May NDIS Donor Campaign Update # 3

Footballers and Dancers point the way

The Central Coast Mariners, 2011 A-League Football Grand Finalists can be seen on our website http://everyaustraliancounts.com.au/central-coast-mariners-say-count-me-in signing up for the NDIS.  The Mariners join the ACT Brumbies  http://everyaustraliancounts.com.au/act-brumbies-say-count-me-in-for-an-ndis-have-you/ as the current NDIS leaders as far as  the National Football codes go.  Both franchises have had a sign-up to the everyaustraliancounts campaign for the NDIS at training.  Meanwhile when it comes to the more refined arts everyaustraliancounts will not be outdone.  NDIS campaigners http://everyaustraliancounts.com.au/smashing-records-and-stereotypes/ helped the Queensland ballet set a new world record for the biggest ballet class ever.

The Campaign team is finding ways to raise the profile of the campaign and the need for an NDIS – but we need help.  If you or your organisation have an affiliation with a sporting club, a cultural or service organisation or an iconic individual and they would like to ‘sign-up’ for the everyaustraliancounts campaign - we will celebrate their support on our webpage. Call your State coordinator for more information

Merchandise - Use it or lose it

We have just received 55,000 postcards in the NSW office.  If you are in need of more materials, please do not hesitate to contact us or your local state coordinator with a new order. Just remember the only crime when it comes to campaign material is not to distribute it - give it away, that is what it is for.  When you run out, ring your State coordinator to order more.

Lobbying

Talking to MPs is one thing, getting them to support your position is lobbying and it is more craft than art or science - there a set of skills that can be learned. The specific outcomes and learnings we need for the everyaustraliancounts campaign for an NDIS can be learned fairly easily. To help everybody we now have a toolkit available on the website http://everyaustraliancounts.com.au/talking-to-mps-about-the-ndis-tool-kit/#more-2901 for organizations and individuals who want to see their local member on behalf of the campaign. The toolkit is based on the successful training module developed by State Coordinator, Fiona in Queensland which had been built on by the other Coordinators.  Remember drop you state coordinator a line by email or call before and after the meeting and get a ‘sign-up’ photo if you can.

John Della Bosca

WARRINGAH DISABILITY NEWSLETTER No 256 - 27/05/11 and No 255 - 12/05/11

Hello!

The newsletter (two of them actually) starts with competitions in art, writing and film, followed by an invitation to undertake drama or dance or social activities, and watch the Merry Makers.  Young carers can apply to sail the Endeavour, attend a siblings camp, or win headphones and CDs.  Carers can attend sessions on dementia, parenting adolescents, or enjoy activities run by Bradfield Park.  Parents and carers in Mosman and surrounds are invited to a consultation by the Council to discuss parent support.

Financial matters include the carer allowance, Medicare dental scheme, Quantum online shop and AGL grants for organisations providing short term accommodation.  There are also two vehicles and a shower trolley for sale, and a job as paid bus driver.  Resources include the correct phone number for Parent Line, location change for Fragile X Association of Australia, useful Centrelink Numbers, 2011 updates on the booklets about Leisure and Services for Children aged 0-6, and the opportunity to download or access the story ‘Feathers for Phoebe’.  You are invited to sign at the Every Australian Counts campaign website, nominate for the National Disability Awards, or volunteer at Riding for the Disabled Association.

Workshops address upgrading computer skills, parenting, selecting software for your service, training as an ABCD facilitator.  There are also a Social Role Valorisation conference, the extensive behaviour intervention and support workshops by ADHC and other services, several education expos for both students and services, as well as training by Northside Community Forum, and the Northern Beaches HACC meeting.

Your comments and suggestions are welcome, as always!  The next newsletter will be sent on 9 June.

Regards, Marjorie Janz, Disability Information Officer, Warringah Council.

Located at Dee Why Library, Pittwater Road and St Davids Avenue, Dee Why NSW 2099.

Phone 9942 2686, fax 9942 2371.  Also janzm@warringah.nsw.gov.au.  

