Our focus is on the 400 people living every day with MND, supported by the services of MND Victoria. At the same time, we fundraise for and support investment in research, because we know that without research we will not find cause, treatment and cure. But until there is a cure, there is care …
- Influencing NDIA trial sites regarding policy and practice
- Over $427,000 raised and invested in research
- Excellent outcomes of fundraising and donor development activities
- 194 new people registered to receive services and 576 people with MND supported during the year, in Victoria, and 16 new people and 53 people supported in Tasmania
- Introduced “Keeping Connected” as a service to provide regular contact with carers and people with MND
- Successful accreditation against ISO 9001:2008 and a registered service provider for the NDIS and under the Disability Act 2006
- Delivered 11,685 hours of support and 3,508 contacts for people with MND
- Ongoing success with the NDIA in Barwon and implementation in the NEMA region
- Maintained participation in MND clinics at Calvary Health Care Bethlehem, Bundoora Extended Care Clinic and Belmont (Geelong).
- Relocated an MND Advisor position to Ballarat in response to shifting demand and NDIA rollout strategy
Information and Resourcing
- Responded to 1,247 requests for information via phone, mail, email and personal visits
- Conducted 85 information, education and awareness sessions for health professionals, residential services, direct care workers and community groups, and 9 information nights for family and friends
- Distributed 13,694 resource items including kits, newsletters and electronic mailings
- Loaned 1,937 pieces of equipment including non-retrieval items and recovered 1,740 items no longer required
- Provided 369 people with one or more pieces of equipment from 1,172 requests
- Invested $283,626 in new, replacement and rental equipment
- Spent over $625,000 to deliver, recover, maintain and control the equipment service
- Recruited and trained 25 new volunteers
- Delivered 6,682 hours of support: in the office, to people with MND, support groups and special events
- Maintained enthusiasm and passion for volunteering in the fight against MND
- Walks to D’feet MND continue to increase the attendance and funds raised for care and research
- Rock Off MND raised over $158,000
- Raised over $2.76 million to support the 400 people living with MND every day and to contribute to research
- Effectively managed investments in a time of low returns to achieve over 5% return on capital
- Maintained control over expenditure and supported growth and range of income sources
- Maintained focus on spending funds to support people living with MND
35 years focussed on service – for and with people living with MND. And done by rigorously pursuing our mission – to provide and promote the best possible care and support for people living with MND. We know that research is the only path to find cause and cure. We also know that today we are supporting over 400 people living and fighting MND. They want and need support while the researchers chase down the elusive cause and develop active treatments and find a cure. And until there is a cure, there is care …
We continue to be an active participant in the National Disability Insurance Scheme, and are ready for the commencement of rollout. Our final step – the implementation of a comprehensive client management system, is well underway. An agreed supplier and intensive work to ensure that the system meets our needs, and those of people with MND, will achieve full implementation by end December 2016. We believe that efficiencies raised by this implementation will support better services for people with MND, and give us more information to support our advocacy and influencing roles.
At the same time, the commencement of the Commonwealth Government’s “My Aged Care” has highlighted the gaps in service about which we have been warning. For those supported through aged care funding, little provision for disability aids and equipment, financial contribution requirements, and funding via allocation rather than entitlement demonstrate the discrimination between those under 65 years and those over when diagnosed.
We 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, the presence of the MND Advisor, based in Launceston, has had a huge impact on services and service access. Unfortunately, funding for this position may end on 31 December 2016, and a new strategy will need to be in place to support that role and meet the needs of people in Tasmania living with MND.
The Ice Bucket Challenge 2015 did not repeat the huge success of August 2014, but continues to serve as a focus for the global response to ALS/MND. However, Rock off MND and our other research focussed events brought the message home again, raising over $414,000 and investing over $427,000 in research by MND Victoria. These events do not 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, MND advisors, information and resourcing, our volunteers, and our ongoing advocacy for the needs of people with MND. And their family, friends and colleagues.
Our accreditation review against the Department of Health and Human Services Disability Standards and ISO 9001 proceeded positively, and we are accredited for a further three years. We remain an approved service provider under the Disability Services Act 2006 and the NDIS.
The number of people supported has increased from 531 in 2014/15 to 576 in 2015/16. To meet this demand we have introduced “Keeping Connected”, our service to ensure we retain regular contact with people with MND and their carers.
Hayley Tristram in Tasmania and Megan Scott in Ballarat have joined our MND Advisor team, and Alia Turnidge has joined Support Services.
