Latest news

Invitation to participate in a research project: Functional Priorities Of People With Spinal Cord Injury

You are invited to take part in a novel research study investigating priorities for recovery of functions after spinal cord injury. Media reports about "finding the cure" often focus entirely on recovery of ability to walk, however, as you know spinal cord injury affects many body systems and functions. These may range from muscle weakness or paralysis and loss of sensation causing problems with walking or lifting and holding objects to lack of control of internal organs with difficulty emptying the bladder or bowel or maintaining an erection, as well as secondary effects on quality of life from pain or spasms. To date limited research has been conducted to determine the functions that are thought to be most important to the person with the spinal cord injury.

Your feedback will be very important in helping us to understand better the functional priorities of people with spinal cord injury. The findings can help target future research to focus upon the areas that are found to be of most importance to the spinal cord injured population and hence to improve the quality of life for people with spinal cord injury.

The study wants to get 200 participants, male or female, aged 18 and over to complete an online survey. The survey can be found at: http://edu.surveygizmo.com/s3/1154496/SCI-Health-Choices

Participants can go in a draw to win an Ipad.

For any questions relating to the project please contact Charles Lo on 0410 638803, or chlo2014@uni.sydney.edu.au.

This project has been approved by the Human Research Ethics Committee at the University of Sydney, The Approval Number is 13202. If you have any concerns or complaints about the conduct of the research study you can contact The Manager, Human Ethics Administration, University of Sydney on +61 2 8627 8176 (Telephone); +61 2 8627 8177 (Facsimile) or ro.humanethics@sydney.edu.au

Spinal Cord Injuries Australia campaign to increase the NSW taxi transport subsidy scheme is continuing with the publication of an article in the Sydney Morning Herald on Saturday. Please read the article here.....

It is with great sadness that I have to report that after a long battle with illness and poor health; Monique King passed away today.

Many of you will remember the great work Monique did on the board of Spinal Cord Injuries Australia. She really had a knack for taking advocacy right into the heart of board meetings and supported the great growth in potential that the organisation is currently experiencing.

Through her passion and support we have become a better organisation.

Monique passed away without pain in the loving presence of her family.

She will be missed.

Peter Perry

Spinal Cord Injuries Australia is delighted at Julia Haraksin’s
Federal court victory against Murray Coaches on the grounds of disability discrimination

Accessibility of all forms of public transport is a national priority. While we are seeing more accessible buses in our cities and a growing number of accessible train stations the accessibility of transport between cities is often left lagging behind.

Julia Haraksin’s success has highlighted a failure in transport options for people with a disability. Through her tenacity she has mounted a case against Murray Coaches of discrimination against her owing to them not arranging an accessible bus when requested. Yesterday the Federal court announced that it upheld her case of Discrimination ruling that Murray Coaches now need to ensure that they have accessible buses throughout their fleet in line with Federal standard requirements.

“Spinal Cord Injuries Australia applauds Julia’s work and recognises that it is often through the individual effort of people with disability that the world changes for the better,” says Spinal Cord Injuries Australia CEO, Peter Perry.

It’s a shame that many companies do not recognise the needs of people with disability when making fleet purchasing choices. Many costly modifications could be prevented with proactive choices. This feeds into the general lack of access that exists in our community.

“With an ageing population, young mothers with prams and the simple needs of people with a disability, access has never been a more sensible business decision than it is now,” says Peter Perry.

Murray Coaches have already modified some of their buses thanks to Julia’s pressure. However now that the Federal court has ruled against Murray Coaches they will be required to achieve the Federal target of 80% of all coaches to be made accessible by 2017.

We celebrate the work of Julia Haraksin and her lawyers at the Public Interest Advocacy Centre and congratulate them on a great result for the community.

For further comments please contact:

Peter Perry
CEO, Spinal Cord Injuries Australia
02 9661 8855 or 0414 562 342
pperry@scia.org.au

SCIA Media Release: 15 March 2013

To read more about the case see the article in the Sydney Morning Herald.

A new national survey us being taken to share your experiences about travelling with a disability.  

At the moment there is limited information on the travelling and accommodation needs of people with disability.  Participation in this survey by people with disability is important for several reasons. 

It will provide a snapshot of your needs when staying in commercial accommodation and provide information to the tourism industry on good service.  This information will feed into a study which is being undertaken by PricewaterhouseCoopers for the Australian Government and will also support policy work around future requirements under the Disability (Access to Premises – Buildings) Standards. 

Regulations made under the Standards are due to be reviewed in 2015 and the results of this study will help inform this process. This is a really good opportunity for you to share your experiences and needs in an area that is sometimes overlooked. 

