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.

Advocacy and rights: news and opinion

Age discrimination commissioner Susan Ryan takes on extra role of acting disability discrimination commissioner
Dan Harrison, Sydney Morning Herald, 1st July 2014
Age discrimination commissioner Susan Ryan will take on the additional responsibility of addressing disability discrimination when the current disability discrimination commissioner, Graeme Innes, finishes in the role later this month ... Mr Innes won't be replaced by a full-time disability discrimination commissioner after the Abbott government announced in the May budget that it would reduce the number of Australian Human Rights commissioners by one in order to save $1.7 million over four years ...

Speak for yourself
Kerri Cassidy, Ramp Up, 25th June 2014
It is more important than ever that disability and chronic illness organisations do not speak on behalf of those they represent, but empower us to speak for ourselves ...

Intellectually impaired Aboriginal woman Rosie Fulton to be freed after 21 months in jail with no conviction
John Stewart, ABC News, 26th June 2014
A mentally impaired Aboriginal woman who has been held in jail without trial or conviction for 21 months will be released next week to be closer to her family ...


Passing on the Baton
Graeme Innes, Howzat? 23rd June 2014
Before leaving my position as Disability Discrimination Commissioner, I wanted to make an ongoing contribution to leadership in the disability sector in Australia. Planning for succession is one of the most important things we all have to do if we want a sector or movement to be sustainable. I wanted to enhance the skills of young people with disabilities so that they would be better leaders in the future ...

The closure of Ramp Up once again silences people with disabilities
George Taleporos, The Guardian, 19th June 2014
Ramp Up was a site written by people with disabilities, without the distorting filter of the mainstream media which turn us into objects of pity or inspiration. It's a real shame to see it go ...

Human Rights Commission to spread extra load after Disability Commissioner's departure
Judith Ireland, Brisbane Times, 12th June 2014
There will be a group effort at the Human Rights Commission to compensate for the loss of its disability commissioner, with the remaining commissioners all taking on disability work when Graeme Innes leaves next month. The federal government cut the commission's funding by $1.7 million in the budget, reducing the number of commissioners from seven to six. When Mr Innes' term ends in July, he will not be replaced with a new commissioner. President Gillian Triggs told Fairfax Media that she and the other commissioners had agreed to take a share of the disability workload as it relates to their existing portfolios ... Last year, 37 per cent of discrimination complaints received by the commission related to disability. "It's obviously a very important sector for us," Professor Triggs said ...

Friday, 4 July 2014

Weekend reading and viewing: 5th - 6th July 2014


Why my son does not make me a 'special kind of person'
Mary Evelyn Smith (guest blogger), Finding Beauty in My Brokenness, 2nd July 2014
... I am not pretending that my son is just like everyone else. But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable—that it takes someone “special” to muster up this kind of affection. It seems we reveal our innermost bias—at least I think I did ...

I never knew I wanted a child with Down syndrome until I got one
Meriah Nichol, A Little Moxie, 2nd July 2013
... Pregnant with Moxie, I’d read things about how much mothers loved their little ones with Down syndrome and I thought things along the lines of, “that’s great, that’s wonderful, silver linings and all, good for them but I’d rather have a kid without Down syndrome, thanks”. I think in my heart of hearts, I didn’t believe it was possible for someone to truly be accepting of an intellectual disability, or to honestly see something anything desirable about it ...   

Ramp Up’s shut-down robs us of a needed voice on disability issues
Shawn Burns, The Conversation, 30th June 2014
... Too often, media representation of people with disability is embedded within familiar models of “tragedy” and “hero” – but the weekend’s coverage of potential changes to the disability support pension and the welfare system paint an equally distorted and harmful image ...


Dancing like everyone's watching
Stella  Young Ramp Up 27th June 2014
Sometimes it seems that anything you do in a non-normative body is somehow political. Stella Young feels this is particularly true for a wheelchair user on a dance floor ...
  • The last new, original content posted on the now defunded ABC website, Ramp Up.
Calls
Dave Hingsburger, Rolling Around in My Head, 27th June 2014
... The fact that people with disabilities have free access to pick up a phone and call a director and ask for meeting times to discuss their lives, the treatment plan in place and their future is simply awesome ...

Workforce Transformation: From Caregivers to Direct Support Professionals
Service, Support and Success, Volume 3, #7, July 2014
The most important staff in any organization are those who work directly with the individuals with developmental disabilities. They have the greatest impact on the individuals and deserve much recognition and gratitude for all of their hard work. Most of the direct staff want the best for the people they support and try to do an excellent job. Yet the message they often receive from many agencies and the government is that they are direct care workers or caregivers. In New York State, there is a new initiative to transform the workforce from being caregivers to being a direct support professional.

