Address details

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

Saturday, 31 May 2008

State-Commonwealth Disability Services Ministers’ Conference


Supporting People with Disability, their Families and Carers

30 May 2008

People with disabilities, their families and carers will benefit from a $1.9 billion boost in funding under a new agreement reached today at a meeting of Disability Ministers in Sydney.

State and Territory Disability Ministers agreed to deliver $900 million in funding, on top of the Australian Government’s $1 billion commitment.

This is a major step forward for Australia’s disability system, which has been hamstrung for years by buck-passing and a culture of reactive crisis management, to the detriment of those it is meant to support.

The $1.9 billion is expected to provide around 2,300 in-home support places, 2,300 supported accommodation places, 9,900 individual support packages and 10,000 much needed respite places, in a range of forms, across Australia.

While today’s agreement marks a valuable and strong first step in addressing unmet need, Ministers acknowledged more needs to be done.

All governments agreed that access to services would be provided on a case-based approach, to ensure people with disability receive appropriate services when needed.

Ministers also agreed to deliver 309 new supported accommodation places through the $100 million in capital announced by the Prime Minister on May 4th which will start to be rolled out immediately.

In total, there will be more than 24,500 places that will begin to ease the anxiety of people with disabilities, their families and carers, many of whom have been waiting too long for support.

The Australian Institute of Health and Welfare has estimated that the total unmet demand for accommodation support and respite services for people with disabilities, their families and carers is around 23,800.

Ministers also agreed to bring about improvements in the areas of advocacy, measurement of unmet need; innovative policy development, quality assurance; research and national consistency for the provision of aids and equipment.

With an emphasis on working smarter, these improvements will be outcome focussed, driven by research, informed by feedback from people with disability and carers and framed in an environment of renewed co-operation between jurisdictions.

Work will also commence on addressing the critical issue of workforce shortages facing the disability services sector across the country and Ministers also agreed that funding inequities raised by Western Australia should be addressed by Treasurers in the course of negotiating funding arrangements for the new COAG-endorsed Specific Purpose Payments.

Ministers reaffirmed their commitment to work to improve outcomes for children and adults with autism, and to continue important initiatives to provide young people with disabilities in residential aged care with more appropriate accommodation.

State and Territory Ministers will also work in partnership with the Australian Government on the development of a National Disability Strategy, which will deliver a whole-of-government, whole-of-life approach to disability planning, in consultation with people with disability, carers and other stakeholders in the disability sector. The Strategy will also seek input from groups within the disability community, such as carers, women, Indigenous Australians, migrants, and people in remote and regional Australia are also represented in policy planning.

Disability Ministers agreed that $51 million, in existing contracts with respite services, will be transferred from the Australian Government to the State and Territory Governments from 1 July 2008.
These agreements complement the existing $324 million that will be provided under the current CSTDA, which was recently extended in line with all other specific purpose payments, until 31 December 2008.

The Governments will continue to work collaboratively through the Community and Disability Services Ministers’ Conference to develop the new disability services agreement, which will be in place from 1 January 2009.

Today’s meeting made further progress on outcome measures for the disability services agreement. A further report will be provided to the next meeting of the Council of Australian Governments.
Further negotiations will continue on other aspects of the new agreement as part of the Commonwealth – State reform agenda.

Today’s successful agreements are yet another example of how Australians benefit when all governments work together.

Media Contact: Commonwealth
Minister Macklin – Jessica Walker 0430 166 633
Mr Shorten – Cath Sullivan 0448 025 042
Chair, Minister Gallagher – Angie Drake 0408 092 016

Sunday, 25 May 2008

"At Home with Down Syndrome" - a new article in the The New Atlantis

The New Atalantis is an American journal on technology and society. The current issue (Spring 2008) includes an excellent, thoughtful article by assistant editor, Caitrin Nicol, "At Home with Down Syndrome", surveying a number of recent publications by and about families. She reaches back into history to introduce her essay with the story of an Italian renaissance painting, its painter and his patron, and brings it right up to date with Roadmap to Holland. You can read an advance online copy here.