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
We have raised 77% of our income from fundraising, investment and commercial activities, and we thank all those who have given donations, run events or participated in them, or chose us as their NDIA service provider. In particular we thank those who made the commitment to run events – big and small. While our support helps, it is the energy and passion of those volunteers that makes our third party fundraising so effective and successful.
State Council continues to focus on effective governance and directing an organisation which its members need and want. People living with MND drive us forward. During the year, Hugh Parkes retired and we thank him for his contribution to the Association and people living with MND.
During the year 194 newly diagnosed people joined the Association, and we are sad to advise that 181 people died.
We commend the 2016 Annual Review to you as an overview of our work in the fight against MND.
Eric Mayne – Chairman
David Lamperd – Treasurer
Rodney Harris – CEO
State Council (as at 30 June 2016)
Eric Mayne – Chairman *
Andrew Marshall – Vice Chairman *
David Lamperd – Treasurer *
Duncan Bayly *
Katherine Barnett *
Wayne Pfeiffer *
* have a personal association with MND
More people registering with the Association has created significant pressure on staff and resources to maintain our high standard of service throughout the year. Combined with National Disability Insurance Scheme (NDIS) influencing, accreditation review, and significant increases in equipment demand, we have had a challenging, but successful year.
- Successful advocacy with NDIS to introduce “reference packages” and “equipment bundles” to remove delays in assessments and planning for new NDIS clients.
- New MND Advisors appointed in Tasmania (Hayley Tristram) and Ballarat (Megan Scott) and retirement of Sue Sweeney from Benalla.
- Support Services Officer Alia Turnidge appointed to manage project administration for the new Client Relationship Management System (CRiMSon), and provide Equipment Service and MND Advisor support
- 194 new people registered to receive services in Victoria, and 576 people supported during the year.
- 16 new registrations and 53 people supported in Tasmania.
- All staff attended the Support Services meeting in Sydney, which included “The Change Room” training, focussed on developing skills to adapt to the changing work environment, particularly the NDIS and My Aged Care platforms.
- Audit surveillance review resulted in no non-compliances and certification under ISO 9001:2008, and ongoing approval as a service provider for the NDIS and Disability Services in Victoria.
- Five staff undertook training as internal auditors of the Quality Management System.
- Other training included NDIS, aboriginal cultural awareness and health safety, PEG, NIV, safe driving and financial management.
- Reviewed client management systems and selected iCase by Sonet to replace CRISSP.
- Achieved 99+% participation in the Australian MND Registry (AMNDR)
- Palliative Care MND PEM (Program of experience in Motor Neurone Disease) continuing with 1 participant this year. PEM facilitates the development of knowledge of MND for people working in palliative care.
Do you know? That MND Victoria delivers services to over 400 people living with MND – every day?
|VIC||2014 /15||2015 /16||10 Years|
|People with MND registered as at 30 June||382||385||2,946|
|People newly diagnosed with MND during the year||182||194||1,603|
|Deaths of people with MND reported||148||181||1,375|
|People living with MND supported during the year||522||576|
|TAS||2014 /15||2015 /16|
|People with MND registered as at 30 June||37||42|
|People newly diagnosed with MND during the year||23||16|
|Deaths of people with MND reported||11||11|
|People living with MND supported during the year||48||53|
The MND Advisor (formerly Regional Advisor) role remains as the interface between people and families living with MND and the disability, aged and community service sectors. Early intervention based on face to face information, assessment, needs identification and referral establishes a solid foundation for moving forward and earlier identification and response to emerging needs created by MND.
- New MND Advisors in Tasmania and Ballarat.
- Keeping Connected commenced – clients with support plans in operation referred to this program for ongoing monitoring at intervals of their choosing. Evaluation indicates that clients feel connected enabling Advisors to focus on those with high or emerging unmet needs.
- Regular external supervision continuing supported by an external consultant. Highly valued by MND Advisors, it has now been extended to all staff on a regular basis.
- Active in NDIS in the Barwon trial site since its commencement in July 2013. As at 30 June 2016 we have 13 clients in the Barwon Region participating in the NDIS.
- Regular meetings with NDIA planners in Barwon to discuss the coordination of participants’ plans, discuss outcomes and address support issues.
- Planning for the roll out of the scheme in North Eastern metro area has been underway, including working with clients who will be eligible to become participants and assisting them to prepare for their planning meetings with NDIA.
- One on one support and information sessions (residential facilities and care providers) continue to be offered when our clients move into a supported care environment to ensure staff have knowledge of MND, and understand and can respond to the likely care/support needs that are generated.
- Continued to provide support and education opportunities for MND Shared Care Workers placed in palliative care regions.
