Address details


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


Wednesday, 16 June 2010

The Specials: Webby Award

If you follow The Specials, you are probably aware that they won a Webby Award in the "Reality" category this year. Links on TheSpecials home page show the cast's reaction to the announcement, and their campaign videos, and this one is a very short video of them accepting the award in New York this week.


(The Webby Awards honour international excellence on the Internet: www.webbyawards.com  )

Friday, 11 June 2010

NSW State Budget 2010-2011: access to health care for people with intellectual disabilities

NSW Health Budget 2010/11 is a 31 page document, available to download here.  While people with intellectual disability are of course entitled to access all health services available to every NSW citizen, the need for specialist health care service continues to be the subject of an active campaign.  The NSW Health budget document includes this line, :

$0.5 million to support people with an intellectual disability and their carers to improve their access to health care. (p.11)
 
No details are given about where or how this money will be allocated - we are actively seeking clarification, and will get back to you as soon as we know more!

Thursday, 10 June 2010

Language and reading intervention trial - research briefing

From Frank Buckley, CEO of Down Syndrome Education International:

Come along to a free online briefing tomorrow (Thursday) or Friday to find out more about our classroom language and reading teaching intervention trial - the largest controlled intervention trial of a targeted educational intervention for children with Down syndrome. The trial is just entering its second year and we hope to start to get some preliminary results later in 2010. This briefing will describe the study, the particular teaching techniques being evaluated and the outcomes we are hoping to establish.


Last year - with £440,000 ($750,000 or €500,000) pledged by the UK Big Lottery Fund - we began largest study to date of a practical and targeted educational intervention for children with Down syndrome. The three year study is undertaking a robust evaluation of a language and reading programme designed for use in schools through a multicentre, randomised trial. Our UK research team is working on this project with partners at the Centre for Language and Reading at the University of York.

The briefings are free to access at the following times:

* Thursday 10 June at 5.00pm London time (BST): 12.00pm New York, 9.00am Los Angeles, 6.00pm Paris, 7.00pm Moscow, 9.30pm New Delhi

* Friday 11 June at 9.00am London time (BST): 10.00am Paris, 11.00am Moscow, 2.30pm New Delhi, 6.00pm Sydney

Audio is available over the Internet or via a telephone conference.

Visit our online meetings site to register for the event: http://go.downsed.org/webevents/  

(Tip: If you want to check your computer is setup in advance of the session, under the "Set Up" heading to the left click on "Event Manager" and follow the instructions.)

For further information about other research briefings visit http://go.downsed.org/?research-events-2010

Library Thursdays: Grown Man Now

Retired special education teacher, academic, writer and mother, Jane B. Schultz has written a wonderful book, Grown Man Now, (in2wit:Kingsport, Tennesse, 2008) about her life and family, which includes her son, Billy, who has Down syndrome and was born in the 50s. The family lived in the South of the United States. Dr. Schulz describes the changes during the civil rights period, especially those in special education. She was a pioneer of inclusion and the book is an interesting look into the history of special education from both the professional view and the familial view. The book looks at the various jobs and living situations Billy had--from sheltered workshops to open employment, from group homes to independent living to living with family. Dr. Schultz's honest account of the challenges, problems, joys and benefits of life and in particular life with a family member with Down syndrome, covers the important concerns of all families of people with Down syndrome in a helpful, interesting way. It clearly demonstrates the ways our life directions can be affected by all family members and that everyone has a role in the world.


I highly recommend the book for readers who love family stories. The view into 50 years of a life of a man with Down syndrome is wonderful. Both Billy and his mother are inspiring.


Related links:

Grown Man Now website

Sharing with Dr. Jane B. Schulz Blog

Onward Crispy Shoulders by Mary Hakkinen and Madonna in the Suitcase by Huberta Hellendoorn are other stories of family with adults with Down syndrome that may be of interest.
To borrow any of the books or anything else, just email or call us.

