The national network of State MND Associations offers support for people affected by motor neurone disease across Australia.
There are MND Associations in Queensland, New South Wales, Victoria, South Australia, and Western Australia. MND Victoria offers services in Tasmania, while MND NSW covers the ACT and Northern Territory.
Each state MND Association offers a different range of services to people with MND, their carers, family and the professionals who support them.
Some of the key services include:
- MND education and training
- MND information resources
- support accessing equipment (assistive technology or AT)
- support groups
- support and guidance around navigating the healthcare and government services.
The state Association teams are a diverse group of professionals who can guide and support you.
To find out more about MND and available services, contact the MND Info Line on 1800 777 175. When you call this number, you will speak to someone at your local Association. The Info Line service is free and available to all callers nationwide. The Info Line operates Monday to Friday from 9am to 4.30pm across Australia.
We have included some more information about the common services in the sections below.
MND Queensland
1/89 Factory Road, Oxley QLD 4075
Post: PO Box 470, Inala QLD 4077
T: 1800 777 175 or (07) 3372 9004
E: info@mndaq.org.au
www.mndaq.org.au
MND New South Wales
Building 4, Gladesville Hospital, Victoria Road, Gladesville NSW 2111
Post: Locked Bag 5005, Gladesville NSW 1675
T: 1800 777 175 or (02) 8877 0999
E: infoline@mndnsw.org.au
www.mndnsw.org.au
MND Victoria
265 Canterbury Rd, Canterbury Vic 3126
Post: PO Box 23, Canterbury 3126
T: 1800 777 175 or (03) 9830 2122
E: info@mnd.org.au
www.mnd.org.au
MND Tasmania (client services via MND Victoria)
Post: PO Box 379, Sandy Bay TAS 7006
T: 1800 806 632
E: info@mndatas.asn.au
www.mndatas.asn.au
MND South Australia
66 Hughes Street, Mile End SA 5031
Post: PO Box 2087 Hilton Plaza SA 5033
T:1800 777 175 or (08) 8234 8448
E: admin@mndsa.org.au
www.mndsa.org.au
MND Western Australia
Unit 1, 184 Raleigh Street, Carlisle WA 6101
Post: as above
T: 1800 777 175 or (08) 6186 4133
E: admin@mndawa.asn.au
www.mndawa.asn.au
ACT client services via MND NSW
NT client services via MND NSW or MND SA
The MND advisors are employed by the state MND Associations to act as both a guide and support person for people with MND and their family.
MND advisors usually have training in health or disability and provide specialist information and support to people living with MND. They provide support to people through home visits, calls, and emails. They also often attend MND clinics and support groups.
MND advisors:
- provide information about MND
- arrange access to local multidisciplinary healthcare teams
- support people to find their way to local support services
- help people plan for future needs
- help people access a wide range of aids and equipment
- support clients with accessing the My Aged Care or NDIS systems
MND support coordinators are funded via your NDIS plan but are employed by the state MND Associations to act as both a guide and support person for clients with MND who are under 65 years.
Coordinators have knowledge and expertise in MND and organising services for people. In some states, they are referred to as a coordinator of supports (COS).
Your MND support coordinator or coordinator of supports (COS) works with you to put your National Disability Insurance Scheme (NDIS) plan into action, by:
- undertaking a needs assessment
- supporting you in setting up your plan
- working to ensure your plan runs smoothly
- helping you plan for future needs
- ensuring you are aware of available services
- supporting your negotiation with the NDIS
Some MND Associations employ allied health professionals, such as occupational therapists (OTs) or physiotherapists.
In other states your Association can assist you to access allied health services via your local health services as needed.
Physiotherapist (physio)
A physio helps you maintain physical activity and mobility. Physiotherapists can show your family or carer how to safely help you move from one position to another, for example, moving from a chair to a bed. A physiotherapist can also help with techniques to support coughing and breathing.
Occupational therapist (OT)
An occupational therapist helps to support mobility, function and independence. OTs provide advice about home modification, different ways of performing tasks and how to select, obtain and adapt specialised equipment.
People with MND often require special aids and equipment to support their daily activities. Equipment is also known as assistive technology or AT.
AT includes a range of devices that help you to manage day to day. It can improve quality of life, and enhance communication, carer safety and independence.
Common types of AT include:
- walking frames
- electric wheelchairs
- beds
- hoists
- communication devices
People’s needs will change overtime as MND progresses. The MND Associations help people to access the AT they need when they need it.
MND support groups offer a safe and friendly place to meet and talk for people living with or impacted by MND. The groups vary but can be face to face or online.
Support groups can help reduce feelings of isolation. They also provide a network of people who support and learn from each other. There are MND support groups in most states and territories.
Groups usually meet on a regular basis. Sometimes groups have a guest speaker, or simply offer a chance to talk with others. Normally there is a person who coordinates a group.
Your MND Association can help direct you to a group coordinator or your local support group.
Sources
Information on this web page is based on evidence and information from the National MND Support Service Model, published by MND Australia, 2020.
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