks fear and anxiety among families
Adrienne Francis, 7.30 ACT (ABC), 28th June 2014
... the very people the NDIS is meant to help are facing an added burden of uncertainty. How the scheme will be rolled out and what effect it will have on existing services remains a mystery, and some families are deeply concerned ... "We are very mindful of some of the concerns of some of the providers in the community as well as some of our families and we are working really hard to resolve that as soon as possible," (ACT manager for the NDIS, Jillian Paull) said ...

NDIA releases efficient price to build competitive market for disability services
NDIS, 27th June 2014
The National Disability Insurance Agency (NDIA) has today released a methodology to achieve an ‘efficient price’ for key disability supports which will help build a more competitive market and underpin real choice for Australians with disability. An efficient price is a benchmark that providers of support should be able to operate within, when supporting people with disability. The benchmark efficient price will be effective from 1 July 2016 ...

NSW Carers Advisory Council - seeking applications for membership

The NSW Carers Advisory Council will have a number of vacancies at the end of 2014 and is seeking applications for membership from people who have relevant knowledge of and experience in matters relevant to carers.

The NSW Carers Advisory Council was established under the NSW Carers (Recognition) Act 2010, to advance the interests of carers and to review and provide advice to the Minister on legislation, policy or other matters having a significant impact on carers.

The majority of Council members will be carers. Academics, researchers, individuals or organisational representatives with relevant knowledge of carers are also encouraged to apply.

Carers come from all walks of life and we encourage all carers including young carers, male carers, working carers, Aboriginal carers, carers from culturally and linguistically diverse backgrounds and carers from regional and rural areas to apply.

Appointments will be for four years. Sitting fees and associated costs will be paid. An information package and application form, including selection criteria, and further information is available here.

For enquiries, please contact the Office for Carers in the NSW Department of Family and Community Services on (02) 9248 0870 or by emailingnswcac@facs.nsw.gov.au

Applications close at 5pm on Friday 25 July 2014.

Monday, 14 July 2014

Latest additions to 'Events' listings

We maintain two listings of events at the top of this page, just under the banner.  Here are the latest additions to both lists:

Down Syndrome NSW events:

Preparing for School
Down Syndrome NSW workshop for parents of children starting school in 2015/2016
Wednesday 13th August 2014 - Rosehill

Other events:


Do It Naturally: Building Connections and Relationships
Family Advocacy: workshop for families
Wednesday 23rd July 2014 - Ryde

Understanding Person Centredness
Centre for Disability Studies - one of a series of wrokshops on Person Centredness
Thursday 24th July, 2014 - Camperdown
Keys to developing meaningful Lives: Developing Community Connections
Resourcing Families  - free workshop for families of people with disability, friends, allies and professionals.
Wednesday 30 July 2014 - Orange
Wednesday 27August 2014 - Lismore
Wednesday 20th August 2014 - West Ryde
Wednesday 17 September 2014 - Nowra
Tuesday 21 October 2014 - Wagga Wagga
Wednesday 19 November 2014 - Armidale


A detailed flyer and registration form are now available for this event:

Getting the Best from the NDIS - making it work for people with intellectual disability
NSW Council on Intellectual Disability - conference for people with intellectual disability, families and carers, support workers and other professionals
August 28 and 29 2014 - Newcastle

Have Your Say! about proposed changes to the Disability Support Pension (DSP) - People With Disability Australia survey

From People with Disability Australia, 9th July 2014 (on Facebook):
Over the next 5 weeks we will ask for your feedback on the government's proposed changes to disability support. Each week we will be asking you to share your thoughts and experiences on a different topic here. This week we are focusing on the Disability Support Pension (DSP). 
Some questions are: How will the proposed budget changes to the DSP affect you or your family? The Interim Report on Welfare Reform has suggested the DSP only be available for people with ‘Permanent’impairment. How do you feel about this? How would you or your family be affected if you were moved off the DSP to a different or lower payment?

You can read more about the DSP budget proposals here.  
Your opinions and concerns will be included in our submissions to the Welfare Reform process, in our responses to media and our representation and meetings with decision makers, including parliamentarians. You can also complete this short survey to give your feedback on the budget measures and the welfare reform or email Kate Finch, Advocacy Projects Manager at katef@pwd.org.au

Friday, 11 July 2014

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



Independence Day?
Jo Ann Simons, Zeh Lezeh, 8th July 2014
... Most people with disabilities who depend on others for care, do not even have even enjoy this level of independence. Caregivers often make the decisions about these simple acts of daily living without input from the people they serve. While we work for the full inclusion of persons with disabilities in major areas of life, such as economic security, employment, housing, education and religious life, let’s not lose sight of the very important rights to independence ...