Wednesday, 9 June 2010

NSW Budget 2010-2011: $2.4 billion for ageing and disability services

Louise Hall reports in today's Sydney Morning Herald, on the NSW budget's boost to social services, "Disability and Ageing gets a 9.1 per cent rise to $2.4 billion, but the second phase of the 10-year $1.3 billion Stronger Together disability reforms are not in the forward estimates."

Media Release from Ageing, Disability and Home Care following the tabling of the 2010-2011 NSW State budget: 8 June 2010

The Keneally Government’s budget for services to people with a disability, their families and their carers and older people will eclipse $2.4 billion, up $206 million from 2009-10.

NSW Minister for Ageing and Minister for Disability Services, Peter Primrose, said the massive investment reflected Labor’s spending and policy priorities outlined in Stronger Together, the NSW Government’s 10-year plan to expand services for people with a disability.

“The 2010-11 Budget is a tangible delivery on the Keneally Government’s commitment to deliver better services and facilities for NSW’s most vulnerable members – frail elderly people and people with a disability,” Mr Primrose said.

“This year the Keneally Government has allocated a total of $2.468 billion to Ageing, Disability and Home Care, an increase of 9.1 per cent over the previous year.

“Over the past five years, the budget for ageing and disability services has increased by $710.4 million or 40.4 per cent, enabling the NSW Government to deliver services to more than 280,000 people across the state.

“This Budget represents the fifth year of the NSW Government’s historic reshaping of the sector under Stronger Together, which will deliver an extra $1.3 billion in funding over its first five years.

“This will fund continued increases in existing services, such as respite for carers of people with a disability who need a break from their caring responsibilities, therapy services for children and supported accommodation for people with disabilities who can not live at home.”

Mr Primrose said that key areas of focus and expenditure for 2010/11 included:

● $203.4 million in 2010-11 (an increase of $48.3 million over 2009-10) to fund 401 new supported accommodation places. Over the period 2006-07 to 2010-11 there will be an additional 1,370 places, with costs over the five years totalling $590 million;

● $26.2 million in 2010-11 (an increase of $2.9 million over 2009-10) to prevent young people entering nursing homes, improve the circumstances of younger people in nursing homes and develop alternative models of support for young people living in nursing homes. Over the period 2006-07 to 2010-11 $80 million will be have been spent;

● $6 million in 2010-11 to provide alternative accommodation support for people with a disability located in Boarding Houses;

● $71 million in 2010-11 (an increase of $13.3 million over 2009-10) to increase support from three days a week to four days a week (and five days for people with very high support needs) for people with a significant disability who leave school but are unable to enter the workforce. Over the period 2006-07 to 2010-11, an estimated 6,240 people will be supported via the Agency’s post school programs at a cost of $235.3 million;

● $42.4 million in 2010-11 (an increase of $4.8 million over 2009-10) for an additional 103 attendant care (intensive in-home support) places. Over the period 2006-07 to 2010-11 an additional 612 places will be provided at a cost of $120.1 million;

● $11 million in 2010-11 (an increase of $2.7 million over 2009-10) to provide intensive support packages for children and young people and their families. Over the period 2006-07 to 2010-11 an additional 1,840 packages will be provided at a cost of $31.2 million;

● $14.2 million in 2010-11 (an increase of $2.3 million over 2009-10) for additional therapy places. Over the period 2006-07 to 2010-11 therapy places will increase by 2,880 at a cost of $40.6 million;

● $34.3 million in 2010-11 (an increase of $2.4 million over 2009-10) to provide 159 new flexible respite packages. Over the period 2006-07 to 2010-11 an additional 2,243 packages will be provided at a cost of $110.7 million;

● $11 million in 2010-11 (an increase of $1.2 million over 2009-10) for day program places. An additional 780 places will be provided over the period 2006-07 to 2010-11 at a cost of $33.3 million;

● $5 million over four years ($1.5 million in 2010-11) to provide intensive assistance for 410 children and their families with managing problem behaviours, both at home and at school;

● $585.8 million in 2010/11 (an increase of $48.1 million over 2009-10) for HACC services which include domestic assistance, social support, meals, transport, case management and respite; and

● $2 million in 2010/11 (an increase of $2.0 million over 2009-10) for additional support and early intervention for autism.

