Address details

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

Friday, 30 November 2012

National Disability Awards: sometimes we get it right (repost from Ramp Up)

Ramp Up 30th November, 2012

In the disability sector, we get used to hearing the bad stories. But there's an awful lot to celebrate too, writes Craig Wallace.

As someone who works in information and referral services and is also a volunteer disability advocate you get to hear a lot of stories.
People call wanting information, advice, help and sometimes just someone to tell their story to. A chance to unload, to get a voice on the phone that won't try and flick them off somewhere or ask them to 'press 3 followed by the hash key'.
A few years ago I took a long call from a person who rang from a phone box ... read the full piece on Ramp Up

Recap of events for December

Accessible Dance Showcase   1st December 2012

International Day for People with Disability  3rd December

Don't DIS myABILITY campaign (NSW)  1st November - 14th December 2012

Hospitalisation of patients with an intellectual disability, Kogarah  4th December

Boston Children's Hospital Speaker Series (available online): Infantile Spasms in Children with Down syndrome   4th December

Webinar: What Every Mother of a Child with Special Needs Must Know 5th December

Expressions of interest close: positions vacant at Down Syndrome NSW  7th December

Dance to the Nines, Chatswood  7th December

Information session about The Ally Project, Blue Mountains  10th December

Amplify Your Art grant applications close  10th December 2012

Think College webinar series  from 13th December 2012

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Down Syndrome NSW Office closes  20th December - 6th January inclusive

Thursday, 29 November 2012

Legislation to establish a National Disability Insurance Scheme (NDIS) has been introduced to federal parliament.

World News Australia (SBS TV) 29th November 2012:

Prime Minister Julia Gillard has taken the first legislative step towards establishing a National Disability Insurance Scheme on parliament's final sitting day for the year.

Ms Gillard described the National Disability Insurance Scheme Bill 2012 as complex legislation with a simple moral insight at its heart.

Information session on The Ally Project: Blue Mountains

The Ally Project is an initiative of InCharge:


Information session:

Monday 10th December 2012, 7.30 pm - 9.00 pm

  • GO PLACES   

Connect with people of like-mind through your interests and talents!

This is an 8 month project in 2013 that will assist you build relationships in your local community.

We will work with you to figure out out how your talents and interests can be productively applied in community. This could be in the area of work, leisure, civic contribution, home or other life domains.

RSVP via the webpage link is essential for catering and venue information. An Expression of Interest form can be downloaded, and can be submitted by those living in the Blue Mountains, or further afield to register interest in similar initiatives.

InCharge is a 'social business which invests in the dreams and potential of people with disabilities' - InCharge Australia on Facebook

Library Thursday: Try Reading Again

New in the library: Try Reading Again, Deanna Horstmeier, Woodbine House, 2012

Do you know a struggling reader who has given up trying? Try reading again! This book can help turn older beginning readers into first-time readers or significantly improve their reading abilities. The reading method presented here is appropriate for people with intellectual disabilities, as well as for students whose native language is not English (ESL students). Try Reading Again features three important components:
  • Language experience stories
  • Phonics
  • Age-appropriate structured stories
Put these together and you’ll discover it's never too late to learn to read!

Down Syndrome NSW members can arrange to borrow library items via email to, by calling 02 9841 4410 or in person.

Wednesday, 28 November 2012

National Disability Awards 2012

The 2012 National Disability Awards were announced tonight (28th November) at the National Gallery of Australia in Canberra Congratulations to all the award winners.
Gerard O’Dwyer, from Guildford, NSW, has won the Emerging Leaders' Award, recognising an individual aged 15 - 35 who is a leader in their community through raising awareness and improving outcomes for people with disability. Congratulations Gerard - a wonderful achievement to add your portfolio!

(US) National Center for Prenatal and Postnatal Down Syndrome Resources: new online clearinghouse

A wealth of high quality information for expectant and new parents, their families and the professionals that support them:

The (US) National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky's Human Development Institute oversees three medically reviewed programs that complement each other in providing important resources and information for new and expectant parents learning about a diagnosis of Down syndrome: Brighter Tomorrows, Lettercase, and Down Syndrome Pregnancy.

These programs also offer valuable resources for medical professionals delivering those diagnoses.

The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome.

