Thursday, 31 March 2016

New initiative from My Choice Matters

Launched to day, designed for people with disability, with support when needed - an innovative course to help people with disability to become leaders in their own lives. Now that's an idea worth looking into:

Become a Leader online
This is an online course designed by My Choice Matters to support you to be a leader in your life and in the community around you.

It is based on the face-to-face course that we ran across the state. It gives you the chance to learn at home and at your own pace. So take the leap and become a leader today! 
(Home page, Become a Leader Online website)

Become a Leader Online will take you through understanding what leadership is, asking for what you want, making changes, and working with others. These are all very important steps on your path to become a leader.

Being a leader will help you grow a cause you believe in, help others, negotiate the best out of every situation. These skills will be important when you're planning for the NDIS as well as generally in your life ... (About Us page, Become a Leader Online)
Visit the Become a Leader Online website, and find out much more about people who have done the course, and how you can do it too.

Latest additions to 'events' pages

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 
All current events listings 

One of the Kids
Family Advocacy - learn about inclusive education, hear stories of success from the regular classroom and think about how inclusion can work for your child.
Various dates until June 2016 - across regional and metropolitan NSW

Future Planning
Family Advocacy - a workshop for families of people with disability wanting to take a pro-active approach to planning for the future.
Thursday 28 April 2016 - Wagga Wagga
Monday 9 May 2016 - Coffs Harbour
Friday 24 June 2016 - Dubbo

Wednesday, 30 March 2016


Disability Discrimination Commissioner
The disability community is very interested in the call by the Australian Human Rights Commission for expressions of interest in the position of Disability Discrimination Commissioner published on 18 March 2016. The role has been filled part-time by another Commissioner since the retirement of Graeme Innes in 2015.
Aboriginal Disability Justice Campaign
After many years of being hosted by our good friends at People with Disability Australia (PWDA), the Aboriginal Disability Justice Campaign (ADJC) is pleased to announce the launch of their new website.
The ADJC is a national advocacy campaign that advocates for changes to legislation, policy and practice that leads to the imprisonment and indefinite detention of people with cognitive impairments. The ADJC seeks to highlight the disproportionate impact on Indigenous Australians with cognitive impairments. 
Many of these people have not been convicted of a crime and have been found mentally impaired and unfit to plead. There is a larger group of people with cognitive impairments that cycle in and out of jail. These people have been convicted of crimes. 
The ADJC is particularly concerned about those people who are indefinitely detained in our jails and forensic units around the country.
Inspiration Porn: Don't Take Pictures of Disabled People Without Their Consent
David M Perry, How Did We Get Into This Mess? 22 February 2016
Some suggested rules for life as a good person:
  1. Don't take pictures of disabled strangers without their consent.
  2. Don't share the pictures you shouldn't have taken to the internet without their consent. Their story is not your story to do with as you see fit ..
'No one should have to wait four years for an explanation'
Monica Clifford, The Guardian (UK), 21 December 2015
Monica Clifford’s sister Anne, who had Down’s syndrome, died in July 2010, aged 53, in Mayday hospital in Croydon, south London. The hospital did not investigate her death ... From the beginning I felt an underlying suggestion from the hospital that there was little point in treating Anne, because people “like her” don’t recover from serious illness ...

Book now for Dennis McGuire in Melbourne and Sydney: May 2016

The next big event for Down Syndrome NSW:

Down Syndrome NSW is delighted to announce that Dennis McGuire PhD, internationally renowned Down syndrome behavioural expert will visit Australia in May, 2016. Dennis is co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.
Dennis McGuire is a highly sought after speaker on the areas of mental wellness and ageing in people with Down syndrome (DS).  In 1992 Dr McGuire, with colleague Dr Brian Chicoine MD, established The Adult Down Syndrome Centre  in Chicago. During his tenure as Director of Psychosocial Services for the Centre, Dennis served the health and psychosocial needs of over 5000 adults with Down syndrome. In 2013 he joined the Global Down Syndrome Foundation to establish a centre of excellence for the care of adults with DS and is now in private practice. He regularly presents at national and international conferences and has contributed to numerous publications.
Dennis McGuire will present a series of seminars in Melbourne and Sydney for parents, carers and service providers. There will be separate professional development seminars for health professionals with an interest in intellectual disability.  Interactive webinars with Dennis McGuire will be announced shortly for people living outside the Melbourne and Sydney areas.
‘Dennis is a warm and engaging speaker with a wealth of lived experience in understanding people with Down syndrome and creating the best conditions to encourage mental wellness,’ said Margot Elliffe, DS NSW Board member and chair of the Mental Wellness and Healthy Ageing 2016  Tour Committee.  ‘This is a unique opportunity for anyone in the Down syndrome community to get first-hand information to support healthy ageing and mental wellness for all people with Down syndrome'.
Dennis McGuire will be in 
Melbourne on May 6 (professionals) and  May 7 (family and carers) 
Sydney on May 13 (professionals) and May 14 (family and carers)
For further information call 02 9841 4444 or click register Mental Wellness and Healthy Ageing 2016

Tuesday, 29 March 2016


Hand in Hand is the newsletter of the Down Syndrome Research Foundation, based in Vancouver. It is published four times per year in March, June, September and December. Each issue is packed with practical information for families and professionals working with individuals with Down syndrome, along with updates on what's happening at DSRF. You can read it online, download issues or subscribe.