To ensure we get comprehensive and useful information the survey is detailed, however you can skip questions that aren’t relevant to you and the whole survey can be completed in around 10 minutes. 

As an added bonus and to thank you for getting involved, participants can go into a draw to win a $100 dollar gift card. 

Please note the survey is anonymous and your responses will be kept confidential.   Click here  to begin the survey.  If you need any help completing the survey, or have questions about it then please contact pwc.economics@au.pwc.com or call 02 6271 3052.

On Friday 15 March at NSW Parliament House, Labor will be hosting a forum about how to make the NSW public transport system accessible for all.

When: 9.30 for 10am to 1pm, Friday 15 March 2013
Where: Parliament of NSW, Macquarie Street, Sydney NSW 2000

There are two aims of the forum:
1.    To review and provide feedback to the NSW Government's Disability Action Plan 2012 – 2017  that was quietly released late last year and has little or no public attention given to it. 
2.    To provide a forum for public transport users, in particular people with disabilities, to talk about their experiences with public transport in Sydney and NSW more broadly. 
Labor particularly want to draw attention to action that our public transport authorities could take straight away to improve the experience of people with disabilities on our trains, buses, ferries and taxis. 
The discussion from the forum will be collated and provided to the NSW Government. 
There will be some key note addresses but Labor are also looking for individuals who would like to share their experiences of getting around Sydney and beyond on public transport.

For information about the "Transport for All" Public Forum and how to register visit: http://pennysharpe.com/transport_for_all

And further on this note SCIA have just received written confirmation that Gladys Berejiklian, NSW Minister for Transport, has requested Transport for NSW to undertake a review of incentives and subsidies which support the provision of wheelchair accessible taxis to identify how services to customers can be improved. The NSW Taxi Transport Subsidy Scheme, including the level of subsidy, will also be included in the review.

It would be great if people in NSW could attend the public meeting on March 15 as well as participate in the pending Transport for NSW's review of incentives and subsidies to share your personal information, knowledge and experience and particularly raise issues about the ineffective NSW Taxi Transport Subsidy Scheme.

Further to our news back in January 2012 reporting the Digital TV switchover in NSW and the Household Assistance Scheme available to eligible people, this is a reminder that the Southern and Central NSW, ACT & MIA will be switching over in June 2013. See the attached document for details of the regions concerned and the timetable for switchover in other areas of NSW. 

The Household Assistance Scheme is a program run by the Australian Government. It provides assistance to eligible elderly people, carers, people with disabilties and veterans to convert to digital television in circumstances where they have not converted and need help to do so. Here is a fact sheet  about the scheme and also please visit the website to find out more about the digital tv switchover program. 

11 February 2013
Joint Media Release with
Jenny Macklin MP
Minister for Families, Community Services and Indigenous Affairs
Minister for Disability Reform
and
Senator Jan McLucas
Parliamentary Secretary for Disabilities and Carers

People are being warned to beware of contact from anyone claiming to work for the Government who tries to make them pay an administration fee to access the National Disability Insurance Scheme (NDIS).

These claims are false.

There is no need for people to pay a fee to join the National Disability Insurance Scheme.

The Gillard Government is investing $1 billion to launch the first stage of the NDIS in five sites across the country from July this year.

The NDIS Launch Transition Agency will deliver the first stage of the NDIS and in the lead up to launch will communicate with many people with disability in the launch sites.

However, the Agency will not be seeking fees from anyone to participate in the scheme.

People should be very wary of anyone asking for payments for Government schemes, including the NDIS.

If people are concerned that their privacy has been breached or they have provided personal details as a result of one of these calls, they should report it to the police.

People can also report a scam and get further information at the Government’s Scamwatch website, www.scamwatch.gov.au, or call the hotline on 1300 795 995.

If you have any further enquiries about this scam email helpdesk.fraud@fahcsia.gov.au

If you want to know more about the facts of the NDIS please go to the Government’s official web site at www.ndis.gov.au

..

SCIA free app for iPhone & iPad!

The new SCIA app for iPhone and iPad is now available to download for free – just search ‘SCIA’ in the Apple App Store, or follow this link: https://itunes.apple.com/au/app/scia/id575716756?mt=8

Created in collaboration with Apps-House, the SCIA app is based on our comprehensive guide to life after a spinal cord injury ‘Back on Track’. It provides quick and convenient access to vital resources and information, including topics related to transport, finances, legal matters, employment, bladder care, assistance dogs, clothing, disability service providers, accessible places to visit and spinal cord injury news.

The app builds upon SCIA’s drive to use technology to assist people with a spinal cord injury. In March of 2012 ConnectAbility, a joint program with IT business solutions provider ASG Group, started distributing iPads to newly injured people in the Spinal Unit at Prince of Wales Hospital. The app will be preloaded onto these iPads and is available for everyone else to download for free.

At this stage, it is available on Apple devices and we hope to launch it for Android devices in the future.

There is a current proposal afoot to privatise the Prince of Wales Hospital hydrotherapy pool.  This pool provides an invaluable rehabilitative service to both in- and out-patients with spinal cord injury as well as those recovering from other serious injuries and illnesses.
 
The proposal to privatise the hydrotherapy pool has not only serious implications for the maintenance of the health, well being and independent living of public patients with severe disabilities and injuries, it will also impose a significant financial burden on people wishing to access the pool, post hospitalisation.  The full price for each pool session of $78 could well be charged.  Furthermore, people with more severe and complex disabilities or conditions (such as ventilator-dependent quadriplegia) may be denied access to hydrotherapy altogether on the grounds that they are "too disabled".  This already happens at St Luke's Hospital at Pott's Point.
 
The impetus for the privatisation of the POWH hydrotherapy pool has come from the Ministry of Health's budget cuts of approximately $35 million to this hospital alone.  In response to this threat to service provision, a rally in support of maintaining hydrotherapy services in the public hospital system will be held on Monday 21st January 2013, 12.00 noon, at Cuthill Park opposite Prince of Wales Hospital, Avoca Street Randwick.  All those who care about vital health services to people with disabilities are urged to attend.
 
You can also get involved in the following ways.

Visiting the Save POWH facebook page and website:
www.facebook.com/save.powh
http://www.saveprinceofwaleshospital.org
Or signing a petition http://www.communityrun.org/petitions/privatisation-of-prince-of-wales-hospital-randwick-nsw-hydrotherapy-services

The NSW Government is committed to a person centred disability system, one that meets the individual needs and goals of people with a disability and supports them to realise their potential.

On 6 December 2012 the NSW and Australian Governments reached agreement that fully establishes the National Disability Insurance Scheme (NDIS) across NSW from July 2018. The agreement ensures that all people with disability across NSW will have access to a scheme, based on insurance principles, that guarantees lifetime coverage for the cost of reasonable and necessary care and support.

Work towards the NDIS sits alongside the NSW Government’s disability reform initiative Stronger Together 2. In line with the NDIS and to support reforms under Stronger Together 2, new disability legislation will be developed for NSW.

To inform the development of new disability legislation, we are interested in hearing from as many people and groups as possible and welcome all contributions. There are several ways you can contribute, through either a face to face consultation session or written feedback.  Further information can be obtained from www.adhc.nsw.gov.au/dsareview.

SCIA featured on the Channel Ten news last night (14 Nov 2012) http://ten.com.au/news.htm (see "Spinal Tap" report), in relation to children with spinal cord injuries and the Better Start program. - http://www.betterstart.net.au/

Currently children with spinal cord injuries are not included in the funding for the Better Start program and Spinal Cord Injuries Australia is advocating to change this. You can get involved by reading and commenting in our Policy and Advocacy Blog - see the posts on the Better Start program: http://scia.org.au/policy-and-advocacy/policy-and-advocacy-blog

Spinal Cord Injuries Australia has been heavily involved in advocating for a lift at the Unanderra Station. Please read about the ongoing campaign here.

The aim of the Blog is to show you more actively what your Policy and Advocacy department is working on, what new policy challenges are emerging, how we will tackle them and how you can be involved.We will be posting policy topics of interest on a regular basis as well as details of the day to day policy work that we undertake. We encourage all of you to visit on a regular basis and join in the conversation.

The Living Life My Way Ambassadors and Champions Program was announced by the NSW Minister for Disability Services, Andrew Constance, on 24 April 2012.

This two-year initiative has been created to raise community awareness and understanding of the NSW Government’s reform directions for self-directed support and individualised budgets. Up to 50 people with a disability, families and carers from a range of backgrounds will each be appointed for 12 months.

The Government is looking for enthusiastic people who are passionate about person centred approaches, have experience in managing their own supports and are willing to share their experiences and inspire others.

The program is particularly looking for Aboriginal people and people from culturally and linguistically diverse backgrounds to become Ambassadors and Champions to inform and inspire their communities.

Recruitment for Ambassadors and Champions will be staged with Round 1 applications now open and closing on 28 September 2012 with appointments in early November 2012. Round 2 appointments will be in March 2013 and Round 3 in July 2013.Information on the program including how to apply is on the Ageing, Disability and Home Care website www.adhc.nsw.gov.au/personcentred

If you have any questions about the Living Life My Way Ambassadors and Champions Program please contact the Person Centred Approaches Team on 1800 605 489.