When you should tell your children a sibling has a disability
Maureen Wallace, All Parenting, 2nd July 2014
... I tried to explain. I waxed on about how Charlie has trouble learning to say words, which is why we help him and why we're working on him saying "Ah-lie" before he tackles "Chah-lie" and, ultimately, "ChaR-lie."

She listened intently and nodded wisely. "Charlie likes ice cream," she said soberly. Got it, kid. Too soon ...


Dear Mom, dealing with your child's new diagnosis
Ellen Stumbo, Finding Beauty in My Brokenness, 8th July 2014
... Fear of the unknown. What does her diagnosis mean to her? To our family? Will our family now be covered with limitations? How will this diagnosis affect sibling relationships? What will her future look like? What about mine? Will she live with us forever? Will she ever have a job? And why me? Why me!!! There has to be a mistake, we cannot be one of those families that have kids with disabilities! ...

‘Dearheart’ Helen taught others about ability
Janis Ramsay, Simcoe.com, 3rd July 2014
... One of the qualities admired and remembered most by family members was how Helen would advocate for herself when facing discrimination. An incident during summer vacation still resonates with Nancy. "We were camping with our grandparents and whenever we walked past other sites, they would jeer,” she said. “Helen walked over and shook their hand, saying 'Hello, I'm Helen Pettypiece.' It changed the whole atmosphere." ...

Sugar-coating Down syndrome?
Sipping Lemonade, 3rd July 2014 
... she is “uncomfortable with the way all people who have [Down syndrome] are portrayed as sweet, affectionate, and capable” when she knows people who have Down syndrome who are not that way ... The world doesn’t need me to go on about the challenges of having a child with Down syndrome: there are enough people doing that. In fact, we talk about that so much that the majority of mothers who receive a prenatal Down syndrome diagnosis terminate their pregnancies ...

St Louis DSA, 30th June 2014
Megan asks her mother, Maureen, all the important questions about raising a child with Down syndrome. Find out how Megan became the amazing woman she is today!






Preparing for School: DS NSW parent workshop

A workshop for parents who have a child with Down syndrome entering school in 2015/16
  • Understanding NSW school systems 
  • Practical considerations when preparing your child for school and preparing the school for your child 
  • Useful resources for parents and teachers 
7pm – 9.30pm Wednesday 13th August 2014

Rydges Parramatta
116-118 James Ruse Drive, Rosehill

Members: $22 per person (Maximum 2 tickets per membership at discounted price)
Non-members: $44 per person
(DS NSW memberships available at $30)

Light refreshments will be provided

Speaker: Judy Davidson, DS NSW Information and Support team

RSVP: by Friday 1st August 2014
If you have any questions regarding the workshop or pricing, please call the DS NSW office on 02 9841 4444.

Thursday, 10 July 2014

National Press Club Address: Bruce Bonyhady, 9th July 2014

National Disability Insurance Agency chairman Dr Bruce Bonyhady addressed the National Press Club in Canberra yesterday. You can see the video of the event here, on the ABC website. Video (57m, 10s)

Speech Pathology Australia Book of the Year 2014 Shortlist

If you are considering additions to your home library, gifts for children or a donation to a school or pre-school library, the SPA Book of the Year shortlist and lists of previous winners can be an excellent guide. The 2014 winners will be announced in August:

Speech Pathology Australia (SPA) has released the shortlist for its annual Book of the Year Awards.

The awards aim to promote literacy and the need for good literacy skills, while building a library of resources that speech pathologists, teachers and parents can use to help promote literacy and reading.

The year’s shortlist consists of over 40 books in five categories: Best Book for Language and Literacy Development birth to 3 years, 3 to 5 years, 5 to 8 years, 8 to 10 years and Indigenous Children, with entries from favourite Australian authors such as Alison Lester, Mem Fox and Margaret Wild.

SPA President, Professor Deborah Theodoros said that literacy levels in Australia are at alarming levels and SPA hopes the Book of the Year Awards will help promote literacy as a fun and engaging activity and provide enjoyable and culturally appropriate resources that foster language and literacy skill development.

“In Australia today 14 per cent of 15 year olds have only basic literacy skills, while the literacy gap between Indigenous and non-Indigenous children is depressingly wide and continues to widen with each year that passes.”

“As the peak professional body for speech pathologists we are in a unique position to recommend books to parents and educators that can assist children’s speech, language and literacy development.”