Smiles 4 a Day, Parramatta Stadium 17th November

Tuesday, 27 November 2012

Parliament House, Canberra 27th November 2012

Every Australian Counts today planted placards on the lawn of Parliament House, naming Australian towns in which people need a National Disability Insurance Scheme, ahead of the introduction of draft legislation on Thursday.

Formal and graduation photos

If you would like to share photos from your young person's school formal and/or graduation, you are very welcome to send them to us at for a photo blogpost celebrating these major milestones.

Please send photos as an attachment - .jpg format is preferred, you do not need to edit photos first, files up to 2 Mb are fine.  Thanks.

IDPwD celebrations and events

The calendar is full with events around the celebration of International Day of People with Disability (3rd December) over the next couple of weeks.

For information about events and people, check out these online resources:

International Day of People with Disability Australia

International Day of People with Disability (IDPwD) is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being.

International Day of People with Disability Australia's homepage

Don't DIS myABILITY is the NSW campaign:

International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don't DIS my ABILITY campaign. The campaign celebrates the diversity and ability of people with a disability. It is about promoting positive perceptions and building an environment that encourages active participation in careers, leisure pursuits as well as social activities.

Monday, 26 November 2012

NDIS: draft legislation now online

The draft legislation to establish the National Disability Insurance Scheme will be introduced into the Australian Parliament on Thursday (29th November).  The draft bill can be viewed now on the Government's NDIS website

A 'Your Say' forum has been opened for your comments, on the NDIS website.

Wondering how to choose toys for your child with Down syndrome?

Let's talk - Down syndrome has some good advice on toy shopping, both for toys marketed as 'therapeutic' or 'developmental', and those that kids just love. Jennifer also has some savvy tips on managing (and avoiding!) very noisy toys.

Congratulations Team Australia!

The  6th International Down Syndrome Swimming Championships finished on Saturday in Italy - we know that NSW swimmers Daniel Rumsey, Brendan Foley, Lucy Dumitrescu and James Lawrence all contributed to the overall medal count for Australia, and that new records have been set, but we don't have access to all their individual results yet.  We'll get back to you, or you can keep in touch through the Championship's own website, through the Down Syndrome International Swimming Organisation, or through the Down Syndrome Down Under Swimming Organisation.

Saturday, 24 November 2012

Weekend reading, listening and viewing 24th - 25th November

Never stop drawing, Digby Webster, Don't DIS myABILITY blog, 23rd November 2012

Things that you need to know about college, Matthew, VATTA (Voices at the Table Advocacy) blog, 21st November 2012. This blog is written by the VATTA Committee, a group of self-advocates that is part of the Canadian Down Syndrome Society.

Why Inclusion Benefits ALL Kids in the Classroom! Podcast inteview with Sean Adelman - Inclusive Classroom , 16th November 2012

5 Ways to Support Your Child’s Literacy Development at Home, Sheryl Knapp, Open Books, Open Doors (teaching reading to children with Down syndrome) blog, 3rd September 2012

Creating A Meaningful Life for Jackson , Sally Richards, TedX Canberra, (13m 31s video) 8th September 2012

Sex, love and disability, Alecia Simmonds, Sydney Morning Herald, 19th November 2012

NDIS Feedback: Eligibility and reasonable and necessary support: ASID response, The Australasian Society for Intellectual Disability has issued a response to the issue of reasonable and necessary support required of the National Disability Insurance Scheme. The society has issues with some of the eligibility criteria.

Would I want my daughter 'cured'? The dilemma of a father whose child has Down's Syndrome, Dominic Lawson, The Independent (UK), 19th November 2012. A medical breakthrough presents startling potential but ethical challenges. Read about the research referred to in this post.

Disabled workers challenge naive employers, Rachel Brown, Sydney Morning Herald, 21st November 2012

Beyond the Face,  La Fundación Síndrome de Down de Madrid. A gallery of photos from the unveiling of an exhibition in Madrid earlier this month (showing until 10th December). The billboard sized pictures form an avenue of very stylish portraits of people with Down syndrome. Click on the first photo to start a slide show of larger images from the album.

Friday, 23 November 2012

Webinar: What Every Mother of a Child with Special Needs Must Know

Free webinar for parents of children with special needs

5th December 2012, 7:30 - 8:30pm

This free seminar, 'What Every Mother of a Child with Special Needs Must Know' is presented by Amanda Wood Community Services,  and is designed for parents of children with special needs. From the registration flyer:

Ever been frustrated because:

• You get conflicting advise and information?
• You don't know where to go to get good advice or support for you and your child?
• You don't know where to go to to get a diagnosis for your child?
• You can't get anyone to listen to what your child needs?
• Don't know what Medicare rebates are available to you and your child?
• Don't know exactly how a Psychologist/ Speech Pathologist/ OT can help your child?

We will outline:
  • What the role of various specialists (Paedtiatrician, Psychologist, Speech Pathologist, Occupational Therapist etc) are in diagnosing and treating various childhood disorders and issues.
  • How you can access medicare rebates to get a diagnosis and receive therapeutic services for your child each year.
  • Who can access the $12,000 per child FAHCSIA funding and how.
  • Give you references for peak bodies and other services
We will have a number of Specialists online to give information and answer questions including a Psychologist with over 18 years experience working with special needs, Family and Community Services worker in Early Intervention, Occupational Therapist, Clinical Nurse Consultant and more....

Click here for further information and the link to register onlineor for more information email

Sydney Creative Movement: inclusive dance opportunities

Are you a dancer with a disability or looking for programs for a dancer with a disability?  Sydney Creative Movement has an excellent website detailing classes, and locations, and showcasing their ongoing development. You will see that several people with Down syndrome dance with Sydney Creative Movement:

Here at Sydney Creative movement we believe that dance should be inclusive so we run programs that can be attended by anyone regardless of their ability! Our inclusive contemporary class is attended by a group of dancers with and without disabilities who meet each week to learn contemporary dance technique, improvisation skills and how to develop your own choreography. By making the content of the classes skills based, rather then strictly about technique, as you might experience in other contemporary classes everybody is able to work to their own ability. Having so many people of such varying abilities in one space certainly makes for a refreshing exchange of ideas!     What exactly is inclusive dance? Sydney Creative Movement

A Hip Hop class began earlier this year, and the Legends of Hip Hop performance group is flourishing - they are currently preparing for the  Accessible Dance Showcase, 2012 on 1st December.

Repost: 2013 calendars can be ordered now

A reminder to order your 2013 Down Syndrome NSW Calendars ... 
It is ideal for end of year gifts, and of course every family needs one.
For any further details or to order your 2013 Calender over the phone, please call Siena on (02) 9841 4411

Thursday, 22 November 2012

A forum for health professionals on how to support people with intellectual disability when they are in hospital

9 am - 3 pm  4 December 2012
Research & Education Centre, Auditorium
St George Hospital, Kogarah

The free forum is designed to focus on the needs of patients with intellectual disability in the hospital system, develop partnerships between health staff and the disability services sector, as well as capture emerging issues throughout the patient journey.

Speakers will include clinical experts from Medicine, Allied Health, Mental Health and client and carer representatives.

This forum will seek to:
  • Encourage discussion of the barriers faced and possible solutions to managing the hospitalisation of 
  • patients with intellectual disability.
  • Introduce participants to appropriate resources and services and enhance means of access.
  • Promote patient safety as a core principle in the delivery of health care.
  • Present ALL aspects of the journey- including the patient and the carer 
Image from event flyer

New on the library shelves

Down Syndrome NSW members can arrange to borrow items from the library by email, by calling the library on 9841 4410, or in person.  The librarian is available in the office on Wednesdays and Thursdays.

New books

The Boys’ Guide to Growing Up 
Terri Couwenhoven

The Girls’ Guide to Growing Up 
Terri Couwenhoven (2 extra copies now available)

Enabled Learning – Educating a Student with Down Syndrome in a Primary School Environment
Down Syndrome Association Queensland

Enabled Learning – Educating a Student with Down Syndrome in a Secondary School Environment

Down Syndrome Association Queensland

Beginning Reading: a balanced approach to literacy during the first three years at school 

Yola Center

Celia has Coeliac disease … and Shares Her Secrets 

Lisa Buchner

Chatter Challenge Stage 2: Children 18 months to 3 years. Speech and Language Resource Guide for Parents and Professionals. 

