Address details

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

Friday, 30 September 2011

New ADHC booklet to support siblings

Ageing, Disability and Home Care (ADHC) has published a new resource aimed at supporting siblings of children with a disability.

Side by side: Growing up with a brother or a sister with a disability will specifically assist families in supporting and understanding the needs of brothers and sisters of a child with a disability.

Siblings of children and young people with a disability have needs over and above those of their peers, related to their different family circumstances.

When a family has a child with a disability, it's natural that a great deal of time and resources are focused on this child. This can make it difficult for parents as they try to juggle the needs of all family members. Sometimes siblings of children and young people with a disability can be overlooked, particularly if there are many demands on their parents' time and their needs don't seem so pressing.
Extended family and friends, school and the community can all provide support to a sibling and the whole family if they know how.

Side by side provides insight into sibling relationships and information, resources and contacts aimed at supporting the brothers and sisters of children with a disability.

Side by side is available from ADHC regional offices and online from the ADHC website.

Source: ADHC Connnections September 2011

Thursday, 29 September 2011

Interview with actor, Chris Burke

It's Buddy Walk season in the US and Canada too.  As a Goodwill Ambassador for the National Down Syndrome Society in New York, actor Chris Burke gets to as many Buddy Walk events as he can, and is always in demand for photos and to talk with parents.  He was interviewed recently about living with Down syndrome by parenting magazine Modern Mom.

Chris Burke's TV show from the 90s, Life Goes On is available for members to borrow from our library, on DVD.   A biography, A Special Kind of Hero: the Chris Burke Story is also in the collection.
Email  to arrange a loan.

Other links to information about Chris Burke:
NDSS 'My Great Story' entry, Great Expectations

Alzheimers NSW research - invitation to participate

Older people with Down syndrome are one of the groups identified as being at higher risk of developing Younger Onset Dementia. AlzNSW has asked us let our members, families and carers know about this important research study - people with Down syndrome and their carers are welcome to participate.

Research Project on Service and Support Requirements for People with Younger Onset Dementia and their Families
Are you or your family member living with a diagnosis of younger onset dementia?Would you like to participate in a valuable research project?

Alzheimer’s Australia NSW (AlzNSW) is conducting research with the Social Policy Research Centre at the University of NSW and UnitingCare Ageing for the NSW Government.
The research is about the experiences and needs of people with younger onset dementia and their families and understanding how these are different or unique compared to those of people with dementia at later ages.

'Younger onset dementia' is dementia which occurs before the age of 65 years.
The research aims to understand:
• Your experiences of accessing services and supports
• What your service and support needs are
• How services and supports can best meet those needs

How can you help?
We are looking for people with younger onset dementia and their family members/carers to interview.

We will ask you about:
• Diagnosis and living with younger onset dementia
• Your experiences with dementia services
• The types of support and assistance you need and would like to receive

Interviews will take no more than one hour and at a location convenient for you.
Participation in this research project is voluntary.  Your decision to participate or not will not affect your relationship with Alzheimer’s Australia NSW or any other services. 

All participants will be given a gift voucher to thank them for their time.
Your views are valuable and will be used to inform recommendations to government and service providers about improving younger onset dementia services and supports.
If you would like to participate or want to know more, please contact the Alzheimer’s Australia NSW researchers:

Jo-Ann Brown - Email or 02 8875 4636
Kylie Sait
- Email or 02 8875 4641

Download this information as a .pdf file to print.


Alzheimer's Australia offers support, information, education and counselling. Contact the National Dementia Helpline on 1800 100 500.

The Growing older with Down syndrome pages on the Down Syndrome NSW website include information about Down sydnrome and dementia, and links to relevant services and supports.

Wednesday, 28 September 2011

Key Sign for Babies and Toddlers: parent workshop

This Down Syndrome NSW workshop for parents will assist day to day communication. Key signing is used with speech.

Presented by Aileen Ryan, Hands Can Talk

10.30am - 1.30pm, Friday 4th November, 2011
Northcott Function Centre
1 Fennell Street, North Parramatta

Parking available at the Parramatta Leagues Club, O’Connell St
Northcott Lane joins the car park and the Northcott Centre.