The NSW Disability Industry Innovation Awards program showcases and rewards those individuals and organisations that are out there doing things differently, thinking outside the box to progress the delivery of services and achieve results for people with a disability, their families and carers.

1. CHOICES was a finalist in the Innovation in Independent Living Award (won by TAD NSW).

2. Sheree Hurley won the Emerging Leader Award (nominated by SCIA).

3. Greg Killeen won the Distinguished Service Award.

For more details please read the Ministers Media Release. 

Also read all about Greg's success in the Southern Courier.

The Australian Government is commencing the second five year review of the Disability Standards for Accessible Public Transport 2002 (Transport Standards). Part 34 of the Transport Standards requires the Minister for Infrastructure and Transport, in consultation with the Attorney General, to review the efficiency and effectiveness of the Standards within 5 years of them taking effect.  Visit the Australian Department of Infrastructure and Transport to obtain the Terms of Reference, Issues paper and DSAPT background details. Closing date for submissions is the 26th April 2013.

The Australian Government understands that some people have higher than average energy costs in their home because they use essential medical equipment, or medically required heating/cooling, to manage their disability or medical condition.

The Essential Medical Equipment Payment, an additional part of the Household Assistance Package, will assist eligible Australians from 1 July 2012.

This payment of $140 per year will be available to people with medical needs, or their carers who:

• are covered by a Commonwealth Government concession card or a Department of Veterans' Affairs Gold or White Card; and
• use certain essential medical equipment, or have certain medical conditions that require the use of additional heating and/or cooling at home; and
• contribute to the payment of the energy account.

People must claim the Essential Medical Equipment Payment, and applications open on 18 June 2012, with payments commencing on 1 July 2012.

For further information about eligibility and how to apply for the Essential Medical Equipment Payment, go to http://www.humanservices.gov.au/customer/
services/centrelink/essential-medical-equipment-payment.

Patients at the Prince of Wales hospital in Sydney have received iPads and wireless internet under an initiative by managed service provider ASG. In conjunction with Spinal Cord Injuries Australia (SCIA), ASG has launched the ConnectAbility Program, allowing patients with spinal injuries to access entertainment and information during long hospital stays. Please read all about it in CRN Australia, ComputerWorld and an article published in the August issue of Hospital & AgedCare.

In August 2011 as part of its Disability Care and Support inquiry, The Productivity Commission released its final report with recommendations to establish a National Disability Insurance Scheme (NDIS). Recognising that essential services and supports for people with a disability are often grossly underfunded, provided on a crisis only basis and therefore quite disempowering in nature, a NDIS would address this. 

Disability organisations and all major political parties are in support of the establishment of an NDIS, however costing $13 billion a year it is yet to be funded. 

"NDIS – Every Australian Counts" is actively campaigning to promote the NDIS to ensure it stays on everyone's agenda.

As part of their action they have launched a new way for supporters to get involved by creating 1 minute videos in support of an NDIS which can be uploaded to their website.

To get involved and to find out more about their campaign please follow the links.

Eligible households across Southern and Central NSW, the ACT and the Murrumbidgee Irrigation Area are encouraged to opt in to the Australian Government's Household Assistance Scheme (HAS). HAS is available to people receiving the maximum rate of the Age Pension, Disability Support Pension or Carer Payment, or the Department of Veterans' Affairs Service Pension or Income Support Supplement who do not have access to digital TV.

For more information regarding eligibility and timeframes visit the HAS page on the Digital Ready Website (see under Govt Assistance) or call the Digital Ready Information Line on 1800 20 10 13.

Ageing, Disability and Home Care (ADHC), Department of Family and Community Services, has committed $60 million over five years through Stronger Together – Two, to provide a Supported Living Fund. The Fund will provide a total of 300 packages over the next 5 years across NSW.

The opportunity to formally register an interest in accessing a Supported Living Fund package is now open. People with a disability who are planning or considering moving to a supported living arrangement are encouraged to register with ADHC.

For more details please viist the Supported Living website - http://www.supportedliving.org.au/

The Miami Project to Cure Paralysis is currently doing a survey about sleep habits and problems associated with spinal cord injury. This is a great opportunity for people with paralysis to contribute their thoughts and experiences. The survey is at http://www.surveymonkey.com/s/sleepsurveykiosk.

was held on the 7 – 8 July 2011.

The Living Life My Way Summit Report, outlining the outcomes from the summit, has been released.  It can be accessed on the Ageing Disability and Home Care website at www.adhc.nsw.gov.au/pca.