2014/15 has been a year of increased recognition and awareness of MND, major fundraising activities, audit and accreditation of our services and continuous testing and improvement of service delivery.
It has also been a year of government policy changes, with the National Disability Insurance Scheme and Aged Care reforms having significant impact, all of which drives change.
Global success of the Ice Bucket Challenge and local success of the Freeze at the G bookended the year. Over $390,000 invested in research. Application and influencing of the National Disability Insurance Scheme.
From the State Council
This year started with a global event and closed with a national event – both raising significant funds and developing recognition of MND in the community to a new higher level.
In August and September 2014, the Ice Bucket Challenge splashed the world, eventually raising over $US200 Million for the fight against ALS/MND. Application of those funds took many forms, with research being a major recipient. In Victoria, we invested in Assistive Technology (AT) – wheelchairs, hoists, commodes etc – to help people remain at home, optimise their independence, maintain community engagement and promote safety for carers.
In June 2015, Neale Daniher’s “Freeze at the G” brought the message home to all, with over $2.4 Million raised for research into cause, treatment and cure of MND. Subsequently, it was announced that $1.5 Million would be invested in research through the MND Research Institute of Australia.
While success was spectacular, neither of these events reduce the importance of raising funds to help MND Victoria deliver the best possible care and support for people with MND. Every day, 400 people are receiving support from the Association from assistive technology, regional advisors, information and resourcing, volunteers, ongoing advocacy for the needs of people with MND and their family, friends and colleagues.
We know that cause, treatment and cure for MND will only come from extensive research undertaken by brilliant minds. But while researchers are doing their work, our focus is on the 400 – living every day with MND.
The second year of the National Disability Insurance Scheme has brought refinements and simplicity. There is still a long way to go, but MND Victoria is nearly ready for the commencement of a national rollout on 1 July 2016. We continue to work closely with MND Australia and its members to ensure consistency and relevance of policy practice and procedure in the implementation of the NDIS. Similarly, our relationship with Victorian neurological organisations facilitates sharing of information and influencing. In Tasmania we have achieved funding for a Regional Advisor and we will have a staff member based in Launceston from the start of 2015/16. Our accreditation review against the department of Health and Human Services Disability Standards was again successful, and we are accredited for a further three years. We have lodged our application to be an approved service provider under the Disability Services Act 2006 and the NDIS.
There has been a significant increase in the number of people we are supporting, from 348 in 2004/05 to 591 in 2014/15, and at times we have struggled to maintain the level of service demanded. We are reviewing work methods and resourcing to ensure that people with MND do not experience high levels of unmet need.
Assistive technology (AT) remains a core service – delivering key items to maintain independence, mobility and safety. We are constantly reviewing new and better AT responses, and investing in more equipment.
We continue to raise about 75% of our income from fundraising activities, and we thank all those who have given donations, run events or participated in them.
State Council maintains its role of providing effective governance and its focus on directing an organisation which its members need and want. We all maintain our focus on people living with MND. During the year, Council member Fr Geoff King died from MND – his input and energy will be missed. Mavis Gallienne AO retired after being with the Association nearly from its inception in 1981. She has been an outstanding guide and mentor to Council and Staff, and we wish her well in her retirement.
We had 182 newly diagnosed people join the Association, and we are sad to advise that 148 people died during the year. Our thoughts are of them, and with their families and friends.
We commend the 2015 Annual Review to you as an overview of our work in the fight against MND.
STATE COUNCIL (as at 30 June 2015)
Eric Mayne – Chairman *
David Lamperd – Vice Chairman *
Hugh Parkes – Treasurer
Duncan Bayly *
Katherine Barnett *
Andrew Marshall *
* have a personal association with MND
Our Core Values
Our service is to people living with MND, above all else. We do not undertake anything that does not contribute, or has potential to contribute, to improving quality of life for people living with MND.
We respect and value the contribution made by each and every member of the MND community and give full consideration to their contribution
We support, encourage and value innovation that improves opportunity and quality of outcomes. We share absolute integrity and are ethical in our practices.
- To provide the best possible support for people living with MND.
