Address details


Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Wednesday, 16 March 2016

21 people with Down syndrome at work - 21 different jobs (16)

Day 16

Jasmine Prince is taking the path of creating/finding a job based on a particular person's interests and talents to a new level by providing jobs for others with Down syndrome ...

Woman with Down syndrome launches her own business
Evelien Sleutjes Happiness Wave, 8 October 2015
Jasmine Prince, a beautiful young woman with Down Syndrome just launched her first business, a sewing company. She inspires others to follow their dream and work by her side. With a little bit of help of her mom Laura Prince, who owes a a company called “Sew Inspired Stitch Lounge”, an after-school sewing program. Jasmine showed natural talent when she started sewing at a young age, and now she’s create job opportunities for people with Down Syndrome herself ...

__________________________________________
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 downsyndromenswblogs@gmail.com

Free online courses via Future Learn (UNSW)

Disability and a Good Life: Thinking through Disability




2 free online courses, Future Learn - University of NSW
In (these courses) we’ll reflect on how disability is part of who we are as human beings. These courses will give you and your fellow learners the opportunity to think through and work with some of the big issues facing societies, governments and disabled people.

Tuesday, 15 March 2016

21 people with Down syndrome at work - 21 different jobs (15)

Day 15

Potter Max McAuley's story illustrates another path to creating a job using your particular talents, and looking broadly for financial support.

Pottery to the Max - Shouting out loud about Max’s talent
Alex McAuley, The Life That Max Built, 30 September 2016
... Max and I applied for a grant from My Choice Matters, a NSW state government initiative to assist people with disabilities to achieve a specific goal. We applied for funding for Max to start his own business ‘Pottery to the Max’ with a view to him selling his work in order to fund his continuing ceramics classes ...



__________________________________________
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 downsyndromenswblogs@gmail.com

Book now for Show Off and high tea, this Saturday



Join us for the official opening of Show Off Art Exhibition at High Tea to celebrate
World Down Syndrome Day 2016 at Blend CafĂ© 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.

REGISTER NOW


Monday, 14 March 2016

News and commentary on the NDIS (45)

So what happened with our ADHC Position Statement?
NSW Council on Intellectual Disability (blog), 4 March 2016
NSW CID, along with many of our Members, remain concerned about the transfer of ADHC disability services to the non government sector.

Whilst we appreciated the Governments quick response to CIDs position statement on the transfer and numerous meetings with decision makers, details on the plan are yet to be released.

CID looks forward to ongoing communication with the government on these, including a report on the consultations held with people with disability and family Members. We met next with ADHC on March 16th.

To see more on CIDs actions please read our latest blog post.
(NSW CID on Facebook, 4 March 2016)
Western Australia's Individualised Services, 2015
‘Preparing to Plan’ resources have been designed and developed to support people and families to think about some things that may be helpful when planning. They are a set of 10 cards, with an accompanying booklet. The booklet has some information about using the cards, and also can be used to write notes down for each card set section.

The Pre-Planning Resources are NOT meant to be a replacement for Person Centred Planning. The resources can be used to complement person centred planning approaches
Family support - what the NDIS will fund
Families can play an important part in the lives of participants – both as a critical relationship and as a source of care and support. Some participants and families may need assistance to sustain these relationships. Participants may need additional supports if their family and caring arrangements change.

Lost in transition
Craig Wallace, On the Record, 28 February 2016
(Speech for People with Disability Australia to the Lost in Transition Summit, convened by the ACT Council o
f Social Services, Friday 26 February 2016 at the Canberra Museum and Gallery)
... we must never forget that the NDIS is the Medicare of our day. I’m old enough to remember the relief we felt on the day that yellow and green Medicare envelope arrived through the door in 1984. I remember members of my family crying with relief that they would not have to worry about getting sick. So it is with the purple NDIS access form that arrived in my letterbox earlier this year.  So while I carry an undimmed torch for the NDIS there are things that I don’t want lost in transition ...