NSW govt to get behind NDIS

From the Sydney Morning Herald

http://news.smh.com.au/breaking-news-national/nsw-govt-to-get-behind-ndis-20110526-1f5fo.html

Eoin Blackwell

May 26, 2011 - 12:24PM

The NSW government says it will aggressively get behind a proposed National Disability Insurance Scheme (NDIS) and wants the initiative to be trialled in the Hunter Valley region.

Disability services minister Andrew Constance on Thursday said the coalition supported a national overhaul of disability insurance, which would cover the cost of care and medical treatment for people with a disability.

The Productivity Commission in February released a report proposing the overhaul of disability insurance in Australia.

Advertisement: Story continues below

"We give in principal support for the implementation of a national scheme," Mr Constance told reporters on Thursday.

"We have to be honest about this. The state system is broken. It isn't meeting the needs of families, carers and people with disability across this state."

Mr Constance said the Hunter region would be the most appropriate place to trial an NDIS given its population size and mix of rural and metropolitan settings.

The Productivity Commission's report proposed two options for the NDIS, which it estimated would cover 360,000 people nationally.

One option is a large scheme similar to Medicare, which would cover people born with significant disability, including the cost of care and accommodation.

The second proposal is a much smaller scheme, which would cover those who sustain catastrophic injuries in accidents and build on existing state and territory systems.

The commission's report said the scheme would require at least a doubling of the $6.2 billion already spent by governments on disability care each year.

However, in April the Law Council of Australia (LCA) questioned the commission's costings and said the required funding would be more than triple the Productivity Commission's figures.

The LCA said NSW spent $38 million in 2010 supporting 390 people who had acquired severe disabilities through road accidents.

Mr Constance was joined at the press conference by former NSW disability services minister John Della Bosca, now campaign director for the NDIS.

"Andrew and I have probably had a few disagreements over the years about a range of things," Mr Della Bosca said.

"But one thing we agree on... is that we have to do something important and something major about the situation of Australians living with disability."

"This problem, while not unique to Australia, is something we don't do well as a country."

Sue O'Reilly, spokeswoman for the disability care reform group Mad as Hell, said while the current system was dysfunctional and wasteful, it was ignored by most people who think disability won't affect them.

"You can dive into the surf at Bondi and you can become a very severe quadriplegic for life," she said.

"People need to understand that we're all, every single one of us, every day, at some sort of risk of disability affecting our lives."

Earlier this week, the Victorian government offered to host the first stage of implementing a national disability insurance scheme.

© 2011 AAP

Brought to you by 

Warringah Council supports the Every Australian Counts campaign

Hello!

 Thank you for attending the recent forum to discuss the National Disability Insurance Scheme.  Your comments about the two Schemes and your personal experience added greatly to the evening, and I noticed that small groups were talking long after the forum finished.  To me, this was evidence of the importance of this topic.

Your intense interest in the subject was noticed, and last night a Mayoral Minute was offered to Council at its regular meeting.  The Council voted to:  “show its official support for the ‘Every Australian Counts’ Campaign and hence a National Disability Insurance Scheme through noting Council’s support and promoting the campaign on Council’s website”.  Warringah Council is the first council in New South Wales to host and formally support the Every Australian Counts campaign.

Already staff and residents of surrounding Local Government Areas are talking of how they can support the campaign, and we are so pleased that the groundswell is building.  At this moment, the campaign website indicates that 25,920 supporters exist.  This number will increase – and reflect the true impact of the proposal - as each of us take action and discuss the topic with friends and colleagues.  We trust that Council’s initiative leads our community to act on our commitment.   

Regards, Marjorie Janz, Disability Information Officer, Warringah Council.

Located at Dee Why Library, Pittwater Road and St Davids Avenue, Dee Why NSW 2099.

Phone 9942 2686, fax 9942 2371.  Also janzm@warringah.nsw.gov.au.

