Mentor and coach honoured

The Wentworth Courier reported yesterday:

Special Olympics Australia has recognised Vaucluse resident Saxon Graham’s commitment to sport, giving him its annual athlete achievement award for outstanding leadership and community building. Read the full story, see Saxon's photo here ....

Library Thursdays: Toilet Training

Now that summer is here and the school year is coming to a close, we start thinking about lazy days at the beach, Christmas, holidays and...toilet training. It is a perfect time since we are often home more and can rush to the toilet more easily. The weather is warm so children can run around without their nappies and understand what is going on. The library has a few resources that can help the process.

Toilet Time Parenting Packages (Toilet Training for Young Children with Developmental Delay) (developed by Intellectual Disability Services Council in South Australia, 2004) come in two versions: Emily (for girls) and Tom (for boys). They include an information book for parents with readiness checklist and record chart, visuals (cards), star chart and a series of books for the child. Toilet Time packages can be borrowed from the library or are available for purchase from the Service SA shop.

The library also has a DVD available: Are you ready? which includes the animated film, Tom's Toileting Triumph (Tom is the same character as in the Toilet Time package) and also a film for parents.

Also available in the library is One step at a time: Toilet training a child with an intellectual disability (Continence Foundation of Australia, Victorian Branch, 2000.) and there is a section on toilet training in Steps to Independence: Teaching everyday skills to children with Special Needs by Bruce Baker and Alan J. Brightman, 2004.

Online resources:

Visual aids for learning toileting visuals

Articles on toilet training a child with Down syndrome and knowing whether they are ready:

Pressure to Toilet Train Unnecessarily by Nancy Holroyd

Toilet Training Children with Down Syndrome by Nancy Grace

Online booklet for parents with illustrations and captions for children to help with toilet training: Talk about going to the toilet by Nancy Grace

If you'd like to borrow the Toilet Time kit or any other resources from the library, or want some advice on any resources just email us or call. Our direct phone number is (02) 9941 4410. The library is staffed on Tuesdays and Thursdays. We will be closed for 2 weeks from 21st of December - 4th January.

The year at DownsEd

The wide range of work sustained internationally by Down Syndrome Education International is always interesting and much appreciated by the thousands of families and professionals who benefit from it.

CEO Frank Buckley sums up DownsEd's achievements for 2009, and looks ahead to research and practice in 2010 in his latest Frank Talk blog post.

Where would we be without them?

NSW Parliamentary Inquiry into Education of Students with a Disability

Press release the NSW Legislative Council, 3rd December 2009:

The Chair of (Legislative Council's) General Purpose Standing Committee No.2, Ms Robyn Parker MLC, has announced a new Inquiry into the provision of education to students with a disability or special needs.

“Interacting with the education system can be a frustrating and confusing experience for parents
of a child with a disability or special needs, as they attempt to ensure that their child gets
adequate support to reach their full potential”, said Ms Parker.

“An area of concern for teachers and parents alike is the adequacy of funding for children with a disability or special needs attending NSW schools. The Inquiry was established in recognition of their concerns”, Ms Parker noted.

Click here for the full ext of the press release.

From the Inquiry's web page:

The General Purpose Standing Committee No. 2 has commenced its Inquiry into the provision of education to students with a disability or special needs attending primary or secondary schools, with a particular focus on what can be learned from International and Federal approaches, and approaches in other States and Territories.

The Committee encourages public participation in the Inquiry process. Written submissions addressing the inquiry terms of reference can be emailed, faxed or mailed to the committee secretariat by the closing date, 19 February 2010.

Timeline

» Call for submissions: 9 Dec 2009
» Submissions close: 19 Feb 2010

Down Syndrome NSW will make a submission to the Inquiry, and parents and other interested members of the public are invited to make submissions.

Visit the Inquiry's web pages for details of the terms of reference of the Inquiry, of the public hearings scheduled for 22nd and 23rd March 2010, and for details on making a written submission.

Inquiry into Planning Options and Services for People Ageing with a Disability

The Australian Government's Senate Community Affairs Committee has announced an
Inquiry into Planning Options and Services for People Ageing with a Disability .

Terms of reference
Download this document (PDF 9KB)

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.

Young Carers NSW Newsletter

Young Carers supports young people (under 25) who have a role in caring for someone with an illness or disability, including siblings, who live in NSW.