- To develop and maintain relations with MND Associations within Australia and overseas.
- To collect and share quality advice on living with MND.
- To advocate, foster and maintain links that can help us achieve our mission.
- To create and foster links between people living with MND by providing opportunities for interaction.
- To encourage and support research initiatives and disseminate knowledge of research progress.
- To raise awareness of MND and the needs it creates.
- To achieve our mission through innovation, sustainability and best practice.
Supported 591 people living with MND during the year. Review of policy, procedure and practice resulted in accreditation for the NDIS and Disability Act (Vic) 2006. Organised and participated in the MND Australia National Conference. New Regional Advisor recruited to be based in Launceston, Tasmania.
The three key services provided by Family Support Services (FSS) – Information, Regional Advisors and Resourcing and Equipment - are the major components in the Association’s support for people living with MND, their families, friends, colleagues and health professionals.
Care and support is offered by providing information and advice that is individualised and personalised, practical assistance through provision of equipment and referrals, and personal support; this includes advising on sources of care packages and funds. Our goal is to assist people to live better for longer while fighting MND. People with MND who register as a client of MND Victoria are able to access any of our services and supports.
The FSS team has grown to 16 people, with 7 full time and 9 part time positions. This includes seven Regional Advisors working in defined but flexible geographic areas across Victoria, and one in Tasmania. Raising awareness, identifying and referring to services and supports, advocating for people living with MND and delivering training and education opportunities for health professionals and carers is also an essential part of their role. To ensure the well-being and health of our Regional Advisors and enhance advisor practice, we provide regular group and individual supervision facilitated by a qualified counsellor.
Recruitment for a permanent Regional Advisor position to be based in Launceston was successfully concluded during the year, and a new Regional Advisor appointed to commence in July 2015. This is a significant step forward, and takes over from the fly-in fly-out service model previously in place.
We retained our accreditation as a service provider for the National Disability Insurance Scheme and to deliver disability services on behalf of the Department of Health and Human Services in Victoria. Accreditation ensures that we have in place and in action policy, procedures and practice that supports the highest quality of service delivery.
All staff attended the National Family Support Services Meeting and National MND Conference at the Gold Coast where we were able to share our service models, skills and development with other State MND Associations, health professionals and researchers. The Manager Family Support Services also attended the International Alliance of ALS/MND Associations meeting and International Symposium in Brussels, Belgium in December 2014. She provided valuable feedback to her colleagues and State Council on her return.
The annual client survey was forwarded to all clients in June 2015 and has achieved a response rate of over 30%. Early analysis indicates a high rating of our work as either good or excellent by over 95% of respondents. High value is placed on the Regional Advisor and Equipment services, the availability of the Association and its resources when needed, the quality and breadth of information, and receiving support.
Respondents find our services to be timely and appropriate, supportive and respectful.
We encourage feedback at all times – hearing what we can improve, change, or add to our service model allows us to raise the quality of our services and support, and ensure that we remain relevant to people living with MND.
|Registered as at 30 June||362||382|
|People newly diagnosed with MND during the year||201||182|
|Deaths of People with MND reported||125||148|
|People living with MND supported during the year||496||544|
|Registered as at 30 June||24||37|
|People newly diagnosed with MND during the year||11||23|
|Deaths of People with MND reported||22||11|
|People living with MND supported during the year||46||47|
Thank you all for the help and comfort you have given us over the last 18 months
Delivered 10,597 hours of support and 1,129 face to face visits for people with MND. Effective implementation of NDIA in Barwon and preparation for state wide implementation underway. Participated in the Calvary Health Care Bethlehem, Bundoora Extended Care Clinic and Belmont MND clinics. New Regional Advisor position created and filled in the Barwon region.
A continuing high level of referrals of people newly diagnosed has maintained the pressure on the Regional Advisor Service to make initial contact, provide individualised and personalised information, identify existing and emerging care and support needs, and to make appropriate referrals.
As at 30 June 2015, Regional Advisors were working with 382 people with MND in Victoria and border regions, and a further 37 in Tasmania. During the year, they worked with 544 people in Victoria, and a further 47 in Tasmania.