Most of the works reviewed are available to be borrowed by members from the Down Syndrome NSW library

Friday, 16 May 2008

Sydney Film Festival 2008 (4 - 8 June): Accessible Cinema

The festival includes an Accessible Cinema program following its successful introduction last year. Accessible Cinema features films about people with various disabilities. For more details about the program and individual films, click here.

Bookings are available online, or through Ticketmaster on 136 100, or at the venues. Sydney Film Festival website:

UK actor, Max Lewis, 15 has another movie role
You might have seen Max Lewis playing the role of Cate Blanchett's son in the 2006 movie Notes on a Scandal. He has won a second film role, in a thriller. Click here for an extract from his mother, Sandy Lewis's book, Living With Max, published in the UK newspaper, The Daily Mail yesterday. The book will be published in Britain on 29th May.

Wednesday, 14 May 2008

2008-2009 Federal Budget

Minister's Press Release, 13/05/2008: $822 Million to Support and Recognise Carers
Australia's carers are set to benefit from an $822 million package of measures to increase support and recognition of their vital economic and social role.The Government values their role and the contribution of carers who make enormous personal sacrifices through their selflessness and hard work. Click here for more information.

Budget Fact Sheets:
Click here for the Carers Australia Federal Budget Analysis posted to the Carers NSW website.
Click here for Australian Council for Social Services Federal Budget Analysis

Monday, 12 May 2008

Link to Video On Demand: "In My Shoes"

Following tonight's broadcast of this confronting program under the Four Corners banner,"In My Shoes" is available online, including extended interviews with the carers who spoke with such clear sighted passion in the broadcast. There is a link to the 2005 program "The Hidden Army", to which much of the current carer action can apparently be traced; and an email forum all on this page:

Sunday, 11 May 2008

"In My Shoes" - Four Corners ABC TV, Monday 12th May - Carers of people with disabilities

On Monday 12 May ABC TV’s Four Corners program, "In My Shoes" will focus on carers of people with disabilities. It will cover issues such as:

• disability funding
• lack of (appropriate) respite and supported accommodation
• rise of 'carer advocacy' in recent years

There will be an online discussion following the program where you can log on and have your say about the issues raised

See a written preview on the Four Corners website: In My Shoes, Four Corners 8.30 pm Monday 12 May, on ABC1.

This program will be repeated about 11.35 pm Tuesday 13 May; also on ABC2 at 8 am Tuesday.

Relaxation of eligibility for Carer Payment following review

Some welcome news for those carers of children and adults with complex and multiple disabilities, who have not previously met the very stringent criteria for the means-tested Carer Payment
Extract from an article by Andrew Probyn and Phillip CooreyMay 10, 2008, published by the Sydney Morning Herald, Saturday 10th May, 2008:

Sources say that from July 1 about 20,000 extra families will receive relief of
between $560 and $900 a fortnight after the Rudd Government agreed to relax the eligibility criteria for the controversial Carer Payment (Child).

The new criteria are understood to be based on how much care the child requires, rather than the existing set of medical assessments used to classify a child as profoundly disabled.

One source said the existing criteria were so ridiculous that if a child were deaf, blind, and unable to use his legs or hands, he would still not be classified as profoundly disabled because his condition does not meet three of the required medical conditions on the medical report.

As of June last year, only 3750 parents - 3 per cent of all carer payment recipients - were receiving the benefit, which was designed to provide income support to those who had little or no opportunity to work because of the demands of caring.

The Herald understands extending the benefit will cost the budget tens of millions of dollars extra but will be popularly received because parents of the disabled have been crying for help for years. Those newly eligible will also receive the Carer Allowance (Child), a supplementary fortnightly payment of

The budget could also extend the Carer Payment (Child) to those who provide short-term care of between three and six months. This follows a review of the payment instituted in March last year by the Howard government. Headed by the former senior public servant Tony Blunn, the review was inundated with more than 4000 carers and their representative groups, begging for reform of a system they said failed to meet their needs.