Sydney: ILC consultation session for people with disability, families and carers, 6 April
The National Disability Insurance Agency has opened registrations for Information, Linkages and Capacity Building (ILC) face-to-face consultation sessions in New South Wales

At the end of last year the NDIA released a consultation draft of the ILC Commissioning Framework. The Framework outlines how the Agency will fund and manage ILC activities in the future.

Before the NDIA finishes the Framework, the NDIA would like to talk more with people with disability, their families and carers as well as people who work in the sector about some key parts of the Framework.

There are two ways people can provide feedback on the Framework:
  • You can attend a face-to-face consultation session in Sydney
  • You can make a written submission
The NDIA will be hosting consultation sessions for people with disability, families and carers. Registration is essential via the online booking on the NDIS website. Please register for the appropriate consultations session on the ILC Commissioning Framework:

Sydney - ANZ Stadium: 10am – 1pm Wednesday the 6th of April

Sydney - ANZ Stadium: 10am – 1pm Thursday the 7th of April

Carers and the NDIS
Carers NSW - a free half-day workshop for family members and friends (carers) of people with disability. It aims 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



NDIS 10th quarterly report: 2015-16 Q2


Helen Dickinson,  Right Now, 22 February 2016
... For many, the NDIS is an incredibly welcome scheme. For too long, Australian disability services have been underfunded, inflexible and built around the needs of the system rather than those of the individual ... Yet, there is growing consensus that while the NDIS is a welcome addition it will not go sufficiently far in securing human rights for people with disabilities ...

21 people with Down syndrome at work - 21 different jobs (14)

Day 14

Laura Green - UK entrepeneur in fashion

Kate Monaghan, BBC News, 10th July 2015
"I didn't want to work in Asda. I wanted to run my own business," says 28-year-old Laura Green. The young entrepreneur from Runcorn, Cheshire, says that because she has Down's Syndrome people didn't think it was even worth talking to her about her future ...
"There was no career planning at school for me. I was just killing time until I was moved onto the next step in the system. After three years I said 'no more' and I left." With that, Green spent time with family and friends trying to work out what it was she wanted to do with her life. 
"I decided that I wanted to work in fashion. Not for someone else but I wanted to set up my own business selling fashion accessories. So that's what I did."
__________________________________________
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 downsyndromenswblogs@gmail.com

Sunday, 13 March 2016

21 people with Down syndrome at work - 21 different jobs (13)

Day 13

Any writer will tell you how difficult it can be to make a living by writing, but getting a book published is a great start, and Marcus Sikora is already finding ways to expand the possibilities:

This 25-Year-Old With Down Syndrome Just Published His First Book
Rachel Kassenbrock, The Mighty, 27th July 2015
Marcus Sikora has a flare for the creative. The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments ...

See also Why does Marcus have first billing on the book Black Day - the Monster Rock Band?


__________________________________________
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 downsyndromenswblogs@gmail.com

Saturday, 12 March 2016

21 people with Down syndrome at work - 21 different jobs (12)

Day 12

We first discovered Kayah Geunther's bakery business, Plus One Vegan Delights in September via their Facebook page. The comments over the last few months are full of praise for Kayah's baked goods.  They are returning to Kingscliff (northern NSW) markets this month, and the customers are waiting.
2015

In the current issue of Voice (March 2016), Kayah's dad, Rob Geunther writes about Kayah's developing business and baking skills, and other aspects of his life. He explains that naming the business 'Plus One Vegan Delights' refers to his 'little extra chromosome', and the way the business was going to be run:
It needed to be a platform for Kayah to find his life niche and this would probably mean thinking outside the box. A good deal of Kayah's journey has been about giving more and giving differently. From a young age he has always known how to stop and smell the flowers ... the whole article os available is the print edition of Voice.
Voice is the journal of Down Syndrome Australia - find out about subscribing here.