Mr Primrose said that the Government had also made provision in the budget to start or ramp up trials of new services for people with a disability.

“The extra 103 attendant care packages will coincide with an expansion of a program where people self manage the services that they receive,” he said.

“This will allow people to be more independent and have input into their services – so that they get the services that they need, when they need them.

“The Keneally Government has also allocated $79.3 million in capital expenditure for this year, including $56.8 million to continue work on building or renovating existing accommodation facilities and $9.2 million to start work on new accommodation.

“In this budget we have sought to provide the additional funding needed under Stronger Together to make an impact on service levels immediately while planning for long-term, sustainable changes that will deliver a more flexible, efficient, transparent and fairer system.

“There is more that we can do – and we are doing more. The Keneally Government is providing more therapy, more accommodation, more respite and more services that people with a disability, their families and the carers need,” Mr Primrose said.

NCOSS budget analysis webcast Wednesday 9th June

NSW Council on Social Services (NCOSS) is holding a seminar on the NSW State Budget today, Wednesday 9 June at 2pm.

For those unable to attend but still interested in NCOSS analysis/response to the Budget, it will be live streamed or webcast it from 2pm if you want to watch it on your computer. Here is the weblink: www.ncoss.org.au/webcast/

Tuesday, 8 June 2010

Scrapheap Adventure: the video!

When too much Scrapheap Adventure is never enough ..... relive it on You Tube:

"Preparing for School" workshops, Newcastle and Sydney flyers

Flyers with full details are now available to download for the two Preparing for School workshops scheduled for June:

Monday, 7 June 2010

Online health lecture series for families

This online series of lectures is another generous initiative of the very proactive Down Syndrome Program at Children's Hospital Boston, and is freely available to a worldwide audience. The program is run by Dr Brian Skotko, Dr EmilyDavidson and Angela Lombardo.

Oftentimes, we find ourselves with little time during clinical visits to discuss important topics, common to so many families. With this in mind, we wanted to honor the legacy of our Program's mentor, Allen C. Crocker, by initiating a lecture series.

The Allen C. Crocker Lecture Series is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. These lectures can be viewed, for free, at  www.childrenshospital.org/downsyndrome

Some details:

* The Series will take place on the fourth Monday of each month from 7:00-8:30 p.m., unless otherwise noted. 
 
* Families can view the lectures live via simulcast by following the instructions posted on our web page.

* Families can access any of the lectures--and accompanying handouts--on our web page at any time for free.

Already, we have posted parent lectures on
  • Mental health issues for people with Down syndrome
  • Feeding and swallowing issues in infants with Down syndrome.
Over the next two years, we hope to develop an online library of resources.

Upcoming talks:
  • June 28, 2010 - Celiac and Down sydnrome by Dascha Weir, MD
  • July 26, 2010 - Nutrition and Down sydnrome  presented by Kathryn Brown, MS, RD, LDN
  • August 23, 2010 - What Your Other Children Are Thinking: Sibling Issues presented by Brian Skotko, MD, MPP and Sue Levine, MA, CSW
  • September 27, 2010 - Obstructive Sleep Apnea in Down sydnrome  presented by Dennis Rosen, MD 
  • October 25, 2010 - Toilet Training and Down sydnrome  presented by Kimberly Dunn, PNP 
  • November 15, 2010 - Down Syndrome presented by Allen C. Crocker, MD
We will post reminders nearer to each date.

Sunday, 6 June 2010

June 2010 quarterly publications

Down Syndrome NSW quarterly publications for June 2010 have been mailed to members and subscribers.


Voice is a 24 page members journal, published quarterly by Down Syndrome NSW in collaboration with Down Syndrome Victoria.  The June 2010 issue has a them of Health Matters.

After two trial issues, we invite readers' feedback via this survey that can be completed online.