The article can be read in full here - the first part is about changes to the Medicare surcharge threshold.

Friday, 9 May 2008

Julie Cromer retires as our Librarian

Julie Cromer retired on 10th April, after 4 years as our Librarian, and is enjoying a month’s sojourn in Italy , before settling into life as a new grandparent from early in June.

However, Julie’s involvement with Down Syndrome NSW and people with disabilities, particularly in the Eastern Suburbs goes back much further than four years. She has been an active member of Down Syndrome NSW since its establishment in 1980 and has played many active roles as a family member and committee member.

Her daughter Ruth is now in her mid-30s, making the Cromers a pioneering family in raising her at home with her brother, attending local schools and becoming an active member of both the family and her local community. When there were no appropriate support services, Julie has often been actively involved in establishing them.

She brought the same energy to professionalism to nurturing our collection of books, journals and videos into a specialist library, appropriately housed, maintained and managed. Her promotion of the library lending has seen the number of loans grow every year.

Because of her experience as Ruth’s mother, her great good sense, and her excellent contacts she has often been a valued mentor to staff and to other families.

Julie loved the idea of the American action figure, Nancy Pearl, Action Librarian and used a combination of firmness and humour to keep borrowers (both members and staff) in line, and the library items circulating. She has been fearless in searching out the resources we need to have on hand, developing a collection which is one of the organisation’s most treasured assets.

You will still find her here from time to time, as she will do some relieving work, and we have a plan or two for her continued active involvement as a DS NSW member. She said at her farewell afternoon tea that she didn’t feel would ever really fully “retire” from DS NSW as the organisation has been like another family, and her interest in people with Down syndrome will naturally continue.

We will miss her greatly, but of course we wish her well in her new role as a granny, and in retirement. And we can only try to thank her for the quality of the work she has done here – it is inestimable.

Kathi Beck has joined the staff as our new Librarian. Kathi is a qualified librarian with experience in small libraries, and she is a mother of three, including Amy, 7, who has Down syndrome. Kathi will work in the library at 2 Harold Street North Parramatta for 2 days each week, one of which will be Thursday. You can reach her on 9683 4333 or

Thursday, 8 May 2008

Landmark United Nations Convention On Rights Of Persons With Disabilities

The United Nations Convention on the Rights of Persons with Disabilities entered into force on 3 May 2008, marking a new era in efforts to protect those rights.

The Convention, the first new human rights treaty of the twenty-first century, has been signed by 127 countries since 30 March 2007, and ratified by 24.

United Nations Secretary-General has called the Convention a powerful tool to eradicate the obstacles faced by persons with disabilities. “It is a historic moment in our quest for realization of the universal human rights for all persons, creating a fully inclusive society for all.”The Convention itself does not create any new rights. Rather, it aims to ensure that the benefits of existing rights are fully extended and guaranteed to the world’s estimated 650 million people with disabilities.

“It had been argued that persons with disabilities were covered by existing human rights treaties, but the reality was very different,” says Akiko Ito, Chief of the Secretariat of the Convention on the Rights of Persons with Disabilities and the UN Focal Point on Disability. “Persons with disabilities have routinely suffered discrimination in the job market, in schools and in receiving public services. This Convention will make sure that these people will no longer be ignored.”

By ratifying the Convention, States commit themselves to enact laws and other measures to improve disability rights, and also abolish legislation, customs and practices that discriminate against persons with disabilities.

The Convention, among the fastest ever negotiated at the United Nations and one of the fastest to enter into force, has the strong support of United Nations Member States, as well as advocacy by the global disability movement, which was instrumental in drafting the treaty.

Australia signed the convention on 30th March 2007.

For further information about the Convention and the work of the UN Department of Economic and Social Affairs, Division for Social Policy and Development, go to: A world map indicating the countries that have signed and/or ratified the Convention can be found at: