Executive Functioning: Volume 1, Issue 1, June 2014

From the Canadian experts who edit the brilliant, free online newsletter for support workers, Service, Support and Success, comes Executive Functioning, a new free online publication providing resources for 'senior leadership in organisations providing human services'.  

The very first issue has been published this week, on Evidence-Based Decision Making.

In the words of Dave Hingsburger:

... it aims to present information in a fun, easy to read style, about issues of importance to senior leaders. This publication will come out every 3 to 4 months and will be available for free by subscription. If you are interested in receiving the inaugural issue you can do one of two things. 

1) email and request the first issue - then you can decide to subscribe or not
2) simply subscribe now

Subscriptions, or single copies, can be requested from dhingsburger@vitacls.org

Ryder Jack Manulat 2011 - 2014: funeral service and memorial foundation

Many readers will have seen the very sad news of the sudden, unexpected death of two year old Ryder Manulat, from meninococcal disease, last week.  Ryder's family has been actively involved in the DS Hunter Region during his short life. Now DS Hunter region members are supporting Merran, Ray and their family in their loss, and are invited to attend his funeral, to be held this Friday:

11am, Friday 20th June 2014

Nelson Bay Baptist Church
19 Government Road, Nelson Bay 

Candy Connors, Liaison and Support for the DS Hunter Region community, has asked us to pass on this information for anyone who is interested:

Many people have emailed me with their condolences for the family and I will ensure that each of them is collated in a booklet for the family. If you would like to add your own thoughts to that please simply email them to me at dshr@dsansw.org.au 

On behalf of Merran and Ray, DS Hunter Region is in the process of setting up a foundation to honour Ryder's memory and to support children with Down syndrome 0 - 5 yrs and their families here in the Hunter. That will take a little time, so for now Down Syndrome NSW is assisting by accepting donations named 'In Memory of Ryder Manulat' until the foundation is established and able accept donation directly.

• Upside Down, Facebook page from Ryder's family. 

Ageing Well - a UK Learning Disability Week project

This week is Learning Disability Week in the UK (where 'learning disability' is the commonly used term equivalent to 'intellectual disability').

The British Institute of Learning Disabilities is marking the week with a series of five emailed newsletters ' focusing on promoting a better understanding of the lives and needs of older people with a learning disability.

The first issue is introduced with a brief explanation of the aim of the project:

We decided to focus on this topic as delegates at a recent seminar told us that there needed to be more done to promote the issues relating to good support for older people with a learning disability. So we're starting now!

Issue 1, Understanding the lives and needs of older people with a learning disability - what do older people say?

Today we focus on what older people are telling us about what is important to them and we're also looking at some of the background information about support for older people with learning disability.

Issue 2, Understanding the lives and needs of older families and family carers

... Many older family carers worry that their son or daughter is living a prematurely ‘old’ lifestyle because they share the social networks of their parents. As family carers grow older, and sometimes frailer, their social and support networks shrink exposing them to the risk of growing isolation (Magrill 2007) ...

Issue 3, The challenge for providers in planning and delivering good support for older people with learning disabilities

... There was a realisation by some staff that they perhaps don’t record all of the information they know about people’s lives, history, what’s important to them, what makes a good and a bad day, so that if they weren’t there someone else would at least know what was important to the person, important routines etc ...

Issue 4, Delivering good health, wellbeing and dementia support for older people with learning disabilities

... People with learning disabilities share many of the same age related physical and psychological changes as other older people. People with learning disabilities are, however, 2.5 times more likely to have health problems than other people but are often poorly served and discriminated by health services (Department of Health 2001; Emerson and Baines 2010; Mencap 2012) ...

Issue 5, Delivering good support for older people with learning disabilities - what next?

We've been delighted by the many responses we've received to this year's learning disability week work around ageing and people with learning disabilities. The responses on Twitter, Facebook and by email have made clear that raising these issues have struck a chord, both for individuals and organisations ...

Of course, similar issues arise for older people and their families here too, and this series is a useful introduction to BILD's existing resources designed to support older people.   Scroll to the bottom of each issue for links to subscribe, and/or follow BILD on Facebook.

Voice: the national journal of Down Syndrome Australia

Voice is the members’ journal of Down Syndrome Australia. Issues are published in May, August and December.

In the next issue of Voice we will be launching a Letters to the Editor section and would love it if members sent in short letters up to 250 words. You could make a comment about an article you have read in Voice, about an issue raised by the journal, or an idea you may have for the journal. It will be the editor’s decision whether to publish letters.

The guidelines for the various sections of Voice are here, if you would like to submit a contribution.

We'd love to hear your feedback on the most recent issue of Voice (May 2014), which had an early intervention theme.

'Ramp Up' will stop publication on 30th June

A message from the Ramp Up team
Stella Young and Karen Palenzuela, Ramp Up, 5th June 2014
After much speculation about the future of Ramp Up since the Federal Budget announcement, we have some news to share.
Over the last three and a half years, Ramp Up has published over 500 pieces of original content, facilitated discussion on a broad range of disability issues, developed a strong social media presence and, perhaps most importantly, published stories and perspectives that put forward a strong case for the establishment of the NDIS. We've also had the honour of publishing great work from many talented, emerging writers with disability.
As many of you are aware, in 2010 the ABC received funding to establish an online destination to discuss disability in Australia. The funding came from the Department of Families and Housing, Community Services and Indigenous Affairs, which is now the Department of Social Services. Our current contract with DSS finishes on 30 June this year and has not been renewed ...

Disability dissent silenced as ABC’s Ramp Up scrapped

Shakira Hussein, Crikey, 6th June 2013
Abolishing the ABC’s Ramp Up, a national platform for disabled voices, looks like an attempt to suppress dissent at a crucial moment for the sector, writes Shakira Hussein.

Registration (free) is required to read the whole article.

Petition to Mark Scott: Save Ramp Up

People With Disability Australia, Change, 23rd May 2014
Preserve the ABC Ramp Up website. The only consistent voice for people with disability in the mainstream media ...

Medication, TEAMS!: two new issues of Service, Support and Success

Two new issues of this excellent Canadian publication are now freely available online:

Service, Support and Success is a monthly newsletter designed for direct support workers supporting people with intellectual and developmental disabilities. It is published by Vita Community Services (Toronto, Canada), under the editorship of Dave Hingsburger and Angie Nethercott. 

Volume 3, Issue 5, May 2014: Medication, Education and Advocacy

How many medications do you take each day? How did you decide to take them, and how do you know they work? How bad are the side effects, and what do you do to tolerate them?

One last question: What would happen if you were unable to ask yourself any of these questions or if no one helped you figure out the answers? ...

Volume 3, Issue 6, June 2014: TEAM! Simple Strategies to Success

... Our team has been asked several times questions like: “What’s your secret?” and, “How did you become such a strong team?” Agencies that want to open similar treatment residences ask, “How do you keep staff?” Again, there is no secret, but here is what we have identified that makes us truly a TEAM ...

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

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

Weekend reading and viewing: 14th - 15th June 2014

Living with Down syndrome 
The Feed, SBS 2 TV, 11th June 2014 (7m 48s)




How is he doing?

Jennifer Jacob, Blessings Beyond the Ordinary, 9th June 2014
A loaded question that causes me to stop and think nearly every time.

"How is he doing?"

This comes up in many different venues from close friends or family to complete strangers that seem to be in on our little extra chromosome secret. Why is it loaded? Mostly because there are a million ways, it seems, to answer the question. Also, because I sometimes find myself more questioning the intent of the question, rather than taking it as just a question ...

Tale of Inclusion: Down Syndrome and Violence at the Play Area
David Perry, How Did We Get In This Mess, 29th May 2014
... at a public play-place her son was hurt by a child with DS and she didn't know what to do about it, because how can you blame a child with DS for anything? I offer the comment in full and then my response ...

How Long Can We Wait for Inclusive Education?
Think Inclusive (Podcasts) #10, January 2013
(Tim Villegas) had the pleasure of visiting with Cheryl Jorgenson one evening in January of this year ... discuss(ing) why it has taken so long for inclusive education to catch on in the United States and what needs to happen to break the barrier for it to become part of best practices for education. She even gives me advice on whether I need to quit my job or not. You will not want to miss her surprising answer ...

My Perspective Photography Award (UK) - winners announced
DSA (London, 5th June 2014
Congratulations to outright winner, Stephen Thomas, and equal second place winners, Tim Beale and Rosika Edmund.  All 25 award winners and runners up entries can be viewed online. The runners up include Carlos Biggemann, who now lives in New Zealand, and attended school in Sydney for some time.

Budget impacts for people with disabilities and their carers: emerging details

Bursaries for Young Carers
The Commonwealth Government plans to commence the Young Carer Bursary Program in January 2015. There will be 150 bursaries valued at up to $10,000 each to assist young carers (under 25 years) continue their education.

Currently little detail is available about the application process.  We will be keeping a watch on the websites of Carers Australia  and Young Carers for further information.

• Currently in Australia it is estimated that 380,000 children and young people help care for relatives.

Click here to download this document from Carers Australia

Opinion: People with disabilities need a champion that understands their lives

Ron McCallum, The Age, 30th May 2014

The decision by the Abbott government to stop funding a disability discrimination commissioner is a blow for people living with disabilities who still need someone to champion their cause. The move is also short-sighted and counter-productive given the government's own stated aim of improving employment for people with disabilities and Australia's internationally recognised role as a standard bearer for people with disabilities ...

• Ron McCallum AO is an Emeritus Professor and former Dean, Faculty of Law, University of Sydney, and Senior Australian for the Year 2011.

Pensioners $1600 study aid to be axed

Patricia Karvelas, The Australian, 29th May 2014
More than 41,000 people will lose up to $1622 a year with the axing of a little-known pensioner education supplement. The supplement provides finan­cial help for full or part-time study in a secondary or tertiary course at an educational institution approved by the federal government. It is paid to people on support, including disability support pensioners, Parenting Payment single recipients, carers and widows ... According to data provided to the Senate last month, 41,000 people will lose payments of up to $62.40 a fortnight. Nine out of every 10 people impacted will be disability pensioners or single parents ...

Disabled people likely to face $7 GP payments despite Hockey's assurances
Lenore Taylor, The Guardian, 21st May 2014
The budget does exempt doctors’ visits listed as “chronic disease management items” from the co-payment, but these are likely to be only a very small proportion of the visits to the doctor by someone with chronic health problems ... AMA president Dr Steve Hambleton said “people with chronic disease are likely to pay the co-payment for most of their normal visits to the doctor, which would be considered standard consultations.” ... But he said doctors were worried about its impact on the most disadvantaged patients they saw - very low income earners especially those with chronic conditions ...

Advocacy and rights: news and opinion

Young Disability Leaders Join UN Conference

ProBono Australia News, 11th June 2014
The Australian Human Rights Commission has sent a delegation of young people with disabilities to the United Nations Conference of States Parties (COSP) in New York. The delegation is led by Therese Sands, Co-Executive Director, People with Disability Australia and Rosemary Kayess, Chairperson, Australian Centre for Disability Law (ACDL).

“These young Australians are considered to be emerging leaders in the disability movement in Australia. This trip is a unique professional development opportunity where the delegates are provided with training and mentoring as the next generation of young disability rights advocates to represent the Australian disability sector at the UN,” Therese Sands said ...

• Reports and videos of the delegates addresses are being published on the People with Disability Australia Facebook page.

