Weekend Reading

If you haven't already got a copy of Fiona Place's fantastic book Portrait of the Artist's Mother you can now read the first chapter online via the link below.

Read the first chapter link

The book has also been reviewed by Selena Ewing in Mercatornet

"This joyful and deeply moving book interlaces the many aspects of Fiona's and Fraser's lives to craft a compelling story. It leaves many varied imprints on the heart of the reader. It is not difficult to move through the short chapters, and wonderful lessons are learned through Fiona's skilful storytelling."

Read Selena's review here

Estate Planning Seminar

Down Sydrome NSW will be hosting an Estate Planning Seminar in August.
The presentation will cover a number of important topics such as:

• Wills
• Estate Plans
• Guardianship
• Powers of Attorney
• Testamentary Trusts and Special Disability Trusts
• Centrelink issues
• Managing the interests and financial arrangements of family members
• Using a 'memorandum of wishes to achieve intended outcomes
• Costs associated with these types of arrangements

Presenter: Jonathan Harris, Director at Harrison Friedman Lawyers. He has over 30 years experience Estate Planning, Business  Law and Commercial Property transactions.









Date: Wednesday 14 August
Time: 6pm - 8pm
Venue: KPMG Offices, 300 Barangaroo Ave, Sydney
Bookings: Online registration here
RSVP: Monday 5 August 2019

For more information call DS NSW 9841 4444

AAT NDIS Decision Digest

The Winter 2019 edition is now available. This digest provides summaries of Administrative Appeals Tribunal decisions abour the NDIS. It is prepared by the Living with Disability Research Centre at La Trobe University. Always good reading.

The issue highlights the following

• The need for a proper and balanced use of operational guidelines
• Downsides of flexible use of funding
• The health system and the NDIS interface
• The importance of impairment
• Availability and access do not affect ‘availability’ of treatment

PDF free to download











LiDS Seminar series

Staying at La Trobe University, next week, Wednesday 10 July.
Two seminars that you can join live via video link 
More information here

3pm - Dr Ilan Wiesel: Finding the mainstream city: the ambiguities of 'mainstream participation' by people with intellectual disability

4pm - A/Prof Karen Soldatic & Dr Michelle Fitts: Sorting myself out of the system: Social sorting and the disability income support system for Indigenous Australians living with disability

NDIS Price Guide Revised

The pricing in the Support Catalogue has now been amended so that the group rates do indeed increase. The most accurate version of the Support Catalogue is now 1.1.

Major Changes to the New Price Guide published on Disability Services Consulting website.
This article provides some clarification regarding adjustment to individual participants available funds which will not include the TTP (Temporary Transformation Payment) and more. 


TTP Defined
Regarding the Temporary Transformation Payment - only registered providers can claim the TTP. To be eligible for the TTP providers are required to do the following

• publish their service prices;

• list their business contact details in the Provider Finder and ensure those details are kept up-to-date; and

• participate annually in an Agency-approved market benchmarking survey.

To continue reading about the TTP go to pages 12-13 in the Price Guide 2019-2020 Download PDF or Word document.


Health Supports & the NDIS
The Disability Reform Council has published a communique from its most recent meeting and a Health Related Supports Factsheet. The factsheet provides some good news for people who use CPAP and BiPAP machines and other "disability-related health supports where the supports are a regular part of the participant’s daily life, and result from the participant’s disability."
Communique from the Reform Council available from the DSS website 

Nominees
For all people who are nominees - please check that you have been appointed correctly and have your appointment letter from the NDIA. We are still hearing of people who still have not had the appointment formally made ie they are not in receipt of a "copy of the instrument of nominee appointment".
For details regarding the issue see Nominees Operational Guideline - Appointment of Nominees.

Focus on Ability Short Film Festival

The Focus on Ability Film Festival has received entries from 26 countries in 2019.
Plenty of great films to watch for the cineastes among you. Official voting for films will close on 3 July.

Two films to get you started

Our Trojan Robot by the Caringbah Craft Centre

Step Up for Down Syndrome: Confidential by Live Lab Griffith Film School 

New Financial Year - New Price Guide

New pricing for supports as of today 1 July 2019.
There are a couple of changes to the format, the information has been split into two documents.