- Annual Survey of clients completed, achieving a 34% response rate. Comments from respondents re their experience of our staff, services and supports include:
“professional and courteous, helpful and kind, excellent, I am really happy with the service, equipment service excellent”.
“I have nothing but praise for the services MND Vic provide”.
“They ring me to find out how I am, provide equipment I need, contact my social worker and provide assistance when needed”.
“Comfort in knowledge they are there to help, excellent in every aspect, very friendly and efficient”.
- An average rating of 9.4 out of 10 was received to the question ‘how likely are you to recommend MND Victoria to others in a similar position’.
Do you know? Keeping Connected Program for clients launched to provide ongoing monitoring and review.
|VIC||2014/ 15||2015/ 16||10 Years|
|Regional Advisor – total hours delivered||10,497||11,685||80,213|
|Individual contacts with people living with MND||1,254^||3,508||9,641|
|Service provider partnerships||675+||675+||-|
|TAS||2014/ 15||2015/ 16|
|Individual contacts with people living with MND||51^||162|
|Information sessions conducted/ attending||27||17|
Informing and resourcing people living with MND, families, friends, health professionals and other service providers creates an atmosphere of knowledge and confidence in the response to MND. Education events allow us to support service providers, while information nights and MND Advisors help families come to grip with the challenges that MND creates. At the same time, reporting and supporting research advances continues to maintain hope for cause, treatment and cure.
- Health professional education continues to be an essential element in our information and resourcing service:
- Launceston – in conjunction with Primary Health Tasmania. 140 health professionals attended, including 6 GPs. Excellent feedback was received.
- Cranbourne - “MND – The Community Responds” seminar attended by 84 health and community professionals.
- Mildura – A day time session for allied health and people with a neurological condition (80 people) and a night/dinner session for GP’s (20 people), coordinated by Sunraysia Community Health – Movement Disorder program. The MND presentation was delivered alongside presentations on Parkinson’s disease and MS. Many questions were received and discussion about MND was generated, particularly during the GP session.
- Attendance at our programs for people living with MND continues to highlight the benefits of running these programs.
- Living Well - Carrum Downs 17-18 September 2015 - Fifteen people attended across two days and discussed topics as diverse as communication devices, the role of spirituality with MND, signs of carer burnout and the benefits of “wine spiders”!
- Living Well – Canterbury May/June 2016 - six session Living Well program based on a model of adult conversation around a weekly theme and readings. Topics of interest included advance care planning, wills, assistive equipment, clinical trials, energy conservation, societal views on death, lifestyle changes, and community support services just to name a few. Participants chose to keep in touch and reconvene for a catch up session in August.
- Living Through – Canterbury – November 2015 and June 2016 - a total of 17 people participated.
- 94 information sessions held for health professionals, residential care staff, community groups, families and newly diagnosed. This year sessions were also held on weekends to provide more options for
people wishing to participate.
- Developed and maintained excellent reach with our Facebook and Twitter communications and maintained good coverage via our website.
- Comparison of statistics and client feedback highlights increased access to online information.
Do you know? The Association continues to support people impacted by MND even after their loved one has died?
|INFORMATION REQUESTS BY SOURCE||2014/ 15||2015/ 16||10 Years|
|Centre visit /in person||32||17||313|
|INFORMATION||2014/ 15||2015/ 16||10 Years|
|Information kits distributed||450||601||4,742|
|Community Awareness sessions||38||65||264|
|MND News editions/numbers||6/1700||6/1600||60/15,600|
|Health professional information sessions||28||20||572|
Disability aids and equipment, or assistive technology (AT), assists people to retain, regain and extend their independence while living with MND. AT promotes engagement with the community and environment. It promotes safety for people with MND, family and friends, and paid and unpaid workers. AT is essential.
- Excellent and satisfying year for the Equipment Service. The increased staff hours in the Equipment Service has positively impacted our response with resultant benefits to clients.
- Almost 2,000 assistive technology items were issued during the year.
- There were 1,172 requests from health professionals; many requests contain more than one item.
- The waiting list for equipment continues to reduce as increased stocks from the last three years of investment take effect. The net result is almost no waiting times.
- Over 50% of the waitlist is for equipment which is being retrieved, assessed or cleaned ready for re-issue. There are very few instances where a request cannot be filled due to unavailability of items.
- Repairs and refurbishment remain costly. We rely on all equipment users to take care of equipment and report malfunction or damage immediately to MNDV. Concerns that the Association does not provide a 24/7 emergency repair service have been raised and this is under review.
- We aim to have as many NDIA clients as possible select the preferred equipment bundle which improves availability and reduces overall cost to NDIA.