During the year, it was decided that the support for people with MND in Tasmania was best provided by a person living in Tasmania. In consultation with MND Tasmania, recruitment action was undertaken and a new Regional Advisor, based in Launceston, will be commencing early in July 2015. MND Victoria will continue to provide intake and registration functions, as well as provide telephone contact and information services and other “back of house” functions. This initiative has been a great step actively supported by MND Tasmania to increase support for people living with MND. Funding support through TML (Tasmania Medicare Local) has been essential to sustain this role, and ongoing funding has been negotiated.
We have continued our provision of external staff supervision. This is highly valued by Regional Advisors and has now been extended to all staff. This is in addition to the one on one counselling and support that is available to any staff who need it.
The National Disability Insurance Scheme (NDIS) continues to develop and enhance the support available for people living with MND. As at 30 June we have 16 participants in the Barwon trial site. Our decision last year to employ an additional Regional Advisor with specific responsibility for the NDIS has proven to be sensible and successful. Nearly all NDIS participants choose the Association to provide Regional Advisor and Equipment services from the Association, which then provides significant financial support. We continue to have regular and effective meetings with NDIS planners to ensure better coordination of plans and recognition of changing needs.
We have maintained our support for people with MND living in aged care facilities through the provision of information sessions and person specific support. Our goal is to ensure that all aged care staff are MND aware and able to respond to the needs created by the disease. We have also continued our support and engagement with the Program of Experience in MND, educating palliative care staff about MND and the needs it creates.
The Australian Motor Neurone Disease Registry (AMNDR) continues to grow, with less than 1% of people with MND opting out of providing their personal information to this essential research project.
|Regional Advisor – total hours delivered||10,388||10,347|
|Face to face visits with people living with MND||896||1,078|
|Service provider partnerships||675+||675+|
|Regional Advisor – total hours delivered||N/A||250|
|Face to face visits with people living with MND||82||51|
|Information sessions conducted/attending||6/156||4/124|
Our annual survey of clients has been completed and the data and comments are under review. Over 30% of clients have returned the survey, which is an excellent result. The information from the surveys assist us to address identified problems, follow up on suggestions and ideas, and fine tune our services.
It is reassuring to know help is only a phone call away
Responded to 1,746 requests for information via phone, mail, email and personal visits. Conducted 60 information sessions to health professionals and residential aged care services, and 11 information nights for family and friends. Distributed 15,762 resourcing items, including kits, newsletters and electronic mailings.
Information and resourcing is the backbone of the organisation, ensuring that staff, people living with MND, health professionals and the public are aware of MND and its impact, and are supported by quality information. Late in the year we restructured our Information and Resourcing team and included one position with a focus on social and digital media.
This has already resulted in a better presence in social media, especially Facebook and Twitter, and with better recognition of the social media opportunities in everything we do.
As part of MND Week, we held our annual Day of Hope and Remembrance at Melbourne Town Hall in May. Led by Kate Prowd and Cathy Gluyas from Calvary Health Care Bethlehem, this was a fantastic morning to reflect on the past and share our hopes for the future. In Geelong, a similar service was held attracting a further 40 people.
MND Week also included our Ask the Experts session – supported by the Florey Institute and held at the Melbourne Brain Centre. A series of presentations gave an overview of the state of play in research, and provided a visit to the laboratory for a more personal look at the inside of research.
The National Conference and Family Support Services meeting was held in September on the Gold Coast, with keynote speakers including Ray Currie, Dr Rob Henderson, Dr David Oliver and Dr Shyuan Ngo. Evaluations for both events indicate that participation in both days was positive and benefitted staff.
We participated in the MS Society 2014 Training Calendar and delivered the MND Aware programme to 15 health professionals and personal carers. This will become a regular engagement with the next being in September 2015. Four education sessions were delivered for private care agency staff to ensure that they are able to deliver appropriate and excellent care for people living with MND, with knowledge and confidence.