Anxiety: Roaming Through the Stepping Stones
Melanie Rose and Kevin Alexander, Service, Support and Success, Vol 5, Issue 23, March 2016
We work in an acute in-patient unit of the North Bay Regional Health Center that supports people with Dual Diagnosis. We support a revolving door of people as one of our program’s goals is to return a person back into a safe community home as soon as possible. Some people come to us with a massive library of their history and tips on how to best support them. Sometimes though, people come with no history and a great deal of trauma ...

Centre for Inclusion and Citizenship, 29 October 2015
This video explores how a group of self advocates with developmental disabilities supported by the Langley Association for Community Living created a plain language guide to supported decision making to enable people who have difficulty understanding their making decisions rights, or need support to make decisions about their life.

Taking Action on Education: All students learning together - new booklet
To assist families in pursuing inclusion at school in a practical way Family Advocacy has created a new booklet. Taking Action on Education – All students learning together, aims to assist families in their advocacy efforts when talking to schools and the community on the importance of their child having an inclusive education.

The booklet will be provided to all participants at Family Advocacy's inclusive education workshops One Of The Kids or contact Family Advocacy on

Early Intervention survey - Dr Kathy Cologon, Macquarie University

Parents/caregivers of children in early childhood intervention services are invited to take part in a survey conducted by Dr Kathy Cologon, a well-known researcher in this field at Macquarie University:

Priorities and practices in early intervention: Parent perspectives
... The survey involves the completion of a questionnaire for parents/caregivers who have a child (or children) who participates in early childhood intervention services in Australia. This research is being conducted by Dr Kathy Cologon from the Institute of Early Childhood, Macquarie University (email: or phone: 9850 9864). 
Early intervention services and supports are going through a period of considerable change in Australia at present. Through exploring the views and experiences of families and staff who participate in early intervention, this study will contribute evidence that is important for developing policy and practice in early intervention ...
The questionnaire incorporates 14 open-ended questions, followed by questions that need to be rated on a scale from 1-5 (these questions relate to your experiences of and your priorities for early intervention support). The final section asks for some brief demographic information and provides the opportunity for you to make any additional comments/suggestions if you wish.

The survey should take approximately 30-45 minutes to complete. You are free to skip any questions that you do not wish to answer ...

Monday, 28 March 2016

News and commentary from the broader disability community

Poverty and the Perfect People
Dave Hingsburger, Rolling Around in My Head, 23 February 2016
... The conversation was interesting for a short while and then it became really strange. As she came to realize that my emphasis was on people with intellectual disabilities, and as she came to understand what that term meant, her interest began to immediately wane. She actually said that at least poverty didn't effect 'those people' in the same way as 'regular people' because they are happy just with the simple things ...

Housing transfer of groups homes to the NGO sector 
Family Advocacy Communiqué,  March 2016
Do you have a family member or friend in an ADHC group home, soon to be transferred to the NGO sector as the NDIS rolls out? Please get in touch.  We are advocating that housing should not be handed over to service providers, as this could result in the person having few options if problems arise.

Traditionally in group homes, the house and supports have been locked together, so if one isn’t working (for example, if the house no longer suits a resident’s needs) the person loses their supports as well. The control exerted in group homes as they are currently structured can impact every area of a person’s life – access to employment, relationships outside the home, relationships with family and more. It also leaves people vulnerable to abuse as they are likely to hesitate to complain. The current transfer plan means this will not change.
Read our Position Statement on Housing for more information around the separation of housing and supports.

A better situation is one where someone can change their supports without necessarily having to move, and vice versa. The accommodation transfer is the perfect time to make sure support is independent from housing. ADHC have said they cannot commit to this, so we need your help. Please call or email Meg on (02) 98690866 Monday - Wednesday or anytime, if you are facing this situation.

Disabled people experience violence, elder abuse and neglect in 'epidemic proportions', says rights group
Sarah Gerathy, ABC News, 18 March 2016
Horrific allegations of violence, abuse and neglect of disabled people have been detailed by a national disability rights advocacy group in a submission to a New South Wales parliamentary inquiry into elder abuse ...

One of the Boys (video 5m 2s)
Community Resource Unit Inc (Qld), 2 February 2016
CRU exists to create and promote positive change so that people with disabilities can belong to and participate in community life. Our constituents are people with disability, their families and friends and the people in paid roles who support them.

CRU engages with people on questions of values and vision; it provides inspiration and analysis and assists people to shape and deliver helpful, relevant and responsive human services and support arrangements ...