The Summer 2009 Young Carers NSW Newsletter details a number of activities and programs that might be of interest and available to siblings of people with Down syndrome, including in this edition, camps, and media training. Expressions of Interest are open for an Adult Young Carer Retreat.

Access it online here, or you can subscribe to receive it by post.

Young Carers is a project of Carers NSW.

Disability Investment Group report released

On 3 December 2009 the Government released the Disability Investment Group report The Way Forward: a new disability policy framework for Australia.

Media:

• DIG Report & Panel Announced, National Disability Insurance Scheme, 3rd December, 2009
• Disability levy needs to collect $2.5b, Mark Davis, Sydney Morning Herald, December 4, 2009
• Care of disabled a `national disgrace', report finds, Stephen Lunn, The Australian, 3rd December, 2009

Joint Media Release from The Hon Jenny Macklin MP, Minister for Families, Housing, Community Services and Indigenous Affairs, and The Hon Bill Shorten MP, Parliamentary Secretary for Disabilities and Children's Services

03/12/2009

The Australian Government today released the Disability Investment Group's report commissioned as part of our commitment to set out a ten year agenda for coordinated, across-government action for Australians with disability.

The report, The Way Forward: A new disability policy framework for Australia, is an important contribution to the Australian Government's National Disability Strategy. With the number of people with a severe or profound disability predicted to rise to 2.3 million by 2030, the Government recognises the need to look at how we can better support people with disability over the long-term.

The Government has already responded to the report's primary recommendation, announcing last week that the Productivity Commission will undertake a comprehensive feasibility study into a national disability insurance scheme.

The Productivity Commission will investigate the feasibility of new approaches, including a social insurance model, for funding and delivering long-term disability care and support for people with severe or profound disabilities however they are acquired.This will include detailed modelling and analysis to determine if a long-term disability care and support scheme would be appropriate, practical, economically responsible and whether it would fit with Australia's health, aged care, income support and injury insurance systems.

The Government has also announced the appointment of John Walsh as a part-time Associate Commissioner to the Productivity Commission inquiry. Mr Walsh was instrumental in the development of the Australian Registry of Spinal Cord Injury and is a board member of the NSW Motor Accidents Authority and the NSW Home Care Service.

The Government and the Productivity Commission will also be advised by an independent panel of seven people who bring considerable experience across the disability sector, including Chair of Yooralla Bruce Bonyhady, Chair of the National People with Disabilities and Carer Council Rhonda Galbally, and Australian Medical Association President Andrew Pesce. The Productivity Commission will report to the Government in July 2011.

The Disability Investment Group was established by Community Services Minister Jenny Macklin and Parliamentary Secretary for Disabilities Bill Shorten last year to provide advice on ways to explore funding ideas from the private sector to help people with disabilities and their families access greater support and plan for the future. The report also makes recommendations on employment, housing and research. These recommendations will inform the Government's policy consideration in developing the National Disability Strategy.

The Disability Investment Group has demonstrated great commitment and insight in this significant area of public policy and the Government thanks them for their hard work and dedication to people with disability. The report and membership of the Disability Investment Group can be found The Way Forward: a new disability policy framework for Australia.

Independent panel
Bruce Bonyhady (President of Philanthropy Australia and Chair of Yooralla)
David Bowen (Chief Executive Officer of the Lifetime Care and Support Authority in NSW)
Dr Rhonda Galbally (Chair of the National People with Disabilities and Carer Council)
Ms Robyn McKay (previously served in Senior Executive positions in the Department of Families, Housing, Community Services and Indigenous Affairs)
Dr Andrew Pesce (Federal President of the Australian Medical Association)
Ms Ann Sherry AO (former Chief Executive Officer of Westpac New Zealand and Group Executive, Westpac New Zealand and the Pacific)
Mr Ian Silk (Chief Executive of AustralianSuper)

ABC 1 tonight : Rudely Interrupted

Tonight on ABC 1, at 9.35 pm a documentary about the band, Rudely Interrupted.


Program details - click here.