Georgina McCoyDown Syndrome South Australia

Healthy Eating: Eating Guidelines & Meal Planning

Down Syndrome South Australia

Mixed Signals: Understanding and Treating Your Child’s Sensory Processing Issues 

Mary Lashno

Try reading Again: How to Motivate and Teach Older Beginners, Age 10 and Up

DeAnna Horstmeier
Bloom: finding beauty in the unexpected 

Kelle Hampton

The facts of life… and More. Sexuality and Intimacy for People with Intellectual Disabilities

Leslie Walker-Hirsch 
New DVDs
Let the Journey Begin: A Documentary about the Independent Living Support Initiative Program

Down Syndrome NSW

Wednesday, 21 November 2012

Family story in 'Women's Weekly'

The December issue of the Australian Women's Weekly includes an insightful interview with the Orr family, about raising with their now 42 year old son, Iain, who has Down syndrome, along with his four brothers and sisters. Iain now plays a significant role in helping to care for his 85 year old father. 

A preview of Emily Brooks's article is now published online. The print and iPad editions also include an interview and pictures with Andrew Rainsford (47) and his mother Cherry.

At the foot of the page is a short video of the Melbourne dance group, Emotion 21.

Previous Australian Women's Weekly articles about people with Down syndrome and their families:

Wordless Wednesday

Tuesday, 20 November 2012

'Try': theme song for Special Olympics Junior Games December 2012

The 3rd Special Olympics Junior National Games to be held in
Newcastle 6th - 10th December are fast approaching.

Try is the theme song selected for the event you will see why from the video.  Congratulations to singer/songwriter and Special Olympics Volunteer, Amber Lawrence - read the video information for the full story of her connection to Special Olympics. You might recognise some of the dancers in the video.

If your child with Down syndrome is competing in the Special Olympics Junior Games in Newcastle, we would love to hear about, and share a photo or two here.  Please contact if you are interested.

Monday, 19 November 2012

Two Positions Vacant in Parent Support at Down Syndrome NSW

The following two positions are available in our Parent Support team based at Harris Park:

Parent Support (Adults)
We are looking to employ someone two days a week to work in the office of Down Syndrome NSW. The position involves responding to enquiries from families, carers and professionals in regards to adults with Down syndrome.

Parent Support (New parents)
We are looking to employ someone two days a week in the office of Down Syndrome NSW. The position involves supporting and responding to the needs of new parents. Knowledge of social media is desirable.

Please contact Judy Davidson on 02 9841 4401 or email
Expressions of interest close on the 7th December 2012

Don't DIS my ABILITY 2012

Don't DIS my ABILITY, the NSW campaign to celebrate the diversity and ability of people with disability, has been officially launched. It's for everyone, and is supported by the NSW Government. Up to 100 events are held throughout November and December each year - visit the website for a listing of events across metropolitan and regional NSW (and much more) in the lead up to International Day of People with Disability on 3rd December.
The 2012 United Nations theme is Removing barriers to create an inclusive and accessible society for all.
Two competitions are currently open - one has a prize of a $1000 QANTAS voucher, the other prize is an iPad.  Well worth entering!

Dance to the Nines: Chatswood, Friday 7th December

Dance to the Nines is on again - a night for people over 18 with a disability

FREE EVENT - Light refreshments provided

Dance to the music of MIMESIS

6pm - 9pm Friday 7 December 2012

Dougherty Community Centre,
7 Victor St, Chatswood

For bookings, phone 9777 7975 or email

Saturday, 17 November 2012

Weekend reading and viewing 17th - 18th November

Cultural representations of Down syndrome - how far have we come? Fiona Place, Disability and Culture, 11th November 2012

Seb White, 4-Year-Old With Down Syndrome, Stars In Marks And Spencer Christmas Ad, Huffington Post (Parents), 13th November 2012. Print and video

Ideas that stick, Dave Hingsburger, Rolling Around in My Head, 9th November 2012

Parenting Style Has Big Impact On Kids With Disabilities, Michelle Diament, Disability Scoop, 16th November 2012 Abstract online at Science Direct

When food is the culprit, Joan Medlen, Down Syndrome Nutrition (blog), November 2012. The list of reactions, physical and behavioral, that can be due to a food allergy, intolerance, or sensitivity is endless and random.