Budget Calls for End to Disability Discrimination Commissioner

George Xinos, Sourceable, 6th June 2014
... The AHRC Disability Discrimination Commissioner’s role is ... pivotal in achieving the objects of the (Disability Services) Act and relevant Disability Standards and significant concern has been consequently aired in recent weeks. Some of this concern has centred on the capacity of another commissioner to adequately address the needs of people with disabilities, their families and networks on the basis of resources alone. Innes himself, has also suggested that having a commissioner responsible for disability discrimination and not having a disability themselves is an issue. He says that, as the Sex Discrimination Commissioner should be a woman and the Aged Discrimination Commissioner should be an older person, the commissioner responsible for disability discrimination should also have the ‘lived’ experience of disability in order to be able to fulfil his or her role effectively ...

Why visibility matters to disability

Prof Gwynnyth Llewellyn and Prof Eric Emerson, Ramp Up, 3rd June 2014
Professor Gwynnyth Llewellyn and Professor Eric Emerson say the government's decision not to renew the position of Disability Discrimination Commissioner abandons decades of effort in making visible the discrimination and disadvantage experienced by many ordinary Australians.

Bill Shorten urges Tony Abbott to reinstate disability discrimination commissioner

James Massola, Matthew Knott, Sydney Morning Herald, 22nd May 2014

Five members of the Australian Human Rights Commission have lashed the government for ripping $1.7 million out of the organisation and defunding the disability discrimination commissioner role ...

A survey for the NSW Attorney General and Justice Department

During June, Taverner Research is completing a study of people with disabilities on behalf of the NSW Attorney General and Justice Department, and we have agreed to let our members know about it, in case you would like to take part:

We would like your opinion.

If you have a disability and have been in contact with any of the services listed below in the last 12 months we would like to talk to you about your experiences: 

• Anti Discrimination Board 

• The Administrative & Equal Opportunities Division of NCAT – the NSW Civil and Administrative Tribunal 

• The Guardianship Division of NCAT, formerly the Guardianship Tribunal 

• Law Access 

• Local Court 

• NSW Trustee and Guardian Financial Services section 

• Registry of Births Deaths & Marriages 

• Victims Services. 

What you tell us will help to improve these services for people with disabilities. 

• The study will be conducted in April through to June 2014. 

• We will need about 1 hour of your time. 

• We will organize to talk to you by telephone or over the internet or we might be able to talk to you at a location close to your home to make it easy for you to get to the interview if that would work better 

• You are welcome to bring an advocate to the interview. 

• As a thank you we will give you an $80 gift voucher. 

• The study is confidential so we will not tell anyone you have participated in the study. 

If you would like to take part or would like to know more about the study please call Richard of Taverner Research on 1800 212 290.

If you prefer you can email us at surveys@taverner.com.au to tell us you would
like to take part.

Thank you. 

Down Syndrome NSW Calendar 2015 - photo time!

DS NSW members - it's time to start sending in photos to be included in the Down Syndrome New South Wales 2015 Calendar. The theme - "Be Seen in 2015"

Craig Peihopa has very kindly offered to put together another wonderful calendar for us for 2015 and we need you to send in your photos to make it the best one yet!

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).

Latest additions to 'events' pages

These events have been listed on our Other 2014 Events (i.e. not Down Syndrome NSW events) page:

Choosing Employment: Youth with intellectual disability

National Council on Intellectual Disability and NSW Council for Intellectual Disability - forums for youth with intellectual disability, their families and teachers
Six forums across Sydney locations: 17th - 21st June 2014

Towards a Better Life

Foundations Forum workshops on Social Role Valorisation (SRV)

2-Day Introductory SRV Workshops 
15 - 16 July 2014 - Newcastle
5 - 6 November 2014 - Sydney

Passing: 5-day Advanced SRV Workshop 
25 - 29 August 2014 - Sydney

Mental Health and Intellectual Disability Schools Conference 

6th August 2014 - Revesby (Sydney)

