Our priorities for 2015

With 2015 now well and truly underway, I thought now is the perfect time to share with you MS Australia’s priorities for the year.

These set of objectives were developed with dialogue from our National Advocates and are supported by our MSA Board of Directors. It is agreed that focusing on three particular issues will include:

Early intervention in an MS diagnosis

It is well recognised that early intervention means providing specialist intervention and support services for those who need them early in the development of an issue. There is strong evidence in support for timely and targeted funded support: as early as possible after an MS diagnosis. In light of this, we are advocating for a consistent approach to the identification of people with MS, best placed to receive early intervention support funding by the NDIS.

Aged Care / Disability Care interface

MS Australia is aware that people with disability aged below 65 are able to receive NDIS support, however those over 65 are not. They have a choice to either remain with NDIS or switch to the aged care sector. Once they enter the aged care system, they are unable to access the NDIS. We believe this is an area of concern as those over 65 with MS have a range of needs above and beyond those in the aged care system. MS Australia will advocate for people being able to access whichever support system that best meets their needs, whether that be the NDIS and aged care. We will also bring to attention that the aged care system needs to be reviewed and adapted to specifically address the needs of those with MS, coupled with funding and specialist services for those over 65 with multiple sclerosis.

Young people in residential care

There are over 6,000 young people in residential aged care in Australia and they should have access to age appropriate accommodation. The NDIS promises to offer individual support package to people living in residential care, but there is a critical shortage of age appropriate places. We will be advocating for the need of funding to support a program for age appropriate care pathways, including improved respite options and permanent accommodation and support with a focus on Young People in Residential Aged Care (YPIRAC). Funding to support young people who remain in aged care accommodation is another objective, as well as a system for monitoring the capacity of providers offering age appropriate accommodation.

Throughout the coming months I will keep you updated with your advocacy efforts and how we are tracking along. I look forward to sharing our 2015 journey with you and making a difference to the lives of those we advocate for.

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Reflecting on a great year for MS Australia

2014 is coming to a rapid end and what a year it has been for MS Australia.

Early this year we shared with you our official National Position Statements. These reflect key issues of importance to the MS community and have been used to drive our direction throughout this year.


The year commenced with a newly appointed Board Chair for MS Australia, Mr David Barnes AM, former Board Chair of MSWA was elected after the conclusion of Mr Rob Hubbard’s term as MSA Board Chair.


Mr David Barnes

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Mr Rob Hubbard

We marked World MS Day in May with numerous events around the country raising funds and awareness about living with multiple sclerosis. MS Australia marked the occasion with a morning tea at Parliament House with the Parliamentary Friends of MS – pushing for more support for people with MS. A highlight of the event included the announcement of a new Co-Chair, Liberal Senator David Bushby from Tasmania.

Advocates had the opportunity to speak with members of Parliament and Senator Lundy addresses the event.

Advocates had the opportunity to speak with members of Parliament and Senator Lundy addresses the event.

2014 saw the welcoming of our new National Advocates Coordinator, Andrew Potter. Over the past several months, Andrew has done an outstanding job at providing leadership and management for the National Advocates group, ensuring the ongoing success and growth of the Program. Andrew is highly respected by his colleagues and national Advocates. He has taken on the role with an energy and enthusiasm that we all feel and admire.

MS Day. Senator Kate Lundy and Sen David Bushby and other politicians meet with MS sufferers and carers. 27 May 2014 Parliament House Canberra. Image David Foote-AUSPIC

Andrew Potter at Parliament House

The Federal Government’s Budget, announced in May, had key elements impacting those affected by MS. The introduction of the NDIS has been strongly supported from MS Australia. The Disability Support Pension (DSP), however, is a key issue of concern. MS Australia has taken a strong stand against the plan for people under 35 who access the DSP to complete periodic medial assessment to determine their eligibility for the scheme.

Through our advocacy efforts, our position that was opposed to the introduction of the Medicare co-payment was promoted. Such additional costs make it harder for people affected by MS to receive rebates for high out-of-pocket costs which poses barriers and challenges to a timely diagnosis and receiving appropriate medicines. We have recently called on the Federal Government to protect people living with MS in light of changes to the co-payment proposal, which does not exempt those with chronic conditions.

At MSA we continue to be vigilant in our advocacy initiatives, with various meetings with politicians and key decision makers to ensure the voice of 23,000 Australians with MS is heard.


National Advocates at Parliament House

MS Australia wrote letters to all Federal Members of Parliament (252 in total) highlighting our concerns about the 2014-15 Budget and how it may impact those living with MS. We were delighted to receive many encouraging responses from politicians, to which some have indicated they will take up the issues we have raised. The annual National Advocates Conference in Canberra late this year which was a productive session for all involved. The Advocates agreed on future priorities and opportunities for advocacy and campaigning. They also had the chance to meet with key decision makers and have arranged separate meetings to further discuss issues affecting those with MS.


