Until there's a cure ... there's care

Caring for Victorian's living with Motor Neurone Disease. Because until there is a cure, there is care.


“Your advocacy is much appreciated, as is your pleasant, patient manner as I wade my way through this challenging opportunity for growth”
Person with MND

What we stand for ...

Our Mission

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.

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.

Our Objectives

  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.

State Council

MND Victoria continues its focus on providing care and support for people living with MND. By delivering key services, and linking people to other high quality providers who can meet their needs, we help people live better for longer while fighting MND.

We have:

  • Developed, completed and implemented our new iCase client management system to facilitate engagement with the National Disability Insurance Scheme and Aged Care reforms.
  • Continued our close and productive work with MND Australia and its members to ensure common practice and goals in negotiating and influencing government practice and policy through systemic changes.
  • Supported over 575 people living with MND with assistive technology, MND Advisors, information and resourcing and ongoing advocacy, and raising over 75% of the funds invested through fundraising.
  • Maintained our accreditation with the Department of Health and Human Services and ISO 9001 through our “annual review” and remain an approved service provider for DHHS and NDIS.
  • State Council members Eric Mayne and Andrew Marshall resigned and we thank them for their contribution over many years. We welcome Jodie Harrison-Fitzgerald, Angeline Kuek and Chloe
    Williams to State Council.
  • State Council remains focussed on governance and delivering the organisation that its members want and need.
  • Three staff members – Peter Allen, Vanessa McTackett and Megan Scott – ceased employment. We thank them for their service, and welcome Megan
    Crellen, Alison Jones and Lauryn Matheson to continue their important work and Daniel Woodrow to give us additional resources in Fundraising.
  • Sadly we acknowledge the death of Elaine Smith, long term volunteer and supporter of the Association. She will be missed.
  • We thank the staff, volunteers and all our partners for their work – without you it would not be done.

David Lamperd Chairman
Jeremy Urbach Treasurer
Rodney Harris CEO

State Council (as at 30 June 2017)

David Lamperd – Chairman*
Katherine Barnett – Vice Chairman*
Jeremy Urbach – Treasurer *
David Ali
Duncan Bayly *
Chris Beeny
Barry Gunning
Jodie Harrison *
Angeline Kuek
Wayne Pfeiffer *
Chloe Williams
* has a personal association with MND

Support Services

“ We just wanted to thank you for all your support throughout the year. We have appreciated your practical guidance and advice” Carer

MND Support Services continue to provide key services for people with MND to help them to live better for longer and to maintain community and family engagement and participation.

  • We continue our support arrangements with MND Tasmania and provide an MND Advisor Service in that State.
  • 196 Victorians and 19 Tasmanians diagnosed with MND registered with the Association for support.
  • We are engaged with the National Disability Insurance Scheme with 50 clients now participating, 35 with plans for support and 15 in the planning phase.
  • In conjunction with MND Australia and MND NSW we are actively addressing the impact of the transfer of responsibility to the Commonwealth for support of people with MND over the age of 65.
  • We maintain and enhance cooperative relationships with over 600 partners in supporting people with MND.
  • Regular external supervision continues and is highly valued for the support it provides, especially for MND Advisors.
  • Survey of clients achieved a 30% response rate, and responses affirmed the importance and quality of services from the Association.
  • The DHHS Disability recertification and ISO 9001 Surveillance audit were undertaken and passed. Since our first audit in 2009, MND Victoria has never received a non-compliance report.
  • Our new Client Management System “iCase” went “live” in June 2017 with ongoing fine tuning and development continuing.
  • We were advised of 170 deaths in Victoria, and 15 in Tasmania.
MND Victoria supported 575 Victorians and 54 Tasmanians with MND during the year.
VICTORIA 2015 /16 2016 /17
People with MND registered as at 30 June 385 405
People newly diagnosed with MND during the year 194 196
Deaths of people with MND reported 148 170
People living with MND supported during the year 522 575

 

TASMANIA 2015 /16 2016 /17
People with MND registered as at 30 June 45 39
People newly diagnosed with MND during the year 16 19
Deaths of people with MND reported 11 15
People living with MND supported during the year 53 54

MND Advisors

“ I am amazed at how quickly this has happened. It is reassuring to know that there is an organisation so supportive and helpful” Carer

MND Advisors are the community face of MND Victoria, representing the Association in its contact with people living with MND, and being the guides and navigators of an increasingly complex service system.