To subscribe to Voice, and the DS NSW supplementary materials mailed quarterly, contact Angela Adams, on 9841 4409 or admin@dsansw.org.au



Click here to read Down Syndrome NSW News, Winter 2010 online
Click here for Speak Up!, Issue 37, Winter 2010 online







Click here for the Down Syndrome NSW Update, June 2010 e-edition




Friday, 4 June 2010

Starting School workshops for parents - Newcastle and Sydney, June

Starting School is a  workshop for parents whose children with Down syndrome are enrolling in Kindergarten in 2011 or 2012.  Two events are scheduled for this month

Saturday 26th June
Newcastle
(time and venue to be confirmed)

Wednesday 30th June
Harris Park
7.30 - 9.30 pm

Contact Judy or Lynn at DS NSW, on 9841 4401 or support@dsansw.org.au for further details.

Thursday, 3 June 2010

Library Thursdays: Through the Maze: 2010 edition

The Association for Children with a Disability NSW (ACD NSW) have published a 2010 edition of Through the Maze: Information and support for parents of children with a disability in New South Wales. It explains what is available for children with disabilities and where to access early intervention, therapy, counselling and support services, schools, special equipment, legal and financial matters, medical and health issues, accommodation, transport, recreation, advocacy and a glossary of acronyms. It covers all disability needs so many services do not apply to children with Down syndrome, but the criteria for the services is made clear.

The information from the 2008 edition has been updated and reorganised. There are new sections on: feeding and nutrition, siblings, networking, alternate therapies, toys reading resources and the future of disability services.

The world of disability services can be confusing. This publication brings together the wide range of what is out there and is a very useful reference.

We have a few copies available for loan in our library or you can access the publication online at the ACD NSW website.

If you'd like to borrow this or anything else from the library, please call or email us.

Wednesday, 2 June 2010

Special offer on glasses and frames

Elite Optical is a leading supplier of optical lenses to Optometrists across Sydney and NSW.

The Director of Elite Optical, Peter French is a friend of Down Syndrome NSW Patron, Craig Wing, and is keen to support families of children and adults with Down syndrome by offering significant discounts on glasses and frame packages.

Peter said, “I know glasses can be a significant extra cost for families of children with Down syndrome, especially where the level of astigmatism or vision impairment is high, and non-standard lenses are required. It’s important that children with Down syndrome have their eyes tested regularly (at least every 12 months is recommended) to ensure their lenses are correctly prescribed.

I know that can be an expensive business and I want to make it as affordable as possible for families to ensure their child’s prescription and glasses are kept up-to-date.”

If you are interested in receiving a special Elite Optical – Down Syndrome NSW discount card which can be used when ordering your child’s glasses and frames, please contact Priscilla at Down Syndrome NSW on 9841 4404 or Priscilla@dsansw.org.au

Note: Offer available in Australia only. Offer available to carers of children with Down syndrome and to adults with Down syndrome when purchasing frames and lens packages for the person with Down syndrome only. Full details of offer and terms and conditions will be made available upon application.


(Image: dreamstime.com)

Tuesday, 1 June 2010

Consultation with families of children with a disability: NSW Ombudsman

Do services work together to help you?
Are you getting help to support your child to live at home?
We are very interested to hear from families about:

Specialist disability services including:
• information about disability services and being taken on to receive services
• intensive family support and other family support
• respite
• early intervention
• therapy
• case management
• transition support services (transition to school, from school to work, and when leaving care to adult disability services.)
• support for carers
• physical aids and equipment
• the way specialist services work together and link to mainstream services for families and children.

Services for families in the community such as:
• child care, out-of-school hours care and vacation care
• pre-school and primary and secondary school
• health services
• public transport
• sport and recreation.

It is important that children with a disability and their families get the help they need. We will let government know what families say about the support and services they need.