Hannah Rudstam and Wendy Strobel Gower, Pulse (Linked In), 4 March 2016
For most people, the phrase “disability in the workplace” conjures an image of laws, guidelines, and policies. In other words, it is largely seen as a bureaucratic issue involving procedures and transactions. However, a new understanding of disability inclusiveness is emerging. After all the forms are filled in and all the boxes are checked, organizational leaders are now recognizing that something is still missing—something intangible that prevents the organization from fully leveraging all their talent ...

Apartment complex in Golden Valley could become model in housing for developmentally disabled
Don Jacobson, Star Tribune, 18 February 2016
A Twin Cities group is building a new kind of apartment for young adults who are developmentally disabled, a housing model they are touting as one that could meet a need for families with aging parental caregivers.

Since the 1970s, children and teens who are developmentally disabled have mostly lived at home with their parents or other relatives.

Now as adults, many are still living at home even as their parents grow older and less capable of providing them the help they still need. This, advocates say, is becoming a national crisis as the United States sees its first generation of people who are developmentally disabled outlive their parents — because of better health care ...
  • Discussion of this article on Facebook was centred on whether the housing complex described is an example of choice for people with disabilities, or segregation?
Elizabeth Picciuto, The Daily Beast, 24 February 2016
In the panic over Zika virus, major media outlets are calling kids with microcephaly ‘misshapen,’ ‘heartbreaking,’ and ‘dystopian.’ The exact opposite of my joyful, funny, vivacious son ... I am all too aware, however, that people believe he’s an affliction who must be borne, rather than a source of joy and laughter and an occasional pain in the ass—just like my two typical kids.

Change of organisation's name
The organisation previously known as Children with Disability Australia has recently updated its name to Children and Young People with Disability Australia (CYDA).

CYDA is the national peak body representing children and young people (aged 0-25) with disability, providing a link between the direct experiences of children and young people with disability and their families to federal government and other key stakeholders.

Saturday, 26 March 2016

Weekend reading and viewing: 26 - 27 March 2016

Making Down Syndrome Fabulously Ordinary (podcast)
Penny Johnston, Babytalk, 774 ABC Melbourne, 21 March 2016
What do you do when you're the mum of a little bloke with Down Syndrome? Pretty much the same as a mum of a little bloke with just two 21st chromosomes. Leticia Keighley is a very proud mum of a delightful four year old Wade.

A Pill for Down Syndrome
Amy Julia Becker, The Atlantic, 15 march 2016
New research indicates that a treatment may one day lessen the symptoms of the disability. In the meantime, a mother reflects on what that would mean for her child ...

What was once a parlor game—would you take away the Down syndrome?—may one day be a reality ... I am not certain that Penny needs medical interventions to improve her cognition, but I know she needs a social context that welcomes her ...

Breaking the Circle of Sadness
Christopher Blunt, Mercatornet, 21 March 2016
How a little girl with Down syndrome changed my heart and opened my mind
... I concluded that these families of children with Down syndrome were most likely telling themselves they were “blessed” and “enriched,” as a coping mechanism. Keep telling yourself you’re happy having a 47-chromosome child, if it makes yourself feel better, I thought. As for me, I’ll stick with the 46-chromosome version.

As it turned out, the choice wasn’t mine to make. I would get to learn first-hand just how shamefully presumptuous and ignorant my attitude had been regarding families which included a member with Down syndrome ...

The day I won the lottery
Micha Boyett, For Her, 21 March 2016
... It’s not that Ace is somehow better than us, more angelic than us, or operating on a different level of human goodness. It’s simply that he doesn’t seem to grasp for power. He’s not desperate for importance. He simply longs to love and be loved, to know and be known ...

Voices from 'Far from the Tree' - Deirdre Featherstone and Catherine Madden on Down Syndrome. Andrew Solomon, 16 March 2016
Video of in terview with a mother and daughter for Andrew Solomon's acclaimed book, Far From the Tree (available for members to borrow from the DS NSW library).

Is this the world's oldest living man with Down's syndrome? 'Cheeky chap' turns 80
Express (UK), 21 March 2016
A "cheeky chap" who defied all medical odds could be the world's oldest living man with Down's syndrome after celebrating his 80th birthday. Joe Sanderson turned the milestone age on Saturday and celebrated with family and staff at Hazelgrove Court Care Home in Saltburn, where he lives ...

Don't ask what's 'wrong' with my son with Down syndrome
Maureen Wallace, She Knows, 12 March 2016
I’ve parented a child with Down syndrome — the most commonly occurring genetic condition — for almost six years. Despite a lot of practice, I still find myself caught off guard by strangers’ questions, and I have done a physical and emotional double take if someone asks what's "wrong" with Charlie ...

I don't care
Carolina Giammetta on Vimeo (14m 28s)
A mother to be faces the high possibility of having a child with Down's Syndrome and befriends a family who share their experiences and guide her towards a different perspective. #‎MyFriendsMyCommunity‬

Thursday, 24 March 2016

News and commentary on the NDIS (46)

NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me,  for discussion specifically about the NDIS and people with Down syndrome.