Victorian Coalition Government responds to draft report into National Disability Insurance Scheme

Monday, 23 May 2011

From the Minister for Community Services

The Victorian Coalition Government today released its submission in response to the Productivity Commission's Draft Report on Disability Care and Support.

Releasing the submission, Minister for Community Services Mary Wooldridge together with chair of the Victorian NDIS Taskforce and former Chief Executive of Yooralla Bryan Woodford, said the government welcomed the draft report and reconfirmed the Victorian Government's commitment to the development of a National Disability Insurance Scheme (NDIS).

"The Victorian Coalition Government agrees with the commission's view that the provision of disability services in Australia is 'underfunded, unfair, fragmented and inefficient'," Ms Wooldridge said.

"The Victorian Coalition Government is committed to being a driving force for the reform process and believes we can do better as a nation by delivering major reform to the disability service sector through the establishment of an NDIS.

"Our commitment to support the introduction of a National Disability Insurance Scheme was made in response to calls from people with a disability for respect, to be acknowledged as experts in their own lives and to have the same opportunities as everyone else in our community to make choices and pursue opportunities to reach their potential," Ms Wooldridge said.

Ms Wooldridge said Victoria was well placed to host the first stage of implementation of an NDIS and is keen to do so.

"As our submission describes, Victoria has 15 years experience in implementing a self-directed approach to disability services and in developing a market-based approach to their delivery and has an excellent reputation for successfully managing lifetime care and support schemes through the Transport Accident Commission and WorkSafe Victoria," Ms Wooldridge said.

"Victoria is already playing a key role in leading national work which will be important in establishing an NDIS.

"This includes the development of a common assessment tool, together with Queensland, and the development of a National Quality Framework and Standards, to apply to service providers," Ms Wooldridge said.

Ms Wooldridge said the Victorian Government's submission has benefited from the breadth of expertise and experience represented on the Victorian NDIS Implementation Taskforce, which was established in February to provide advice to the Victorian Government.

"Our submission also draws on the expertise of the Victorian Disability Advisory Council, and the experience of people with a disability, their families and carers and service providers consulted at a roundtable in April 2011," Ms Wooldridge said.

"With the benefit of this community expertise and experience, the Victorian Government's submission seeks to make a constructive contribution to the Productivity Commission's final report.

"The Premier and I would like to thank all members of the taskforce for their dedicated hard work in the preparation of our response to the draft report.

"We look forward to continuing to work with the Taskforce through the next stages of planning for, and implementing a NDIS," Ms Wooldridge said.

The Victorian Coalition Government's submission to the Productivity Commission's Draft Report on Disability Care and Support can be found here.

Govt responds to draft report into National Disability Insurance Scheme  41.41 Kb
Victorian Govt submission to the PC - Disability Care and Support 1.51 Mb

Thanks to Sue O'Reilly for this information

May NDIS Donor Campaign Update # 1

Take the Congress Challenge - Join the Campaign for the NDIS

At the recent National Disability and Carer Congress a few of you mentioned to me that you would like to receive regular updates on how the campaign is progressing.  As a result, I will email you a short update each week, please find the first update below.

The National Disability and Carer Congress held at Etihad stadium in Melbourne was a great success where the various parties of the alliance came together to find out more information about the NDIS and discuss ways of campaigning for its earliest possible implementation.

The 1000 plus delegation demonstrated the focus and solidarity of the sector as large numbers of delegates signed up to become supporters of the everyaustraliancounts campaign on the spot.  Each of the political visitors keenly observed the number of enthusiastic supporters.  This in itself is valuable as these observations one way or another will find their way back to the leadership of the parties.

Our objective continues to be to hold the Executive government and opposition to account for an early commitment to the implementation of the Productivity Commission’s final report. The Congress was given an account of the campaign strategy and the challenge to make everyaustraliancount and accomplish our objective by taking two key campaign actions.

The first action is the direct recruitment of Federal MPs as supporters of an NDIS. We do this by organising visits to MPs by people who can tell their story of living with disability and demonstrate to them in person the ways in which an NDIS is a solution to many of the problems they deal with. State NDIS coordinators are arranging training and briefing sessions for those prepared to undertake this task.