Jenny Wallis, Suzanne Hadley and Lynne Smith at Parliament House

Last but not least, MSA was proud to announce winners of the John Studdy Award, MS Australia’s highest accolade. The deserving couple, Katrina and Mike Hemingway have been strong supporters and advocates of MSA for many years. Among their many fundraising and awareness activities, they recently walked across England raising more than $230,000 to fund the fight towards a cure.


Katrina and Mike Hemingway

Finally, with great pride, I take the opportunity to thank the incredible team at MS Australia, whom I work with. It is timely to acknowledge each of you for your hard work throughout the year and recognise all that has been delivered to meet the annual performance goals to support of those people around the country affected by multiple sclerosis.

Whatever celebrations you and your family partake in, the team at MS Australia and I wish you a happy and safe holiday period. We look forward to another great year in 2015 and making a difference to the lives of those we advocate for.

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Our Advocates are our best advocates

National advocacy is our core function here at MS Australia and I’m proud to be coordinating the National Advocates Program. In late October, MS Australia held the annual National Advocates Conference in Canberra. All Advocates from across the country came together for the two day event to discuss key priorities for those with Multiple Sclerosis. Importantly, they got to meet with key policy makers to profile issues currently facing more than 23,000 Australians living with MS.

All National Advocates are volunteers who have MS, or care for someone who does. They know first-hand the challenges of living with MS and it can be powerful meeting with politicians and policy makers and sharing these perspectives.


I’m very pleased to say the conference was a success, with participants honing their advocacy and campaign skills in a workshop delivered by political adviser, John Whelan. Furthering their skills, a media workshop was delivered from MSA Communications Manager Lee Davelaar, preparing Advocates for media interviews. Three industry guest speakers also attended to provide insight into what makes a successful advocacy campaign. We concluded the first day with a productive brainstorm and discussion. The Advocates agreed on future priorities and opportunities for advocacy and campaigning. These priorities include aged care/ disability care age cut off at 65, young people in nursing homes and early intervention. In addition to these priorities, the National Advocates group also identified the following two opportunities for specific advocacy campaigns in 2015:

  1. Discrimination in tax on people with a disability (particularly people with MS who have a reduced, or no, capacity to work and are reliant on a superannuation pension)
  2. The impact of the removal of block funding for NDIS Tier 2 services


A highlight of the conference was the Parliamentary Friends of MS (PFMS) Morning Tea, held in Parliament House. The event was hosted by PFMS Co-chair, Senator Kate Lundy and was well attended by Senators, MPs, and their staff. The Advocates met key decision-makers and arranged separate meetings to further discuss issues affecting people with MS.


The Conference gave the Advocates a chance to establish and renew friendships, and cement their advocacy messaging. I’m thrilled to see what this committed team will accomplish in the upcoming year and am very much looking forward to working closely with them.


Together we will make a difference!

Andrew Potter, Guest Blogger

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Strong networks benefitting the MS community

Recently I had the privilege of attending two MS Angels events. Many of you would be aware of the MS Angels, who are groups of female business  and community leaders who all excel in their chosen fields. These dynamic executives all share a common goal of supporting MS research in Australia. Founded in 2009, there are now MS Angels groups in Sydney, Canberra, Melbourne and Brisbane. The objective of this initiative is to fund cutting-edge research, which then may go on to attract further significant funding.

The Melbourne MS Angels event on Thursday 21 August 2014 was hosted by Medibank at their Docklands office. The guest speaker was Laura McKenzie, CEO of Scale and Associate Professor Russell Dale. Scale is a female-focused angel investor network, founded in 2013. Laura inspired the audience and spoke about financial empowerment of women, women as investors and women as entrepreneurs.

Scale CEO Laura McKenzie (source: The Australian)

Scale CEO Laura McKenzie (source: The Australian)

In a previous aspect of my career I was a health practitioner, so I continue to be interested in work that will have benefits  in direct health care delivery and Dr Dale  provided an amazing talk that captivated the entire group. Dr Dale is a researcher who together with Dr Fabienne Brilot-Turville,  have had their research supported by the Melbourne MS Angels  in 2012.

Their project shows how innovative and diverse modern MS research truly is. Together they have focused on understanding early brain inflammation in children who develop MS. Exciting new findings have recently been published and Dr Dale provided an update to the group.