February 2016 eNewsletter - NDIS
Includes news and event information

Rachel Browne, Syndey Morning Herald, 14 March 2016Demand for disability services will drive a jobs boom in Sydney's west and south west as the National Disability Insurance Scheme starts to roll out from mid-year ... According to the agency's analysis, almost 30,000 new jobs will be generated by demand for disability services across NSW as the number of people supported under the NDIS grows to 140,000 over the next three years.

Craig Wallace, Open Forum, 8 March 2016
There have been comments from the business sector that the rollout of the National Disability Insurance Scheme (NDIS) should be slowed down. President of People with Disability Australia, Craig Wallace, says if the Business Council of Australia really thinks that Australians with disability and families shouldn't get reasonable and necessary support, it should have the courage and integrity to say so ...
Miki Perkins, The Age, 8 March 2016
What does a man in his forties hope for in life?

A decent job and some money in the bank perhaps. For some, a family. For others, travel and a rich social life.

George Taleporos has some of these. But what he wants most is to be fully independent. Taleporos, 40, uses a wheelchair, and has to rely on family for 24-hour care. Like thousands of people with a disability he is looking forward to July, when the National Disability Insurance Scheme will expand from its trial sites to cover the country ...

The NDIS: there, but for the grace of God, go us all

Pro Bono News, Australia 7 March 2016
The Federal Government has given a reprieve to members of the inaugural board of the National Disability Insurance Scheme, backing away from its earlier plans to replace them all with heavyweights from the corporate sector.

However, claims that the Federal Government is also attempting to remove control of the NDIS from the states have caused anger in the disability sector ...

The Peer Connect website is for people living with disability, their families and supporters. It has information about:
  • Peer Support Networks
  • having choice and control in your life
  • planning and decision making
  • the NDIS 
The website is part of a project called the Disability Support Organisation (DSO) Capacity Building Project.  The project involves 18 membership-based disability organisations from around Australia who help up to 20 Peer Support Networks.

The project has been funded through the NDIA Sector Development Fund for a two-year period.

NDIS Tip: using your plan more flexibly
Sam Paior, The Growing Space, 17 March 2016
As the NDIS goes through a massive growth spurt with all the associated growing pains, here's some information I think you should know about using what’s in your kiddo’s plan. And, in case you’re a bit of a Nervous Nellie with this stuff, I can let you know that NDIS have officially checked this post to make sure the information provided is not misleading ...

Research news and commentary #3 for 2016

MGHfC study finds positive attitudes prevail within families of people with Down syndrome
Massachusetts General Hospital for Children, 8 March 2016
... “Our study demonstrates that positive attitudes tend to dominate within modern-day families who have members with Down syndrome, although the challenges were not insignificant for some,” says Brian Skotko, MD, MPP, co-director of the Massachusetts General Hospital Down Syndrome Program and corresponding author of the study. “These findings come at a crucial time when more pregnant couples are receiving prenatal diagnoses and wondering what the diagnosis will mean for them.” ...
Learning with the Lights Out
Jenny Rood, The Scientist, 1 March 2016
... Toddlers who sleep less than 10 hours display lasting cognitive deficits, even if they catch up on sleep later in their development (Sleep, 30:1213-19, 2007). The effects are particularly strong in children with developmental disorders, who often suffer from sleep disruptions. “Kids with Down syndrome that are sleep-impaired look like they have very large differences in language,” says Jamie Edgin of the University of Arizona who studies sleep and cognition in such children. When comparing Down syndrome children who are sleep deprived with those who sleep normally, she has observed a vocabulary difference of more than 190 words on language tests, even after controlling for behavioral differences ...

Australian national University (ANU), Dept of demography
Investigating the ways in which families in Australia having a child or children with disability are different or similar to families in Australia having a child or children with no disability ... Parents of a child with disability who is currently aged from 0 to 19 years are invited to participate in research interviews ...

Healthy Aging in People with Down Syndrome
Elizabeth Head and Frederick Schmitt, University of Kentucky (via DSRF blog), 12 February 2016
People with Down syndrome are living long, productive and healthy lives. However, although many people remain healthy as they get older, there is an increasing risk for developing Alzheimer’s disease. In people with Down syndrome, this risk is much higher because of the extra copy of a gene for the amyloid precursor protein on chromosome 21 ... The good news is, not everyone with Down syndrome will develop dementia even in their later years. Our goal is to identify ways to help people with Down syndrome age gracefully and enjoy their older years ...

Genomic analysis pinpoints a potential target for treatment of Down syndrome
Bill Hathaway, Yale News, 26 February 2016
A study of changes in the patterns of gene activity in the brains of people with Down syndrome reveals that the formation of the brain’s white matter is affected throughout life, a finding that suggests treatment might be possible for the condition that affects 400,000 Americans ...
A new study indicates that children with Down syndrome who have motor speech deficits have been inadequately diagnosed, which could have a major impact on the interventions used by speech pathologists when treating patients ...