Each year, Speech Pathology Australia selects children’s books based on their appeal to children, educational value, graphics and design, as well as their ability to facilitate communication, interaction and discussion.

For more information about Speech Pathology Australia’s Book of the Year awards, visit
www.speechpathologyaustralia.org.au
  • Previous award winners are listed at the foot of the webpage for this year's awards.

Wednesday, 9 July 2014

Wordless Wednesday


People with Down syndrome in the media

Today, we are taking a break from concerns about effects of the budget, welfare reform and disability discrimination that have been in so much of the media lately, and focussing on people with Down syndrome living well:

Teacher who knows all about special needs
Poppy Louw, Times Live, 7th July 2014
Giving children with special needs the same opportunities she had is one of Sheri Brynard's biggest motivations as a teacher. The 30-year-old from Bloemfontein made history when she became the first person in South Africa with Down's syndrome to qualify as a teacher ...

Caleb goes from spectator to player at last
Angela Thompson, Illawarra Mercury, 6th July 2014
For years, Caleb Jordan's place in sport was on the sidelines, watching his four sisters in action.
But these days he has his own games to get to ...
Brad Hennefer still winning gold medals
Kevin Callahan, Courier-Post, 1st July 2014
... this latest gold medal for the Cherry Hill resident is for winning a national Special Olympics title. Brad teamed with his 30-year-old brother, Bob, to win the gold medal in golf at the Special Olympics USA Games at the Mercer Oaks East Golf Course in Mercer County. The Hennefer brothers have teamed in the past to win golfing gold medals on the New Jersey state level ...

National Disability Insurance Scheme (NDIS) trial begins in the ACT
Elise Pianegonda, ABC News, 1st July 2014
For the Mowbray family, it has been a long, anxious wait for the rollout of the National Disability Insurance Scheme (NDIS). But today the National Disability Insurance Agency (NDIA) opened its doors in Canberra and will begin the task of developing individual care plans ...

Be Strong, Rock On

Tuesday, 8 July 2014

New archeological discovery

Are you interested in the history of Down syndrome, and how people with Down syndrome might have lived long ago? This report about the recent discovery of 1500 yr old remains of a child with Down syndrome has been widely circulated online over the last few days:

Oldest case of Down's syndrome from medieval France
Colin Barras, New Scientist, 4th July 2014
The oldest confirmed case of Down's syndrome has been found: the skeleton of a child who died 1500 years ago in early medieval France. According to the archaeologists, the way the child was buried hints that Down's syndrome was not necessarily stigmatised in the Middle Ages ... read on here. (A link to the original paper is provided.)

Comment on the interim McClure Review of Welfare Reform

Analysis and opinion on the interim report from the government's reference group on Welfare Reform (released on 29th June) continues to be published as it is digested by interest groups and individuals:

Welfare Review Fails to Understand Australia’s Labour Market
ProBono Australia News, 7th July 2014
The vision for the reform of the Australian social welfare system depends entirely on whether labour market opportunities will open up to those for whom it had previously been closed, writes Veronica Sheen, Research Associate, School of Social Sciences at Monash University ...

If you are participating in debates about the Disability Support Pension, these figures might be of interest and use:
Behind the labels: who is really on the disability support pension and whyJudith Ireland and Conrad Walters, Sydney Morning Herald, 4th July 2014As the debate about the DSP continues, with the public submissions now open for the McClure review and its first round table in Canberra next week, we ask who is on the DSP? Why? And for how long ...   
Welfare reforms a long process: govt
Nine News National, 3rd July 2014
Australian disability pensioners and carers are being told sweeping welfare reforms the government is considering are a long way off ...

Disabling rorters? More like punishing scapegoats
Stella Young, The Drum (ABC), 2 Jul 2014
For too long people with a disability have been scapegoats for a system that has failed us, and the response to the Government's review into the welfare system has seen that continue, writes Stella Young.

Monday, 7 July 2014

Graeme Innes - Australians with disability say thank you

People With Disability Australia, Media Release, 4th July 2014
Today People with Disability Australia (PWDA) fondly farewells Australia's Disability Discrimination Commissioner, Mr Graeme Innes AM from the Australian Human Rights Commission (AHRC). 
There are very few people with disability in high-profile, leadership positions within Government, and people with disability looked to Mr Innes to provide a much needed ‘voice’ on our issues and concerns. PWDA sincerely thanks Mr Innes for actively recognising the importance of ‘giving a voice’ to people with disability and for his substantial contribution to progressing the rights of people with disability.