- We maintain 12 non-retrievable items, as well as 5 assistive technology items focussed on mobility and safety that are hired if the Equipment Service cannot supply
- 200 non-retrievable items including bedpans, bedsticks, over toilet frames, shower stools, shower chairs, non-spill urinals, toilet seat raisers, surround toilet frames, wedge ramps, bed cradles and pickup sticks were supplied
- Equipment purchases during the past year:
|Air pressure mattresses||10|
|Armchair - electric recliner||27|
|Beds - electric||10|
|Over bed tables||25|
|Wheelchairs - manual||38|
|Wheelchair - tilt power||3|
DO YOU KNOW? To purchase a power wheelchair costs $15,000 and that MND Victoria has 104 of these on loan to people living with MND?
|EQUIPMENT||2014 /15||2015 /16||10 Years|
|New clients receiving equipment||319||369||2,536|
|Number of items loaned||1,538||1,937||12,425|
|Number of items returned||1,244||1,740||10,077|
DO YOU KNOW? MND Victoria meets the costs of delivery, maintenance, recovery, refurbishment, reissue and management of all equipment in the Equipment Library?
MND Victoria grew from volunteers coming together to form an organisation to represent, support and address the needs of people living with MND. They have been the stimulus for growth, for improvement and for expansion. They have been the instigators, and drivers, of change and service delivery. They remain at the core of the Association.
- Regular volunteer support meetings well attended – receptionists, client contact (massage, hairdressing, visiting, biography, and bereavement), and administration.
- 131 registered volunteers – 25 new volunteers during the year.
- Volunteers working at head office in admin roles including on reception, merchandising and fundraising, equipment, statistical recording, and newsletter compilation.
- Volunteers have worked at MND Walks, MND week activities, Christmas cards, sausage sizzle, Georgy Girl, Equestrian Event and Car Show.
- The Volunteer Christmas celebration was held in December in the form of a cocktail party commencing at 4:30pm. The time was changed this year to accommodate those who work during the day. 30 volunteers attended and the atmosphere was very festive. Consideration is being given to alternating between a lunch and evening event in the future.
- Managers of Fundraising and Support Services, plus the Coordinator of Volunteer Programs attended the 14th and final luncheon of the Outer East Support Group after more than 20 years of dedicated support for people living with MND
- Volunteer Week was celebrated with boat trip on the Tram Boat up the Maribyrnong River including a nursery and garden centre tour. The highlight was the presentation of service badges for 35 and 25 years of service.
- The Coordinator of Volunteer Programs presented a paper at the National Volunteer Conference in Canberra in April 2016. The paper explored the possibility of sharing volunteers between organisations to meet the needs of clients and create volunteering opportunities for those volunteers whose time and/or talents are underutilised or who may be looking for new or different opportunities to volunteer.
DO YOU KNOW? MND Victoria is the only Association specifically focussed on caring for people with MND?
|VOLUNTEERS||2014 /15||2015 /16||10 Years|
|Number of hours contributed by volunteers||5842||6,044||62,170|
|Number of active volunteers||116||127||1,122|
|Number of new volunteers||29||25||168|
|Number of volunteers attending training sessions||23||58||393|
|Number of hours contributed by support groups||546||638||12,208|
Once again our focus on maintaining a diverse income stream resulted in the Association raising $2,764,368, an excellent result when taking into account that the Ice Bucket Challenge was a once in a lifetime event and increased competition from other organisations also raising funds for MND.
The Association has nurtured its relationships across the MND community for thirty-five years. We know the continued strength and success of our fundraising is determined by our recognition and support of everyone who raises funds for us – regardless of how much they raise. It is the MND community that allows us to continue to deliver the care and support that makes day-to-day living a bit more manageable for the 400 people we support every day of the year. The Association continues to fund research into cause, treatment and cure.
- Sharing stories on how donor funds are used to make life more bearable for people with MND resulted in $335,328 being raised to help fund investment in new assistive technology equipment, information services and support.
- In Memory donations totalled $157,297 and allow family and friends to honour loved ones who die from MND.
Fundraising – Independently Run Events (F-IRE)
- Major growth area for MND Victoria fundraising.
- Account for 20% of fundraising total.
- Held throughout Victoria and range from simple morning teas to rock concerts and everything in-between.
- Rock Off MND raised over $158,000 for the Jen Simko Research Grant.
- Dinner in honour of Filanthi Lizardos raised over $65,000.
- Annual Benalla Act to d’feet MND and SuperBall IX raised over $126,000 combined.
These are just three examples of the fantastic support MND Victoria receives.