Dr Fabienne Brilot-Turville and Associate Professor Russell Dale at a recent Kiss Goodbye to MS event

Dr Fabienne Brilot-Turville and Associate Professor Russell Dale at a recent Kiss Goodbye to MS event

The Canberra MS Angels group held a special event to celebrate 10 years of MS Research Australia and five years of the MS Angels, on Wednesday 27 August 2014. It was hosted by Honorary MS Angel, Senator Kate Lundy at Parliament House. Senator Lundy is a truly great supporter of the MS movement and has always been generous with her time for MS Australia and the MS Angels. The guest speaker was entrepreneur, Helen Roe, founder of Orange Lantern. She spoke to the group about her bold decision to move from corporate life to running her own business. It was a pleasure for me to catch up with some previous colleagues and familiar faces from my previous time working in Canberra, who are also committed to the MS.

Senator Kate Lundy, Guest Speaker Helen Roe and Australian Opal and Olympian Lauren Jackson

Senator Kate Lundy, Guest Speaker Helen Roe and Australian Opal and Olympian Lauren Jackson

Mandy Lee, MS Research Australia’s Development and Event Manager, also spoke about MS Research Australia’s decade of achievements and the importance of MS Angels’ contribution, who have now collectively donated more than $500,000 to MS research,  since the groups first began.

It is truly invigorating to attend functions like these, as it demonstrates the strong resolve that exists in the MS community and that there are so many talented and dedicated people giving their time to join the journey  towards a cause. It is always inspiring as CEO of MS Australia to witness the energy and commitment people offer,  to so many aspects of the MS community.

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Reviewing Australia’s Welfare System

Since my last blog, just after World MS Day, I was delighted to have Andrew Potter feature as a guest blogger and would like to congratulate him on his new role as National Advocacy Coordinator. Exciting things are happening in advocacy and I am pleased to give an update on our latest efforts. We’ve been hard at work reviewing the Australian welfare system and ensuring the voice of people affected by multiple sclerosis is heard. In December last year, the Minister for Social Services (Hon. Kevin Andrews MP) commissioned a review of the welfare system to find improvements, ensuring its sustainability. An independent Reference Group was then appointed to conduct the review. Their Interim Report, ‘A New System for Better Employment and Social Outcomes’, covers four pillars of reform (http://www.dss.gov.au/our-responsibilities/review-of-australia-s-welfare-system/a-new-system-for-better-employment-and-social-outcomes-full-version-of-the-interim-report):

  • Simpler and sustainable income support system
  • Strengthening individual and family capability
  • Engaging with employers
  • Building community capacity

The Reference Group requested feedback on this report, and that is exactly what MS Australia has done. You may have seen a call out on our Facebook page a few weeks ago featuring this Interim Report and our encouragement of feedback from the MS community, either directly to the Department of Social Services or by writing to us. We’ve taken all your comments into consideration throughout the drafting process of our response to the report.


In our submission, MS Australia has highlighted and emphasised the following points:

  • A welfare system that is flexible and adapts to the needs of people with multiple sclerosis
  • The continued provision of the Disability Support Pension (DSP) to people with MS who are no longer able to maintain employment
  • The need for government, employers, unions and the health and disability sectors to work together to improve workforce participation rates
  • Objecting to periodic reassessment of people with MS currently accessing the welfare system
  • Continued support for young carers of people with MS
  • Encouragement of incentives for employers to embrace a diversified workplace
  • The need for more variety of peer support and psychological support for people with MS
  • The introduction of programs that will assist people with MS to transition into part time or flexible working arrangements including the development of policies/procedures for employers

Our submission is now with the Department of Social Services, which will go towards the Reference Group’s development of its Final Report. Thank you to everyone who provided their thoughts on this Interim Report and I look forward to updating you on the progress of the Australian Welfare System Review. Through these submissions we can raise greater awareness of the disease and keep our community top of mind for key decision makers.

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A life of advocacy

I’m delighted to be providing a guest blog post to the MS Australia CEO Blog and I’m even more delighted to be doing so as the new National Advocates Coordinator of MS Australia.

Securing this position is certainly one of my proudest moments both privately and professionally.

My family, friends and I are very close to ‘celebrating’ 25 years since my MS diagnosis…..13 September to be precise. I will no doubt cherish this day and all that has come before us because the past 25 years have certainly presented their fair share of challenges and a variety of symptoms ranging in severity.

Still, I continue to be wide-eyed, bushy-tailed and have a smile on my face.

I am privileged to be the Coordinator of a great group of folk throughout this country all living as I do, making the best of their life with MS and giving it our best shot to be effective and efficient advocates.

It’s been a little over two months in the role as National Advocates Coordinator at MS Australia so it’s probably a good time to take stock, to reflect on the position, what it means to me and to outline where we hope to take the MS Australia advocacy program in the future.


Source: Burnie Advocate

Joining MS Australia

My journey with MS Australia started long before my appointment as the National Advocates Coordinator.

