Address details


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


Saturday, 22 May 2010

Stanhope Cup - Softball for All

Come and try registration day
Sunday 27th June
NSW Softball Centre
Blacktown Olympic Park, Rooty Hill
Competition starts Sunday 11th July
and continues on Sundays until 26th September
Cost $70 per person (includes Shirt and cap)
All equipment provided

For further information, visit www.softball.net.au or phone 9677 4006

Friday, 21 May 2010

Option to get Centrelink benefits weekly

New legislation now means that vulnerable Australians have the option of receiving their regular income support payments weekly, instead of fortnightly, to help them better manage their budgets. Centrelink staff are able to offer the weekly payment option to customers identified as having difficulties budgeting their payments across the fortnight under the Social Security and Family Legislation Amendment (Weekly Payments) Bill 2010.

For more information contact Centrelink:

www.centrelink.gov.au/internet/internet.nsf/contact_us/index.htm

Source: Work 'n' Care April 2010

Thursday, 20 May 2010

Library Thursdays: No more meltdowns

No more meltdowns: Positive strategies for managing and preventing out-of-control behaviour by Jed Baker (Future Horizons, 2008) is a book to help deal with behaviour problems that don't seem to respond to the usual techniques. Baker, author of the popular Social Skills Picture Books, uses a positive approach to creating plans to prevent negative behaviour. Baker has experience working with people on the autistic spectrum and although this book is not specifically for people with Down syndrome or autism, the visual learner is well suited to the approach he takes.
The strategies include accepting and appreciating your child, lowering your expectations, and distracting to reduce the behaviour when it happens. To limit the behaviours in the future the cause must be determined and Functional Behavioural Assessment (Antecedent, Behaviour, Consequence (ABC)) is used. Baker provide 15 plans of common concerns such as: refusal to eat healthy foods, doing schoolwork, cleaning up, waiting, stopping a fun activity, bullying, and going to bed. Baker provides a scaffold to create your own plan.
This book would be useful to families and teachers who struggle to figure out how to address behaviour issues. These techniques will work well with people with Down syndrome because they encourage determining the reason for the behaviour, accepting the child's limitations, teaching skills required to be successful in alternative behaviour and using visuals or whatever other supports the child needs.

Other behaviour resources:
Kathleen Feeley & Emily Jones, Strategies to address challenging behaviour in children with Down syndrome, Down Syndrome Research and Practice 2008, 12:(2) 153-163.

Stepping stones Triple P workbook and DVD


If you'd like to borrow No more meltdowns or any other resource from the library, just call or email us.

Wednesday, 19 May 2010

Child actor with Down syndrome - call out

A film producer working on a commission for Relationship Australia in partnership with the Federal Attorney General's department to produce training DVDs, has asked for our assistance in finding a young girl, 10 - 11 yrs old who has Down syndrome, for a role in one of the training films.  It is about family violence (not directed towards to the child), and will not be on general public release.  The child having a disability is an integral aspect of the scenario.  The scenes will be filmed on one day between 8th - 11th June.

If you would be interested in following up further detail on this opportunity for a acting role, please contact Priscilla at DS NSW on 9841 4402 or priscilla@dsansw.org.au, or the director, Alissar Gazal at Pomegranite Productions, on 0414 248 857

Tuesday, 18 May 2010

From NDIS, on the Productivity Commission's discussion paper

The Productivity Commission released their discussion paper yesterday. The paper summarises what the Commission sees as the important issues, and contains a series of questions to prompt discussion. People may choose to answer these questions in their written submissions and during public hearings.

There are a number of ways you can participate in the inquiry. You can make a formal submission or a presentation to the Commission at one of the public hearings. The guidelines for making a formal submission are available on the website below.

You can also make what is called a personal response – which is different to a formal submission. In a personal response you can choose to answer any or all of the questions in the paper based on your personal experience. The Commission will then compile all these responses into a single document. This is a shorter, more informal way to participate in the inquiry.

The issues paper contains a number of questions about a wide range of issues. It is important to remember that you do not have to answer all of the questions – just those which matter most to you. It is also important to remember that the Commission is most interested in what you would like to see in the future, rather than detailing all the ways the current system is failing. This inquiry is about a developing a blueprint for the future.

In addition to the issues paper, the Commission has produced an easy English version and a short summary document which covers the key questions. You can download all of these documents at: http://www.pc.gov.au/projects/inquiry/disability-support

We suggest that you start with the short summary document, before you look at the main issues paper, which is long and complex, and then focus on the questions that are most relevant to you.

Submissions are due at the end of June.

The dates of the initial round of public hearings have also been set. Check out the link above and find out when the inquiry hits your hometown.

Remember this is your chance to change the future of people with a disability and their families in this country. Don’t miss this important opportunity to advocate for the kinds of reforms you would like to see.

And stay tuned for more information about the growing campaign for a National Disability Insurance Scheme and how you can become more involved.

Thanks again for all your support.

The NDIS Team
(received 18/5/2010)

The Productivity Commission Public Inquiry into Disability Care and Support - link to terms of reference, discussion paper

Buddy Walk Australia 2010


Adelaide 
Foundation 21’s tenth Buddy Walk on 10/10/10 !