Project aims to improve learning in young people with Down Syndrome
Kristie Auman-Bauer, Penn State News, 5 February 2016
Children with Down Syndrome face many unique challenges, including being able to communicate effectively as they enter into their school years. A new Penn State study is looking to improve communications aids to better meet their academic and social needs ...

NI  (Northern Ireland) research shines light on Down’s syndrome mystery
Ulster TV News,  8 February 2016
Ulster University scientists undertaking ground-breaking research have discovered one of the underlying causes of why many children with Down’s syndrome have poor near-vision

Wednesday, 23 March 2016

Latest additions to events pages

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 
All current events listings 
Special Olympics - for anyone aged 10 years and over who has an intellectual disability. No experience is necessary to take part in the program, and all golf clubs and practice balls will be supplied. “Come and try” day will be held on Sunday 3 April between 1pm and 3pm. Participants should register beforehand. Then Sundays between 1pm and 4pm. The last Sunday of the month will be a competition development session where participants will test their skills on the golf course. Family members or friends are welcome to come along and help during the competition development sessions.
From Sunday 3 April 2016 - Werrington

Webinar: Early Childhood Early Intervention (ECEI)
National Disability Insurance Scheme - panel discussing the new ECEI approach, feedback from the Nepean Blue Mountains to date and how the NDIA will work with partners and participants so children and their families obtain the right supports to give them a good start in life. Join the discussion by sending your questions before or during the webinar.
Tuesday 5 April 2016 - online

Carers and the NDIS
Carers NSW - a free half-day workshop for family members and friends (carers) of people with disability aiming to provide carers with a general introduction to the NDIS, help carers support the person they care for to access the NDIS, and prepare carers to communicate their own needs in relation to the NDIS. Further information. Register online here.
7 April - 21 June 2016 - locations across NSW

Arts news

  • For news about arts events and opportunities (including grants) across NSW, read the Accessible Arts Newsletter online, or subscribe.
Artist Run Initiative: Opportunity for artists with disability
Arts OutWest has recently invited expressions of interest from artists with and without disability living in the Central West to join this new artist run initiative (ARI) project.

Currently, ten passionate and engaged visual artists with disability have become involved. These artists are in the process of communicating and aiming for their first Central West ARI meeting in late March. 

Visit the Arts Out West website for much more information or to join the group contact Zoe Rodwell, Life-Long Learning Development Officer on 0434 368 033 or email or

Arts Activated: call for papers
Accessible Arts (AA) is now calling for proposals for papers, presentations or workshops to present at the 2016 Arts Activated conference, ‘Pathways to Practice’, 20 and 21 September at Carriageworks, Sydney Australia.

Submissions close 5pm Tuesday 12 April 2016 ... details

Australian Chamber Orchestra's Move Program
Accessible Arts Newsletter, February 2016
The Australian Chamber Orchestra's [ACO] Education Program aims to provide students with the skills and inspiration to explore and continue their artistic journey. As part of the development and growth of the Education Program, ACO Move was created to encourage young adults with disability to learn, practice and develop movement responses to music being played live in a safe and inclusive environment.

Dean Watson, the ACO’s Customer Relations and Access Manager, says, "ACO Move is about access in its broadest sense: access to what we do, who we are, how we work, think and create; access to musicians, instruments, staff, administration and facilities. This broad conception of access helps to encourage inclusive and transparent involvement in the creative process. ACO Move is set up to engage as directly as possible with the best disability arts practice, bringing together young adults with disability and members of the ACO - both musicians and staff."

Accessible Arts Grants Program 2016
Accessible Arts is pleased to offer a second year of funding through its 2016 Small Grants Program. Supported by Lifetime Care, the program consists of two opportunities for not-for-profit arts and disability services/organisations and/or for groups or individual artists with disability living in NSW.
  • The Small Grant offers funds for projects at any stage of their creative development and/or public presentation, of amounts between $5,000 – $20,000 Applications close 4 April 2016
  • The Quick Response Grant offers funding up to $5,000 for artist projects that demonstrate evidence of urgency, unforeseen or sudden opportunity ...
All details and application information is on the Accessible Arts website, here.

Nathaniel Richdec, New York Times Magazine, 16 December 2015
An Oakland nonprofit has a startling track record for helping developmentally disabled adults become prolific — and profitable — artists ...

Tuesday, 22 March 2016

It's still World Down Syndrome Day in half the world ...

It's still 21 March in some parts of the world, including New York, where the 5th World Down Syndrome Day Conference is in session. Catia MalaquaisDirector of Down Syndrome Australia, is one of the speakers, on “Powering Inclusion: Changing Cultural Perspectives of Down Syndrome and Disability through Inclusive Imagery and Messages”.  You can see it online here.

Here are just a few more thoughts on World Down Syndrome Day 2016 (there are many, many more online):

A chat with our Chairperson on World Down Syndrome Day
NSW Council on Intellectual Disability, 21 March 2016
... My life is as busy as ever! I may have turned 50 but I don’t feel it. By saying this I mean I haven’t changed, I’m still young at heart.