The second action is to demonstrate to the Parliament and the media that NDIS has widespread support from members of the public who are capable of and prepared to communicate that support.  You can do this by joining the campaign for the NDIS, and sharing the campaign with your friends, neighbours and colleagues at www.everyaustraliancounts.com.au. Currently, our website is growing at three times the Google benchmark, which is an outstanding result, but if we are to make the impact we are planning for, we must rapidly increase the number of supporters.

We need you to become part of a great movement that will convert our fellow Australians to our cause.  It is now the time for action, simple, straightforward action.

THINGS TO DO:

Sign up as a supporter on the website, and invite your staff, clients, friends, family and colleagues to sign up and support the cause as well – this is an important step in ensuring our second campaign action is realised.

If you are interested in receiving campaign materials (brochures, posters, postcards), please contact your local coordinator (contact details located at http://everyaustraliancounts.com.au/contact/) or Pauline George at Pauline.george@ndis.org.au or on 02 9256 3162

If you haven’t already, appoint a campaign co-coordinator within your organisation to support the campaign and spread information on the campaign through newsletters or mailouts. 

If you have appointed a campaign co-ordinator support them in the month of May with our internal sign-up day – we are asking them to encourage their co-workers to sign up to support the campaign – NDIS Petition Forms are attached. 

John DellaBosca National Campaign Director Ph: (02) 9256 3160 Fax: (02) 9256 3123 Mob: 0429 570 390 Email: John.DellaBosca@ndis.org.au Web: everyaustraliancounts.com.au Level 18, 1 Castlereagh Street Sydney NSW 2000 GPO Box 2687 Sydney NSW 2001

WARRINGAH DISABILITY NEWSLETTER No 255 - 12/05/11

Hello!

The newsletter starts with another discobility, a weekend at the Art Gallery, several performances, Paralympic talent search day / classification day, interschool football carnival. The Chatswood Social Club invites new members to join.  Carers can attend workshops on sign language, art and dreams, dementia, and support for children aged 0-6.  There is also an open day for the respite house, and mentoring for girls with a sibling having a disability.

Financial matters include grants for sexual health week, playing drawtism or having tea to fundraise, the sale of a shower trolley, and two jobs opportunities.  Resources include soft clothing, a manager’s guide to disability, tips on guarding your privacy in social networking, teacher resources for anti-discrimination, a resource for graduates with mental illness, and the expanded Parent Line.  Your participation is welcomed regarding an online gaming project, review of a drug / alcohol / gambling service, designing a poster, and walking or running for MS Australia.

Workshops address autism and schooling, suicide prevention, parenting, disability awareness, links to tertiary education, deafness and identity, Vietnamese culture, conflict resolution, mental health, texthelp skills, project management.  Forums and conferences involve the National Disability Insurance Scheme, physical health in schizophrenia, and training provided by the NCF and IFP.

Your comments and suggestions are welcome, as always!  The next newsletter will be sent on 26 May.

Regards, Marjorie Janz, Disability Information Officer, Warringah Council.

Located at Dee Why Library, Pittwater Road and St Davids Avenue, Dee Why NSW 2099.

Phone 9942 2686, fax 9942 2371.  Also janzm@warringah.nsw.gov.au.

NDIS Forum at Warringah Council chambers on 18 May, 7pm-8.30pm

Seminar on "Accommodation Models for People with Disabilities: The Past, The Present - and The Future?"

This is to advise that following an enthusiastic response to the proposed one-day seminar on future supported accommodation models for people with intellectual and developmental disabilities, the NSW Parliament House theatrette has been booked for Thurday 21 July, from 10am to 4pm. Wednesday 3rd August.

I hope this date will be convenient for as many people as possible wishing to attend.