Melbourne 
Sunday 10/10/10

Canberra
Saturday 16/10/10

Brisbane
Sunday 17/10/10

Perth 
Sunday 17/10/10

Sydney
Sunday 24/10/10

Newcastle, Wollongong, Wagga Wagga dates to be confirmed.

This year, plans are a foot for a number of new Buddy Walks
 ..… Tasmania, Northern Territory, Bendigo and other locations are all planning their first Buddy Walks
..… stay tuned!

Monday, 17 May 2010

Proloquo2go workshop: fully booked

Our 5th June parent forum on how Proloquo2go can be used to assist people with Down syndrome to communicate is fully booked.

You can register your interest in taking up a cancellation should any arise, or for a repeat event,  with Siena, on 9841 4411, or workshops@dsansw.org.au

Details are available here.

Thank you to those who have booked a place - we look forward to seeing you.

Coffee morning dates - Newcastle

The Newcastle Down Syndrome Support Group has organised its coffee mornings at different location and on different days of the week to cater for the schedules of many busy families, hoping you can join in at least sometimes.

Image: dreamstime.com

When and Where?
From 10am
Tuesday, 25 May – Diggers @ Wallsend
Friday, 16 July Jewells Tavern
Tuesday, 24 August – Warners at the Bay
Friday, 8 October – Jewells Tavern
Tuesday, 16 November – Diggers @ Wallsend
Everyone is very welcome!
If you are keen for quarterly evening meetings with a speaker let Anna know, and of course any interest in managing this aspect is welcome.
Contact: Anna Brown 0414 90 90 40

"From Institutions to Community Living" Forum

The NSW Ombudsman and Disability Council NSW present ‘From Institutions to Community Living’, a free forum that will examine the plans for working with people with disabilities and their families to move from large residential centres to community based accommodation.

At the forum we will hear from individuals with first hand experience in making this move, and explore the challenges and opportunities ahead.

Date: Monday 21 June 2010

Time: 9:30am – 4:15pm

Venue: The Banquet Hall, Sydney Masonic Centre, 66 Goulburn St, Sydney.
The Sydney Masonic Centre is an accessible venue.

Cost: Free

RSVP: Places are limited so please respond by Friday 4 June to: forums@ombo.nsw.gov.au  or Ph: (02) 9286 0900 or 1800 451 542. To RSVP, please provide your name, address, contact details (an email or postal address). Please specify your dietary requirements.

For further info: email: forums@ombo.nsw.gov.au  or contact Eva Ph: (02) 9286 0900 or 1800 451 542.

Sunday, 16 May 2010

Pensioner fee exemption for Photo Card

The NSW RTA has announced that it will now exempt pensioners from the previously imposed fee of $44 for a Photo Card.  The exemption is effective from 30th April 2010.  Eligible pensioners who applied for ID Cards after December 17 and were charged the $44 can go into their local motor registry and apply for a refund.

The NSW Photo Card is a voluntary identification card for people who do not hold a current NSW driver licence or other form of photo identification, to help them prove who they are.

The Photo Card )was introduced in December 2005 and replaced the proof of age card. Previously there were no pensioner concessions for photo cards.
Source:   i:D … BULLETIN OF THE DISABILITY COUNCIL OF NSW, May 2010

NEW DVD: A Place to Call Home: talking about devolution

Produced by Disability Enterprises Leura

A Place to Call Home: talking about devolution records the journeys of some of the residents, families and staff of Greystanes Children’s Home, a large residential facility that devolved into a range of community based services.

Other parents whose adult children still reside in institutions also share their hopes and fears of a future life in the community; and Jan Daisley, a leading advocate for people with disabilities, provides a personal insight into institutional care and her quest to find her own "place to call home".

The DVD will assist families, community groups, service providers and students in discussing devolution and its critical role in enabling a person with a disability to live a full life in their community.

A trailer for the DVD can be viewed  here.

Mr Paul Lynch MP Minister for Ageing, Disability and Home Care will be launching ‘A Place to Call Home: talking about devolution’

Date: 24 May 2010

Time: 9:30am – 2:00 pm

Venue: The Sydney Masonic Centre, 66 Goulburn St, Sydney.

Attendance: Free

Morning tea and lunch provided.

Registration is essential by 17 May 2010.

To Register: Phone: 4784 1118 to leave details; or email: info@disabilityenterprises.com.au  and provide your name, address, organisation, phone number and email address. The DVD will be for sale from the date of the launch for $30 for individuals and $70 for organisations. Price includes postage and handling.

Adam's influence ....

An interview with Richard Wilkins in today's Sunday Herald Sun opens with the influence of his eldest son, Adam, who has Down syndrome, and was born when Richard was just 18. He says,

 "Adam gave me a reason to want to succeed while giving me an anchor to keep my feet on the ground."  Read the interview here.

Richard Wilkins is a generous supporter of Down Syndrome NSW - he acted as MC at the gala event Comedy is King in 2009.

Saturday, 15 May 2010

Leading the way

Children's News is an in-house publication of Children's Hospital, Boston.  The lead article in the latest issue (April 2010) will resonate with families way beyond Boston:

Children’s new star player
The young couple in the waiting room of Children’s Hospital Boston’s Down Syndrome Program looks nervous. It’s the first time they’ve brought their 8-month-old son, Sam, to the clinic, and they’re uncertain just what to expect. But when Clinic Coordinator, Angela Lombardo, introduces them to Ben Majewski, 19, the clinic’s new resource specialist, they relax almost immediately.