Danceability, Ten News Thursday 15th November 2012

Friday, 16 November 2012

Down Syndrome NSW Board 2012-2013

A new Board was elected at the Down Syndrome NSW Annual General Meeting held on 28th October 2012:

President: Matthew Kelly
Treasurer: Richard Yee
Vice President: Margot Elliffe
Secretary: Tracylee Arestides

Board Members:
Angela Adams
Roger Bamber
Emily Caska
Candy Connors
Julie Cromer
Chris Elenor
Meaghan Hepplewhite 
Sarah Hyland
Jacqueline Little
Ingrid Rikkerts

Commentary on the NDIS

Prominent supporters of the National Disability Insurance Scheme spoke out about a report released yesterday by a conservative 'think tank' that claimed the scheme's costs will blow out:

2013 Arts and Disability Project Funding (NSW)

This funding program supports arts projects for people with disability. Project funding is for one-off arts and cultural projects at any stage in their creative development and/or public presentation.

Applications are invited from NSW arts and disability organisations working across all artforms and disciplines. Projects must commence in 2013.
Closing date: Midnight Monday 17 December 2012

Funding limit
: Between $20,000 and $40,000 per project

Who can apply?
 Organisations, partnerships and groups (auspiced)
If you need more information about the program contact Arts NSW:
Nea Cahill
Project Officer, Strategic Initiatives
Telephone: 02 8218 2212
Free call: Within NSW 1800 358 594 (then press 3, then press 2)
2013 Arts and Disability Project Funding is supported by the NSW Government through Arts NSW and Ageing, Disability and Home Care
Source: Arts NSW; ADHC

Thursday, 15 November 2012

Library Thursday: Loving Andrew: a fifty two year story of Down syndrome

This new book promises to be a welcome addition to our collection about adults with Down syndrome, growing older with Down syndrome, mental health and family accounts.

Dr Brian Chiccoine wrote the Foreword, which is available to read in full on the Adult Down Syndrome Centre's blog, with the author's permission.  These are the introductory paragraphs

Romy Wyllie’s Loving Andrew: A Fifty-Two-Year Story of Down Syndrome is about her son, Andrew who was born with Down syndrome in 1959. The reader is given an in-depth look into Andrew’s life. We not only get to know Andrew, the person, we get to know Andrew as part of a family and part of the developing Down syndrome community.

As the Medical director of the Adult Down Syndrome Center (of Advocate Lutheran General Hospital and Advocate Medical Group), a facility that has served the medical and psychosocial needs of over 5000 adolescents and adults with Down syndrome, I have had the opportunity to get to know many people with Down syndrome and their families.However, I always appreciate any occasion to get a more in-depth look into the lives of individuals with Down syndrome and their families. This book is one such opportunity.

Romy Wyllie has shared Andrew’s journey with us but also her journey and that of her family. I was blessed to know Andrew, to be part of his life, and to experience joy and discomfort with him. Even knowing all that, I learned from reading this book. I have a better understanding of Andrew and with that I can bring this enriching experience to the next person with Down syndrome I serve.

Prof Michael Bérubé (Director, Institute for the Arts and Humanities, The Pennsylvania State University), endorses the book as ...
.... a moving, unflinching disability memoir that tells a story most disability memoirs don't or can't touch. This is not a story about a cute, charming kid with with Down syndrome; it's a story about a cute, charming kid with Down syndrome who grows up to become an independent adult with multiple challenges. It's also about what 'family', 'love' and 'independence' can mean for all of us. Loving Andrew tells a story that needs to be told, a story that needs to be heard.

Loving Andrew can be purchased on Amazon, here. (Note that there is a button to tell Amazon that you would like a particular title available to read on Kindle, by just one click.)

Loving Andrew is on order for our library, Down Syndrome NSW members can arrange a loan by email, or by calling the library on 9841 4410 (the librarian is available on Wednesdays and Thursdays - voicemail is available at other times).

Wednesday, 14 November 2012

Two sources of experience of schooling

As our school year draws to a close, here are two online resources that you might find useful to read now, and/or file away for your son or daughter's teachers for 2013:

Starting school: what I wish I had been told,  Disability and Culture, 
Fiona Place (Down Syndrome NSW information officer) offers some insights from her experience as a parent of a son transitioning into the last years of secondary school:  

As my son ... enter(s) the last two years of high school what insights or tips do I have for new parents and those about to start school?

Celebrating Success - online resources (UK)
From the Down's Sndrome Association  based in London, come some new online resources offering insights for education professionals:

The Celebrating Success series brings to life the DSA Education Support Packs by using case studies written in the words of teachers, assistants and parents. The series is spilt into four areas of education - Early Years, Primary, Secondary and Further Education/Employment and demonstrates how to implement successful inclusion across each key phase of education.