Share Your Views

You can share your views in person, by telephone or by email. To participate please contact:

Christine Flynn, Project Manager Telephone: (02) 9265 0410 email: cflynn@ombo.nsw.gov.au

Linda Blue, Project Officer Telephone: (02) 9286 0950 email: lblue@ombo.nsw.gov.au



Privacy and confidentiality
What you tell us will be kept confidential by our office. Your personal information, for example, your name, will not be used in the report. Individual services will not be named – we are looking at the overall system.

Independence
The NSW Ombudsman is independent of government and community and disability services.  

Monday, 31 May 2010

Sydney Film Festival: Me Too

An award winning Spanish film about a unusual man with Down syndrome (played by Pablo Pineda), Me, Too is scheduled for screening at the Sydney Film Festival on two dates in June (Sat 12th and Mon 14th).  From the Festival's website:


Me Too, Álvaro Pastor, Antonio Naharro, Spain, 103 mins

One of the most charming romances to hit the screen this festival also confronts preconceptions about the intellectual and sexual lives of people with disabilities. After graduating, 34-year-old Daniel (played by Pablo Pineda, renowned for being the first European with Down’s Syndrome to receive a university degree) takes a job at a social services office in Seville where he falls for Nuria (Lola Dueñas), a shambolic colleague who is looking for love in all the wrong places.

Beset with challenges from the start – sniggering co-workers, academic family who’ve encouraged his ambitions but failed to educate him in matters of attraction – Daniel sets out to win Nuria who is clearly unsettled by his desire for her. Pineda and Dueñas received Best Actor and Actress awards at San Sebastien Film Festival for their wholly realised performances in this endearing debut feature.

Booking options and details are available from the SFF website: http://sff.org.au Search for the film by name under Films and Events for dates, times and venues, links to bookings.

Sunday, 30 May 2010

It Takes A Village To Help A Sister: Rachel Simon

Rachel Simon is well known for her book, Riding the Bus With My Sister, and as a contributor to Thicker Than Water. She now maintains a blog, where she recently wrote about an episode in which Beth needed some fairly urgent support with a health problem, and what she, Rachel, learned about he importance of community from it.  Read the post here.

You'll see from her blog that she has another book out, too The House on Teacher's Lane.

Friday, 28 May 2010

Disabled children face years in crisis care

The dire circumstances for some people with disabilities and their families who are in critical need, and seeking out of home care was highlighted again on the front page of this morning's Sydney Morning Herald:

Children and teenagers with disabilities have been stuck in crisis accommodation, some for more than eight years - at a cost of up to $1.5 million - because the state government has been unable to find them homes.    Read Louise Hall's report here

Healthy Adulthood: Kiama, 25th June

Healthy Adulthood

An informal dinner and discussion for parents and family carers of adolescents and adults with Down syndrome

6:30pm - 9:30pm, Friday 25th June 2010

Kiama Leagues Club
Click here for a Healthy Adulthood, Kiama, flyer

Thursday, 27 May 2010

Seminar for teachers: Newcastle, 25th June

Playing to Their Strengths
- a workshop for teachers

9:30am - 3:00pm
Friday 25th June 2010

Quality Hotel Apollo International
290 Pacific highway, Charlestown

$99 per person (DS NSW members)
$132 per person(Non members)
Includes GST, morning tea, light lunch

Library Thursdays: Down Syndrome Transition Handbook

Woodbine House has published another book in their Topics in Down Syndrome series, The Down Syndrome Transition Handbook: Charting your child's course to adulthood by Jo Ann Simons, (2010). Although it is definitely geared to the American experience, it has much to offer any family of an adolescent with Down syndrome.


The author uses her experience as a mother of a young man with Down syndrome to help others as their child moves from school to adult life. The book is detailed about things to think about and plan for throughout the transition period. It discusses using high school to start to prepare, post-secondary options, employment, housing, family and other support networks, health and emotional well-being, funding, transport, and more. Included within each chapter are stories from many parents about their experiences.
I thought it was a valuable book not only for the information but also to help families explore their feelings about the process they are all going to go through as their child becomes an adult. I especially enjoyed Simon's son's thoughts on his mother learning to let go.
There are other good books on planning for adult life, but I found this one a worthy addition to those because of its personal touches (among them is the unmailed response to a department's request for yet another assessment). Unless you find it annoying to have to skim through the bits on American requirements and systems, I would highly recommend this book for all parents of teenagers.