Click here and here for more information

Library Thursdays: Love is in the air

The Merry Makers documentary(The Music in Me) is a popular DVD in the library and now we have a great companion book to it, Love is in the Air by Sue Williams (ABC Books, 2009.) A more complete history of the dance group is told in the book and then it is followed by profiles of many of the members, guest stars, helpers and groups that have started up after master classes with the Merry Makers. There are photos throughout the book of the performers and their families.
The history is very interesting as are the profiles. After the initial history, the chapters can be read separately as there is a bit of repetition of events being told in different contexts. The story is totally inspirational and makes you wish every person could belong to such a group. Many of the dancers profiled in the book are members of Down Syndrome NSW so you may see many that you recognise. Tonight as part of the International Day of People with Disability, the Merry Makers will perform at the Sydney Theatre in Walsh Bay.

If you'd like to borrow this book or any other library material, please email or phone us.

Merry Makers website

Music in Me website

Dance group links

International Day of People with Disability: today

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

IDPwD also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.

IDPwD brings together people with disability, community organisations, businesses, individuals and all levels of government. IDPwD unites people around the world in celebrating and acknowledging the contributions, skills and achievements of people with disability.

To see what events are being held in 2009 in your town or city, please visit the International Day of People with Disability website, and the Don't DIS my ABILITY campaign website

A good gift idea for Christmas .....

We have a few copies of Sandra Wise's book for children, Nina Rose and Her Dancing Prince available for purchase. With Christmas just a little way around the corner, think of the gift possibilities - and you will be giving twice over. Half of the purchase price will be donated to DS NSW by the author.

If you are looking for a gift for a teacher, the donation of a book to the school, or preschool library is often very welcome, and will benefit everyone throughout the year.Copies are $19.95 each (add $5.05 if you need it posted).

Please contact our librarian, Kathi Beck at library@dsansw.org.au or call our Angela at our office on 9841 4409 to order. Details of the book are here.

birth incidence of babies with DS increasing in UK, US

Frank Buckley, CEO of Down Syndrome Education International has commented on new figures published in the journal Pediatrics indicating a rising birth incidence of babies with Down syndrome by producing a clear comparative graph of statistics from the UK and the US, calling on policy makers to "take note!"

Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States is published online in Pediatrics, the journal of the American Academy of Pediatrics, (Vol. 124 No. 6 December 2009, pp. 1565-1571 ). The researchers estimated prevalence of Down syndrome among children and adolescents up to 19 years, in 10 US regions. The birth incidence increased by just over 30% from 1979 to 2003.

Relationships and Private Stuff: workshops for early 2010

Liz Dore, from Relationships and Private Stuff presents the following workshops to support people who experience barriers to forming relationships:

Relationships and Sexuality (15 - 20 years)
Wednesday 8th January 2010, Burwood 10 AM - 3 PM.

Friendships and Puberty Stuff (10-15 years)
Friday 13th January 2010, Burwood 10 AM - 3 PM.

Friendship and Dating Skills (16 - 25 years)
Fridays 15th and 22nd January 2010, Burwood 3 PM - 6PM.

Friendships and Hugs (16 - 25 year olds with moderate - severe disability)
Wednesday 20th January 2010, Burwood 11 AM - 2 PM.

Friendship and Dating Skills (18 - 25 years)
Saturdays 13th and 20th February 2010, Chatswood 10.30 AM – 1.30 PM

Friendship and Dating Skills (25+ years)
Saturdays 13th and 20th February 2010, Chatswood. 3 PM – 6PM

Note that some dates are during the school holidays - it might be a handy time to meet some new people through the workshops.

For all enquiries ring 0416 122 634 or email lizdore@bigpond.com or visit www.relationshipsandprivatestuff.com

Does your son or daughter have obstructive sleep apnoea?

Would you like to contribute to medical education?

Down Syndrome NSW has been invited to participate in a learning unit for third year medical students from the University of Western Sydney. The students will be researching the impacts of sleep apnoea on people with Down syndrome of all ages, and the impact on everyday family life.

They need to speak with families on two occasions, during March/April 2010, for some hands-on information. The interviews/meeting can take place in your home, at you convenience.

We are interested in people with DS of all ages, and from any area, whether your son or daughter has been successfully treated for sleep apnoea or not, whether you have completed formal sleep studies or not.

If you are interested in participating, please contact us on info@dsansw.org.au – initial expressions of interest can be made before the Christmas break

The Enchanted Forest - fundraiser, 2010

Kids for Life 6th Annual Ball

The Enchanted Forest
27th March 2010

Hordern Pavilion

Go to www.kidsforlife.com.au for tickets and further details.
Down Syndrome NSW will be a beneficiary in 2010.