Expressions of interest in presenting at or attending this seminar have been received from people with disabilities, academics, federal and State MPs, federal and State public servants, disability service providers and advocacy organisations, community-based groups and families of people with intellectual disabilities from Queensland, Victoria, South Australia and the ACT, as well as from NSW. (Suggestions have also been made already to stage similar seminars in Adelaide and Brisbane.)

I am pleased to advise that the NSW Minister for Disability Services, Andrew Constance MLA, has accepted an invitation to open and attend this seminar, and that Professor Christine Bigby from Latrobe University, whose recent thought-provoking article - contending that there should be "limits to consumer choice" in supported accommodation models funded under any future NDIS - has also accepted an invitation to deliver the key-note address.

This seminar is designed to provide an opportunity for an informed, stimulating and in-depth discussion between those who share Professor Bigby's concerns about the potential for re-institutionalisation under new accommodation models, such as "villages" and intentional communities; those who support or are involved in the development of such models for some people with disabilities; and those who just want to explore the latest research, evidence and arguments, for and against, before making up their minds.

Bookings
As the NSW Parliament theatrette only seats 170 people, it will be essential for anyone interested in attending to book as early as possible. Although the theatrette is relatively small, this venue has been chosen because of its central Sydney location and because the theatrette is being made available free of charge, enabling ticket prices to be kept as low as possible.

Other than for those who will be presenting at the seminar, and people with disabilities who are welcome to attend at no charge, the cost of admission will be $30 per person, which includes a buffet lunch and tea/coffee.

To secure a booking, please deposit payment directly into the bank account of Fighting Chance Australia, which is hosting this event (BSB 032 123; account number 256 045), and please also email me at fightingchancefund@gmail.com to advise how many tickets you have paid for. Any money deposited after all seats have been allocated will be returned.

Thank you for your interest in this seminar, and please onpass this email to anyone you think might be interested in attending.

Sue O'Reilly
Fighting Chance Australia

EDITORS COMMENT

Prof Christine Bigby, Head of the Postgraduate Programs in the School of Social Work and Social Policy at Melbourne's LaTrobe University, published a thought-provoking article on an online site, contending that any future National Disability Insurance Scheme "cannot afford to leave the supply of accommodation services, staff and organisational practices to consumer choice or the market alone. The scheme must regulate the type of accommodation service that can be purchased to those with the potential to facilitate required outcomes. Better still it must separate housing from support, so type or place of housing is not restricted by the degree of support a person requires." (For full article, see Limits to choice for consumers with disabilities A national disability insurance scheme must limit some choices like housing to ensure best outcomes. Christine Bigby - posted 15/4/2011)

I am not so sure I agree with all of what is proposed by Bigby.  I suggest the post is read closely and if you disagree then go along and make sure your views are heard.

My comments are included below; she says...
Should there be unrestricted choice of accommodation type in the new scheme, or as with clinical interventions should choice be mediated by the evidence base of what works? Should consumers be able to choose to use public money on accommodation choices that evidence shows obstruct rather than hamper [sic] the broader outcomes that as a society we seek for people with disabilities.
...
The proposed scheme will remove one part of the equation of poor implementation. It cannot afford to leave the supply of accommodation services, staff and organisational practices to consumer choice or the market alone. [Agreed]. The scheme must regulate the type of accommodation service that can be purchased to those with the potential to facilitate required outcomes. [Don’t agree]. Better still it must separate housing from support, so type or place of housing is not restricted by the degree of support a person requires. [Agreed]. The scheme must also ensure ongoing rigorous independent monitoring of individual outcomes against benchmarks of social inclusion and quality of life. These must be finely tuned for different consumer groups. People with severe intellectual disability will be a significant group in the new scheme. But there are also mild & moderately disabled as beneficiaries of NDIS.  They have limited bargaining power, many cannot self report, and do not always have resourceful family members or advocates alongside them. For this group, the benchmark of quality is not care alone or staff doing things for people but 'active support' to be engaged in their own everyday lives and to facilitate convivial social encounters.

The counter view, articulated passionately by my wife, is that there must be choice.  Some people will best fit in an intentional community; some will want to live alone.  Some can live in shared housing, some will want to stay in the home that they know – e.g. Sunnyfield’s congregate care Carinya & Hostel.  Some new clients will even still need those older models as the best answer for their case.

To force one person to fit in a model they don’t want is an undemocratic and bad thing.

And remember Prof Galbally makes the point that community housing sometimes means disabled people can just as easily be “shut out”.
Chris Howells

SUPPORTED LIVING

Family Advocacy is once again running teleconferences about supported living

Join other families to learn about and discuss:

• ·        What we mean by supported living and how it can happen for people with very high support needs
• ·        Stories of Australians with diverse support needs who are living in their own homes
• ·        Options for housing and support
• ·        The new Supported Living Fund
• ·        Taking the first steps toward supported living

Registration details attached

Belinda Epstein-Frisch AM

Family Advocacy

-------------------- PO Box 502 Epping NSW 1710 --------------------

Suite 305 16-18 Cambridge St Epping 2121

ph: 02 9869 0866  Freecall: 1800 620 588  Fax: 02 9869 0722

e-mail: familyadvocacy@family-advocacy.com

web: www.family-advocacy.com

National Congress delivers a powerful message

EVERY AUSTRALIAN COUNTS
5 May 2011

This week's National Disability and Carer Congress in Melbourne delivered a powerful statement of support for the National Disability Insurance Scheme (NDIS).

It attracted 1,000 people - disability service providers, people with disability, family carers and government officials - and it elicited strong and supportive statements from politicians.
Bill Shorten, Assistant Treasurer and Minister for Financial Services, opened the Congress proclaiming that "your cause is my cause" and urging unity, perseverance and discipline in driving forward the case for disability reform.


Federal Parliamentary Secretary Jan McLucas, Shadow Minister Mitch Fifield and Greens Senator-Elect Richard Di Natale all spoke supportively.


Senator Fifield said that he and the Opposition did not baulk at the additional funding for disability services proposed in the Productivity Commission's Draft Report on Disability Care and Support.


Victorian Community Services Minister Mary Wooldridge said that her government fully backed the implementation of an NDIS. She has established a taskforce to look at the implications of an NDIS for Victoria.


Chair of the State, Territory and Commonwealth disability officials group, Jim Moore, argued that there was a compelling economic case - as well as a social justice case - for an NDIS.   
Strong messages of support for the NDIS were also delivered in speeches by Simon McKeon, Australian of the Year, and David Cappo, South Australian Commissioner for Social Inclusion.
While the conference generated a mood of optimism, the introduction of an NDIS - as National NDIS Campaign Director John Della Bosca noted - is far from inevitable. It requires a focussed, widely-supported and well-funded campaign, particularly between now and the end of November, the period during which the Government will be considering the recommendations of the Productivity Commission.


To succeed, the campaign requires the support of many Australians. You can register your support for the campaign at http://everyaustraliancounts.com.au/ joining the almost 18,000 Australians who are calling for a National Disability Insurance Scheme. While there you can watch Bill Shorten's speech from the Congress.

EVERY AUSTRALIAN COUNTS

EVERY AUSTRALIAN COUNTS

The campaign to transform the funding for people we support, their family and the disability sector needs everyone’s support - NOW.  The final Productivity Commission Report goes to the Federal parliament in July and it will recommend two transformational  ideas to the Government:

1.    A National Disability Insurance Scheme (NDIS) which will provide insurance cover for all Australians who have a significant disability. The scheme would pay for long-term high quality care and support. It would also provide referrals to other services that are required, ensure the quality of services, and encourage best practice care and support; and

2.    A National Injury Insurance Scheme (NIIS) which would cover the lifetime care and support needs of people who get a catastrophic injury from an accident of any kind. This smaller scheme would be based on the motor accident compensation schemes that operate in the states and territories.

If you would like to learn more about these ideas there is a simple plain English overview of the Productivity Commission’s recommendations attached.  This campaign needs you to tell the politicians that it is time to make these changes.