Cost:  $20.00 per person, including GST and a light lunch
Babies under 1 yr are welcome, but we are not able to provide childcare for other children.
Older children may attend as participants, $10/ child

Booking is essential  ~  please call Lynn or Judy at Down Syndrome NSW, on 9841 4401, or email

This workshop is our customary follow-up to Babies Day, which was held on 17th September.  Photos are available in our Facebook album, Babies' Day.

Wordless Wednesday

Tuesday, 27 September 2011

Foundations Forum: 'Towards a Better Life'

a 2-day workshop presented by John Armstrong

27th and 28th October, 2011
An introduction to Social Role Valorisation (SRV) and the possibilities it can create. Participants will explore:
  • How individuals, services and society marginalise people
  • Valued social roles as a potent catalyst for change and the foundation of a much better life for those we care about.
Designed for participants from a range of sectors (disability, education, aged care, mental health, youth, etc.) - support workers, teachers, co-ordinators, advocates, family members, people with disability.

Cost (including workshop package, morning tea, afternoon tea and lunch each day): $345 per person; $100 Concession

Registration is essential: for more information or for flier email or contact the workshop’s co-ordinator on 0405 071 577

Monday, 26 September 2011

Invitation to participate in reseach - adults in Hunter region

The Neuropsychiatry Service at Hunter New England Health invites people with Down syndrome aged 30 - 60 to participate in a research project.
They are examining this question:
An ‘Olfactory Stress Test’ in Down syndrome, others with an Intellectual Disability and non-affected individuals: can it help establish a cause for memory problems?
This is a research study. It is looking at the connection between smell and remembering.                                        
  • We will test your sense of smell
  • You will need to have a blood test
  • We will take your blood pressure, weight and height
  • We will ask your carer/ family some questions about you
  • Your information will be kept private and locked up
  • You need to be able to go to Newcastle for some of the tests
The study will be a good opportunity for adults with Down syndrome to have a baseline assessment (without charge) for future reference. Assessments will be kept on file, and will be made available to participants’ GPs as requested.

If you are interested to participate in the research project, please contact the Neuropsychiatry Service and speak to:

Tammie Taylor (02) 4033 5704 or Sally Finnie (02) 4033 5702

Or you can request further print information (supplied by the researchers) through the Down Syndrome NSW office, by contacting Miriam Parker on 9481 4407 or

Saturday, 24 September 2011

4 Corners, Monday 26th September (ABC 1)

"St Ann's Secret", next week's episode of Four Corners will be chilling viewing, but promises to reveal deficiencies in the justice system that has not protected children with intellectual disabilities as we might have expected.

"St Ann's Secret", presented by Kerry O'Brien, goes to air on Monday 26th September at 8.30pm on ABC1. It is replayed on Tuesday 27th September at 11.35pm. It can also be seen on ABC News 24 Saturdays at 8.00pm, on ABC iview and at

Wedding story - Santa Fe couple

Here is the link to a news article about the wedding of  Desiree Romero and Ryan Hanson, two people with Down syndrome in Santa Fe, New Mexico at which the priest drew an analogy between the values of Special Olympics and preparation for marriage (referred to in this post).

We wish them all the very best.

And this happy post is a little milestone for Keeping Up - our 1500th post. We started off slowly in 2007, but we hit our stride in 2008 and have blogged almost every day since, sometimes more than once a day to reach 1500 posts. Thanks for reading along - feel free to comment any time.  You might like to revisit our very first entry, I wish I'd said that ... it's still relevant and true.

Friday, 23 September 2011

St George Migrant Resource Centre: Parent Carer Programs

CALD Community Care Program events (St George and Sutherland)

School Holiday Family Fun Day
Tuesday 27th September

CCCP would like to invite families from culturally and linguistically diverse background living in the St George & Sutherland area and caring for a child with a disability to come together for a day of fun and excitement.

Buses will be departing from the St George Migrant Resource Centre, 552 Princes Highway Rockdale at 10 am and returning at 3pm.

Please arrive half an hour prior to departure time.
COST: $20 per family which includes transport, admission and morning tea
Families can purchase lunch or bring a picnic lunch.
All children must be accompanied by a parent.
Places are limited so please call 9597 5455 today to reserve your spot!