  • Keeping Connected continues to support effective use of MND Advisors and focusses on emerging and high unmet needs.
  • Active engagement with the 35 NDIS clients with plans as at 30 June to optimise their care and support in Barwon, North East Melbourne, Central Highlands and Lodden.
  • Regular meetings with NDIA planners in all rollout areas to ensure appropriate plan content and coordination.
  • Planning for next rollout sites in 2017: Eastern Melbourne (1 November), 2018: Hume Moreland (1 March), Bayside Peninsula (1 April), Inner Gippsland (1 October), Wimmera South West (1 October) and Ovens Murray (1 October) – a huge task.
  • Intensive engagement with the development and rollout of iCase to ensure it meets our needs.
  • External supervision continuing, supported and led by an external consultant.
196 new Victorian members with MND, 19 Tasmanian. 170 Victorians died from MND and 15 Tasmanians. 4915 contacts with Victorian people living with MND, 186 with Tasmanians. 10,228 hours delivered to clients in Victoria, 458 hours to clients in Tasmania.
VIC 2015/ 16 2016/ 17
Regional Advisor – total hours delivered 11,685 10,228
Individual contacts with people living with MND 3,508 4,915

 

TAS 2015/ 16 2016/ 17
Regional Advisor – total hours delivered 350 458
Individual contacts with people living with MND 162 186

Equipment Service

“I can’t thank MND Victoria enough and say how much we have appreciated the equipment program. It allows us to remain at home, be mobile, comfortable and safe” Carer

We continue to purchase and supply essential equipment for people with MND to address mobility, care and communication issues, ensuring family and community engagement and supporting safety for clients and carers, both unpaid and paid.

We have maintained a small waiting list following significant purchases during the year and better management of return and refurbishment processes.

  • The program of non-retrievable low cost items has continued, reducing recovery and cleaning costs.
  • Supported by a grant of $57,000 from Cure for MND Foundation and $94,000 from the Department of Health and Human Services to purchase new equipment.
  • The company managing our equipment activities went into receivership and our risk management response proved effective and responsive. The transfer to a new provider, Chemtronics, proceeded successfully and will be enhanced.
  • Deliveries to rural and remote locations continue to raise issues however we are committed to equity of access to all MND Victoria services.
  • Complexities around NDIS and Aged Care remain to be resolved to ensure that the Association is compensated for the assistive technology services provided to funded clients.
  • We remain committed to supplying assistive technology at no personal cost for people living with MND.
340 New clients receiving equipment, 1119 requests for equipment, 1644 provided, 1420 recovered. 305 clients had equipment at 30 June. 338 Major equipment repairs undertaken during the year.

MAJOR EQUIPMENT PURCHASES DURING PAST YEAR

  • Armchair (electric lift recliner) x 6
  • Commode (shower/toilet) x 10
  • Commode (shower/toilet tilt) x 6
  • Cushion (Roho) x 14
  • Hoist x 10
  • Mattresses x 12
  • Nebulisers x 22
  • Sling x 10
  • Table (over-bed) x 6
  • Table (around chair) x 6
  • Transfer belt x 7
  • Walking frame x 20
  • Wheelchair (manual) x 17
  • Wheelchair (manual, tilt) x 1
  • Non-retrievable items x 176
    including bedpans, bed sticks, over toilet frames, shower stools, shower chairs, non-spill urinals, toilet seat raisers, surround toilet frames, wedge ramps, bed cradles and pickup sticks

Information and Resourcing

“ I shall work my way through the reading. Fantastic to have knowledge presented in such an organised fashion” Person with MND

Information remains a key and early element in our response to people living with MND, their families and carers, and to health professionals. Quality information and its application to individual circumstances is essential to get clients started on the right path – the path they wish to travel.

  • Formal events included the Hobart Health Professional Day, Annual General Meeting, and MND Week, including Day of Hope and the Ask the Experts.
  • Our first MND 101 Webinar, and online education session was held in conjunction with the MS Society.
  • Our Information nights for “Family and Friends” continue to attract excellent audiences and present fabulous opportunities to learn more about MND.
  • Group programs continue, with Living Well and Living Through being well supported.
  • A new program “Get Walking Get Talking” commenced as a new program for carers combining mild exercise, a part day out and an opportunity to talk about and share the caring experience.
  • We recorded and distributed a short video via Facebook with Dr Bradley Turner talking about Edaravone.
  • We undertook a presentation to staff from Magic Mobility.
457 Information requests by phone, 410 by email, 4951 Facebook page likes, 40,994 website visits.
INFORMATION 2016/ 16 2016/ 17
Information kits distributed 601 574
Community Awareness sessions 35 44
MND News editions/numbers 6/1600 6/1600 
Information Nights/Attendees 9/135 8/96
Health professional information sessions 20 9

Volunteers

“It is a privilege to be a volunteer with MND Victoria. It is an exceptional organisation” Volunteer

“Thank you, MND Victoria. What you are doing is amazing and should be recognised. To be a volunteer for such a great organisation is a great feeling” – comment from our Volunteer survey.

  • Our volunteer survey reinforced the value of volunteers to the support of people with MND, as well as the benefits of volunteering.
  • The annual volunteer recognition and celebration was held in Volunteer Week in May to recognise and thank our volunteers.
  • Volunteers provide huge support for the organisation, as well as for people living with MND.
  • Volunteers contributed 3,903 hours to support head office and administration in a wide variety of roles and tasks, including reception.
  • People with MND received 2,098 hours of support from volunteers, and support groups contributed a further 473 hours.
  • Special events were assisted by 391 hours from 89 volunteers – a fantastic effort to ensure that events like Living Well and the Walk to D’feet went well.
6865 hours contributed by volunteers, 133 active volunteers, 24 new volunteers, 25 volunteers attended training.
VOLUNTEERS 2015 /16 2016 /17
Number of hours contributed by volunteers 6,044 6,865
Number of active volunteers 127 133
Number of new volunteers 25 24
Number of volunteers attending training sessions 58 25
Number of hours contributed by support groups 638 473

Fundraising

“To share our passion and to deliver funds for care, support, equipment and research is our goal” Fundraiser

In the face of increasing competition for scarce funds, MND Victoria has continued to raise significant funds to provide and promote the best possible care and support for people with MND, and to
support research.