Latest additions to 'Events' pages

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:

DS NSW Trivia Night 2014

24th July 2014 - Five Dock


Other events:

'Building the NDIS – A Progress Report' 
National Press Club Address: Dr Bruce Bonyhady AMChairman, National Disability Insurance Agency
9th July 2014 - ABC TV

Does learning two languages in early childhood result in language development delay or disorder?
Ethnic Child Care Family and Community Services Co-operative - professional development forum
Thursday, 17 July 2014 - Newcastle (Download flyer)
Tuesday, 29 July 2014 - Wollongong (Download flyer)
Tuesday, 5 August 2014 - Coffs Harbour (Download flyer)
Tuesday, 12 August 2014 - Gosford (Download flyer)


Nominations close Sunday 20 July 2014

Sons and Mothers
No Strings Attached Theatre - documentary on the theatre production
Sunday 20th July 2014 at 10:35pm on ABC1

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


Interim report of the reference group commission to review welfare reform.
Consultation period closes 8th August 2014

Dance, Theatre and Visual Art: Engaging Students with Disability
NSW Institute of Teachers professional development for K - 12 teachers
5 - 6 September 2014 SydneyOpera House
No Strings Attached Theatre - national regional road tour
14th August - 22nd October 2014 - across regional Australia

Interim report of the reference group commission to review welfare reform.
Consultation period closes 8th August 2014

Thursday, 3 July 2014

Graeme Innes's address to the National Press Club, 2nd July 2014



National Press Club address, 9th July 2014
Dr Bruce Bonyhady AMChairman, National Disability Insurance Agency
'Building the NDIS – A Progress Report'
Dr Bruce Bonyhady was formerly the President of Philanthropy Australia and also formerly the Convenor of the Independent Panel appointed to advise the Productivity Commission and Government during the Inquiry into long-term care and support for Australians with disability. He is a Member of the Disability Investment Group and the Reference Group for the Pension Review. He was Deputy Chair of the National Disability Insurance Scheme Advisory Group to the Council of Australian Governments and former Chairman of Yooralla. 
Dr Bonyhady has also held a number of senior positions in the funds management industry and insurance industry in Australia and internationally. He is Chairman of Acadian Asset Management Australia Limited and a Director of Dexus Wholesale Property Limited. His former roles include senior positions in the funds management industry, including Managing Director of ANZ Investments and Executive Vice President at BT Funds Management. His earlier career was as an economist and econometrician in the private sector and the Commonwealth Treasury. 
He is the father of three adult sons two of whom have disabilities. Dr Bonyhady was appointed as a member of the Order of Australia in 2010 for services to people with disabilities, their families and carers and to the community.

Library Shelf


Life is a Blessing: A Biography of Jerome Lejeune - Geneticist, Doctor, Father, Clara Lejeune-Gaymard
Biography written by Jerome Lejeune's daughter. A brief and loving portait of the doctor who 'discovered' the third copy of chromosome 21. Includes Clara's understanding of her father's religious faith and his medical research and practice.

Members' library
The Down Syndrome NSW library catalogue is available to view here.  

Wednesday, 2 July 2014

Nominate a Don't DIS my ABILITY ambassador for 2014


International Day of People with Disability (IDPWD) is celebrated annually in NSW with the
Don't DIS my ABILITY campaign. The campaign celebrates the diversity and ability of people with a disability. It is about promoting positive perceptions and building an environment that encourages active participation in careers, leisure pursuits as well as social activities.
Don't DIS my ABILITY has opened nominations for its 2014 ambassador program. We are seeking nominations for ambassadors from a range of backgrounds, ages and disabilities. Ambassadors support and strengthen the delivery of Don't DIS my ABILITY by serving as the voice of the campaign to the community.  
Experience in this environment is not essential as ambassadors will be mentored by campaign staff to communicate key messages, share personal stories and, ultimately raise awareness of the abilities and achievements of people with disability 
Nominations are open from 9.00am Monday 23 June until midnight Sunday 20 July 2014.
A number of people with Down syndrome have served as ambassadors in the past - read about in the archives, here.

More responses to the interim report on welfare reform: focus on impacts on people with disability

People with Disability Australia, 1st July 2014
People with Disability Australia President, Craig Wallace, has expressed strong concerns about the release of the Welfare Reform Interim Report amidst negative media portrayals of people with disability ...

Welfare review chief backs disability cutbacks
Patricia Karvelas, The Australian, 1st July 2014
The author of the McClure welfare reform report says not all those currently on the disability support pension should be “grandfathered” so they can ­retain their benefits under his proposed new system.

The comment by former Mission Australia boss Patrick McClure raises the prospect that people under a particular age or with episodic mental illnesses could receive lower payments.

The welfare lobby will try to argue that those currently on the DSP should be grandfathered to protect them from being put on a new, lower “working age payment”...


Work not welfare
Anna Henderson, Lateline (ABC TV1), 30th June 2014
(first 3m 51 sec of 4m 58s addresses DSP criteria)
The nation's top disability advocate has warned suggested changes to welfare will drive more vulnerable people into poverty ...

Can you work? That's all the Australian government wants to know
El Gibbs, The Guardian, 30th June 2014
For people living with disabilities, the world is full of places hostile to how we move, look, speak and talk. Any welfare review that prioritises self-reliance ignores this ...

... The federal government's McClure review into welfare is not about whether social security spending is out of control (it's not), nor whether there are thousands of rorters and bludgers abusing the system (they're not). It's about defining everybody's value as whether they can do a particular kind of work ...