Download the article here (you'll get the whole publication, the article about Ben Majewski is worth reading all the way through, p1 and part of p4 - the best bit is at the end, and the photos are worth seeing.)

Friday, 14 May 2010

Christopher Bunton, gold medallist!

The National Special Olympic Games were held last month in Adelaide.  Many of the athletes competing were people with Down syndrome.  We congratulate them all on their participation and their achievements.

Highlights from the games are available in online videos on the Special Olympics Australia website.  You might see one or two familiar faces in the slide show of the top of the page.

Among NSW athletes, Christopher Bunton was very successful, as you will read in this story in his local newspaper, the Penrith Star.  Christopher won seven gold medals in men's gymnastics - and he's only 17! 

Christopher has a lot of experience in high level gymnastics competition - this photo (by Tony Stinson) was taken during competition at the World Special Olympic Games in Shanghai in 2007, and we were fortunate to have it on the cover of our quarterly Newsletter for Summer 2007 - 2008:



Thursday, 13 May 2010

Library Thursdays: The New Social Story Book

Carol Gray developed the Social Stories formula for use with people with autism. These stories are also of great use with people with Down syndrome to help understand social expectations, learn new skills, and work through difficult situations or concepts. It has been 10 years since Carol Gray published her first Social Story book and the library has just received the anniversary edition of the New Social Story Book.
There are over 150 stories in this book plus a detailed tutorial at the front to tell you how to write your own. There is also a CD with the stories and pictures in the book in PDF format so that you can print some out and there are also the stories with words only in Word format so that you can customise them for your child and add your own pictures.
The stories cover the following subjects: Change, Mistakes, Me and My Feelings, Celebrations and Gifts, People Skills and Friendship, Bullying: What to Think, Say and Do, Understanding Adults, Home and Community, School and Planet Earth. Some of the stories are: "Mistakes can happen on a good day", "We're going to a big family party", "Thanking people for the nice things that they say", "How to lose a game and win friends", "It may not be fun but it has to be done", "Taking a shower in ten steps", and "When my teacher is somewhere else".
It is a good collection and will make it easier to create the stories you need for your situation.

Wednesday, 12 May 2010

Notice of cancellation: Starting School

The DS NSW parent workshop, Starting School, scheduled to be held on Saturday 15th May 2010 at Parramatta has been cancelled.

All enquiries: Siena O'Brien workshops@dsansw.org.au  or 9841 4411

Tuesday, 11 May 2010

From Ruth Paillas at Ashfield Council  (Ageing and Disability Services):

On behalf of members of the newly named Inner West Disability Forum, I would like to invite you to our Official Launch to be held on Thursday 13th May, 11am – 1pm and hosted by FRANS Inc. in Croydon. The Launch will promote the Inner West Disability Forum and its renewed image, focus, structure, purpose and energy in 2010.

With an emphasis on issues based discussion, worker support and collective advocacy, the Inner West Disability Forum will benefit from strong and committed membership and we encourage your organisation, or you as an interested community member, to be part of this group.

On Thursday 13th May, Julie McCrossin will be facilitating the Launch accompanied by a panel of guests with varied and vast knowledge and experience. Julie has a strong public profile and is committed to justice and diversity.

Discussion will engage with people attending, their experiences and their stories; it will provoke ideas around collective representation and advocacy; it will provide a setting for the future work and purpose of the Inner West Disability Forum.

FRANS (Family Resource and Network Support) is hosting this event with the purpose of providing an appropriate venue and as an indication of their support to the Inner West Disability Forum.

FRANS is located at 113-119 Edwin Street North in Croydon.

To RSVP for this event please contact Ruth Paillas at Ashfield Council on 9716 1842 or email ruthp@ashfield.nsw.gov.au

Sunday, 9 May 2010

Mothers' Day



Thursday, 6 May 2010

Library Thursdays: Friendship Resources

Associate Professor Keith McVilly from Deakin University presented a seminar on friendships for people with Down syndrome on the weekend. As well as confirming the importance of friendships for every person and the difficulties faced by people with disabilities making and maintaining friendships, Ass. Prof. McVilly spoke about what friends are and strategies to help friendships occur and prosper. Research has found that the best long term friendships come from school and faith-based communities. He recommends using social stories, finding out what the person is interested in, finding others who share those interests and teaching useful social skills. He spoke about setting up circles of friends and support groups. These work best when initiated from home or in primary schools. He spoke about setting up a register of people and interests to match them. Small groups discussed all these ideas and set everyone thinking about other ways to support and foster friendships. Down Syndrome NSW will be looking at ways in the future to develop and support some of these ideas and inform our members of what others are doing. We look forward to hearing about your plans.

Ass. Prof. McVilly's articles, I get by with a little help from my friends and Self-advocates have the last say on friendships can be borrowed from the library.