It was in 2008 that I was invited by the then CEO of MS Tasmania to consider being an advocate to MS Australia. I was no stranger to the media at the time, my family and I had featured in several stories about living with MS in Tasmania, particularly what it was like to be a young person with MS (as I was back then!) and I’d also worked in sales and done some radio promotions in a past life.

I would regularly speak on issues like employment, parenthood, World MS Day and MS Tasmania services and events. I had also been a long term member of the local MS support group so it’s fair to say I was well versed in discussing MS and probably suited to the role. In the early days I was one of 20 national advocates and it was a great to touch base with so many like-minded people.

National Advocacy Program

Since becoming an advocate I am quite proud to say that along with my fellow advocates we have helped to heighten the profile of MS and its challenges, particularly in Tasmania throughout the past six years.

I have thoroughly enjoyed being kept abreast nationally and internationally of current research and development and along with new developments in treatments and managing MS.

The fact that some of our key decision makers in Parliament now have a better understanding and awareness of MS and can understand our perspective when it comes to decisions they make, makes me feel assured we all have made a positive difference for the MS community.

One example I’m particularly pleased with was the introduction of medical cooling rebates for people with MS to install air conditioners. It began with approval in NSW and last year the Tasmanian Government also came on board endorsing a rebate of $135 per annum.

It might not sound like much but it’s a great feeling to know that through our advocacy efforts we helped to raise awareness of this issue and it has resulted in people with MS having more money in the hip pocket.


Having fun at the MS photo shoot with Tasmania Advocate Jenny Wallis

Moving forward…

My main focus in this position is to provide leadership, management, and opportunities for the advocates so we can build a culture of ongoing success and growth. My view is if we can keep the advocates program strong we can continue to keep the voice fighting for people with MS across the country strong.

My role will see me further develop this program, fine tune and enhance our skill base and most importantly recruit additional advocates to join the effort.

I got involved in advocacy mainly to join the fight towards a cure for this disease.

While I’m certain this is close I also believe it is important not only for people with MS to be represented by people with MS, I see it is our shared responsibility to absolutely ensure political decision makers know the impact MS has on us all so that sound and appropriate decisions can be made that have a direct and positive impact on our future!

The MS Australia National Advocacy Conference later this year is now fast approaching and I look forward to learning more about and developing strong relationships with all our current advocates throughout the country.

PFWMS_LundywBoard (2)

With MSA Chairman David Barnes, MSA CEO Debra Cerasa, Senator Kate Lundy (chair of the Parliamentary Friends of MS) and MSA Vice Chair Ian Pennell

Special thanks

It would be remiss of me with this opportunity not to give a special mention to my wife Jane, daughters Grace and Nicola and our extended family who are all extremely proud I have gained this position.

Like many families touched by MS they too have lived alongside me during this journey and all the highs and lows.

Jane and I were only married just over a year when I was diagnosed and to know that we have been able to call on the great support of family and friends when we`ve needed them has been fantastic.

They know all too well the challenges, frustrations and compromise we have made throughout the times when MS hasn’t allowed me to be my best.

I’m sure this is the same for so many other people living with MS across the country. I am so proud to be in a position where I can support you all as well.

I have many challenges to achieve in this role and I am ready for them. People with MS deserve to be represented to the highest level possible!

So to finish…..Thank you & watch this space!

Andrew Potter

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Following on from World MS Day

May was such a fantastic period for MS Australia and our state member organisations which culminated in the brilliant World MS Day activities across the country. If I didn’t say so before, congratulations to all MS Australia staff, volunteers and of course people with MS who organised and participated in so many events.

In the wake of World MS Day we are continuing to follow up leads, meeting politicians and taking steps to ensure we maintain the momentum we obtained throughout May.

In this regard, prior to World MS Day, MS Australia issued letters to all Federal Members of Parliament (252 in total) highlighting our concerns about the 2014-15 Budget and how we predict they may impact people affected by multiple sclerosis (MS). It has been particularly pleasing to observe that not only has our message been heard, but some politicians have indicated they will take up the issues we have raised. For example, here is a letter from Senator Clive Palmer, Head of the Palmer United Party.

Senator Palmer and the Palmer United Party share some of our concerns about the Federal Budget.

Senator Palmer and the Palmer United Party share some of our concerns about the Federal Budget.

This week saw me visiting Parliament House too speak with Greens Senator Rachel Siewert. Senator Siewert has been a long term supporter of the work of MS Australia.

Be assured MS Australia will continue to maintain our focus on advocacy and together with Andrew Potter, National Advocates Coordinator and our Advocates across the country, we look forward to updating you as we continue this work on behalf of our state member organisations and the MS community.

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