__________________________________________
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 downsyndromenswblogs@gmail.com

Friday, 11 March 2016

Weekend reading and viewing: 12 - 13 March 2016


Sri Lankan girl with Down syndrome reunited with family in WA after visa granted Sarah Taillier, ABC News, 10 March 2016
A nine-year-old Sri Lankan girl denied an Australian visa because she has Down syndrome has been reunited with her family in Western Australia ...

Pro-Choice Parents of Kids with Down’s Syndrome
Ginger Stickney, The Body is Not an Apology, 3 March 2016
... Too often in both the “pro-choice” and “pro-life” camps, the assumption is that choice is unequivocally equals abortion. However I suggest that we need to remember that choice also means choosing to not abort. After all what it comes down to is that I as a woman have a right to choose what to do with my body and that means sometimes I choose to carry a fetus to birth regardless of said fetus’s diagnosis or lack thereof.

In this decision I felt utterly abandoned by both sides. In the pro-choice camps, I didn’t represent the woman rejecting a life of burden, and on the pro-life side, no one cared what became of my child or me since I choose to carry to birth ...


Revisiting the school years: for the better Alex McAuley, The Life That Max Built, 8 March 2016
... as I alluded to in the last post about Max’s school years, things turned out well in the end. In fact, the biggest obstacle I had to overcome was my own preconception of what school should look like for Max. That’s to say, I really believed full integration was the only model for him. Of course, in an ideal world where all things are equal, I honestly believe this is the best model for everyone, as we should all grow up side by side with people of all abilities, disabilities, religion, race, sex etc etc. But while the social systems with which we live are so broken that education and disability services (to name a few) receive significantly less funding than military defence, for example, often this perfect model is difficult to achieve ...


Maureen Wallace, Redbook Magazine, 8 March 2016
We need to come together to support the kids, but that doesn't make us soul mates ...

... After we realized we weren't going to immediately move to a commune with our new chromosomally-enhanced community members, we had to realize that this is okay. No one has to like everyone, even if you're dealing with the same issues around parenting a child with a disability.

Not Always Happy - A Comedy
Kari Wagner Peck, A Typical Son, 9 March 2016
When I asked Thorin if he was okay with me doing it he said: “Oh, no! No writing! Too much!”

“I’m writing it.”  “Good! You can do it.” ...


What “Guest Room” Really Says About Disability
Meriah Nichols, A Little Moxie, 9 March 2016
“Guest Room” is a 13-minute award-winning film that follows a couple with Down syndrome from the bedroom to the pregnancy test and a short way beyond ... (includes a link to the 13 m film)

The Dateables Ball: love found out of singles night for people with disabilities
Lesley Robinson, 7.30 (ABC TV), 7 March 2016
The Dateables Ball uses old-fashioned matchmaking to help people with disabilities to find romance. We visit the latest dance and talk to a couple that found love and are now planning their wedding. (Video 6m 32s)
  • The current issue of Voice (March 2016) includes Relationships first, disability second, by Liz Dore from Relationships and Private Stuff - organiser of Datable events (Sydney)
100 Faces - living with a diagnosis of Down syndrome
This Australian-based social media project #100FACES is an online collaboration of shared stories from families all around the world.

The aim of the project is to give you a glimpse, a snippet, a snapshot, into the lives of 100 individuals living with a diagnosis of Down syndrome.

Over the course of 2016, you will meet babies, toddlers, children, pre-teens, teenagers and adults, with Down syndrome, from all over the globe ...

21 people with Down syndrome at work - 21 different jobs (11)


Day 11

Some fields of employment might seem beyond the reach of people with intellectual disabilities such as Down syndrome and/or communication disorders, but creative thinking, looking closely at the tasks involved, and the interests and abilities of individual people can lead to dreams realised.

Everyone Employed, 1st May 2015
Ever since Sam was young he has been passionate about helping others in his community, information that was discerned during the early phases of his employment discovery journey. More recently, it has become clear that Sam has developed a strong interest in law enforcement and detective 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 downsyndromenswblogs@gmail.com

Thursday, 10 March 2016

21 people with Down syndrome at work - 21 different jobs (10)

Day 10

You may well have seen Sarah Gordy on TV - the British actor is carving out a career in theatre and Call the Midwife (Series 3, Ep 6).
television, including roles in some very popular shows, including an episode of

This interview with Sarah is one of the most popular posts ever on this blog.

