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

MND Advisor with client

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

WHAT WE STAND FOR

"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

Stadium stomp crew

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, developing better policy, practice and procedure, and linking people to other high quality
providers who can meet their needs, we help people live better for longer while fighting MND.

Our investment in research is aimed at finding cause, treatment and cure of MND.

This year,

  • The iCase client management system facilitates engagement with the National Disability Insurance Scheme and Aged Care reforms and is almost fully implemented, linking all facets of the organisation.
  • We ensured common practice and goals in negotiating and influencing government practice and policy through systemic changes by continuing our close and productive work with MND Australia and its members.
  • NDIS has become an increasing contributor to our services when people with MND choose MND Victoria as their preferred provider for Assistive Technology and Coordination of Support.
  • We supported 609 people living with MND with Assistive Technology, MND Advisors, information and resourcing and ongoing advocacy. We raised 77% of income through fundraising and fee for service via NDIS.
  • We 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 continued to actively monitor and review the Association and its focus on people living with MND, ensuring effective governance and delivering the organisation that its members want and need.
  • We invested over $434,000 in research, including funding 18 people to attend training and conferences to extend and share their knowledge about MND.
  • Four staff have resigned, and we thank Alia, Lesley, Babita and David for their service. Restructuring, growth, complexity and demand has seen our team grow, and we welcome Georgina, Deb, Sarah, Sandra, Fran, Melissa, Bec and Isabelle.

Success in our work is only achieved through our staff, volunteers and our partners, both formal and informal. We thank them for their energy, passion and commitment in the fight against MND.

David Lamperd President
Jeremy Urbach Treasurer
Rodney Harris CEO

STATE COUNCIL

(as at 30 June 2018)
David Lamperd* – Chairman
Katherine Barnett* – Vice Chairman
Jeremy Urbach* – Treasurer
David Ali
Duncan Bayly*
Chris Beeny
Barry Gunning
Jodie-Ann Harrison Fitzgerald*

SUPPORT SERVICES

"We are most thankful for all the services provided. MND Victoria has helped us cope with and manage this devastating disease." Carer

MND Advisor with client

MND Support Services deliver key services for people with MND helping them to access services and supports they need, live better for longer, remain active in their community and family, and to be safe in their environment.

  • Our MND Advisor Service in Tasmania continues to gain strength and we are examining opportunities to increase this service.
  • 212 Victorians and 25 Tasmanians diagnosed with MND registered with the Association for support.
  • 86 Victorians have active plans with NDIS and a further 34 are progressing through the pre-participant planning stage. In Tasmania, 3 have plans and 16 in pre-participant planning. Rollout of the remaining Victorian and Tasmanian clients will increase NDIS activity over the next 12 months.
  • Client survey results reinforce the value of the Association and its services. Information, MND Advisors and Equipment rating good to excellent by 83%, 88% and 80% of respondents respectively.
  • 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.
  • We are continuing our advocacy to Make Aged Care Fair for people with MND, working closely with MND Australia and MND NSW. This is a long term campaign.
  • iCase,our new client management system, continues its refinement and development, contributing to better information and improving services.
  • The health and well-being of our staff remains a high focus, and our external staff supervision program is highly valued by all participants.
  • We continue our relationships with service providers and organisations across Victoria and Tasmania to ensure that people with MND receive support from well trained, well supported organisations, aware of
    the impact of MND and the needs it creates.
  • We were advised of 186 deaths in Victoria and 18 deaths in Tasmania.

IN VICTORIA 609 people were supported by MND Victoria during the year:

 In Victoria: 2017-18 2016-2017
People with MND registered at 30 June 423 405
People newly diagnosed with MND 212 196
People with MND whose deaths were reported during the year 186 170
People living with MND supported during the year 609 575

IN TASMANIA 63 people were supported by MND Victoria during the year:

 In Tasmania: 2017-18 2016-2017
People with MND registered at 30 June 44 39
People newly diagnosed with MND 25 19
People with MND whose deaths were reported during the year 19 15
People living with MND supported during the year 63 54

MND ADVISORS

"Our advisors’ understanding of MND is vital in assisting us to make the correct decisions both for now and the future." Carer