There are so many things in my life that I never expected to do. Never even dreamt I would achieve. I’ve been part of NSW CID for a long time but I never dreamt I would be the Chairperson one day. This is my second term and I’m still really happy about that ...

What George did - World Down Syndrome Day
Dave Hingsburger, Rolling Around in My Head, 21 March 2016
"What if our baby is George? He has a job. He is in love. He has a full life. What if our baby is George?"

They have a wonderful son, with Down Syndrome.

Many of us with disabilities know that just by living our lives, out loud, out proud, in the most profound political statement we make ...

About Down Syndrome from a Woman with Down Syndrome
Jennifer Bekins, Talk - DS, 21 March 2016
I woke up this morning and started a long Facebook post on what World Down Syndrome Day means to me. Then the site crashed and those words disappeared before they posted.

I have many, many thoughts on Down syndrome. However, my sister April shared her thoughts on Down syndrome and with her permission I want to share them with you ...

We did nothing Special for World Down Syndrome DayEmbracing Wade, 21 March 2016
March 21 is world Down syndrome day. A day when our community comes together to celebrate the lives and achievements of people with Down syndrome. A day to raise awareness and educate the rest of the world about what it looks like to live with Down syndrome today. It’s also my mums birthday… and Wade and I did nothing special ...

Testing Times - World Down Syndrome Day 2016 (video 3m 8s))
Caroline White, Mar 8, 2016
Testing Times is a personal video for World Down Syndrome Day 2016 inspired by my own experience, illustrating how negative journalism and outdated, unbalanced information leads to people with Down's syndrome being wrongly perceived as less value to others. My son Seb is 8 years old. When we were given his diagnosis, 24 hours after he was born, we feared our future. Reality could not be further from that vision. We are a typical family and we wouldn't swap him for the world. He is an equal and valued member of our unit.

L'Arche International
What is meant by the word disability? For Raffaella Monterosso, from L’Arche Italy, it means when your father grows old and there’s nothing you can do but love him. As L'Arche celebrates World Down Syndrome Day, we honour all those with Down Syndrome who, like Raffaella, are taking care of their aging parents. Imagine the world differently.

Speak Out Reach Out vacancy

NSW Council on Intellectual Disability is recruiting:
Speak Out Reach Out (SORO) group is looking for new members to advise NSW CID on issues affecting people with intellectual disability. 
SORO works on the big issues through consultations, forums and writing submissions. The group is well supported by a NSW CID Participation Worker and is a great chance for people to learn self advocacy skills and get advisory group experience in a friendly environment. 
Contact for more information.

Monday, 21 March 2016

21 people with Down syndrome at work - 21 different jobs (21)

Day 21
After a long and fulfilling working life, comes retirement - a relatively new stage for many people with Down syndrome, and steps are being taken to support them to manage the transition from work. We wish Shelli Fanning and others retiring soon, a happy time doing more things that they enjoy as they grow older.

Scott Hewitt, The Columbian, 11 January 2014
Shelli Fanning, 46, worked as housekeeper at Red Lion at the Quay for 23 years ...  It took some time and on-the-job testing to figure out what was easy for Shelli and what required more training and practice, and to set a reasonable number of work hours (not quite 20) per week. But to say that Shelli was coddled or that her work wasn’t valuable is absolutely untrue, according to Red Lion General Manager Paul Thornton ...

The 21 people with Down syndrome at work - 21 different jobs posts have been compiled into a single page, linked in the list just under the banner at the top of this screen. 

It was remarkably easy to find 21 different people with Down syndrome doing 21 different jobs, most of them highlighted in the mainstream media - that might not seem to be such a big deal, given the enormous number of jobs in existence, and the ubiquity of social media that allows us to share them, but it is a very significant change in the space of just two generations. 

And we know of people working in many different fields - farming, all areas of hospitality, as teachers' assistants, in many retail settings, in factories, in different clerical roles, all aspects of the arts to name a few. Some people have had several jobs, others have worked for long periods in one job, some work at several jobs at the same time, stitching together a full-tme working life.

Few of them are working without support, but we started with the concept of the We can work with the right support campaign and close this current series with the same thought. It can be seen from these twenty one examples, that tapping into each person's interests and talents and providing support where needed can lead to very satisfactory employment experiences for employes with Down syndrome and their employers.

There is still a long way to go for many people with Down syndrome who want to work, those who can employ them and those who can support them, but they are showing us how it's done.

UN Secretary-General's Message for World Down Syndrome Day 2016

By adopting the ambitious and universal 2030 Agenda for Sustainable Development, the international community has promised to leave no one behind. This requires empowering children and adults with disabilities, including those with Down syndrome, to contribute to our common future.

Persons with disabilities, including those with Down syndrome, are more than persons in need of assistance; they are agents of change who can drive progress across society – and their voices must be heard as we strive to reach the Sustainable Development Goals.