Other resources in the library on creating circles of friends and peer support groups include:

Peer Support strategies for improving all students' social lives and learning by Erik W. Carter, Lisa S. Cushing & Craig H. Kennedy (Paul H. Brookes, 2009).
(This book is reviewed by Terri Mauro here)
An article by Erik Carter, Friendship Matters: Fostering Social Relationships in Secondary Schools, TASH, Nov/Dec 2008 can be accessed here.

Peer Buddy Programs: For Successful Secondary School Inclusion by Carolyn Hughes & Erik Carter (Paul H. Brookes, 2009). Setting up and maintaining peer buddy programs in high schools.

Creating Circles of Friends: A Peer support and inclusion workbook and Circles of Friends DVD by Colin Newton (Inclusive Solutions, 2003.)

Inclusive Solutions website also has some articles of interest.

If you would like to borrow any of these resources or any others or want more information, just email or call us.

Wednesday, 5 May 2010

ACTDSA Maths Workshops: 14th and 15th May


1.  A workshop for teachers and teacher assistants supporting children with Down syndrome
Friday 14th May 2010

2.  A workshop for parents and carers supporting children with Down syndrome
Saturday 15th May 2010

Venue for both events:
Australian Catholic University
Corner of Phillip and Antill Streets, Watson, ACT

Guest speakers: Dr Rhonda Faragher, and Theresa Shellshear

For further information please contact Karen Garrity: karengarrity@homemail.com.au or 0427 355 181

Tuesday, 4 May 2010

Scrapheap Adventure 2010: Trail Bikes Adventure Magazine article, Part 1

Will publicity like this just encourage them?
We sure hope so!
Scrapheap Adventure 2011 is already on the drawing board ....

Trail Bikes Adventure Magazine has published Part 1 of a two part article about chief Scrapheap Adventurer, Perry Gilsenan, the scrapheap bikes, and the event he organised to benefit Down Syndrome NSW last month - raising more than $20,000.


Monday, 3 May 2010

Best Documentary at Tribeca: Monica and David

There is quite a buzz around the release of another film about people with Down syndrome. 
The award for the Best Documentary (and the $25,000 prize) at the Tribeca Film Festival in New York has gone to Monica and David, a film made in the lead to the wedding of two young people with Down syndrome.  The film's website includes a trailer, news about its production, release and screenings, commentary and responses to the film.

Building Strengths in Children with Special Needs: a talk for parents

This talk, hosted by The Spastic Centre, is for parents who have a child with a disability, between the ages of 7 to 14 years. Information will be provided on how parents can help their child to:
  • Learn more about their feelings and how to talk about them
  • Learn new coping skills and behaviours
  • Develop life skills to confidently manage stressful situations
Free-of-charge, refreshments will be provided.

Presenter: Heidi Jarvis, Psychologist

Friday 14 May, 10am -12pm

The Spastic Centre, University of Western Sydney - Penrith Campus
Building G, Second Ave, Kingswood

RSVP: Friday 7 May 2010
Alissa Griffiths: 9479 7225 or agriffiths@tscnsw.org.au

New blog with a focus on communication

Jennifer Bekins is a speech and language pathologist at the Jane and Richard Thomas Centre for Down Syndrome in Cincinnati.  She has started a blog about communication and people with Down syndrome, Communication Skills for Life.  She explains that her interest arises from life with her three siblings with Down syndrome.  Well worth a book mark.

Friday, 30 April 2010

DS NSW e-Update, May 2010

The online edition of our monthly information and events bulletin, Down Syndrome NSW e-Update, May 2010 is now available here.


You can subscribe to email delivery using the link in the masthead.

Inquiry into planning options and services for people ageing with a disability

This Senate committee is investing:

Access to planning options and services for people with a disability to ensure their continued quality of life as they and their carers age, and to identify any inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers.

The Committee is seeking written submissions from interested individuals and organisations preferably sent electronically by email to community.affairs.sen@aph.gov.au  as an attached PDF or Word format document.The email must include full postal address and contact details.

Alternatively, written submissions may be sent to:

Committee Secretary
Senate Community Affairs References Committee
PO Box 6100
Parliament House
Canberra ACT 2600

Closing date for the receipt of submissions is 28 May 2010.

Terms of reference and further information is available from the Inquiry's web page.

Down Syndrome NSW is compiling a submission, and welcomes members' input - please contact Kathi Beck, library@dsansw.org.au  or phone 9841 4410 on Tuesdays or Thursday (or leave a voicemail at other times). Individual submissions are, of course, encouraged.

Wednesday, 28 April 2010

Library Thursdays: Exercise and physical activity


At the World Down Syndrome Congress last year, Nora Shields spoke about the need for physical activity and how it is more difficult for people with Down syndrome to move due to low muscle tone and other factors. Lack of activity has an impact on health, work possibilities and quality of life so activities need to be found that are enjoyable and not difficult. We have a few resources in the library that could be helpful.

Down syndrome: Play, move and grow by Anne Jobling & Naznin Virji-Babul (DSRF, Burnaby, Canada, 2004) looks at each age group and how motor development progresses and can be encouraged. It is a bit clinically but there is much good information and research.

Gross motor skills in Children with Down syndrome by Pat Winders (Woodbine House, 1997) is a classic for motor development activities in the early years. And Motor Skills Development for individuals with Down Syndrome by Ben Sacks & Sue Buckley provides the usual great research and information from Down Syndrome Education International.