MND Advisor with client

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

  • Our Keeping Connected program provides support and increases the effective use of MND Advisor’s time focussed on new clients, emerging and high unmet needs.
  • Demands and the scope of support provided for NDIS clients through Coordination and Support continues to grow, with 86 active plans in Victoria and 3 in Tasmania.
  • Lack of funding for pre-planning activities and support places increased pressure on staff but enhances outcomes for NDIS clients.
  • Lack of access to aged care packages and funding for assistive technology has increased our workload and significantly increased pressure on carers and older people with MND.
  • Regular meetings with NDIS planners in all rollout areas, as well as consultation meetings at a national level, are improving plan content, timing and initiation.
  • Planning undertaken for the year’s rollout of new areas improved our capacity to respond effectively to client needs. This was supported by the creation of two new MND Advisor positions.
  • Ten MND Advisors (six part time) in Victoria and one (part time) in Tasmania form the front line of the Advisor service, with regular ongoing review of staffing levels and client needs and demand.
  • One on one and information sessions for residential facilities and care providers ensures better understanding of MND and the needs it creates.
  • Intensive engagement with refinement of iCase is ensuring it meets our needs.
  • External supervision continuing supported and led by a consultant.

Hours delivered to clients by MND Advisors

Individual contacts with people living with MND

New members with MND

Reported deaths

8,847
VICTORIA
2016/17 - 10,288
8,134
VICTORIANS
2016/17 - 4,915
212
VICTORIANS
186
VICTORIANS
487
TASMANIA
2016/17 - 458
433
TASMANIANS
2016/17 - 186
25
TASMANIANS
19
TASMANIANS

 ASSISTIVE TECHNOLOGY

"The equipment service is excellent – you have always provided us with everything that we need. it is so helpful – thank you very much." Carer

Man in wheelchair with sheep in field

The MND Victoria Equipment Service has been successful and productive providing Assistive Technology (AT) to clients in a year of transition. We continue to provide and maintain aids and equipment to support their family, carer and social engagements with equitable provision of assistive technology at no personal cost.

  • Significant purchases of low cost items ensuring that requests can be completed very quickly.
  • Continue to work with all our offsite equipment managers to improve dispatch, retrieval and maintenance processes.
  • Transitioned to iCase allowing improved work flows, communication and reporting.
  • Non-retrievable low cost items program has been expanded to include more types of equipment to significantly reduce recovery and cleaning costs over time.
  • We have received several significant grants from Philanthropic Trusts and bequests from supporters which have allowed ongoing acquisition of new equipment.
  • An additional staff member has reduced request waiting times, improved responses for asset maintenance, repairs and other ad-hoc issues.
  • Volunteers provide invaluable support and backup in a range of important and necessary tasks.
  • Equipment consignments to locations outside metropolitan Melbourne are challenging in delivery time frames and costs. We are committed to providing equitable access to equipment across Victoria.
  • 104 NDIS participants have chosen MND Victoria to provide their AT requirements, most using our “bundle” offer. The bundle allows the Association to access funds early, reduce costs to NDIS and provide assistive technology during the plan period.

Total equipment purchases during the past year:

CATEGORY  ASSET TYPES...  ITEMS 
Bathroom Toilet seat raisers, over toilet frames, toilet surrounds, shower stools and chairs, mobile shower commodes 97
Bedroom Bedpans, urinals, bedsticks, bed cradles, pillow wedges, tables, electric bed, pressure reduction mattress 72
Communications iPads, call bells, switches 76
Daily Aids Handy bar, pickup reachers, flexible and clamp on mounts 21
Furniture Armchairs (electric lift / recline), lounge chairs 18
Mobility Crutches 69
Pressure ROHO and Memory foam pressure cushions 43
Transfer Slings 2
 TOTAL PURCHASES  398

 

258 new clients receiving equipment 361 clients with equipment
1,350 requests for equipment
2,582 PROVIDED
2,281 RECOVERED
604 major equipment repairs

INFORMATION AND RESOURCING

"MND Victoria has a large accessible bank of knowledge, resources and experience." Carer