  • Donors have continued their long term engagement with the Association, but we have seen a 25% reduction in funds raised.
  • Fundraising – Independently Run Events (F-IRE) continue their significant support for research focussed events, including RockOFF MND ($200,481), 10th Annual Benalla Act to D’Feet MND and SuperBall X ($224,918), Steve Wallis MND Research Fund ($20,000) at the Australian International Air Show.
  • Sporting clubs continue to support their members who have been impacted by MND.
  • Challenge Events and organised Fun Runs provide awareness and last year raised $42,701.
  • Walk to D’Feet MND - almost 4,000 people took part in one of several Victorian Walk Events raising $338,474.
  • Trusts and Foundations contributed $145,858 to fund programs and equipment purchases.
  • Bequests continue the care and support activities of MND Victoria long after the donor has died, and contributed over $855,000. Bequest funds are invested in the MND Care Foundation with the interest being invested in care and support services.
  • Digital is the new face in fundraising and the Association is positioning itself to capitalise on this and other new mechanisms.
  • Fundraising costs remain low, with every dollar invested returning $6.32 – an excellent result given our increased underpinning of research events and investment in additional fundraising staff to support our community fundraising activities.
$1,00,106 was donated from bequests and trusts, $558,031 from unsolicited donations, $251,781 from donor development and $835,192 from the Walk to D'feet and other special events.
FUNDRAISING OUTCOMES BY ACTIVITY 2015 /16 2016 /17
Bequests and Trusts $336,794  $1,001,106
Unsolicited donations $688,889  $558,031
Donor Development $396,181  $251,781
Investments $308,074  $317,000
Merchandising $38,523  $31,175
Walk to D’feet and special events  $995,907  $835,192

Finance 

“To deliver what is needed; to fund what is provided, and to invest in care, research and sustainability” State Council

In a tight year for funding, with pressure from other organisations and changes in the level of Government support, NDIS and Aged Care, the Association has had a good trading outcome, and an audited financial loss after transfers to the MND Care Foundation.

  • The 2016/17 year resulted in a trading surplus of over $330,900, thanks to significant income from bequests of over $855,000. After transfers to the MND Care Foundation, we have recorded a loss of $706,019.
  • Growth in income from the NDIS continues as more people become participants, offset by transfers of former DHHS income to the NDIA. Income received exceeded $170,000 and is planned to grow in the coming year.
  • Fundraising strategies continue to be the strength of the Associations finances, although we raised over $400,000 less than last year. Self-reliance through fundraising, paid services and investment contributed 72% of total income.
  • Bequests contributed $855,248 and we continue our strategy of investing these funds via the MND Care Foundation to deliver income for service delivery. We ask that you consider leaving a bequest to the Association that will fund the fight against MND in the future.
  • We continue to support events that raise funds for research, and have contributed over $460,000 to MND Australia for research projects and for our own Nina Buscombe Awards for travel and conference attendance. Research funding accounted for 11% of expenditure.
  • Our focus remains on delivery of services with 83% of all expenditure being applied to services to support people living with MND and to research.
  • Income remains dependent on year to year activities, with strong reliance on the myriad of fundraising events both small and large, to continue funding care, support and research. We closely monitor expenditure, maintaining our focus on effective and efficient operations. There is a fine balance to ensure we have appropriate levels of funds available for services.
  • Administration costs remain low at 6%, but have and will increase in dollar terms due to higher monitoring and acquittal processes. We expect that our investment in a new Client Management System will offset some of these increases.
  • Audited accounts will be available from the Association’s office and website after they are presented at the Annual General Meeting.
  • The Association remains in a strong financial position, with adequate reserves to meet the challenges of the NDIS and Aged Care reforms. Our mission continues to provide and promote the best possible care and support for people living with MND.

Until there is a cure, …. there is care.

Income graph, figures in table to follow
INCOME 2015 /16 2016 /17
Recurrent Government $964,612 $934,458
Government Payments $264,999 $270,300
NDIS $116,762 $116,762
Donations $989,004 $410,574
Bequests $180,178 $855,248
Trusts $156,615 $145,858
Fundraising $1,462,828 $1,673,454
Other $168,742 $104,944
Total $4,303,740 $4,565,769
Expenditure graph, figures in table to follow
EXPENDITURE 2015 /16 2016 /17
Services  $1,815,457  $2,064,312
Aids and Equipment
(includes Capital)
 $1,104,916  $948,451
Fundraising  $373,248  $464,738
Research  $414,336  $462,400
Administration  $255,630  $273,641
Total  $3,963,587  $4,213,542

Our services are provided at no cost to the person with motor neurone disease. If you would like to support our work, please make a donation.