On her own website, Sarah Gordy describes herself as a professional actor, dancer and model.


__________________________________________
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 downsyndromenswblogs@gmail.com

K2C 2016 begins ...


Last night Lance, Leigh, Shane and Evan camped out on the cold, windy summit of Mount Kosciuszko preparing themselves for the 9 day adventure ahead.




Jindabyne, Cooma, Michelago, Captains Flat, Braidwood, Nerriga, Nowra, Wollongong, Cronulla and Coogee ... plus all the towns in-between ... This is the route for K2C 2016.



We are asking everyone to please support their heroic efforts this year, with all proceeds going Down Syndrome NSW. There are many ways to get involved with K2C - You can sponsor one of the riders by making a donation, you can attend one of the events being organised or even just help spread the word through your networks.

Sponsor our Riders:
Help our riders reach their fundraising goal! First select the rider/s you wish to sponsor from the fundraisers page. You can sponsor as many of the riders as you like.

Once you are viewing the riders’ profile page simply click the ‘Give Now’ button and fill in the form to make your donation. Don’t forget to add your name and message so that they show up on the rider’s profile feed!

Attend an Event:
Two exciting events have been organised by Down Syndrome NSW to show some local support for the K2C team.

Nowra community dinner
16 March, 6pm
Bomaderry Bowling Club Bistro
A community event where you will have the chance to meet the K2C team: Lance Mitchell, Leigh Leslie, Evan Brunton and Shane Maxfield, as well as DS NSW staff Mary Mamootil and Ben Chinnock. Dinner and drinks available for order from the bistro.
Coogee picnic to welcome riders
19 March, 11am
Coogee Beach
A community picnic to welcome the riders back and celebrate their achievement! Bring your friends, bring a picnic, play some beach cricket, cheer on the team as they cross the finish line.
We would love to see you at one of the events!

Interested in learning more about K2C? Read the story behind the event.

Wednesday, 9 March 2016

21 people with Down syndrome at work - 21 different jobs (9 )

Day 9

Like many others, it is not unusual for people with Down syndrome to have more than one job - a number of part-time jobs simultaneously, and/or a number of career changes over their working life.

One of the busiest people we know is Chris Bunton, from St Clair. He fits part-time work into a full schedule, as described in this article that links to the well-named video Keeping Up with Chris. He has even tutored young children in circus skills!

__________________________________________
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 downsyndromenswblogs@gmail.com

My Health Record - opt out trial

From Jim Simpson, Senior Advocate at NSW Council on Intellectual Disability, 1 March 2016:

Since 2012, people around Australia have been able to create an electronic health record on a Commonwealth database. The record is then available to treating health professionals. This system is obviously very valuable for people with intellectual disability who often have trouble recalling and giving a medical history. This system now has a new name - My Health Record ... 
... The government is conducting an “opt out” trial in two areas-Nepean Blue Mountains Primary Health Network and Northern Queensland Primary Health Network. During March, people living in these areas will get a letter from the Australian Department of Health saying that a My Health Record will be set up for you unless you say they don't want one. Then, from July, doctors and other healthcare providers will be able to look at all of your record unless you have set "access controls" on the record. 
Many people with intellectual disability who receive the letter from the government will find it hard to understand. Families and others can then support the person to understand and decide about whether they want to opt out of the system or set controls on who can access their records and which records can be accessed ... read the full text of the blog post, or listen to the audio file, on the NSW CID blog, here

Tuesday, 8 March 2016

21 people with Down syndrome at work - 21 different jobs (8)

Day 8

On this International Women's Day, it seems appropriate to acknowledge the work of the late Laura Lee - she was well known for her advocacy and lobbying work on behalf of others with Down syndrome. She also worked at the World Bank. A leader and a role model for women and for men with Down syndrome.