Toward that end, I recall the words of Pablo Pineda, the actor and writer with Down syndrome. He has called on others with Down syndrome to perceive their own vast capabilities, saying, “They should see themselves as people who can achieve their goals.”

I would add that others in society should similarly appreciate the potential and power of the members of our human family with Down syndrome.

This affirmation should be backed by concrete steps to respect, protect and promote the rights of all persons with disabilities, including those with Down syndrome. I especially call for priority actions to improve opportunities for girls and women with disabilities who often face greater exclusion than boys and men.

On this World Down Syndrome Day, let us resolve to support the autonomy and independence of persons with Down syndrome, including their freedom to make choices, as part of our broader efforts to usher in a life of dignity for all.

Ban Ki-moon

An exhilarating and unexpectedly moving finish to K2C 2016

Greg Simmons, President, Down Syndrome NSW, at the finish line for Kosciuszko to Coogee , Saturday 19 March 2016:
I had the privilege this morning of meeting Lance, Leigh, Evan and Shane and was humbled by the experience. I also met the beautiful Alicia, talked to proud parents, partners families and friends of these blokes and for a moment relived their journey through Lance's inspiring words.  

Nearly $14k raised which is fantastic but it's the awareness, the positivity, the community involvement, the connecting of members that is priceless.  
And when I thought the morning could not get anymore special a couple turned up with a beautiful 5 week old baby girl born with Down Syndrome - they had googled DS and living at Coogee saw the link to K2C. Bravely they thought they would wander down, not having had any connection to the DS community previously. The community gathered around, Lance and the guys shared their story, we talked and shared experiences and emotions as parents.  
Lance, Leigh, Evan and Shane you have created something special and powerful - thanks for bring us on your journey and can't wait till K2C 2017!  
If you have read this please show your support and appreciation of these blokes by donating here (the donation page will remain open for another 4 weeks).
Read the K2C team's own accounts of the last few days and the exciting, and unexpectedly moving finish of Kosciuszko to Coogee 2016 here.

Sunday, 20 March 2016

21 people with Down syndrome at work - 21 different jobs (20)

Day 20

A great deal of progress has been made over the last couple of years, with increasing inclusion of people with disabilities in all forms of advertising. And none is more prominent than Australian model, Madeline Stuart, as you probably know.

Her recognition in the media is largely about her successfully emerging career as one of very few professional models in the world with Down syndrome, and she has been ready to capitalise on her access to media to advocate for others with Down syndrome too.

Lately, Madeline has worked for a second time at New York Fashion Week in February, and the most recent media coverage has been for a wedding venue promotion in which she  models a number of bridal gowns:
...  ‘If she gets a lot of attention, it’s amazing because we can speak to the world about inclusion and diversity. In a way, if she doesn’t get as much attention it means it’s becoming the norm. It’s a win either way.’
Madeline's own website will lead you to her presence on other social media platforms.

Added 21/03/2016:  Madeline Stuart, Supermodel With Down Syndrome Wants You To Dream Big, Julia Naughton, HuffPost Australia
The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

Saturday, 19 March 2016

21 people with Down syndrome at work - 21 different jobs (19)

Day 19
We all work for many reasons, and you can see by his reaction to his first pay day  that for 23 year old office worker Tim, that is an important one. He has more to say about his job here:

About Down's Syndrome : Tim
Down's Syndrome Association (UK)
... I got my first pay cheque this week. It was great. I now have my own bank account and card. I can save money and spend money. The first thing I did was take some money out using my card and brought a round of drinks for my family and friends! ...
The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 
You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at

Friday, 18 March 2016

Weekend reading and viewing: 19 - 20 March 2016

The World Down Syndrome Day 2016 edition

A small sample of the many social media promotions of the 2016 World Down Syndrome Day 
theme identified by the hashtag #‎MyFriendsMyCommunity‬ in the lead up to 21 March 2016.

World Down Syndrome Day 2016 - PREVIEW - #MyFriendsMyCommunity
Down Syndrome International, 14 March 2016
Down Syndrome International presents a global video journey promoting inclusion of people with Down syndrome. "My Friends, My Community" features interviews with children from around the world talking about their lives, friendships and aspirations. This global video event is presented for World Down Syndrome Day, Monday 21 March 2016.

My Friends, My Community campaign, European Down Syndrome Association
European Down Syndrome Association, 1 - 21 March 2016
During the ... 21 days until World Down Syndrome Day, EDSA presents you short stories about inclusion from different European countries. EDSA members have sent us their contributions with an example from their respective country.

How do you see me
Coor Down (Italy), 14 March 2016
Let's change the way we look at people with Down syndrome. AnnaRose is a nineteen year old from NJ. She's a full time college student who works part-time at a physical therapy center and enjoys basketball and swimming through the Special Olympics NJ. AnnaRose, as many people with Down syndrome, only wants to realize her potential and live a meaningful, beautiful life.

CoorDown Onlus created the campaign “How Do You See Me?” together with Down Syndrome International and with the contribution of The Down’s Syndrome Association (UK), Down Syndrome Australia, Fondation Lejeune and Les Amis d’Eléonore (France).