Other books on planning for adult life:
  • Safe and secure, Al Etmanski, PLAN, 2008.
  • Transition to Employment for Adults with Down Syndrome, Down Syndrome Issues and Information, Down Syndrome Education International, 2006.
  • What kind of a future?: Supporting young people with Down’s syndrome to lead full lives after they leave school, Foundation for People with Learning Disabilities,UK, 2007.

If you'd like to borrow any of these resources or any other in the library, just call or email us.



Wednesday, 26 May 2010

Supporting grandparents: Sunday 6th June

Informal meeting for grandparents of children with Down syndrome 0 - 6 yrs old.
  • An opportunity to get some information about Down syndrome
  • An opportunity to meet other grandparents
  • An opportunity to ask questions
Sunday 6th June 2010 
1:30pm -3:30pm
Includes afternoon tea

Down Syndrome NSW
Seminar room
80 Weston Street, Harris Park

Free

RSVP to Judy or Lynn
Phone: 9841 4401
Email: support@dsansw.org.au 

This workshop will be cancelled in the event that minimum numbers are not met

Click here for a flyer

Monday, 24 May 2010

New Minister for Ageing, Disability and Home Care

Last week's NSW Cabinet reshuffle saw a change of Ministers for Ageing, Disability and Home Care, as Paul Lynch took on new portfolios and Peter Primrose, MLC moved into the ADHC role:

Research: new studies on Alzheimer's disease and Down syndrome

Longitudinal study of ageing and Alzheimer's disease
Researchers at the University of Kentucky have been awarded a $US2.4 million grant to study ageing and Alzheimer's disease in people with Down syndrome over a five year period.  Deatials are available here.

Links between Alzheimer's disease, cataracts and Down syndrome
A team of researchers at the Boston University Medical Centre has discovered that the protein that forms plaques in the brain in Alzheimer's disease also accumulates in the eyes of people with Down syndrome. The new findings in Down syndrome show that the toxic protein, known as amyloid-β, that causes Alzheimer's pathology in the brain also leads to distinctive cataracts in the eyes. The discovery is leading the researchers to develop an innovative eye test for early detection of Alzheimer's pathology in both disorders.  
Read more here.   (Note: the comment, attributed to the corresponding author of the study, Assoc Prof. Lee Goldstein, that "People with Down syndrome develop symptoms of Alzheimer's-type dementia often by the age of 30" refers to changes in the brains of people with Down syndrome, not to the clinical appearance of Alzheimer's disease, which is not known to occur in people with Down syndrome before the age of 30.)

Sunday, 23 May 2010

My Perspective Photographic Award

The UK Down's Syndrome Association, based in London, has announced the 25 finalists in its My Perspectives  competition,  for photographs taken by people with Down syndrome, saying:

The first ever My Perspective Photographic Award has been a fantastic success with over 300 images submitted. It's been pretty tough trying to whittle the images down to our top 20, so we've picked our top 25 instead ...

The finalists' photographs can be viewed online here

FOOTBALL4ALL GALA DAY 2010

What's it all about?
Football NSW hosts an annual Football4all gala day for children and young people with special needs. The day is open to anyone involved one our special needs football programs or who are invited to attend and provides players with an opportunity to enjoy a an exciting day of football with family and friends.
With a carnival like atmosphere and at no expense to participants, players enjoy the thrill of playing small sided games against other teams as well as experiencing other activities including jumping castles, face painting, balloons, special guests and a free BBQ lunch for all participants.

The Football4all Gala Day will be held on Sunday 20 June 2010 at Glenwood. Information and entry forms are now available.

For more information contact:

Event Enquiries: Samantha on 02 8814 4456 or email samantha@footballnsw.com.au

Gala Day Entries: Kim on 02 8814 4444 or email kim@footballnsw.com.au

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