Volunteers packing newsletters for mailing

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 Bendigo Health Professionals’ Day, Annual General Meeting and MND Week, including Day of Hope and Ask the Experts.
  • Our second MND 101 Webinar, an online education session, was held in conjunction with the MS Society.
  • The Bendigo Health Professionals’ Day brought together over 100 people and featured presentations from Calvary Health Care Bethlehem, Austin Health, Bendigo Health and Goulburn Valley Health, with strong and appreciative feedback from attendees.
  • A health information session was presented in Echuca, assisted by local allied health providers, and at Banksia Palliative Care for their friendly visiting volunteers - both highly successful.
  • Our “Information nights for Family and Friends”, held every six weeks, continue to attract excellent audiences and present fabulous opportunities to learn more about MND.
  • A presentation with Dr Bradley Turner (Florey) to 30 University High students was a huge success. The teacher said “Massive thank you for today – the kids have not stopped talking about brains, research and how crap it would be to have MND. They got so much from the experience”.
  • “Get Walking Get Talking” continued as a program for carers combining mild exercise, a part day out and an opportunity to talk about and share the caring experience.
  • New mobile friendly website launched February 2018.
  • Multiple posts regarding MND Victoria’s position on Voluntary Assisted Dying – that we support patient’s rights in all things that are lawful – was well received. Our goal is to ensure that whatever rights are created for people in Victoria, those rights are usable by people with MND.
Information 2016-17 2017-18
Information kits distributed 574 539
Community Awareness sessions 44 35
MND News/Editions 6/1600 6/1500
Information nights/attendees 8/96 9/227
Health Professional information sessions 9 9

VOLUNTEER SERVICES

"Volunteering has given my life another sphere. It has shown me the strength of those who suffer, the love and strength of families who support them." Volunteer

China trek participants sitting on Great Wall of China

MND volunteers continued to provide essential and valued services supporting and enhancing the work of the association throughout a busy year which included many changes within the organisation. The ongoing commitment and contributions of our volunteers has been greatly appreciated.

  • Approximately 130 volunteers have provided ongoing commitment to a wide variety of roles through 2017-2018.
  • Volunteers in their local communities support events such as local fundraising and walks across the state. This recognises the impact of MND on communities and the respect and support MND Victoria gains from services provided for people living with MND.
  • Volunteers provide care and support to clients. The Hand and Foot Massage and Life Story Programs continue to be popular. Our Bereavement Call Volunteers provide connection and support for people who have lost loved ones to MND.
  • MND Victoria is committed to supporting and recognising the contributions to the work of the association provided by our volunteers.
  • Regular team meetings and development sessions provide opportunities for volunteers who often work alone in the community, to come together to share experiences and continue to develop their
    skills and knowledge relevant to their roles.
  • Our monthly Volunteer Update newsletter helps keep volunteers up to date and connected with the work of the association.
  • During National Volunteer Week in May with a theme of “Give a Little – Change a Lot”, our annual volunteer recognition and celebration event at the MCG brought together 45 volunteers and was
    an opportunity to thank all of our volunteers and recognise the service of long-term volunteers.
  • We have recruited volunteers with a breadth of skills and experience which complement and enhance the work of staff. We have developed volunteer roles to support and assist our growing social media
    and online communication strategies.
  • We will continue to look to develop roles for volunteer involvement.

Give a little – change a lot

Number of hours contributed Number of active volunteers Number of volunteers attending training Number of new volunteers Hours contributed by support groups
5,313 131 23 19 164
2016/17 - 6,865 2016/17 - 133 2016/17 - 25 2016/17 - 24 2016/17 - 473

FUNDRAISING

"Just knowing they are there, is most important." Person with MND

Walk to D'feet MND, Melbourne participants 

Competition in fundraising continues to increase and is particularly intense in funding for MND. Overall fundraising income was approximately 5% higher than last financial year. This is a good result and continues to support the Association’s mission – to provide and promote the best possible care and support for people living with MND.