Walk to D’feet MND
- Danielle Milito organised the first Lakes Entrance Walk to D’feet MND family fun day in honour of her father Terri Leadbeatter.
- All Walks continue to grow and this financial year contributed $316,753, 12% of our fundraising total.
- The Walks are an important event for the MND Community as they are a way for families and friends to support each other, the Association and future generations.
- Walks are an easy and fun way to generate community participation, raise awareness and funds for MND Victoria. The Association can provide a Walk Kit and other resources to anyone wishing to start a Walk in their region.
Organised Fun Runs and On-line Fundraising
- “Challenge” events provide opportunity for supporters to raise funds for their favourite charity.
- Run Melbourne, the biggest event for the Association, The Melbourne Marathon and City2Sea raised a combined total of $84,460.
- Everyone who participates and raises funds for MND Victoria is offered a free “I’m Running to D’feet MND” singlet to raise awareness during the events.
Trusts, Foundations and Bequests
- Trust sector remains very competitive with many Trusts and Foundations limiting their activities which exclude the Association from consideration.
- Some Trusts recognise the vital work of the Association and continue to support applications.
- Trust income in the past year totalled $156,615, slightly higher than the previous year.
- Like most charities, the Association does not budget for Bequest income but it remains a very important income stream.
- Bequests are invested in the MND Care Foundation.
- The Care Foundation has over $5 million invested and working to fund MND Victoria’s care and support services.
- The Care Foundation provides a safety net so we can continue to deliver our services in the event of major negative financial events out of our control.
- Bequest income totalled $180,179, or approximately 7% of total fundraising income.
|FUNDRAISING OUTCOMES BY ACTIVITY||2014 /15||2015 /16||10 Years|
|Bequests and Trusts||$365,599||$336,794||$5,693,156|
|Walk to D’feet and special events||$767,936||$961,951||$4,857,867|
|Ice Bucket Challenge||$558,011||$33,956||$591,967|
MND Victoria continues a long history of financial self-reliance through fundraising supplemented by targeted access to government funding. This year is no different, with 72% of income being generated via fundraising, paid services and investment. Support from bequests, independent fundraisers, and donations form a solid backbone for the organisation.
An audited surplus of over $146,000 is an excellent result, after investing over $427,000 in research and $400,000 to the MND Care Foundation.
The third year of the National Disability Insurance Scheme has delivered $116,700 in income by funding people living with MND in the Barwon Region to purchase services and support. Participants in the NDIA are funded on the basis of their reasonable and necessary support needs, and they then choose from whom they want to purchase services. Our hope is that they purchase from a team well experienced in MND and proven providers – MND Victoria. The rollout to other centres commenced on 1 July 2016, and we look forward to promoting and delivering our quality support for people with MND.
While the Ice Bucket Challenge did not achieve significant funds in its second iteration, it continues to raise awareness globally of the cause. The Association’s fundraising strategies continue to deliver significant funds to support care services and research. Walks to D’feet MND continue to grow in popularity, attendance and funds raised.
Our ongoing encouragement of people to make bequests in favour of the Association continues to be effective, and our investment of them through the MND Care Foundation creates an ongoing stream of income to support care services. Over $180,000 was received from bequests, as well as advice of further funds to be received in the coming financial year. The Care Foundation provides a significant buffer to the uncertainty of fundraising and ensures that any bumps in the financial road can be adequately addressed without diminishing services and support. 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 reliance 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 74% 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 11% 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 $7.41– 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.
|INCOME||2014 /15||2015 /16|
|EXPENDITURE||2014 /15||2015 /16|
|Aids and Equipment (includes Capital)||1,146,158||1,104,916|
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. Our mission continues – to provide and promote the best possible care and support for people living with MND – and we do this through service delivery, advocacy and research. Until there is a cure, there is care …
MND Victoria’s Mission is to provide and promote the best possible care and support for people living with MND.
“People living with MND” includes people who have been diagnosed, those yet to be diagnosed, carers, former carers, families, friends, workmates and any other person whose life is, or has been, affected by a diagnosis of MND.
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.
1. To provide the best possible support for people living with MND.
2. To collect and share quality advice on living with MND.
3. To create and foster links between people living with MND by providing opportunities for interaction.
4. To raise awareness of MND and the needs it creates.
5. To develop and maintain relations with MND Associations within Australia and overseas.
6. To advocate, foster and maintain links that can help us achieve our mission.
7. To encourage and support research initiatives and disseminate knowledge of research progress.
8. To achieve our mission through innovation, sustainability and best practice.
Until there is a cure, there is care.