Getting the Best from the NDIS - making it work for people with intellectual disability
NSW Council on Intellectual Disability - register your interest by emailing info@nswcid.org.au
August 28 and 29 2014 - Newcastle

7th Down Syndrome International & World Championship

Down Syndrome International Swimming Organisation

Team Australia 2014 - Down Syndrome Down Under Swimming Organisation
7th - 15th November 2014 - Morelia , Mexico

Congratulations: Richard Wilkins AM

Comedy is King fundraiser, 2009

Our congratulations to Richard Wilkins, who has been a great support to Down Syndrome NSW over many years, both through his fundraising activities and  by speaking about his son, Adam:

Wilkins 'blown away' by Queens Birthday honour

AAP, 9th June 2014
Television presenter Richard Wilkins says he's blown away after being recognised in this year's Queen's Birthday honours list. Wilkins has been made a member in the general division of the Order of Australia (AM).

Best known as a veteran entertainment reporter, Wilkins also supports charities such as the Cerebral Palsy Alliance, Cure for Life Foundation, Sony Foundation, Autistic Association and the Down Syndrome Association.... He has said his eldest son Adam, who has Down Syndrome, is the inspiration for his philanthropic work.

• Richard Wilkins is made a Member of the Order of Australia in the Queen’s Birthday honours, News.com, 9th June 2014
• Richard Wilkins: Meet my amazing son, Woman's Day, 25th June, 2012

7th Down Syndrome International Swimming Championship: Mexico, November 2014

Down Syndrome Down under Swimming Organisation is deep in preparation with the swimmers chosen for Team Australia 2014, to represent Australia at the 7th Down Syndrome International & World Championship to be hosted by the Down Syndrome International Swimming Organisation in Mexico in November.

Lucy Dumitrescu and James Lawrence from NSW have been named in Team Australia 2014, which will compete against swimmers from 15 other nations. Both James and Lucy also represented Australia in Italy at the 2012 international championships. Lucy has a long record as a national representative in Ireland (2006), Portugal (2008), and Taiwan (2010).

You can read James and Lucy's athlete profiles, and those of all Team Australia members here. Congratulations, and we wish you all the best for your training and competition in Mexico.

7th Down Syndrome International & World Championship 

7th - 15th November 2014
Morelia, Mexico

• Down Syndrome Down Under Swimming Organisation on Facebook

Focus group about what makes a good mental health professional

From 3DN (Department of Developmental Disability Neuropsychiatry, UNSW):

What is this project about?

3DN at the University of New South Wales wants to improve the quality of mental health care provided to people with an intellectual disability. We have a project that aims to identify the qualities that mental health professionals need to provide high quality care to people with an intellectual disability.

Who can participate?

Family members, friends, advocates and other people who support a person with an intellectual disability and co-occurring mental ill health.

What will it involve?

Participation will involve attending a focus group. This will take approximately 2 hours.

During this focus group you will talk with other family members and support people about what qualities make a good mental health professional.

What will this information be used for?

This information will help us to know what the workforce needs to learn and do to provide high quality mental health care to people with an intellectual disability.

What do I do if I would like more information? What do I do if I am interested in participating?

Please contact Beth Turner, Project Officer, on (02) 9385 2208 or beth.turner@unsw.edu.au

DSA congratulates chairman, Angus Graham OAM

Down Syndrome Australia (DSA) is delighted to congratulate our inaugural Chairman, Mr Angus Graham, on being awarded the Medal in the Order of Australia in the 2014 Queen’s Birthday Honours.

Mr Graham was instrumental in bringing Down Syndrome Australia to life three years ago and in his time as Chair has steered the organisation through many challenging times.

Angus has brought both professional expertise and personal passion to the role, and has dedicated countless hours to ensuring the voice of people with Down syndrome and their families is heard on the national stage.

