Thank you for your request for information about motor neurone disease (MND). We trust that you will find the information useful and informative. MND Victoria (the Association) is for everyone who is living with MND, whether directly involved or not. MND impacts not only upon those with the diagnosis, but also upon 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 to 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. Alternatively, 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.
Since 1 July 2013, people diagnosed with MND under the age of 65 and living in the City of Greater Geelong, Borough of Queenscliffe, Colac-Otway and Surf Coast Shires are required to register with National Disability Insurance Scheme (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 any of the enclosed information or register for MND Victoria’s Support Services, please contact us on:
Tel: (03) 9830 2122
Freecall: 1800 806 632 (from rural areas)
You can also visit our office at 265 Canterbury Road, Canterbury.
Our office hours are 9am-5pm Monday to Friday.
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MND Victoria Fact Sheet
MND Victoria is an organisation dedicated to the support of people living with motor neurone disease (MND).
Working towards a world without MND.
To provide and promote the best possible care and support for people living with MND.
• To provide the best possible care and support for people living with MND
• To collect and share the best available advice on living with MND
• To create and foster links between people living with MND by providing opportunities for interaction
• To raise awareness of MND and the needs it creates
• To develop and maintain relations with MND Associations within Australia and overseas
• To foster and maintain links that help us achieve our mission
• To encourage and support research initiatives and disseminate knowledge of research progress
• To achieve our mission through innovation and influence.
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.
Direction of MND Victoria is 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), an umbrella group that 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, which is held 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 three 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
MND Advisors navigate the service system for people living with MND to ensure that they are linked in to 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 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 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 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 are qualified health professionals.
2 - Information Service
The Information Service researches, collects and disseminates information about motor neurone disease and the care and support of those who have motor neurone disease. Information 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, in a variety of formats including via the telephone, in person, printed material, Internet, DVDs and group meetings. Information about related issues, such as advice regarding pensions and other benefits is also provided.
Information 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 based on the requests and requirements of people living with MND are offered to support people living with MND. 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.
3 - Equipment Service
A selected range of commonly used equipment is available on loan, at no cost and on request from their therapist to people with MND who are registered clients living independently in the community. Items can be borrowed for as long as they are needed and are delivered and retrieved free of charge.
Volunteer Programs & Service
An extensive network of trained volunteers underpins all MND Victoria’s activities. Approximately 100 volunteers are involved in group facilitation, support groups, telephone and bereavement support, home visiting programs including massage, hairdressing and biography, administration and fundraising.
Through donations and the fundraising activities of its members, MND Victoria supports research into the causes, cures and management of MND via the Motor Neurone Disease Research Institute of Australia (MNDRIA).
MND Victoria is primarily supported by its own fundraising activities and in part by grants from the state Government through the Department of Human Services and Health. Other funds are raised through donations, raffles, merchandise, bequests, support from service clubs and from philanthropic trusts and company sponsorship. Donations are tax-deductible.
Address: 265 Canterbury Road (PO Box 23), Canterbury, Victoria 3126
Telephone: (03) 9830 2122 Freecall: 1800 806 632 Fax: (03) 9830 2228
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