* * * * * * * * * *

The CALD Community Care Program would like to invite Arabic parents of children with disabilities living in the St George & Sutherland Area to a FREE:

Arabic Parent Carers Lunch & Information Session

Meet other Carers and learn how respite services can support you. Guest speaker from the Benevolent Society Commonwealth Respite & Carelink Centre.

Free morning tea and lunch will be provided.
WHEN: Wednesday October 12thW
HERE: St George MRC 552 Princes Highway Rockdale
TIME: 10.30am to 1.00pm
To RSVP call Laila Beydoun on 9597 5455 (Mon - Wed)

During the session we will also provide carers with information on the upcoming ‘Parents as Case Coordinators’ Program

* * * * * * * * * *

Parents as Case Coordinators
This one-off introductory session will give you an opportunity to meet other parent carers; learn skills to help you access services for your child including goal setting, communication, assertiveness; and how to care for you as a parent.
The session will be facilitated in Arabic.

When: Wednesday October 19thTime: 10am to 1.00pm
Venue: St George Migrant Resource Centre 552 Princes Highway Rockdale
Contact details: Laila Beydoun 9597 5455 Mon - Wed

Thursday, 22 September 2011

Library Thursday: new publications on people with Down syndrome, siblings and families

The Association for Children with a Disability has released a new booklet Growing Together: A parent guide to supporting siblings of children with a disability, written for parents and highlights the experiences of siblings growing up with a brother or sister with a disability as well as strategies for parents to support siblings. The booklet is available in print and online (Click on the title for links to order or download). The booklet will be relevant to families of children with all kinds of disabilities and chronic illness, and to both child and adult siblings.

Specifically related to people with Down syndrome and their families, the results of a series of surveys undertaken by a team from Children's Hospital Boston, under the direction of Dr Brian Skotko, have been widely reported.  They are freely available online, published by the American Journal of Medical Genetics, ahead of the print edition (October 2011 issue).

More than 2000 parents, siblings and people with Down syndrome were asked about their experiences of living with Down syndrome, with the aim of providing information to expectant parents in prenatal counselling. The information gathering was undertaken in response to Dr Skotko's earlier work with mothers of children with Down syndrome recalling the information they received along with the diagnosis.

Children's Hospital Boston has issued a news release summarising the results, and linking to the online publication of each of the three papers reporting them.

Here is a brief extract from the news release:

Asked what they would tell other prospective parents of a child with Down syndrome, the top responses (from parents) fell into these categories:
  • You will experience joy/rewards
  • There will be struggles/challenges
  • You will experience love
  • Important to identify good support group/resources
  • Children with Down syndrome are more alike than different from typically developing children.
Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.

Respondents with Down syndrome most often gave these kinds of messages for parents:
  • Love your baby/your baby loves you
  • Life is good/happy to be alive/positive
  • Don’t worry/it’s okay.
Their main messages for doctors were:
  • Life is good/I’m happy to be alive/positive
  • Please take care of our medical needs
  • Please give information to parents about school options for people with Down syndrome
  • Value us/we’re okay.

Wednesday, 21 September 2011

Buddy Walk - Australia 2011 Wagga Wagga poster and online registration for all events

Register online for Buddy Walk - Australia 2011 events in Wagga Wagga, Sydney and Newcastle here.

You can set up your Buddy Walk hero page to promote fundraising from the same link.

Tuesday, 20 September 2011

Eddie Cody in the media

In this interview with Andrew Balding from ABC radio, Eddie Cody explains how he prepared for his first-ever marathon in Sydney on Sunday, at the mining camp where he works in Western Australia.  He was motivated by the knowledge that his little niece Ava, who has Down syndrome can have a very good life with appropriate support - and he thought he could probably raise a very useful 'three or four' thousand dollars for Down Syndrome NSW. (By race day he had raised $60,000!)

The Pilbara Echo also interviewed Eddie, and published a great photo of him at work.

We should not be surprised to learn that as word spread amongst his workmates about his training, several sought him out to tell him about a person with Down syndrome in their own families ... and to make a contribution.  Our thanks again to all of you.