Weekend reading, listening and viewing: 7th - 8th June 2014

I love grilled cheese (3m56s)

• Background story: Dad hopes short film will break down stigma surrounding Down

My little sister inspires me to be stronger, better, kinder

Rebecca Bradley, Irish Times, 2nd June 2014
Her story is not flashy, or headline-worthy. Her name will not be in any history books. If she walked past you on the street, you wouldn’t notice her any more than other passers-by ..,

What if she lives with us forever?
Ellen Stumbo, Finding Beauty in My Brokenness, 10th May 2014
Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, “Will she live with us forever?” When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born?

Why my daughter's birthday shames those who think people with Down's are not fit to live

Dominic Lawson, Daily Mail, 2nd June 2014

... I had no idea what to expect when she was born; but because I was concerned that people would not know whether to commiserate or congratulate, I wrote an article saying that it should be the latter — and how happy I was that her much-loved elder sister had a sibling. On the whole, the reaction of readers was positive, but a small number said something to the effect of ‘She may be a beautiful and loveable baby now, but just wait until you see what a teenager with Down’s is like’ ...

Should we be frightened of disability? (Audio file 10m)

Tom Shakespeare, A Point of View (BBC Radio 4), 30th May 2014

Many people assume that disabled people must be unhappy. But the empirical evidence doesn't back this up. In A Point of View, Tom Shakespeare argues that disability is nothing to fear.

• Transcript

'Life skills' program teaches wrong lesson

Stella Young, Ramp Up, 2nd June 2014

Is it any wonder that rates of violence are so high when young women with disabilities are being taught that they have no say in what happens to their bodies?

A matter of perception

David Morstad, Apostrophe Magazine
Do you ever look at someone and make assumptions about the kind of person they are? Of course you do. We all do. Chances are your assumptions are inaccurate; but then, so are the assumptions of others about you ...

2014 National Disability Awards nominations now open

The National Disability Awards recognise people across a wide range of sectors who are working to provide opportunities for economic and social participation for people with disability.

Nominations for the eighth annual Awards opened on 3rd June and close on 18th July 2014.

The Awards are one of the ways people can encourage support for people with disability and increase awareness of the benefits of extending more opportunities for people with disability to be included in work and society.

This year there are eight Award categories, each highlighting an area where champions of people with disability are making a difference.

The 2014 National Disability Awards will be presented at Parliament House in Canberra on Tuesday 25 November 2014.

• Click here to make a nomination for the National Disability Awards

Source: International Day of People with Disability (Australia)

Turnips and the NDIS ...

The Laughing Turnip
This short, original video was a hit with the audience when it was used as part of a service providers' conference presentation by Jackie Softly and Samantha Connor, this week in Sydney. 'The message, to service providers, is that rebranding and re jigging your agencies isn't enough if you're serving the same old services. People need choice and good information so they can make informed choices regarding their services under the NDIS.'

We can put you in touch with Jackie and Sam if you want to know more about their work (or to contact the actors for a project!).


With the advent of the NDIS and a new direction in self directed services, some service providers are choosing to do new things in a way that their customers want. But what happens when you 'rebrand' and keep the status quo?

Library and resources: 5th June 2014

Inclusive High School Education - Jacob's Story
If your child with Down syndrome is in the mid to upper years of primary school, you will be thinking about high school.

Family Advocacy's video about the transition of Jacob, a young man (who has Down syndrome) into the local public high school, on the NSW North Coast, is told largely by his mother, Annette Bush, with input from his high school teachers and principal:

• Inclusive High School Education - Jacob's Story (19m)

At the end of the video are links to a further three shorter clips highlighting particular points about schooling that parents consider to be important.

Choice, Independence and Best Interest

Resourcing Families latest webinar about decision making and choice with Dr Michael Kendrick titled Choice, Independence and Best Interest. Explores key principles and ideas to support a person with disability to make decisions in their life.

• Click here to watch the Choice, Independence and Best Interest webinar

Members' library

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

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au