We were also invited to speak about MND to 300 medical students at Monash University and 30 nurses at the Austin Hospital. These events were highly successful and are the ideal opportunity to influence emerging health professionals in MND and the needs it creates.
Information nights for family and friends continue to be well attended and an excellent opportunity to ask the hard questions and get considered responses from the MND Victoria team. Information nights were held in Melbourne, Wodonga and Kyabram, and can be organised at any location subject to demand.
Our Group Programs, “Living Well”, “Living On” and “Living Through”, continue to be offered on a regular basis. Living Well was delivered in Melbourne and Geelong, with great feedback on the importance of this event in supporting living better for longer while fighting MND.
The Ice Bucket Challenge raised significant interest (and fundraising) resulting in a number of speaking engagements at schools to support their fundraising events and increase understanding of MND.
|Information Requests by Source||2013/2014||2014/2015|
|Centre visit/in person||24||32|
|Information kits distributed||498||450|
|Community Awareness sessions||7||38|
|MND News editions/numbers||6/1,600||6/1,700|
|Health professional information sessions||46||28|
Your kindness and thoughtfulness will always be remembered
Provided 319 people with one or more pieces of equipment from 1,160 requests. Loaned 1,538 pieces of equipment, including non-retrieved items and recovered 1,244 items. Invested $518,670 on new, replacement and rental equipment. Spent over $670,000 to operate and deliver the MND Equipment service.
Disability aids and equipment, otherwise known as Assistive Technology (AT), helps people regain, retain and extend their independence, supports community participation, and creates a safe workplace for carers both paid and family. Preventing injury to carers is essential to support independent living for people with MND.
The significant increase in people living with MND registered with the Association has placed the equipment service under severe strain as they strive to have enough AT devices to lend; initiate and complete new AT acquisition requests; manage the AT waiting list and recover equipment no longer needed.
We are well supported by our contracted partners – Mobile Repairs, Pegasus and Magic Mobility – who provide AT management services for us. Outsourcing this role enables our staff to manage our service effectively and keep people with MND as their priority.
Delivery, recovery, repairs and maintenance continue to be the significant expenses in operating the Equipment Service. In particular, repairs have the significant added expense of travel time required to service the whole State. We have restated the responsibility of all borrowers to take care of equipment and promptly report malfunction, damage or failure.
The range of AT items that we no longer recover has been extended. These eleven (11) items are mainly of low value and were costing more to recover, clean and reissue than to buy new. We continue to supply these items through purchase by us or funding to people with MND.
Rental of equipment from external suppliers continues when we are not able to supply from our assets. Five specific items have been identified as essential to maintain safety and mobility, and are rented until we are able to supply from our resources.
We have maintained our information and influencing role with the NDIS regarding equipment provision, offering a range of options to ensure reasonable and necessary expenditure for participants and reducing costs for the NDIS. This will be an ongoing concern. We have also been in discussion with Aged Care providers regarding the funding and provision of AT for people over the age of 65 and in the new aged care service model.
|New clients receiving equipment||295||319|
|Equipment consignments sent||997||1,099|
|Number of items loaned||1,433||1,538|
|Number of items returned||1,015||1,244|
|Air pressure mattress||5|
|Armchair – electric lift recliner||16|
|Commode – bedside & shower toilet||11|
|Ramps – portable & various lengths||10|
|Tables – over bed & around chair||10|
|Wheelchair - manual||56|
|Wheelchair - manual & tilt||10|
|Wheelchair - power tilt in space||10|
|Wheelchair - power standard||5|
His new wheelchair was a dream
Recruited and trained 29 new volunteers for the Association. Delivered 6,568 hours of support: in the office; to people with MND; support groups and special events. Delivered 26 training session for volunteers.
Volunteers remain as the core of our organisation – they are how we started, how we grew, and how we continue to support people living with MND. With effective coordination, training and support, we have grown and nurtured a committed volunteer workforce that shares our vision – a world without MND.
We had 118 registered volunteers undertaking a range of roles including receptionist, masseuse, hairdresser, friendly visitor, biographer, and administrator. We recruited and trained 29 new volunteers during the year and we thank all those volunteers who resigned during the year to pursue other activities – you made a difference for people with MND.