The NDIS Catalogue of Supports (52 pages) - table format, containing line items, brief descriptions and pricing. Many more listed than we are used too and very small typeface.
The NDIS Price Guide (45 pages) is now the explanatory companion to the Catalogue of Supports

Not every category of support will be increasing. Group supports are decreasing by varying amounts. This is well summarised in The Fine Print & Corrections in the New Price Guide by Evie Naufal on The Disability Services Consulting website

Say Less Show More

These resources are available from NSW Health Agency for Clinical Innovation. Say Less Show More is a series of visual supports for routine medical procedures and hospital visits. There are three paediatric booklets and eight designed for adults. PDF format free to download

https://www.aci.health.nsw.gov.au/resources/intellectual-disability/childrens-services/say-less-show-more

Portait of the Artist's Mother

Portrait of the Artist's Mother | Dignity, Creativity and Disability by Fiona Place will be published by Spinifex Press in May 2019. This will be such an important book for everyone in our community. Put simply, Fiona writes glorious prose. That she has turned her attention to a long form reflection on parenting, creativity and disability is a cause to celebrate. It is for us, as readers, to recognise the experiences Fiona articulates because we share them. Here in the DSNSW Library we are almost beside ourselves with excitement!

Long standing members of our community will remember that Fiona edited Voice magazine for a number of years as well as having been a member of staff here at Down Syndrome NSW. 

The book will be officially launched on Friday 3 May 2019 in Glebe. 

A PDF with more details about the launch available here

I am seen by many as a danger. As having failed to understand the new rules, the new paradigm of successful motherhood. 
A memoir and an examination of the politics of disability. Fiona Place describes the pressure from medical institutions to undergo screening during pregnancy and the traumatic nature and assumptions that a child with Trisomy 21 should not live, even though people with Down syndrome do live rich and productive lives. Fiona's son, Fraser, has become an artist and his prize-winning paintings have been exhibited in galleries in Sydney and Canberra. How does a mother get from the grieving silence of the birthing room through the horrified comments of other mothers to the applause at gallery openings? 

This is a story of courage, love and commitment to the idea that all people, including those who are 'less than perfect', have a right to be welcomed into this increasingly imperfect world. Publisher Note

Photography

Diversity of Disability Image Competition

This one is for all the photographic creatives out there. The Melbourne Disability Institute, Melbourne University, is looking for photographic images to be used on their electronic media and print collateral.

Prize Money: Total prize pool of $5,000. Winning submission/s for leading images will receive $1,000. Winning images for supporting images will receive $500.
Applications close Friday 3 May. The winning entries will be chosen by a panel  who will be looking for images that depict the diversity of disability, reflect originality and visual appeal.

If you are interested go to the competition webpage for details on how to apply.

Call Out for Photo Shoot

This one is for anyone out there who would like a little modelling experience!
Family Planning NSW is holding a photo shoot for their new brochures.
They are looking for people with disability age of 18 - 30 years. 
The photos will show people visiting a doctor's clinic and reading booklets. 
The brochures will help people with disability decide if they want to visit a Family Planning NSW clinic.
Photo shoot will take place at Family Planning NSW in Ashfield.
If you are interested, contact Erin on 8752 4312 or E: erind@fpnsw.org.au

World Down Syndrome Day

Leave no one behind 

Leave no one behind is the international theme for World Down Syndrome Day this year.

'All people with Down syndrome must have opportunities to live fulfilling lives, included on a full and equal basis with others, in all aspects of society. 

The 2030 UN Agenda for Sustainable Development, a global plan of action for people, planet and prosperity, pledges that “no one will be left behind”.'

Watch the video 

What Makes Me Proud?
Down Syndrome Australia has published 21 stories over the last three weeks, reflecting on the proposition "What makes me proud?". All 21 stories available on DS Australia website for those of you who are wanting to binge view to celebrate the day!

Down Syndrome Australia patron the Governor-General Sir Peter Cosgrove will be hosting an event in Canberra to celebrate

Down Syndrome NSW will be celebrating on Sunday with our Afternoon Tea with guest speaker Dr Ellen Skladzien from Down Syndrome Australia.

Plenty of schools across NSW have engaged with "Lots of Socks" this year too

Read an employment success story from Canberra
Kathryn and Peter are kicking goals on World Down Syndrome Day
by Megan Doherty
in The Canberra Times

"Kathryn Rodwell and Peter Bartholomew have been working for the last 18 months on the Ginninderry project, job-sharing at the head office, helping in all kinds of ways to support the creation of a massive housing development in the north-west of Canberra."