The video and the message it seeks to communicate has been widely praised, but you will see from the comments on its You Tube posting and other social media that some viewers and advocates are concerned about the use of an actor who does not have Down syndrome, seeing it as ableist and inappropriate. Have a look, and decide for yourself.

21 blogs
Down with Dad, 1 - 21 March 2016
Starting on the 1st March I will post a new blog each day right through until World Down’s Syndrome Day 2016 on the 21st. Each blog has been written by a different person and all have the aim of promoting and celebrating our differences ...

Kosciuszko to Coogee 2016: the finish
The 2016 ride is almost done - Lance, Shane, Leigh and Evan will ride onto Coogee Beach tomorrow morning, having finished a gruelling, but often fun ride ... catch up with the final stages via their Facebook page, and you can come along to meet them at Coogee, congratulate them, thank them and celebrate the finish.

They have been supported by wonderful sponsors and hosts along the way - spend a few minutes on the Facebook page to see the photos and stories of the riding days, the rest stops, the hospitality and the events along the way.

Having ridden up the coast road from Wollongong
(via the steep rise to Stanwell Tops), the K2C team
crossed the Hacking River on the Bundeena ferry -
the passengers would be accustomed to having cyclists
in their midst, but not many would have cycled all the
way from Mt Kosciuszko!

21 people with Down syndrome at work - 21 different jobs (18)

Day 18

Working with cars is an attractive proposition for many people, including Nick Jones:
Melissa Cutler, Fox4 News, 11th February 2015
A Highland Park high school student is making an impact at his part-time job. Nick Jones' task is to make sure every car on his dealership's lot is perfect, and his work is making a bigger impression than he may realize. One thing that sets 18-year-old Nick apart from many is how happy he is to go to work ...

The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 
You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at

Don't forget High Tea 4321 tomorrow, Saturday - Chatswood

Join us for the official opening of Show Off Art Exhibition at High Tea to celebrate
World Down Syndrome Day 2016 at Blend Café and Gallery,
Chatswood on Saturday 19 March.
Featuring works by established and emerging artists with Down syndrome,
this annual event celebrates the lives and achievements of our family
and friends with Down syndrome.


Thursday, 17 March 2016

21 people with Down syndrome at work - 21 different jobs (17)

Day 17

Work experience an excellent way for senior high school students to get to know something about what different jobs involve. Mater Dei School, a Catholic special school at Camden (NSW) organises work experience for Year 10 - 12 students, with a weekly commitment for 15 week rotations. More than 30 local business, offering a range of services and products offer places.

Ethan Campbell is currently doing at work experience at Mt Annan Vet, where the staff are very supportive and impressed with his hard work - in the operating theatre, X-ray room, clipping dogs and dental cleaning. He is loving every minute, including a surprise visit from his own dog, Henry.
The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 
You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at

People with Down syndrome ... it's not all about work

While we focus on the different jobs that people with Down syndrome work in, what else have some of them been doing lately?  It's a long and varied list - holding solo art exhibitions, training for international swimming competitions, adventuring, leading workshops at the Museum of Contemporary Art, celebrating significant birthdays ... and that's just s few:

pig dog 
Studio A artist Peter Dudding's  first solo exhibition, curated by Paul Williams,
2 - 24 March 2016 - First Draft Gallery, Wolloomooloo 

Michael Cox, Taylor Anderton, Ashley-Kate Schlenner set sights on Down syndrome World Championships in Italy
Alicia Nally, South-West News (Qld), 6 March 2016
This year’s Down syndrome World Championships is destined to be something of a double celebration for soon-to-be-married couple Michael Cox and Taylor Anderton.

Not only will Mr Cox defend his 50m freestyle crown and his fiance enter the Italian competition with a good shot at placing, it will also be a honeymoon for the pair. The couple will marry in June ahead of the international swim meet in July ...

Trying New Things!
Will, VATTA, 7 January 2016
It’s not often that people choose to be so daring, so daring like skydiving from a plane and getting a thrill of a lifetime. Soaring through the sky, being attached to an experienced skydiving teacher, feeling the dream and the breeze, and holding on for dear life ...

Meagan Pelham's Owl-Making workshop at the Museum of Contemporary Art Australia
Studio A, Facebook photo album, 6 March 2016
Meagan Pelham, Studio A's resident romantic, held an owl-making workshop at the Museum of Contemporary Art Australia as a part of MCA Genext's event for youth. Meagan lead participants in drawing and decorating owls in her own style saying that the only requirement to particiapte in the workshop was to 'bring a sense of love.'

Country's oldest Down's syndrome man celebrates 76th birthday near Yeovil
MF Lennon, Western Gazette (UK), 22 February 2016
A man believed to be the oldest with Down's syndrome in the country has just celebrated his 76th birthday.

Home manager Ann Nicholson said: "To some this may not be a landmark age. However, for Kenny, this is another milestone as it is believed he is the oldest man with Down's syndrome in the country ...