In order to make them available to as wide an audience as possible they are available to download free of charge as PDF's.
Celebrating Success is about actual classroom practices rather than a particular education system, so can be useful examples anywhere.

Team Australia in Italy for international swim meet

Team Australia (including four swimmers from NSW) is now in Loano, Italy, preparing for the 6th International Down Syndrome Swimming Championships that rub from 15th - 23rd November.  You can send a herogram to team members here, via the Down Syndrome Down Under Swimming Organisation website.  ABC News helped spread the word:

World champion Sun Coast swimmer looks for hat-trickABC News online, 12th November 2012

Queenslander Clinton Stanley will lead the Australian team in its quest for a third consecutive title at this month's world Downs syndrome swimming championships in Italy.

Stanley, 36, from the state's Sunshine Coast has represented Australia in swimming seven times, is a national tennis champion, a surf lifesaver and he has achieved the Scout's highest award.

He is also one of four Queensland finalists in the 'local hero' category for the Australia Day honours.

This month's event in Italy will be the last international meeting for Stanley before he retires.

His mother Sue Stanley is also in Italy for the swimming championships and says her son is an amazing person ... read more here.

Tuesday, 13 November 2012

DSE launches new reading and language intervention: teachers' resources - webinars this month

Down Syndrome Education International (DSE) has announced that a new reading and language intervention for children with Down syndrome will be available from the end of November. The Reading and Language Intervention for Children with Down Syndrome (RLI) teaches language and literacy skills following evidence-based principles adapted to meet the specific learning needs of children with Down syndrome aged 5 to 11 years. RLI was evaluated in a randomised controlled trial in the UK.

DSE has announced that a teacher's handbook describing a new reading and language intervention will be available in the UK from the end of November and in the US in early December.
Webinars: Introducing a Reading and Language Intervention for Children with Down Syndrome (RLI)

This online event introduces a new reading and language intervention for children with Down syndrome. The online seminar is aimed at teachers and parents interested in learning more about the new intervention - including what it offers, who it may be suitable for and how it was evaluated.
3 dates have been scheduled for November:
  • Tuesday November 13th, 7.00pm - 8.30 pm (GMT) / Wednesday 14th November 6.00 am - 7.30 am (AEDT) (Sydney, Australian Eastern Daylight Saving Time)
  • Wednesday November 14th 9.30 am - (GMT) / Wednesday 14th November 8.30 pm - (AEDT) (Sydney, Australian Eastern Daylight Saving Time)
  • Tuesday November 20th 3.30 pm - 5.00 pm (GMT) / Wednesday 21st November 2.00 am - 3.30 am (AEDT) (Sydney, Australian Eastern Daylight Saving Time)

University of Sydney pilot program:opportunities for students with intellectual disabilities at university

Including people with intellectual disability at university 
University of Sydney News, 31st October 2012:

A new program at the University of Sydney has opened the door to university study for five students with intellectual disabilities.

The students are taking undergraduate courses at the University this semester in an Inclusive Education Program (IEP) pilot, an initiative where they have selected to go to lectures in Greek and Roman Myth, Film Studies, Mathematics and Numeracy, Painting and Renaissance and Reformation.

With the guidance of student mentors and additional support from academics, the students are attending lectures and tutorials throughout the semester. Danielle Gild (Dan) receives personalised fortnightly tutorials on Greek and Roman Myth from Classics and Ancient History senior tutor Fran Keeling. Together, they discuss various websites, books and course materials. Fran has set a tailored assignment for Dan; students at this stage aren't required to complete formal course work.

"The best part about uni is Fran, who has been amazing and is always happy and helping me," says Dan. "And she makes me laugh."

Australians with intellectual disability who complete high school typically go on to TAFE courses oriented towards daily living skills and vocational training. Professor Patricia O'Brien, who leads the IEP pilot from the Sydney Medical School's Centre for Disability Studies, says the program helps Australia meet its UN obligations in relation to disabled people and provides participants an opportunity to fully participate in society ... read on here.

Prof Patricia O'Brien's article,  Opening up university education to students with intellectual disabilities was published in our journal, Voice, December 2010. 