Library Shelf

The Essential Guide to Safe travel-training for Children with Autism and Intellectual Disabilities
by Desiree Gallimore
Published by Jessica Kingsley Publishers

Travel-training, as a topic, can often bring on a weary sigh amongst parents and is not usually high on everyone's reading list. This one, though, is a travel-training book with a difference. Whether you are looking into travel-training for the first time or need to reignite some enthusiasm for the project, this is the book for you. It provides a clear outline of what a good travel training program (as distinct from assisted travel) should, and can, be like.

"For those growing up with an intellectual disability or autism, comfortable, safe and independent travel will prove an invaluable life skill. The key to pursuing fulfilling work and leisure activities and developing as an individual, it also brings a liberating level of self-sufficiency and reassurance of equality within society."


Dr Desiree Gallimore is a well-credentialed Sydney-based psychologist and mobility specialist. Dr Gallimore's website traveltrainingsolutions here







Life as Jamie Knows It: An Exceptional Child Grows Up
By Michael Berube
Published by Beacon Press

Those of you with children 20 and over will probably remember reading Life as we Know It back in 1996, a book chronicling the early years of Jamie's life. Jamie is now in his mid twenties and this book, as did the first, blends personal narrative with observations about social inclusion, health, advocacy and public policy.

Jamie's Investigations: The Art of a Young Man with Down Syndrome by William Benzon can be read on Academia










Contact: library@dsansw.org.au or phone the office 9841 4444

Accommodation

The Housing Hub is a website that allows people with disability to look for SDA (Specialist Disability Accommodation), SSA (Supported Shared Accommodation or Group Home) and private rental vacancies, in four different states. The database is searchable by region.

Library Shelf

We have decided to revive and refresh Keeping Up with Down Syndrome NSW as our Library + Information blog. Here we will post information about our library resources as well as other information that will be of interest to our members and readers.

Our library is alive and well, with the exception of general online access to the catalogue, for which we offer apologies and still hold hope for restoration to the outside world! The catalogue works at full capacity but only within our office itself. In the meantime please call the office or email the library and we will assist with your information needs. If you would like to recommend any books or resources for purchase please let us know by email library@dsansw.org.au

New Title on the Shelf

Supporting Positive behaviour in children and teens with Down syndrome 

The respond but don’t react method

by David Stein
Published by Woodbine House

David Stein is a paediatric psychologist and co-director of the Down Syndrome program at Boston Children's Hospital. 
The book draws on his wealth of clinical experience with young people who have Trisomy 21. Very much the compact handbook, it is a good title to share with teachers and support workers.
The behaviour management principles covered in the book:
Be proactive not reactive
Be consistent
Use visual shedules and social stories to redirect behaviour
Develop a reward system
Keep emotional reactions in check
Teach siblings to ignore certain behaviours
Know when to seek professional help

Very much the compact handbook, it is a good title to share with teachers and support workers. This is a great read and highly recommended.

More of David Stein's work, available online, below

Dr David Stein discusses his ideas on The Lucky few Podcast from 9 November 2018
The Lucky Few

Behavioral Issues in Down Syndrome, Parts 1 & 2 (duration 24 mins each)
Dr Stein in discussion with Dr Vellody,
on the Children's Hospital of Pittsburgh website

Behaviour and Down syndrome: A practical guide for parents
by David Stein
Published by Children's Hospital Boston
12 page PDF free to download

Nicola Grove in Melbourne (Video link available)

STORY WEBS: anecdotal narrative and the fabric of being
Human beings seem to spend a lot of their time together exchanging stories about their lives. These so-called “small stories” are now regarded as critical in building a sense of personal identity, relationships and communities, but are under-represented in research in intellectual disability.  This talk draws on Jayne Clapton’s metaphor of the fabric of integrality, and will illustrate some of the mechanisms whereby the exchange of stories helps to break down barriers and stigma in the lives of people with severe and profound intellectual disabilities.

Nicola Grove has been a teacher, speech and language therapist and university lecturer. She left her job at City London University in 2004 to set up the UK’s first company of storytellers with intellectual disabilities (www.openstorytellers.org.uk). Since then she has been researching and developing ways of authentic storytelling for people with severe communication disabilities. She has worked internationally, in Japan, South Africa, Canada and Europe.

Dr Grove will be delivering the (Living with Disability Research Centre) LiDS March seminar at La Trobe University at 3pm on Wednesday 6 March.
If you would like to attend or join remotely via zoom, email Sophia Tipping - s.tipping@latrobe.edu.au.