Yoga for the Special Child: a therapeutic approach for infants and children with Down syndrome, cerebral palsy, learning disabilities by Sonia Sumar (Special Yoga Publications, 1998) gives an easy to follow program for parents and professionals.

Yoga and children with Down syndrome- shows the introduction to a DVD on yoga done with people with Down syndrome.

Links to sports activities can be found in this blog as we become aware of them as well as on our website.

If you'd like to borrow any of the resources or anything else from the library, just email or phone us.

Respite Guidelines and New Directions in Respite Services: new from ADHC

Two new publications related to respite care services have been released by (NSW Human Services) Ageing, Disability and Home Care:


About the respite program guidelines
The Respite program guidelines (disability) (the guidelines) provide the framework for respite service delivery for Ageing, Disability and Home Care, Department of Human Services (ADHC) operated and funded disability respite services. The guidelines have been developed by ADHC to support ADHC and non-government providers in delivering respite services in NSW. These guidelines will also be used by ADHC staff involved in the performance monitoring and reporting of respite services.
These guidelines provide an outline of respite services, the role of respite services within the disability service environment and the principles and values that should guide service delivery. They provide information about ADHC’s expectations for the provision of respite services by ADHC Regional and funded providers, while also enabling providers to deliver services in ways that respond to the needs of respite users and local conditions. The guidelines reflect the NSW Government’s commitment under Stronger Together: A new direction for disability services in NSW: 2006-2016 to expand existing respite services and build a more flexible and responsive disability respite service system.
These guidelines are not intended to provide detailed operational guidance but should be considered within the existing policy framework as set out in the funding agreement and the description of funded service or the service description schedule.
Copies of these guidelines and the documents referred to in the guidelines may be obtained from ADHC’s website at www.adhc.nsw.gov.au
Content
About the respite program guidelines
Services these guidelines apply to
Updating the guidelines and feedback from service providers
Overview of respite
Responding to a growing need for respite
Principles
Eligibility and priority of access
Service types
Funding
Operational service requirements
Service monitoring
Legislation and policy
Working in partnership
 
New directions for disability respite services in NSW  is a report on consultations about respite services in NSW, conducted during 2009.
From the introduction:
The (paper) New directions for disability respite services in NSW has been developed to assist in the reform and expansion of disability respite services.
It will guide the way future disability respite services are delivered, how people access those services, the types of services provided, the settings in which they are delivered and the development of new respite services across the sector.
.... Ageing, Disability and Home Care (ADHC) has consulted with a wide range of stakeholders and reviewed national and international research along with key research conducted locally by Interchange NSW and Carers NSW.
..... In all, more than 30 consultation forums were held across the state where families and carers told us what types of respite services they need, how they would like respite services to be delivered and the times at which they need respite support. Respite service providers and advocates suggested ways in which the respite service system could be improved to ultimately deliver the best possible respite support for their clients. In addition to the forums more than 50 separate written submissions were received from people with a disability, their families and carers, advocates and service providers.

Tuesday, 27 April 2010

Revision of the National Standards for Disability Services

From April 2010, people will be able to participate in consultations to support a revision of the National Standards for Disability Services (National Standards). The consultation is open until July 2010.

Focus Groups
For further information on focus groups and workshops in NSW, please contact Sonia Davda, Policy Officer, Ageing, Disability and Home Care on (02) 8270 2093 or by email at sonia.davda@dadhc.nsw.gov.au

Online Survey
From 21 April 2010, people wishing to complete an online survey can go to
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/online-survey-for-the-national-standards

Written Submission
From 20 April 2010, people wishing to write a submission can find the template at
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/written-submission-for-the-national-standards

Telephone feedback
From 22 April 2010, people wishing to give telephone feedback can call the NSW Fair Trading Information Centre on 1300 528 937.

Source, and further information:
Revision of the National Standards for Disability Services,  Bulletin #3 – March 2010, posted on the AHDC website.

Monday, 26 April 2010

Entertainment Book 2010 - 2011 is now available

BUY A BOOK TO BUY A BOOK - you can support the DS NSW library by buying the Entertainment Book 2010 - 2011.

The Entertainment Book is a restaurant and activity guide that provides special 25-50% discounts and 2-for-1 incentives from many of the best restaurants, hotels and attractions. It represents great value for family entertainment. The featured restaurants and other businesses do not pay to be included, they are selected based on awards, reviews and personal recommendations. See the Entertainment Book web site for more information.

You can order localised editions, including North Sydney, The Hills/Parramatta, Canberra, Central Coast/Newcastle/The Hunter, and there are interstate and even New Zealand editions that would make great gifts.

 or contact Angela Adams at the DS NSW office on (02) 9841 4409 or email admin@dsansw.org .au for an application form.
 
Thank you for your support - enjoy your Entertainment Book's benefits.

 

Sunday, 25 April 2010

Young man with DS in University of Utah Valley program


Reed Hahne is a young man making his way in the world, making the most of opportunities that were almost unthinkable a generation ago, and remain unusual - while school systems still wrestle with supporting students appropriately, post-secondary education is beginning to open up.  Here is the University of Utah Valley's Student Success Story on Reed.