Down syndrome activist remembered for the life she lived
Debra Alfarone, WUSA, 3 March 2016
Laura Lee wasn't just an advocate for people with Down syndrome, she lived her life with it. And she lived her life in a way that made others, including those without disabilities, look like they were standing still. Simply put, Laura Lee did things first. The 33-year-old Oakton woman with Down syndrome died in her sleep last week ...

__________________________________________
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 downsyndromenswblogs@gmail.com

NDIS governance and cost blow-out commentary

Down Syndrome Australia is part of Disability Australia, which released this statement yesterday (7 March 2016) in response to media articles about changes to the NDIS proposed by the Federal government:

People with disability organisations reject NDIS governance and cost blow-out commentary as neither truthful nor helpful.

Responding to suggestions of cost blow outs and reported governance problems at the NDIS, Disability Australia spokesperson Matthew Wright said ‘People with disability reject NDIS cost blow out claims as untruthful and unhelpful for the large number of people with disability across the country languishing on waiting lists for service’.

‘The facts of the matter are that the NDIS is on time and on budget. The NDIA are required to report factually and accurately on a regular basis. I call on Tony Shepherd who has said the scheme will have a $3 billion blow out to cease scaremongering for the sake of hundreds of thousands of people with disability and families across the country’.

‘It is also critical that we continue to have an independent Board leading the scheme who will protect the interest of people with disability and their families. Disability Australia supports the current system of state nominated representatives in consultation with the Commonwealth. For the sake of the scheme it should sit in a neutral bi-partisan space with cooperation from both the state and federal governments’.

We also think it’s critical that the Board continues, as it currently does, to include people with disability who also have the extensive governance experience required.

‘People with disability were dismayed with the finding of the Commission of Audit led by Tony Shepherd that the independent Board should be replaced by a Minister, which was the structure of the broken, underfunded institution-based system in Australia that we came from’ said Mr Wright

Disability Australia, which represents 200,000 people with disability across the country, urges all parties to continue to work together with the NDIS to roll-out the best possible scheme to our constituents.

Monday, 7 March 2016

'Decisions, decisions...' : free workshops for 14 - 18 yr olds, families and carers





Free workshops on supported decision making.
10:00am - 2:00pm, morning tea and lunch provided. 

21 people with Down syndrome at work - 21 different jobs (7)

Day 7

This employment story from the US is about a small business that employs several people with Down syndrome, but has been set up byBeau and Bitty Wright's family with the future of their young son and daughter in mind, even though they are both far too young to be thinking getting jobs just yet.

It's not the only such venture, and we expect to hear about many more in the future.

__________________________________________
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 downsyndromenswblogs@gmail.com

Sunday, 6 March 2016

21 people with Down syndrome at work - 21 different jobs (6)

Day 6

Sydney landscape painter Josie Webster sells her remarkable work locally, and through Heart and Sold, based in the UK. Her work was included in their 2015 debut New York City exhibition. Josie is one of the featured artists  in Show Off, an exhibition to mark World Down Syndrome Day this month in Chatswood (Sydney).



__________________________________________
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 downsyndromenswblogs@gmail.com

Saturday, 5 March 2016

21 people with Down syndrome at work - 21 different jobs (5)

Billy kindly allowed us to use this
 photo from his 55th birthday post to
illustrate a flyer some years ago.
Day 5

Billy Schulz's, full  and happy life (1956 - 2012) is well documented by his mother, Dr Jane Shulz, other family members, and by Billy himself.  Grown Man Now, their website, remains as a tribute to Billy.

In her book of the same name (a copy is in our library collection), Jane, a professor of special education, devotes considerable space to discussing the importance of work for Billy, the jobs he had, those he liked and did not like, and how they came about. He worked for several years in a university library and then at two locations of a well known grocery chain.

In this blog post, Billy himself writes about his job at the store.


__________________________________________
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 downsyndromenswblogs@gmail.com