If you are interested in Nicola Grove's work we have a couple of her books in our library.

Voting NSW State Election

Saturday 23 March 2019 is voting day in NSW. In NSW we have 4 year fixed term governments.
How do you cast your vote in the NSW election?
Step 1:

Verify that you are eligible to vote on the NSW Electoral Commission website

Step 2:
If you are not on the electoral roll then you will need to enrol to vote.
This can be done online on the Australian Electoral Commission enrol to vote webpage.
If you would like to use a paper form these can be obtained at a Australia Post office, an AEC office, or one can be mailed to you.
Best option is to read the AEC How to Enrol to Vote Easy English guide for details.

Step 3:
In the NSW election some people are allowed to cast their vote online (iVote) or over the telephone.
Eligibility criteria for iVote:

• My residence is not within 20 kilometres, by the nearest practicable route, of a voting centre.

• I cannot read or write, so I am unable to vote without assistance
   
• I have a disability (within the meaning of the Anti-Discrimination Act 1977) and because of that disability, I have difficulty voting at a voting centre or I am unable to vote without assistance
   
• I am a silent elector.
   
• I will be interstate throughout the hours of voting on election day.
   
• I will be overseas throughout the hours of voting on election day.
   
• I am a person who is blind or has low vision so I am unable to vote without assistance

More details about applying for iVote, and how to cast your vote this way, visit the NSW iVote website
Go forward and express yourselves democratically!

PS
The NSW Council for Intellectual Disability have made a great video about how to vote
Watch it here https://www.facebook.com/watch/?v=603943316700448

NSW Education Disability Strategy

Disability Strategy A living document 
Improving outcomes for children and young people, and their families 

Published last week by the NSW Department of Education. Definitely worth a read if you have a child in school or are an educator yourself.
The document outlines areas for immediate focus:
1. Strengthen support
2. Increase resource and flexibility
3. Improve the family experience
4. Track outcomes

Alternative formats available on the departmental website
The easy read version has been really well designed.

Stand By Me Campaign

Don't Ditch Disability Advocacy

The Disability Advocacy Alliance has organised a rally in Sydney tomorrow.

Where: Martin Place (between Castlereagh and Pitt Sts)

Date: Sunday 24 February 2019

Time: 11am

The Alliance seeks to get the NSW government to commit to secure, long term funding for disability advocacy, information and representation organisations in NSW.

Other things you can do to support the campaign include writing to the Premier, meeting your local MP as we approach the NSW state election, undertake some social media sharing or sign the petition that is running... Stand By Me 

The Stand By Me website contains plenty of information and resources to support the campaign.

The easy read version of the Stand By Me Position Statement is highly recommended

Ellen's 6 Months Review

It has been six months now since I have been at work at DSNSW. I have learnt some new skills.

• I am learning how to do some database entry 
• I do things like: Update their membership, Renew their membership.
• I make phone calls to the up club members to renew their membership. 
• Putting people into events they have been to 
• I got a new article about me in the VOICE magazine. I feel excited I was so happy to show it to my family and friends. 
• I attend weekly staff meetings and give them a verbal report.
• I give feedback to the staff on their projects. 

Over the next six months I like to keep learning new skills so that I am busy all the time I really like my job here  

Ellen’s tips for a preparing for a job interview

·      Listen to your favourite music to keep you calm

·      I feel good and confident in a new outfit

·      Make sure you double check your resume and bring it up to date

·      Research the company for example, check out their website

·      Find out how long you have to travel to make sure you be there on time

·      If you feel nervous it’s ok to ask if you could bring a support worker with you

·      Prepare the night before for example, lay out your clothes and any documents you might need to take

·      Have an early night

Our new admin assistant Ellen Hester did a fantastic job presenting at our Education Conference last week.  Here's what Ellen had to say about her experience.

Ellen’s Blog’s                                                        29/3/18

I felt excited when I got to do a speech at the Conference. I also gave some advice to the teachers at the Conference about what I have done at school. I did my presentation on power point slide and talked about what I have done at school. Also I am the new office admin at DS NSW. 

I feel really comfortable when I am giving a speech up on stage. For the good points Marissa gave me a couple of questions I have to answer which it is really good. But for the bad points some teachers didn’t ask me any questions when I gave a speech to them which was fine though.

My friend Rae came to the conference she was a bit nervous but Rae spoke really well. When she gets the hang of it she was fine when she gave the speech to the teachers. Also towards the end of the speech I gave her a box of Favourite chocolates to share with her family. She was really happy I gave it to her.