Saturday, 24 April 2010

Nutrition researchers to develop new growth charts for children with Down syndrome

The Children's Hospital of Philadelphia (affectionately known as "CHOP") runs a well known and highly regarded Trisomy 21 Program. Such specialist programs take on clinical, education and research roles. Here is news of a current research project that will directly benefit the health care of children with Down syndrome, at a very practical level:

Parents and doctors have known for a long time that children with Down syndrome tend to grow more slowly and are considerably shorter than most other children. But pediatricians needing to record growth milestones at regular office visits have an outdated set of growth charts based on data collected more than 25 years ago. Since that time, there have been major advances in the medical care of children with Down syndrome. In addition, the demographics of the general U.S. population have changed, and children are taller, but also more overweight.

Now researchers at The Children's Hospital of Philadelphia will be measuring children with Down syndrome from birth to age 21 to develop updated growth charts. A four-year, $1.2 million grant from the Centers for Disease Control and Prevention (CDC) is supporting this effort, which brings together experts from the Hospital in growth and nutrition, Down syndrome (also called trisomy 21), and general pediatrics.


Read on for the full text of Eureka's news report about this work (22/4/2010)

The study will produce valuable new clinical tools, but it will also be interesting to see the changes in growth patterns over the 25 years between data collections.

Friday, 23 April 2010

New thinking about molecular genetics and Trisomy 21

An Ohio State University study published in March highlights the complexity of the effects of increased “gene dosage” that comes with Trisomy 21 . The researchers observed that a protein, MeCP2, involved in gene functions that influence cognition is reduced in brain tissue from people with Down syndrome. They then demonstrated that the levels of MeCP2 could be increased in the brains of mouse-models of Down syndrome, by injecting an experimental drug. The relative importance of MeCP2 in cognitive impairment in Down syndrome is not yet clear, although it is known to play a role in Rett’s syndrome.

The broader concepts of gene-protein product pathways acting in paradoxical ways is not really new, but the demonstration that increased gene dosage is not necessarily a simple linear effect in Trisomy 21 is significant for understanding that it is unlikely that there will be a simple “solution” to the anomalies that Trisomy 21 causes, even in isolated aspects of its multiple impacts. Even when we know what the genes involved are and what effects they have, the biological pathways are complex.

The online science news service Eureka reported the research and the interesting background to how the protein was linked to Trisomy 21 here.

Citation
Donald E. Kuhn, Gerard J. Nuovo, Alvin V. Terry Jr., Mickey M. Martin‡, Geraldine E. Malana, Sarah E. Sansom, Adam P. Pleister, Wayne D. Beck, Elizabeth Head, David S. Feldman and Terry S. Elton, Chromosome 21-derived MicroRNAs Provide an Etiological Basis for Aberrant Protein Expression in Human Down Syndrome Brains J. Biol. Chem. 2010 285: 1529-1543.

The abstract is available online from the journal's website.

Thursday, 22 April 2010

DS NSW Mothers' Weekend 2010


18th - 20th June 2010
Treetops Resort, Avoca Beach

$245 per person, twin share

This event is open to Down Syndrome NSW members only.
Register by 30th May 2010
Enquiries: Lynn or Judy at Down Syndrome NSW 9841 4401 or support@dsansw.org.au

Click here for a flyer and registration form for Mothers' Weekend 2010

Library Thursday : an Interview with Jennifer Graf Groneberg

The author of Road Map to Holland has recently been interviewed by Literary Mama about life with her growing family in rural Montana:

In addition to writing, she home schools all three boys -- the twins are now 6 and Carter is 11 -- and has become a resource and advocate for families with special needs children. In an interview with freelance writer Sarah Werthan Buttenweiser, (Jennifer) Graf Groneberg talks about how and why she wrote her story, what it's like to move from Internet popularity to print publishing and how she juggles motherhood, homeschooling and her creative life........ Read on to catch up with Jennifer Graf Groneberg 6 years along the Road

Road Map to Holland is available for loan to member from the DS NSW library - you can request it by email: library@dsansw.org.au

Wednesday, 21 April 2010

DS NSW events April - May - June

The last few weeks have been busy with World Down Syndrome Day, adventures, fundraisers and social happenings. For the next few weeks, we'll be busy with information events. Here's a summary of what's coming up. More details and the links you need to register for each are here, or go directly to the flyers linked below:

  • Arabic speaking parents of children with Down syndrome - morning tea, Thursday 29th April, 2010 , 10:00am – 12:30pm, Harris Park.
    Phone Lynn or Miriam at DS NSW, on 9841 4401 or Maha on 0408 205 522 to RSVP

  • Behaviour Management - for teachers, Friday 30th April 2010, Rosehill, Ass Prof Keith McVilly
  • That’s what friends are for, Saturday 1st May 2010, Rosehill, Ass Prof Keith McVilly

    Click here for more details and link to brochure and registration form these two events presented by Ass Prof Keith McVilly

    Click here to book online for That's what friends are for at Rosehill

  • Starting School - for parents of children with DS starting kindergarten in 2011 or 2012, Saturday 15th May 2010: Parramatta. Download flyer and registration form.