If you are interested in post-secondary education for people with Down syndrome and other intellectual disabilities, the US website Think College might be a useful resource:

Doors to colleges are opening for people with intellectual and other developmental disabilities in many different ways all over the (USA). This website is designed to share what is currently going on, provide resources and strategies, let you know about training events, and give you ways to talk to others. The information is for transition aged students as well as adults attending or planning for college. It provides resources and tools for students, families, and professionals

Think College has scheduled a six-part series of webinars from 13th December 2012 to 18th April 2013. Details are linked from the Think College home page. 

Monday, 12 November 2012

Research report: Extra chromosome 21 removed from Down syndrome cell line

University of Washington News, 8th November 2012 (Leila Gray):

University of Washington scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down syndrome, a condition in which the body's cells contain three copies of chromosome 21 rather than the usual pair.

In their report  a team led by Dr. Li B. Li of the UW Department of Medicine described how they corrected trisomy 21 in human cell lines they grew in the lab. The senior scientists on the project were gene therapy researchers Dr. David W. Russell, professor of medicine and biochemistry, and Dr. Thalia Papayannopoulou, professor of medicine.

The targeted removal of a human trisomy, they noted, could have both clinical and research applications.

Down syndrome ... can cause many medical problems, including heart defects, impaired intellect, premature aging and dementia, and certain forms of leukemia, a type of blood cancer.

"We are certainly not proposing that the method we describe would lead to a treatment for Down syndrome," Russell said. "What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders that (can) accompany Down syndrome."

Read the whole University of Washington News report here 

Journal reference:
Li B. Li, Kai-Hsin Chang, Pei-Rong Wang, Roli K. Hirata, Thalia Papayannopoulou, David W. Russell. Trisomy Correction in Down Syndrome Induced Pluripotent Stem Cells  Cell Stem Cell, 2012; 11 (5): 615 DOI:10.1016/j.stem.2012.08.004

Special Olympics Australia: new webpages for regional programs

Special Olympics Australia has recently released a new series of individual web pages providing information about each individual region, such as sports offered, local contact details, local events, and volunteering opportunities. Very user-friendly, and definitely one to bookmark:

Saturday, 10 November 2012

Weekend reading and viewing 10th - 11th November 2012

 20 Special Needs Parenting Tips For Sticky Situations, Karen Wang, The Friendship Circle, 7th November 2012

This is what disability looks like, Mama Mia, 8th November 2012 

Fears for NDIS Simon Duffy, Centre for Welfare Reform, 26th October 2012

Grant to improve weight and activity of kids with Down syndrome, Bob Shepard Uuniversity of Alabama Birmingham News 1 Nov 2012

Eleanor Bailey on the 'r' word, Northwest Down Syndrome Association (Oregon, USA), 24 October 2012 Advocate Eleanor Bailey shares her thoughts on the "the 'R' word" and its effect on those in our community with disabilities. This clip is from an interview conducted for "We All Belong", a short film about school segregation and inclusion.

Overview of the work of the Down Syndrome Center for Research and Treatment at the University of California, San Diego, 19th August, 2011

Friday, 9 November 2012

Access All Areas Film Festival 2012

Each year Access All Areas Film Festival hosts FREE accessible screenings in cinemas in Sydney and Western Sydney, in community venues and primary schools across NSW and in other States, around early December, to coincide with International Day for People with Disability. The 2012 program includes 'family friendly shorts', and in some venues this year, the Australian feature, The Sapphires.

Thursday, 8 November 2012

Library Thursday: new DVD presents accommodation options for people with disability living in NSW

NSW Ageing, Disability and Home Care (ADHC) has released a set of communication resources to highlight the accommodation support options available to people with disability in NSW.
Page 5 of the new booklet
The Accommodation Support Options DVD is a collection of stories about people with disability who are accessing a range of accommodation funded by ADHC, and operated by both ADHC and the non-government sector.
The stories highlight the various support options that are available and how different individuals, with a range of ages, disability support needs and personal situations are currently using them.
Along with the DVD, an updated Accommodation Support Options booklet has been published, which reflects the contemporary models in an easy to read, and visually engaging format. It is available to read and/or download from here.
Fact sheets that explore some of the more specific elements of each model, including eligibility and suitability are also available.

  • Copies of the DVD will be available for loan to Down Syndrome NSW members from our library