To register your support for this please go to COUNT ME IN  and join the campaign.  Make sure you also pass this email along to your family and friends.  We need to send the message to Canberra in a strong and united voice.

WARRINGAH DISABILITY NEWSLETTER No 254 - 29/04/11

Hello!

The newsletter starts with recognition of Sue Larter, a leader in behavioural optometry, benefitting many with ADHD and learning disabilities.  Fun involves hip hop, soccer for children and for adults, powerchair football, sailing, boccia and acting.  Carers can attend support activities in St Leonards and Milsons Point, dementia support, parenting series in Mosman, information session for parents of young children with disability, an evening on the National Disability Insurance Scheme.  There are also job vacancies for adults with disability at Sunnyfield.

Financial matters include the sale of a shower trolley, skills for women for home and business, scholarships with MHCC and Stepping Into…, a reminder about CDSE funding from Clubs NSW, and a job opportunity.  Your participation is welcomed in an innovative fundraising by Schizophrenia Research Institute, feedback regarding the home modification services, an invitation to be artist in residency, availability of social work students for placement.

Workshops address the law, anxiety in children, writing for the web, powerchair football development, horticultural therapy.  Forums and conferences involve brain injury rehabilitation, mental health, non-profit internet connection, father inclusive practice.  The Northern Region Disability Network meets in early May.

Your comments and suggestions are welcome, as always!  The next newsletter will be sent on 13 May.

Regards, Marjorie Janz, Disability Information Officer, Warringah Council.

Located at Dee Why Library, Pittwater Road and St Davids Avenue, Dee Why NSW 2099.

Phone 9942 2686, fax 9942 2371.  Also janzm@warringah.nsw.gov.au.

Politicians receive a compelling invitation from the nation's carers

• 
  Mike Steketee
• From: The Australian
• April 30, 2011 12:00AM

BY the time Julia Gillard returns from the royal wedding, she will have a letter with a less gilt-edged invitation waiting for her. 

It is to spend a day helping care for a person with a severe disability -- to "walk in our shoes" as Sue O'Reilly and Fiona Porter, who signed the letter and who have disabled children, put it. "There are many parents of adults and children with special needs who believe that politicians, although sympathetic, do not really fully appreciate what it is like to be in our situation," they write.


If the Prime Minister is too busy on a weekday, a Saturday or Sunday would be fine, they add, since "it is of course the case that supporting a person with severe dependent disabilities is, for many tens of thousands of carers, a seven-day-a-week role".


To ensure that such an event is more than just a photo opportunity, they suggest Gillard spends at least 10 hours with a disabled person. The same letter has gone to nine other leaders and politicians with responsibilities in the area, including Wayne Swan, Tony Abbott, Julie Bishop, Joe Hockey and Bob Brown.

The campaign for proper recognition of people with disabilities and their needs has come a long way in the three years since the 2020 summit adopted as one of its "big ideas" a new, insurance-based system proposed by Bruce Bonyhady, chairman of disability service provider Yooralla.

The Rudd government referred the issue to the Productivity Commission, whose draft report in February recommended a national disability insurance scheme to replace the present "underfunded, unfair, fragmented and inefficient" system.

An NDIS would provide long-term care and support for about 360,000 Australians under 65 with permanent or very costly disabilities such as autism, Asperger's, some intellectual impairments, multiple sclerosis, congenital conditions, quadriplegia, blindness and deafness.

Rather than money, most would get an entitlement to a package of assistance, including care, transport and other physical help, therapies, aids and equipment. But there also would be an option for people to cash out their entitlement and organise their own support services.

The argument for an insurance rather than welfare approach is that it creates incentives to minimise costs, through, for example, early intervention and employment initiatives that help people become more independent -- what the commission calls spending dollars to save more dollars.

Like Medicare, every Australian would be covered against the risk of a significant disability but it would come at a cost, estimated by the commission at $6.3 billion a year, which is twice the funding now provided by state and federal governments.

