We provide services and support to anyone impacted by MND
MND impacts not only on those with the diagnosis, but also on spouses, carers, parents, children, the extended family, friends, workmates and service providers. Membership of the Association is free for people with MND, and $20 per year for other interested people.
Support Services are provided at no cost to the person living with MND and their family. People with MND can decide their own preferred level of involvement. For example, initially they may wish only to receive our MNDNews newsletter, or they might find it useful to meet with a local MND Advisor, who can visit at home, provide information about support services in the area, and assist in linking into those services if required.
People diagnosed with MND under the age of 65 are required to register with the NDIS to be able to receive funding for services from MND Victoria and other service providers they may choose. MND Victoria can assist with this process if necessary. Information about NDIS and the registration process are available through MND Victoria.
MND Victoria Support Services provides:
- Information about MND and support services
- Needs assessment and referral to service providers e.g. attendant care, nursing, speech pathologists, occupational therapists, physiotherapists
- Equipment loan and/or referral to other agencies for equipment
- Advice regarding pensions and other benefits
- Access to a network of Support Groups and Programs
- Sharing of experiences found beneficial by others, through discussion groups
- Volunteer services
If you would like to discuss or register for MND Victoria’s Support Services, please contact us by calling 9830 2122 or emailing firstname.lastname@example.org.
MND Victoria came into existence on 13 October 1981 (initially as the Motor Neurone Society of Victoria) at a meeting attended by a small group of people with MND and their families, staff of health and welfare groups, and other concerned people.
MND Victoria is governed by a State Council of twelve members of the Association of whom six must be people with MND, carers or close associates. MND Victoria is managed by a Chief Executive Officer and staff. Professional staff are employed to deliver services to people with MND, their families, community workers and health professionals. A generous and dedicated group of volunteers assist staff to conduct the Association's activities and the provision of services.
Support groups provide local help in both country and metropolitan areas. People can contact MND Victoria for the location of their nearest group and the dates and times of meetings.
The Victorian Association has regular contact with similar organisations in other States through the Motor Neurone Disease Association of Australia (MNDA), which serves as a forum for national communication and cooperation, and with other countries via the International Alliance of ALS/MND Associations. Member organisations participate in a national MND Awareness Week in May each year.
Membership of MND Victoria is available to people with MND, their carers, families and other interested people. Membership is free for people diagnosed with MND.
Most people with MND are cared for at home. MND Victoria assists people with MND, their carers, family and friends through Support Services.
MND Victoria Support Services provide four key services at no cost to service users
All requests for support made by or on behalf of people diagnosed with MND will be accepted providing the support and services requested form part of MND Victoria’s suite of services.
1. MND Advisors & Support Coordinators
MND Advisors and Support Coordinators navigate the service system with people living with MND to ensure they are linked into services that will best meet their needs. They work in defined locations to enable them to develop expert understanding of the services in their region.
MND Advisors and Support Coordinators meet with newly diagnosed people and their families at home to provide information about the disease, offer advice and support and assist with planning to address their specific service and support needs. They help people to navigate both the National Disability Insurance Scheme (NDIS) as Support Coordinators and My Aged Care (government funded bodies) to help clients connect to the services they need, such as attendant care, nursing, speech pathology, occupational therapy and physiotherapy.
They offer on-going support and advice to families and community service providers as questions or needs arise. MND Advisors and Support Coordinators also advocate on behalf of people living with MND and provide information, training and advice to agencies and government departments to ensure that the best possible care and support is available. All MND Advisors and Support Coordinators are qualified health professionals.
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2. Education & Client Support
The Education and Client Support Service researches, collects and disseminates information about motor neurone disease and the care and support of those who have motor neurone disease. Information, in a variety of formats, is provided to people diagnosed with MND, family members, friends, general practitioners, allied health professionals and all service providers involved in the care and support of a person with MND.
The Education and Client Support Service is the first point of contact for new clients.
Information and Education sessions are offered regularly for families, carers and friends. In addition, staff and volunteers seek opportunities to participate in public speaking events to raise awareness of MND with service providers and the community. MND Victoria also provides/organises training and information for service providers and health professionals and manages and presents an annual MND Awareness Week.
The MND Victoria Newsletter is produced regularly and distributed to all clients and members and other interested persons upon request.
A range of group programs are offered to support people living with MND based on their requests and requirements. People find that sharing experiences with others through discussion groups can be very beneficial. The group programs are facilitated by trained staff and/or volunteers and may be conducted in person or via telelink.
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3. Equipment Service
A selected range of commonly used assistive technology is available on loan, at no cost to the person living with MND and on request from an allied health professional to people who are registered clients living independently in the community. Items can be borrowed for as long as they are needed and are directly delivered to and retrieved from the person’s home.
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4. Volunteer Programs & Service
An extensive network of trained volunteers underpins all MND Victoria’s activities. Approximately 130 volunteers are involved in group facilitation, support groups, telephone and bereavement support, home visiting programs including massage, hairdressing and life stories, administration and fundraising.
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Through donations and the fundraising activities of its members, MND Victoria supports research into the causes, cure and management of MND both directly and via Motor Neurone Disease Research Australia (MNDRA).
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MND Victoria is primarily supported by its own fundraising activities and fee for service support through the NDIS. Grants from the State Government Department of Health and Human Services and the Commonwealth Home Support Program also support the work of the Association. Other funds are raised through donations, raffles, merchandise, bequests, support from service clubs and from philanthropic trusts and company sponsorship. Donations are tax-deductible.