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Advocacy
Keeping Cool Campaign
31 January 2012Heat intolerance is a major issue for people with MS. One consequence is that nationally on average people with MS run their air conditioners approximately 14.5 times more than average households. This translates to spending a lot more on running air conditioners than average households. Particularly for those on low incomes this is a serious problem.
More information on this issue can be found in our Keeping Cool Survey Report – a survey of approximately 2,400 households of people with MS completed in 2009, and contains essential information and data that forms the foundation for much of the work we are doing on this issue. This was the first survey of its kind internationally.
In recognition of this need to keep cool and the cost this imposes, especially on low income households, Michael Summers of the MS Australia Policy Team has been campaigning to get assistance to help those on low incomes pay the cost of electricity to run their air conditioners.
Following successful campaigns in VIC, NSW, QLD and SA (all mainland states now have medical energy concessions or medical cooling concessions in place), campaigns are now underway by MS Australia in the ACT and Tasmania.
For the ACT Keeping Cool Campaign we have developed an ACT Discussion Paper 
and have made a Budget Submission to the ACT Treasurer. The current ACT campaign is intended to be relatively short and sharp, running for a few months in early 2012 with a view to getting this into the ACT budget for 2012-2013. This work has also been submitted to the ACT’s Targeted Assistance Panel 
which is reviewing concessions and expected to report in March 2012.
The Tasmanian campaign has been underway since August 2011 and will run until the 2012-13 budget is released. A Discussion Paper and Budget Submission have also been produced for that campaign.
For more information, please contact:
Dr Michael Summers
Senior Policy Advisor
(03) 9845 2730
michael.summers@msaustralia.org.au
Policy Issues Statement for 2011-2012
28 February 2011Our new Policy Issues Statement for 2011-2012 is being launched by the MS Australia Policy Team this week. This is our flagship product that summarises a wide range of policy issues that require action by federal and state governments and others. We are actively campaigning on these issues over the next 12 months. Key issues include:
- Employment and Workplace Flexibility
- Aids and Equipment
- Young People in Nursing Homes
- Disability Care and Support Scheme
- Universal Housing Design
- Research
- National Disability Strategy
- Health and Community Services
- Carers
- Energy Use and Climate Change
For a copy of the new Policy Issues Statement Click here
Hard copies are available from the Policy Team.
The Continuous Care Pilots
9 December 2010The Continuous Care Pilots (CCP) trialled a new model of care for people with progressive neurological conditions who are at risk of being place in a residential care facility (nursing home). Funding in each state was provided by state governments as part of the Young People in Residential Aged Care Program (YPIRAC), with additional funding from MS Australia ACT/NSW/VIC to support major evaluations of each pilot. The independent evaluations of each of the pilots found that this was a successful and important new model of care to prevent younger people with progressive neurological diseases out of nursing homes.
While there were minor differences in each pilot to cater for local conditions, essential ingredients of the new model of care included:
- Tertiary case management, including advice and support to existing client case managers
- Clinical Advisory Group including health and community care professionals to identify specific client risks, and to develop care plans to manage those risks
- Information/training/support to health and community care professionals in relation to progressive neurological illnesses, and available services
- A modest brokerage fund to provide a last-resort source of assistance for equipment and non-recurrent services
The NSW Continuous Care Pilot
The NSW Continuous Care Pilot (CCP) was set up by MS Australia ACT/NSW/VIC in conjunction with Macarthur Aged Care and Rehabilitation Services in Camden, NSW. It was funded by the NSW Department of Ageing, Disability and Home Care. The independent evaluation was undertaken by the University of New South Wales’ Disability Studies and Research Centre, and they found that ‘the CCP was an important and valuable program that provided support and assistance to all of the program clients’. For more details about this pilot and the evaluation please see the Executive Summary and the Full Report
The VIC Continuous Care Pilot
The VIC Continuous Care Pilot was set up by MS Australia ACT/NSW/VIC in conjunction with Calvary Health Care – Bethlehem. It was funded by the ‘My Future My Choice’ initiative of the Victorian Department of Human Services. The independent evaluation was undertaken by Plexus Consulting. For more details about this pilot and the evaluation please see the Combined Report.
Senate Inquiry into Consumer Access to Pharmaceutical Benefits
MS Australia has submitted to this Senate Inquiry highlighting key issues for people with MS with the
Pharmaceutical Benefits Scheme.