  • That's what friends are for - a workshop for parents and carers of young people with Down syndrome, Saturday, 29th May, Tamworth. Presented by Susan Jones, Step Ahead Consulting. Download flyer and registration form.

  • How can Proloquo2go assist people with Down syndrome to communicate effectively? A parent forum about a communications application for iPhone/iTouch/iPad, Saturday 5th June: Harris Park. Download flyer and registration form.

    Details for events for grandparents and for teachers later in June are to be confirmed.

Centre for Disability Studies

The Centre for Disability Studies (previously the Centre for Developmental Disability Studies) is an academic unit of the University of Sydney. The Centre has recently undergone some changes, including the appointment of its new Director, Prof Patricia O'Brien, following the retirement of the founding Director, Prof Trevor Parmenter.

The website has been considerably re-vamped and upgraded,and includes better access to and information about the NSW Developmental Disability Health Unit (a specialist consultative medical service for people with developmental disabilities) - accessed from the Clinical Services tab.

Well worth a bookmark.

Monday, 19 April 2010

Grace App - another communication option

Grace App is another option for using picture communication on an iPhone, iTouch or iPad. developed by the mother of an autistic child. It is available from iTunes. Click here to read a report press report.

Supported Living Fund for NSW

The discussion paper, A Supported Living Fund for NSW, is an initiative of Family Advocacy - you can download the document here.

Down Syndrome NSW has discussed supported living arrangements with many members over many years, individually and in group settings, and has presented the views of families to government at every opportunity. While a very welcome increase in funding for supported accommodation has materialised in the last 3 - 4 years, families remain frustrated that mechanisms to allows people with disabilities and their families to have more control over and input into supporting them to live away from the family home has not been developed.

This discussion paper raises most of those issues and proposes a solution that is in line with what many families would welcome. Its release is timed to maximise interest in the lead-up to the State election, and follows recent publicity of the no-win situations that families have found themselves in when they can and wish to contribute to their son or daughter's long term support outside of the existing ADHC controlled system of supported accommodation.

It is important to note the distinction that this document, and other Family Advocacy initiatives draw between "supported accommodation" and "supported living" .... it's a lot more than semantics.
And to note that this concept is separate from (although related to) concurrent campaigns for Self Directed Funding, and the campaign for a National Disability Insurance Scheme.

Sunday, 18 April 2010

A wedding video ....

Some people have suggested that this wedding video should come with a tissue warning. Tiffany's mother sums up the couple's loving relationship as "better together than either on their own". The video speaks for itself.

(Thanks to Stuart Mills at DSA in London for the link)

Saturday, 17 April 2010

Shorten the white knight for no-fault disability insurance

The campaign for a National Disability Insurance Scheme continues to draw attention in the media.

In today's Fairfax press, columnist Adele Horin surveys the role of Parliamentary Secretary for Disabilities, Bill Shorten in putting disability-related issues firmly on the national agenda.

..... Whatever the motive, Shorten has turned a backwater cause into a politically prominent issue ..... Click here to read the column.

Friday, 16 April 2010

CHW School Link: mental health, children and adolescents with intellectual disability

School-Link is a project of the Children's Hospital, Westmead (in Sydney), supporting the mental health of children and adolescents with an intellectual disability by focussing on training and informing the wide range of professionals who might work with them and their families.

The first CHW School-Link Newsletter has just been released, and is available online here.

You can also sign up to an e-list that will mainly be used to circulate future issues of the Newsletter.

Hands Can Talk - new website

Hands Can Talk, the sign language and communication consultancy run by Aileen Ryan has a bright, colourful new website, with information about how sign can be implemented for people with communication difficulties whether their hearing is impaired or not, resources, and workshops all over NSW and interstate.

Thursday, 15 April 2010

Free ABA apps from iTunes for April

To mark Autism Awareness Month, iTunes is offering 26 ABA flash card applications, each with 50 - 60 photographs, for free download until the end of April.

The apps are for iPhone and iTouch - we hear that they are beautifully clear photographs, many with no backgrounds. Click here for more information and links to the downloads.

The producers list these features:

- Clear, Colorful, Concrete Images
- Benefits to both Visual and Auditory Learners
- Classical Music with Visual Reinforcement
- Sound can be turned "on" or "off"
- Flash Cards can be shown in order or shuffled
- Concisely Pronounced Audio

Library Thursdays: Riverbend Down Syndrome Support Group and Down Syndrome Centre Ireland

We often mention the Down's Syndrome Association (UK) and Down Syndrome Education International (DownsEd), and the Down Syndrome NSW site (of course) but there are many other excellent websites on Down syndrome. The Riverbend Down Syndrome Parent Support Group website is one of these. It is based in Illinois in the US and collects together a wide range of articles and abstracts of interest. The latest article added was Algebra and Problem Solving in Down Syndrome: a study with 15 teenagers by Elisabetta Monari Martinez (published in European Journal of Special Education 25(1), 13-29, 2010). But the topics of articles range from ones about early intervention, music, sports, inclusion, to medical articles, homeschooling, therapies, links and more. Not all the articles are mainstream, universally accepted research (although most are) so it allows a wide range of views to be discussed.