  • Fundraising – Independently Run Events (F-IRE) has seen a significant downturn in events being run. Schools and sporting clubs continue to support their members who have MND.
  • Research events are well established with the Benalla Act to D’Feet MND, SuperBall XI and RockOff MND and other research donations raising $374,000. These funds are invested by MND Australia in the best of the best Australian researchers.
  • China Walk to D’Feet MND was an outstanding success raising a total of $111,000, $67,000 in this financial year. We seek to capitalise on the trend of people combining major challenge/bucket list items
    with fundraising for a cause.
  • Walk to D’Feet MND – Seven walks - Lakes Entrance, Rosebud, Melbourne, Bendigo, Benalla, Violet Town and Geelong – promoted MND and increased Walk income by almost 10%. The 2018/19 year sees the introduction of the Echuca Walk.
  • Income from Appeals and Donor Updates was up 17% but is still well below the income received in 2015/16 financial year.
  • Trust and Foundation income rose by almost 90% and contributed $204,795 to fund programs and equipment purchases.
  • In Memory Donations - there is a trend for families to nominate other organisations as donation recipients in lieu of flowers. A large In Memory donation received in June resulted in our In Memory donations
    contributing $184,505.
  • Bequest gifts contributed 17% to our income and continue to underpin care and support activities long after the donor has died. Bequest funds are invested in the MND Care Foundation with the interest being invested in care and support services.
  • The Association extended our investment in the digital fundraising space, improving returns in our recent Appeal from 4% in 2016/17 to 20% in 2017/18. We will continue to develop this fundraising avenue.
  • Increased support for our F-IRE events and enhanced digital presence by increasing the Fundraising Officer role to full time and adding a part-time Digital Communications Officer. While increasing our
    fundraising costs we managed our expenses to return over $6.00 for every dollar invested.
Bequests and Trusts Unsolicited donations Donor development Walk to D’Feet and special events
$756,898
2016/17 - $1,001,106
$650,777
2016/17 - $558,031
$556,737
2016/17 - $251,781
$873,366
2016/17 - $835,192
Investments $349,525
2016/17 - $317,000
Merchandising

$77,179
2016/17 - $31,175

FINANCES

"To deliver what is needed, to fund what is provided, and to invest in care, research and sustainability." State Council

Researcher in laboratory showing work to carer

In a year of increased competition, NDIS rollout and changes, the Association has had a good trading outcome, and an audited financial surplus after transfers to the MND Care Foundation.

  • The 2017/18 year resulted in a trading surplus of over $850,828, with significant income from NDIS and bequests. The audited financial statements will report the final outcome for the 2017/18 year.
  • NDIS income continues to grow, with over $822,800 (16% of income) generated as more people become participants. Most importantly, more people are receiving services that address their needs than from previous funding strategies.
  • Fundraising continues to underpin the Association’s finances, and fundraising, paid services and investment contributed 77% of total income.
  • Bequests contributed $548,783. We invest 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 and until a cure is found.
  • We continue to support events that raise funds for research, and have contributed over $434,000 to MND Australia for research projects and for our own Nina Buscombe Awards for travel and conference
    attendance. Research funding accounted for 10% of expenditure.
  • Our focus remains on delivery of services with 82% of all expenditure being applied to services to support people living with MND and to research.
  • Income remains dependent on year to year activities to continue funding care, support and research, with strong reliance on the myriad of fundraising events both small and large. 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 5%, but have and will increase in dollar terms due to higher monitoring and acquittal processes. The new Client Management System has facilitated better allocation
    of “back of house” costs to the appropriate cost centre, and assisted in understanding the true cost of service provision.
  • 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’s a cure ... there’s care.

"Just keep doing what you do – knowing you are there when we need support is very comforting." Carer

Income graph, details in table to follow

Source Income
2016-17
Income
2017-18
Government $1,204,758 $1,185,714
NDIS $170,933 $822,800
Donations $410,574 $647,521
Bequests $855,248 $548,783
Trusts $145,858 $208,115
Fundraising $1,673,454 $1,725,890
Other $104,944 $109,162
Total $4,565,769 $5,247,985

Expenditure graph, details in table to follow

Area Expenditure
2016-17
Expenditure
2017-18
Services $2,064,312 $2,160,706
Assistive Technology (includes capital) $948,451 $1,058,239
Fundraising $464,738 $570,740
Research $462,400 $434,241
Administration $273,641 $244,153
Total $4,213,542

$4,468,079

 


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