During the year, the Bendigo Support Group closed its doors, having been a mainstay of our rural support group network. Thank you for your support and awareness raising. Please enjoy a well-earned retirement. In Head Office, a range of administration roles support the Association. If you come through our door, you are welcomed by a volunteer receptionist. Volunteers also assist in merchandising and fundraising, the equipment service, statistical recording and collation, newsletter assembly and distribution and on the State Council.
Over 6,500 hours of support, or the equivalent of 3.32 full time staff, was contributed by registered volunteers, and many thousands more hours by those people who undertook one off fundraising events.
In fundraising, registered volunteers have made significant contributions to the MND Walks to D'feet, MND Week activities, Christmas Card sales and our Bunnings’ sausage sizzle.
During Volunteer Week, we celebrated our volunteers’ contribution with a tour of the War Memorial, followed by lunch at the Terrace Café in the Botanical Gardens, attended by over 35 people. Our end of year celebration in December was held with a lunch at MND Victoria.
|Number of hours contributed by volunteers||5,631||6,568|
|Number of active volunteers||101||118|
|Number of new volunteers||19||29|
|Number of volunteers attending training sessions||38||23|
|Number of hours contributed by support groups||1,002||546|
I will never forget the care and compassion we received from MND
Ice Bucket Challenge – supported and participated, raising over $558,000. Biggest ever walk to D'feet MND in Melbourne, raising $267,000. Zo-ee ran their tenth and final MotorOn cocktail party and can-shake, raising over $85,000 for research.
We are pleased to report that fundraising activities last year generated $2,740,368 or 67% of our income. The impact of the Ice Bucket Challenge has already been highlighted earlier in this report and certainly it was the biggest single fundraising event of the year contributing 20% of the total funds raised. This was a great, unexpected addition to the Association’s already diverse income streams particularly as it required little staff or financial support.
The strength of our fundraising continues to come from the MND community who consistently and enthusiastically support our many fundraising efforts to raise funds for care, support and research.
Once again, the Walk to D'feet MND events were a great celebration of how the MND community come together to raise awareness and funds and this year saw another increase in participation and fundraising particularly at the Melbourne Walk.
The Association continues to benefit from donations from our generous supporters. These donations may come as a result of our direct appeals, our donor update, in memory of a loved one or just general unsolicited donations. The impact these donations have on the life of someone with MND cannot be adequately measured. We can only say thank you on behalf of the whole MND Community for enabling us to purchase the aids and equipment that help someone with MND to live as independently as possible for as long as possible.
Fundraising – Independently Run Events (F-IRE)
This year zo-ee held their 10th and final MotorOn event – another outstanding success raising $80,000. Since their very first event ten years ago, zo-ee has raised over $500,000 for research and their dedication and commitment is to be commended. We will miss their enthusiasm and the financial impact they have had. There are a number of other groups pushing fundraising boundaries, with the Simko family’s Rock Off MND raising over $67,000 at its inaugural event in Geelong last March. The Benalla Act to D'feet MND and the SuperBall VIII generated $133,616 this year for MND research. The Drink Tea for MND Campaign continues to grow, raising almost $23,000. Drink Tea for MND can be as simple as a gold coin morning tea to a more elaborate themed event – or anything in-between. Drink Tea for MND is a good awareness raising opportunity especially for new fundraisers.
Walk to D'feet MND
Despite the terrible weather conditions the 2014 Melbourne Walk to D'feet MND saw almost 2,200 people walking around Princes Park in Walk to D'feet MND T-shirts. Our goal of $120,000 was smashed; we raised $267,551.
The continued growth in participation confirms that this is a really important event for the MND community. They see this as a way to show support for each other, the Association and for future generations.
We continue to look at enhancing events and raising the bar for participation and fundraising. Walks were also held in Bendigo, Benalla (Act to D'feet MND) and Geelong raising $74,135.
We encourage people to start a Walk in their region - they are an easy and fun way to generate community participation and raise awareness. The Association assists with online registration and fundraising platforms, permits, promotion and Walk T-shirts.