For Thursday and Friday the people there were really nice. I get to hand out the chocolates to the guest speakers. They did really well and also on the morning and afternoon breaks we get in there and mingle with other people. It continues towards at the end of the day but I left around 1pm. But the food was amazing there were sandwiches and filled pastries and jam drop donuts were my favourite. When I spoke on Friday, when I finished my speech Chris gave me Lint Chocolates which was great. 

        

World Down Syndrome Day 2018

How you can be part of Down Syndrome Australia's Social Media Campaign in March 2018.

Happy New Year to all our friends and community! We hope 2018 is full of promise and potential for everyone. To get things started, we are already preparing for World Down Syndrome Day 2018 in March. DSA invites you to be part of their Social Media Campaign by contributing your story under the "What I Bring to the Community" theme. DSA wants to hear from people of all ages, telling us about how you are involved in the community.  This could be in your job, your school, your sporting club....anywhere that you feel welcomed, appreciated and belong.  Also, you can tell us about your problems and how you have overcome them, who has helped you, and what advice you have to other people facing similar problems.

All the stories and photos and videos will be compiled into an exciting Social Media Campaign to recognise and celebrate World Down Syndrome Day in March 2018.

Visit the website for more information.  Download the information sheet template.

Submit your stories to: info@downsyndrome.org.au asap - before 12th January if you can.

And don't stop there!  This blog is the ideal platform to share your stories and hopefully help each other out with how you have overcome challenges in your community.

We're back!

Hello everyone,

I'm the new blog editor for Down Syndrome NSW.  It's nice to meet you all! I'd like to begin by thanking former editor Jill O'Connor for her ten+ years at the desk  - that's over 4000 posts - and acknowledge her passion and commitment to furthering the cause of our community.  Thank you Jill.

I recently came across this video posted on our facebook.  I considered it very powerful and moving so I'd like to share it now.  Frank Stephens' Opening Statement on Down Syndrome

Thank you for reading ...

After 10 years as blog editor, and 28 years of working in various information roles with Down Syndrome NSW, this is the last of 4,400 posts from me. 

Thank you for reading, for your interest and contributions over the years. 

Contact details for Down Syndrome NSW are in the list of page links at the top of this page, just under the banner.

Jill O'Connor
9 June 2017

Weekend reading and viewing: 10 - 11 June 2017

There is so much in this video that I want to dissect about the Down syndrome diagnosis narrative, but honestly, I don’t feel like making this a resource post… let’s just talk about it as friends do. Is that cool with you? 

But first – watch it if you haven’t ...

Let’s Talk: The Conversation On The Down Syndrome Diagnosis Narrative …

Meriah Nicholls, 5 June 2017

Cara discusses common Down Syndrome myths and explain how a community of “rockin moms” (moms of kids who “rock” an extra copy of the 21st chromosome) are working to socially construct society’s “next” conversations about DS through critically examining the impact of our language choices ...

Socially Constructing Down Syndrome: Confessions of a Rockin Mom 

Cara Jacocks, TEDxACU, published  26 May 2017 (video 17m 31s)

... I wrote a column published with the heading “Welcome 8 point 1 point 5 (his birth weight) We love you”, which went on to win an award, while Nick went on to be one of the best things that happened in our lives ...

David Margan on his Down syndrome son Nick turning 21

David Margan, The Courier-Mail, 7 June 2017

At a young age, I learned to be a responsible person. The instinct to be a protective sister came naturally. How could I not? The love of a baby, in my case a younger brother, came so natural. I couldn't imagine anyone not loving or adoring this small person. At this time, I didn't know he had Down syndrome, but it didn't matter. I think I was too young to understand what this even meant, and society wasn't open to those with disabilities during this time ...

Young Life with a Brother with Down Syndrome

Rhoda Penny, Rhoda G's Online Cafe, 29 May 2017

... In expanding your friendship and reading circles to adults from the disability community, you will likely see things from an altogether different perspective, and one that is often highly enlightening!

Blogs are an excellent avenue by which you can forge forth and figure out who sounds most like someone you want to get to know ...

Mix Some Blogs by Adults with Disabilities into Your Parent Blog Reading Routine

Friendship Circle, 30 March 2017

... there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with ...

5 things children totally understand about disability that most adults do not

Emily Beitiks, Think Inclusive, 26 January 2017