Monday, 19 September 2011

Coffs Harbour: Aboriginal Drop In Service

Coffs Harbour Support Services - Aboriginal Drop In Service 
Provides flexible, innovative support to Aboriginal people with disabilities across the NSW Mid North Coast (Yamba down to Kempsey) -  supporting Aboriginal people living with a disability to achieve quality of life through flexible personalised support.

Support is available to assist in:
Travel to access the community and cultural celebrations
Living skills
Social and Leisure Access to Education and Training
Access to Medical and Health Services

For more information on The Aboriginal Drop In Service you can contact Cindy Lesley on (02) 6650 5300 or email

Visit for further information about this and other services offered by Coffs Harbour Support Services.

Source:  IDEAS NSW e-News Issue 26, 9th September 2011

Sunday, 18 September 2011

60,000 thanks, Eddie Cody!

Eddie Cody has raised $60,000 for Down Syndrome NSW through sponsorship of his run in the Sydney Marathon today!  See our Facebook page for photos of his meeting with representatives of DS NSW at the Opera House forecourt on Friday to thank him for a wonderful and much appreciated effort, and wish him well this morning.

Kevin Corcoran (centre) and Steve Clarke from Down Syndrome NSW thanked Eddie Cody (left) on behalf of members and the Board of Down Syndrome NSW.

Saturday, 17 September 2011

Buddy Walk - Australia 2011, Sydney - poster

You can now download a poster to help advertise Buddy Walk - Australia 2011 Sydney here.
You will be sent a full event information kit when you register.
Click here to set up your Buddy Walk Hero page.

Friday, 16 September 2011

Down Syndrome Education International - research update webinars:next week

Down Syndrome Education International - research update webinars

Classroom language and reading trial
This randomised controlled trial is evaluating the benefits of a carefully structured teaching programme designed to improve reading and language development for children with Down syndrome. Briefing times:

• 20 September 2011, 6.00 pm UK/BST (10.00 am Los Angeles, 1.00 pm New York, 7.00 pm Paris)

• 21 September 2011, 9.30 am UK/BST (10.30 am Paris, 2.00pm New Delhi, 4.30 pm Singapore, 6.30 pm Sydney, 8.30 pm Auckland)

Register to attend…

Adaptive working memory training
Supported by a grant from the UK Baily Thomas Charitable Fund, we are conducting a randomised controlled trial of an adaptive working memory training programme with children with Down syndrome. Briefing times:

• 21 September 2011, 6.00 pm UK/BST (10.00 am Los Angeles, 1.00 pm New York, 7.00 pm Paris)

• 22 September 2011, 9.30 am UK/BST (10.30 am Paris, 2.00pm New Delhi, 4.30 pm Singapore, 6.30 pm Sydney, 8.30 pm Auckland)

Register to attend…

The Australian Disability and Indigenous Peoples' Education Fund (ADIPEF)

The Australian Disability and Indigenous Peoples' Education Fund (ADIPEF) will assist indigenous and non-indigenous people with disability to participate in both formal and informal education programs through small grants.

Frank Hall-Bentick has a lifelong disability and along with other members of his family has experienced many years of hospitalisation, special schools and disability services. For the last thirty years Frank has been involved in disability advocacy and the empowerment of people with disability locally, nationally and internationally. Realising that the work to empower people with disability is ongoing he has long considered the best way to support this is through further education and learning.

In April 2008 he with his sisters and these friends set up the Australian Disability and Indigenous Peoples' Education Fund (ADIPEF) under the auspice of the Melbourne Community Foundation. This Fund will assist people with disability gain empowerment through access to formal and informal education programs. For many, a small financial grant will enable them to undertake a course.

This education fund is about helping people complete or undertake courses and programs through providing small grants.  ADIPEF’s fund is looking to distribute small six monthly grants of up to $2,500 to assist people with disabilities to continue their learning.

People with disabilities of any age may apply for any assistance to help with both formal and informal education. While people may need assistance to complete the application, ADIPEF would like a letter in the persons own words telling then why they want to learn.