Productivity Commission Disability Care and Support Study
Last year the Prime Minister announced that The Productivity Commission would conduct a thorough feasibility study into the establishment of a national lifetime care and support scheme that could replace the current funding system for disability services. This study is an extremely important opportunity to examine the things that need to be improved in our systems and to move away from the underfunding and rationing of essential support services.
MS Australia will be making a detailed submission to this study highlighting the key lifetime support issues for people with MS and their families, and we would encourage people to make submissions themselves. We will provide updates about the progress of the study and advise about making submissions over the coming months.
The Commission will be putting out an initial discussion paper in May that will advise on the key information required in submission. The Commission recently put out a circular detailing the inquiry's processes and timelines.
To read the terms of Reference to the Study, go to www.pc.gov.au
Aged Care Funding Instrument Review
MS Australia has made a joint submission to this review with Brain Injury Australia and the Young People in Nursing Homes National Alliance. The Federal Department of Health and Ageing are conducting the review to improve the way that funding is calculated for a range of aged care residents. We have told the review that the funding and services to younger people in aged care is inadequate and needs major reform. Read More
MS Australia welcomes announcement of new disability standards
MS Australia has today welcomed the Federal Government’s announcement of the new Disability Standards for Access to Premises, as a major step towards equality for people living with a disability.
Alan Blackwood, Manager of Policy and Community Partnerships for MS Australia said the initiative has potential to change the lives of millions of Australians who are living with a disability or caring for a family member with a disability.
“These Standards will provide better access to public buildings for people with a disability. They represent a major advance in making buildings more accessible,” Mr Blackwood said.
“They have been a long time coming and the Government has shown its continued commitment to disability issues by establishing these comprehensive standards. They provide more certainty to people with disabilities and will establish a strong set of guidelines for the building industry.
“Poor access is a major barrier to social inclusion for people living with disabilities like multiple sclerosis (MS) and other disabilities and affects people wherever they go.
“Poor access can prevent people gaining employment, moving freely about the community and engaging with other people.”
While the new Standards will take a while to take effect, MS Australia has welcomed the clear expectation now set by the government that being inaccessible is unacceptable.
Robert Pask lives with MS and once challenged representatives on his local council to spend a day in a wheelchair to experience first hand the problems getting around his area.
“The awareness of the need for good physical access does not dawn on most people until they are affected by disability in some way,” Robert said.
“This may mean not being able to find a toilet because the entrance to the building is inaccessible. Sometimes it means getting to an appointment or a meeting and not being able to get in.
“Back then, my Councillors refused the challenge. Perhaps now access issues will be more prominent in people’s minds.”
While the standards do not cover private dwellings, MS Australia also welcomes progress on this front and is encouraged by the fact that Parliamentary Secretary Shorten has convened a National Dialogue on Universal Design that has opened the way to continue to upgrade building regulations in this area
For more information or to arrange interviews with Alan or Robert please contact:
Prue Guillaume
Public Relations and Communications Manager
MS Australia – ACT/NSW/VIC
Ph: (02) 9646 0633
Mob: 0437 139 078
Feasibility Study: Long Term Care and Support Scheme
On Monday 23rd November at the National Disability Awards dinner the Prime Minister announced a feasibility study into a national no-fault Long Term Care and Support Scheme for Australians with a disability. The study is to be undertaken by the Productivity Commission and will report back in 2011.
MSA has advocated for an insurance based approach to funding services and welcomes the Government's announcement. A long term care scheme that can provide support services on the basis of need rather than cause of disability is something that has had growing support in recent years, and if implemented would be of great benefit to people with MS and their families.
Click here to read the PM's speech and the Feasibility Study Terms of Reference.
Policy Issues Statement for 2010-2011
Our new Policy Issues Statement for 2010-2011 is being launched by the MS Australia Policy Team this week.
This is our flagship product that summarises a wide range of policy issues that require action by federal and state governments and others. We are actively campaigning on these issues over the next 12 months. Key issues include:
- Employment Participation
- Assistive Technology
- National Disability Insurance
- Universal Housing Design
- Better Support for Carers
- Improving Health and Community Services
- Energy Use and Climate Change
- MS Research
For a copy of the new Policy Issues Statement click here
Hard copies are available from the Policy Team.