It suggests the money come from the federal budget rather than a specific tax levy. That means finding savings elsewhere, raising taxes or both.

The commission more often brings down reports suggesting how governments can operate more efficiently rather than splashing around large amounts of money. But it says funding the scheme is "manageable, taking into account a wealthy and growing economy" and that the present system, with rapidly rising costs, is unsustainable.

The extra funding would represent about 1.8 per cent of total federal government spending. The report's most telling argument is that this is an area that should be one of the government's core responsibilities: "It should be noted that, were government to be starting with a blank slate in determining its funding priorities, there would be a strong rationale for provision of disability services to be one of its highest spending priorities."

Despite the government's in-principle support for a new approach, people with disabilities and their carers and supporters are concerned about the issue losing traction in Canberra. There are any number of challenging issues jostling for attention and Gillard is being urged not to make Kevin Rudd's mistake of fighting on too many fronts. Inevitably, too, there is concern about the cost, although none of it would fall within the present budget cycle, with its preoccupation on returning to surplus.

Doubts about Gillard's commitment increased when she failed to include anyone with responsibility for disabilities in her initial announcement of the new ministry after the election. In the revised list she gave the job to parliamentary secretary Jan McLucas. Since then, there has been talk of Gillard and Swan wanting to "manage expectations" -- political speak for lowering them.

In one sense, this is understandable: the commission still has to produce its final report (by July 31), although it is unlikely to change its main recommendations. A change as big as it is suggesting will take time to introduce: the draft report suggests starting the scheme in 2014 in one part of Australia to allow finetuning and fully phasing it in between 2015 and 2018.

The commission's preferred model involves the states and territories ceding responsibilities to the commonwealth, inevitably meaning some tortuous negotiations. The Barnett government in Western Australia already is baulking at the idea, saying its own system is the best.

If Gillard and Swan would like to lower the profile of the issue, advocates of reform are intent on not letting them. They may find excuses for not accepting the "walk in our shoes" invitation but they will run the risk of appearing hard-hearted.

O'Reilly and Porter are looking at widening the idea to asking all politicians to spend a day with a person with a disability. Last year, they launched the Mad as Hell campaign that collected 20,000 signatures from voters pledging to support only parties committed to an NDIS. They are prepared to go further in the next federal election and set up a party to run candidates in marginal seats to direct preferences to whoever commits to including an NDIS in the next budget.

If one thing is clear, it is that this is an issue that will not fade away. On Monday, Bill Shorten, who as parliamentary secretary for disabilities was a vocal advocate for reform and is now Assistant Treasurer, will give the opening address to the National Disability and Carer Conference, which has attracted more than 800 registrations. Whatever reservations Swan and others have, Shorten, together with Community Services Minister Jenny Macklin, remain enthusiasts for an NDIS.

Many in the opposition are sounding even keener. After the last election, the Liberals' Mitch Fifield successfully argued to Tony Abbott that the portfolio should be elevated from parliamentary secretary to ministerial status and that he should stay in the job. "Our starting point is that we recognise that the current system is bust," he tells Inquirer. "We will give the most generous consideration to the Productivity Commission's final report . . . I don't baulk at the cost."

In a rare event under the Abbott opposition, Fifield is offering bipartisanship. The NSW and Victorian Coalition governments are strong supporters, with the Baillieu government having set up an NDIS implementation unit and offering to trial the scheme.

O'Reilly and Porter drew their inspiration for their latest initiative from the new Liberal MP for the Sydney federal seat of Hughes, Craig Kelly, who told parliament in his first speech last November that, as the father of a 14-year-old son with Down syndrome and autism who does not speak, he wanted to tell parents with a special needs child "that you have someone who stands on the floor of this parliament that walks in your shoes".

He added: "As a society we ask our carers to provide over one billion hours of unpaid work a year which, if we the taxpayers had to pick up the tab, would cost well over $30bn. Simply, as a society, we are asking our carers to do more than their fair share of the heavy lifting."