Deadline for applications
30 September, 2011

How to apply
Download the form below, complete it and send it back to ADIPEF:

For more information
Contact Frank Hall-Bentick
Tel: 03 9429 4210

Source: IDEAS E-Bulletin issue 26, 9th September 2011

Wednesday, 14 September 2011


Ashleigh and Daniel, both from the Hunter region, recently announced their engagement, on Ashleigh's birthday. Congratulations, and our very best wishes for your future!

On the subject of relationships, have you ever considered that Special Olympics is a training ground for marriage? We know that Special Olympics opens up opportunities for many wonderful experiences in addition to sport .... Randy Mascorella, Tim Shriver and a priest in Santa Fe agree that the principles of Preparation, Showing Up and Participation can carry through to other aspects of life, even marraiage. Read how, here ..

Tuesday, 13 September 2011

Dance to the Nines

6pm - 9pm Friday 23 September 2011
Civic Pavilion on The Concourse, 409 Victoria Avenue, Chatswood

A free event for people over 18 with a disability.
Dress up to the nines and shake to live music featuring ‘MIMESIS’. Also performing, will be hip hop outfit ‘bdm’ (brothers from different mothers).
Light refreshments will also be available.

Booking is essential  phone 02 9777 7975

Part of the Willoughby Spring Festival

Coffs Harbour: Art Group

Coffs Harbour Neighbourhood Centre:  Art Group
Open to people with disability living in the Coffs Harbour Area.  Activities include:

Street Art
  • Starts at 12:30pm 6 September and continues weekly on Tuesdays
  • $5 per session
  • Numbers are limited so please register
Call or call into:

Coffs Harbour Neighbourhood Centre
Community Village
22 Earl Street, Coffs Harbour
(02) 6648 3694

Source: IDEAS E-Bulletin issue 26, 9th September 2011

Monday, 12 September 2011

Online registration for Buddy Walk-Australia 2011

Online registration for Buddy Walk-Australia 2011 events is now available here.
You can also set up a Buddy Walk hero page from this site.

Or you can download a registration form and T-short order form here, to fax or mail in (note T shirt orders close on 23rd September)

Wild Dreams: Exhibition, Lismore

9 - 25 September 2011
Serpentine Gallery, Bridge Street, Lismore NSW

Wild Dreams is an annual exhibition of recent works from the RED Inc Studio 87a.
Works on canvas drawings ceramics mixed media textiles photography and multi media.

Cost: Free
Contact: Jenny, RED Inc tel: (02) 6622 3400

Supported Accommodation Innovation Fund (SAIF)

Eligible organisations, can now apply for a capital grant to build innovative supported accommodation for people with disability through the Supported Accommodation Innovation Fund (SAIF). Applications for SAIF opened on 5 September 2011 and will remain open until 20 January 2012.

This $60 million Australian Government initiative, spanning three years, will help build innovative, community-based supported accommodation places for people with disability.

This funding presents an opportunity to make a real difference to the lives of up to 150 people with disability, their families and carers. Projects could include renovations to existing homes, pooled resources to build contemporary accommodation services close to community and health services or the modification of existing accommodation within the community.

For information about SAIF, including how to apply, please see the SAIF website. Application documents are available on the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) website.

Completed applications are to be submitted to by 2pm, 20 January 2012.

Friday, 9 September 2011

Down Syndrome NSW e-Update: September 2011 issue

The September 2011 issue of the Down Syndrome NSW e-Update is now available online here.

If you are a regular reader of this blog, the content will be familiar, as it is extracted from here - it is a selected listing of information and events occuring in September and over the next few weeks, with the emphasis on events. You might find it a useful reminder and diary aid, and/or a good link to forward to someone else who might be interested.

Down Syndrome NSW members will have received their quarterly publications mail-out this week, including the September 2011 issue of the journal Voice, with the featured articles focussed on 'everyday lives' .  A selection of feature articles will be posted online early next week.

Living life my way consultations: new dates

NSW Ageing, Disability and Home Care has announced new dates and venues for community consultations on person-centred appraoches. If you know someone that missed out and would like to participate, please let them know.