Organised Fun Runs and On-line Fundraising
“Challenge” events continued to be good awareness and fundraising opportunities with Run Melbourne being the most popular. Last year we received $65,867 as a result of people participating in these events and we support these efforts through social media and providing MND Victoria fundraisers with “I’m Running to D'feet MND” singlets.
Trusts and Foundations
Trust income was 50% lower this year as many Trusts focus on specific areas of interest which preclude the Association from applying for funds. Thankfully there are a number of Trusts and Foundations who have supported MND Victoria for a number of years and who continue to approve our funding applications.
Bequest income was $237,448 last year, or approximately 10% of total fundraising income.
These funds were invested in the MND Care Foundation which was established some years ago to form a corpus of investments to fund our services. We continue to invest all bequest income into the MND Care Foundation which now stands at $4,670,337.
|FUNDRAISING OUTCOMES BY ACTIVITY||2013/2014||2014/2015|
|Bequests and Trusts||1,893,314||365,598|
|Walk to D'feet and special events||425,698||826,578|
|Ice Bucket Challenge||N/A||558,011|
|Government Transfer Payments||509,929||264,999||7%|
|Aids and Equipment (inc Capital)||1,072,991||1,146,158||30|
Amazingly surprised at the depth and breadth of the support provided
Maintained strict control over expenditure, while enhancing the breadth of income sources. Invested in one new staff member and extended the disability aids and equipment service.
2014/15 has proved to be a very successful year for the Association financially. The unexpected contribution of the Ice Bucket Challenge, combined with a strong contribution from investments, bequests and fundraising, has resulted in an audited surplus of $521,575, after transfers to the MND Care Foundation.
While this is an excellent result, a further $475,594 was expended on capital items (assistive technology purchases) from the Ice Bucket Challenge funds, leaving a cash surplus of $45,971.
During the year, due to policy change, government recovered some transfer payments and paid them directly to service providers in palliative care. This did not diminish the services provided for people with MND. The second year of the National Disability Insurance Scheme has delivered over $43,000 in payment for services delivered by the Association. This is a significant amount which will grow as the scheme moves to full delivery across Australia between 2016 and 2019.
The Association’s fundraising strategies continue to deliver significant funds to support services and also for research. The Ice Bucket Challenge proved a significant windfall, and Walks to D'feet MND continue to grow in both attendances and funds raised.
Bequests continue to be strong and we maintain our policy of investing them through the MND Care Foundation to provide future income and as a buffer to meet significant expenditure to support service delivery. Over $237,000 was contributed through Wills during the year, and we ask that everybody consider leaving a bequest in your Will to continue the fight against MND.
Our history of having much of our income being dependent on year to year activities continues, with strong dependence on the myriad of fundraising events, small and large, to continue funding care and support for people living with MND, and for research into cause, treatment and cure. At the same time, we maintain close monitoring of expenditure and it is carefully managed. As the final result for this and previous years demonstrates, there is a fine balance that has to be maintained to ensure that we have appropriate levels of funds available for service delivery.
We continue our focus on delivering care and support for people with MND, with 75% of all expenditure being applied to this activity.
All funds donated for research, or raised in research focussed fundraising events, are applied to research, either through MND Australia, the provision of Nina Buscombe Awards to support travel by scientists and health care professionals, or through local research projects. Research activities were 10% of all expenditure. We have managed to keep our fundraising costs low – in fact, for every dollar we invested in fundraising, we achieved a return of $8.17 – an excellent result. Administration expenditure has increased due to the need for additional resources to manage more transactions in trading. However, at 6% of all expenditure, we remain mean and lean in back of house, while ensuring that proper and effective administration supports the Association. The audited accounts will be available from the Association’s office and website after they are presented at the Annual General Meeting.
The Association is in a strong financial position as the National Disability Insurance Scheme moves to full implementation, and we have sufficient reserves to absorb the ups and downs as we move to this new funding paradigm. We continue our mission – to provide and promote the best possible care and support for people living with MND – through service delivery, advocacy and research.