Another interesting website is the Down Syndrome Centre, a website from Ireland with a collection of blog entries from staff, an advisory panel and community members as well as useful articles. These range from advice on toilet training, classroom tips, to how a son learned to drive. The website has a nice positive feel.
There are many more and we'll point them out in future blogs. Let us know if you have a favourite and why.

Wednesday, 14 April 2010

Productivity Commission Inquiry: National Disability Long Term Care and Support Scheme

From the National Disability Insurance Scheme campaign:

The Productivity Commission ran advertisements in major newspapers across the country today announcing the beginning of its inquiry into a National Disability Long Term Care and Support Scheme.

In case you missed the ads, they read as follows:

The Productivity Commission invites public participation in an inquiry into a Long Term Essential Care and Support Scheme including:
  • how it would need to be designed to make a practical difference to people with disability, their families and carers

  • its costs, benefits and feasibility

  • its interaction with the health, aged care, informal care, income support and injury insurance systems

  • how to determine the people most in need of services, the services they should receive and service delivery

  • its workforce and infrastructure impacts.
To register your interest in the inquiry or obtain the full terms of reference, please contact Roberta Bausch on 02 6240 3221 or email disability-support@pc.gov.au or go to www.pc.gov.au/projects/inquiry/disability-support

The Commission also sent out its first circular with information about the consultation process. If you did not receive it, it can be downloaded at the website above.

We strongly encourage everyone to register their interest so that they can follow the progress of the inquiry and be notified of opportunities for participation – you will only get regular updates from the Commission if you register your interest.

This is your chance to have your say about what the future of people with a disability, their families and carers looks like in this country – and it is an opportunity not to be missed.

iDevices, applications - a great leap forward


Aileen Ryan from Hands Can Talk is very excited about the potential of the Apple iPad to improve on the already impressive performance of the iTouch as a communication device that can change the lives of people with disabilities who have difficulty making themselves understood with speech or sign. Her thoughts, focussing on Proloquo2Go are in this recent blog post.

The Toronto Globe and Mail reports similar thoughts from teachers and parents of children with special needs.
Proloquo2Go for the iPad

And this blog lists many applications that are either low cost or free that people with disabilities have found useful.

Scroll down to Saturday 5th June on this web page for information about a parent forum on using Proloquo2Go with people with Down syndrome, to be held by Down Syndrome NSW.

"Glee" character Becky Jackson to return in new season

Disability Scoop has published an interview with actor Lauren Potter about her role as Becky Jackson in two episodes of season 2 of the TV series Glee. The first season aired here in Australia on the TEN Network, in 2009.

Tuesday, 13 April 2010

Healthier Lives in Western Sydney: forum

A forum on strategies for improving the health of people with intellectual disabilities in Western Sydney, presented by NSW Council on Intellectual Disability and Western Sydney Intellectual Disability Support Group



Tuesday 22nd June, 2010
9 am - 3 pm


Max Webber Library
BLACKTOWN



The day is for family members and carers , people with intellectual disability, service providers

Free for people with intellectual disability
$10 family member/students
$55 service providers
(all including lunch)

Speakers

  • Dr Bob Davies, Director, Centre for Developmental Disability Health Victoria
  • Dr Helen Somerville, Adult Disability Clinic, Westmead Hospital
  • Christine Regan and Maria Heaton (parents)
  • Jann Capizzi , Clinical Nurse Consultant, Westmead Hospital
  • Chris Atkins, Clinical Nurse Consultant
  • Dr Leda Mugayar, Westmead Centre for Oral Health
    Jim Simpson, Senior Advocate, NSW CID

Contact NSW CID or WSIDSG for registration information.

Monday, 12 April 2010

Living Our Visions

Centre for Disability Studies with Pathways to Leadership Limited

Invite you to learn about Living our visions (LOV)

  • How can we find the “good life” for our loved ones with disabilities?
  • Everyone wants to be valued members of a community with employment, recreation and meaningful relationships.
  • As family members, we have been isolated in pursuit of this vision- so began LOV- Dane. Two years ago a group of families from across Dane County began meeting to share our common issues and think about what we could do collectively. Mike Green, an expert in Asset Based Community Development, has supported us to develop a strong sense of community through focused relationship building. Now, with a strong family network in place, LOV is acting together to solve our common problems.

Pathways to Leadership Limited links formal and informal networks of people with a disability, their families, and allies across Australia and internationally via training and leadership opportunities.

Presenters Amanda Bell & Stefanie Primm

Tuesday 20th April 2010

10 am – 2.30 pm (Tea & coffee available from 9.30am)

No fee …. just bring something to share for lunch

Todman Hall, Royal Rehabilitation Centre Sydney, 59 Charles Street, Ryde

RSVP: (02) 8878 0500 or email m.carrick@med.syd.edu.au

What is LOV-Dane? www.youtube.com/watch?v=87YIPY7MRTo

Download a flyer here

Remembering Baby Doe

As we wrap up our World Down Syndrome Day events, here is a very sobering reminder of why Down Syndrome International, and other advocacy organisations are actively engaged in outreach programs with a focus on the developing world, and that complacency in the developed world is a present danger.

US lawyer Mark Leach remembers Baby Doe, and the many children with Down syndrome who might never get to celebrate their own births, let alone World Down Syndrome Day. Thanks to Patricia Bauer for the link.