Registration is available online at or by phoning 1300 550 913 or 02 4984 2554

Hornsby - Focus group 
Hornsby RSL, 4 High Street, Hornsby NSW
Monday 12 September, 10.30am-12.00pm

Campbelltown – Focus group
Campbelltown Catholic Club, Philip Room, 20-22 Camden Road, Campbelltown NSW
Tuesday 13 September, 10.30am-12.00pm

West Ryde - Workshop
Ryde Eastwood Leagues, 117 Ryedale Road, West Ryde NSW
Wednesday 14 September, 10.30am-12.30pm

Eastern Suburbs - Focus Group and Workshop
South Sydney Juniors, 558a Anzac Parade, KINGSFORD NSW
Thursday 15 September
10.30am-12.00pm Focus Group
and 2.00pm-4.00pm Workshop

Northern Beaches - Focus Group and Workshop
Dee Why RSL Club, 932 Pittwater Road, Dee Why NSW
Wednesday 14 September
10.30am-12.00pm Focus Group
2.00pm-4.00pm Workshop

Blacktown - Focus Group
Blacktown Library Function Centre
Monday 19 September, 10.30am-12.00pm Focus Group
(access from Flushcombe Road or car parking underneath via Alpha Street and then up in the lift)

Click here to find out more about the consultations  or call 1800 605 489

Please click here to open the discussion paper in PDF format. If you would prefer to access this in RTF or large print, please click here to download it.

Wednesday, 7 September 2011

Down Syndrome NSW submission to the NSW 'Transition support for students' inquiry

Fifty submission from a wide range of organisations and individuals have been published by the NSW Legislative Council's inquiry into Transition support for students with additional or complex needs and their families, which has now closed. There may be additional submissions that have been kept confidential at the request of the individual.

Down Syndrome NSW 's submission is no. 39 on this listing, each of which can be downloaded for reading.

Public hearings are scheduled to be held on 12th September and 10th October, 2011.

Wordless Wednesday


Tuesday, 6 September 2011

Website of the week: Independent Living Support Initiative

This week's featured website is one of our own projects.  The website is designed to be used by those involved in the two-year pilot project (participants and their families, and service provider staff), and by other people with disabilities and their families who are considering their long term plans.

The goal of the Independent Living Support Initiative (ILSI) is to help people with a disability who have ageing carers and who aspire to live more independently in the community, to achieve that aim and to develop stable long-term accommodation arrangements.

ILSI provides person centred intensive training and formal support services, and helps families develop their own support networks. This initiative is funded by Ageing, Disability and Home Care, Dept of Family and Community Services NSW, and has been designed in collaboration and consultation with Down Syndrome NSW, UnitingCare Disability and House With No Steps (Hunter Region).

Sunday, 4 September 2011

Fathers' Day 2011

Friday, 2 September 2011

Words and pictures: learning needs highlighted in the press

This story in today's Sydney Morning Herald is about volunteers at St Lucy Special School, and it's a terrific one of engaging with community members for the benefit of the students - but the picture is all about James, who is eight, and has Down syndrome.  He looks like one very happy learner!

Click here to read Kim Arlington's article and for a much better look at Peter Rae's excellent photo.

Thursday, 1 September 2011

Mathew Wiggins: on exhibtion, on radio and online

Mathew Wiggins has a goal - it's to become a professional photographer - and he's well on his way as he's just held his second solo exhibition in Byron Bay. Entitled 'In Our Hearts', the exhibition was a departure from the landscape photographs the acclaimed disability activist has become known for, instead choosing to focus on Matthew's new passion: portraits.

Mat's terrific recent interview on ABC local radio is available online here.  He speaks eloquently about his work and his life (including his love of wrestling) during the 12 minute interview.

This is the image that Pam McLeod refers towards the end of the interview:

There appears to be a typo in the link to Mat's website Mathew Wiggins Artography on the ABC website - this one works.

Special Words: app

Special iApps is a non-profit social enterprise, dedicated to helping children learn. They develop apps for the Apple® iPad®, iPhone® and iPod touch®, in close co-operation with education professionals, parents and children. Apps are designed to be suitable for typically developing children and those with learning difficulties or poor fine motor control.

Special Words, based on the See and Learn picture/picture, word/word, picture/word matching program from Down Syndrome Education International is scheduled for release today.  You can see an introductory video on the Special iApps website, along with links for downloading the app from the Apple Apps Store.