Companion Card Scheme
A new National Website has recently been launched detailing the operation of the Companion Card scheme. A companion card allows 2 people to attend an participating event or use a service where one person is a cardholder, has a disability and requires a companion to access the community. The website details eligibility, participating businesses and application requirements.
Read more.
Pension Increases Introduced
The pension increases announced in the 2009 Federal Budget come into effect on the 20th September. This welcome increase will see full single Aged and Disability Support Pensions, Carer Payment and Veteran Affairs pensions increase by $32.50 per week in the base payment and $2.50 in the pension supplement.
The Carer Allowance rate remains unchanged.
There are also changes to the withdrawl rate for pensioners earnning an income. The rate of withdrawl increases from 40c to 50c in the dollar for amounts earned over $71 per week. Government modelling provided to industry body National Disability Services shows that existing single pensioners will be better off under the new pension system (and receive the full pension increase) until they earn $304 per week in private income.
Transitional arrangements for existing income earning pensioners are in place.
For more information visit Centrelink www.centrelink.gov.au or the Department of Families, Housing, Community Services and Indigenous Affairs at www.fahcsia.gov.au
Harmonisation of Disability Parking Schemes
The Federal Government is fulfilling an election commitment by introducing an initiative to harmonise the myriad of disabled parking schemes across the country. They propose that schemes will continue to be administered locally, but with common eligibility criteria, permit design and parking concessions. MS Australia has made a submission to this consultation and has largely supported the harmonisation and highlighted the key issues raised by people with MS through the process.
Click here to read the MSA submission
Click here to read the Government's original discussion paper.
MS Australia's response to the federal budget announcement
MS Australia Federal Budget and Policy Issues Statement for 2009-2010
MS Australia has sought a range of initiatives to assist people with MS and their families in its 2008 Federal Budget submission. The submission addresses 4 main themes, Research, Employment and Financial Security, Health and Lifetime Care.
The submission details specific programs that need to be supported, including:
- Increased funding for MS research
- Increased employment flexibility and support to improve job retention and job seeking for people with MS and their family caregivers
- More effort required to keep young people out of nursing homes
- Stronger community support programs
- Universal disability insurance to provide more complete and accessible lifetime care
- Strengthened aids and equipment programs
Read the Federal Budget and Policy Issues Statement.
Federal Parliamentary inquiry - Better Support for Carers. Submissions due 4th July
A new Inquiry has been announced by the House of Representatives Committee on Family, Community, Housing and Youth looking at the system of carer support in Australia. The inquiry is focusing on social and economic participation and the practical measures need to better support carers in their role. The MS Society will make a submission, however this is a great opportunity for carers and families to tell the inquiry their own ideas for improvements that come from direct experience of caring for a person with MS. Read the Inquiry Media release.
We have prepared a brief guide for families wanting to make a submitting to the inquiry. Read more.
MS Australia's response to the Discussion Paper on National Standards
Download National Employment Standards Discussion Paper
Download MS Australia's Response
MS Australia has sought a range of initiatives to assist people with MS and their families in its 2008 Federal Budget submission. The submission addresses 4 main themes, Research, Employment and Financial Security, Health and Lifetime Care.
The submission details specific programs that need to be supported. It includes:
- Better support in the workplace, including job retention programs and work based personal care.
- A range of MS research projects coordinated by MS Research Australia.
- Broader access to non PBS medications.
- Reform of the Welfare to Work regime to improve eligibility for the Disability Support Pension for people with progressive conditions.
- Improved Government coordination in the provision of respite and other lifetime care services and to implement a dedicated continuous care program for people with MS and similar conditions.
Download the Budget Submission (Executive Summary)
Download the Budget Submission (Complete Submission)
Have you got any questions about Centrelink's benefits?
People with MS and carers who are in receipt of Centrelink or family tax benefit need good information in their dealings with Centrelink and this information is not easy to find.
The National Welfare Rights Network (NWRN) has compiled a comprehensive set of fact sheets dealing with all aspects of Centrelink benefits and processes, including appeals.
Click here to be transferred to the NWRN website page that lists the available fact sheets by subject an benefit.
The NWRN is a network of services throughout Australia that provides free and independent information, advice and representation to individuals about Social Security law and its administration through Centrelink.
The NWRN consists of both specialist community legal centres and services as well as individual advocates who are based in generalist community legal centres.
NWRN member organisations are located in each capital city in Australia and in four regional centres. They are completely independent of Centrelink and all government departments.
