MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

State MND Association services

The friendly staff can provide people living with MND, their carers, families and friends, health professionals and service providers with guidance and information about:

  • MND Association services
  • accessing assistive technology from the MND Associations
  • MND education sessions, resources & information
  • support groups, including groups for carers
  • other supportive community services, programs and packages

Please feel free to call the MND Info Line on 1800 777 175 Monday to Friday 9am to 4.30 pm Australia wide to talk to someone who understands MND. The friendly staff can provide people living with MND, their carers, families and friends, health professionals and service providers with guidance and information about:

  • MND
  • the MND association services
  • other supportive community services, programs and packages
  • MND education sessions
  • MND resources and literature
  • MND learning / peer support events
  • How to access assistive technology from the MND association 
  • Support groups
  • Supports for carers

The MND associations employ MND advisors, usually with a health or disability related qualification, to provide specialist information and support to people living with MND. This is delivered through home visits, phone contact, via remote technology and attendance at specialised MND clinics and support groups.

The MND advisors act as both a guide and support person for people with MND and their family.

Some of the main activities of an MND advisor are:

  • provide up to date and accurate MND information to people with MND, their carers, families, health professionals and service providers 
  • facilitate access to local multi-disciplinary health care teams and help to smooth their client’s access to health services
  • support clients to navigate their local support services and help with referral to the right service at the right time 
  • facilitate access to a wide range of aids and equipment
  • support clients 65 years and older to navigate the My Aged Care System
  • support clients under 65 years to prepare for their NDIS plan

Support coordinators work with MND clients who are NDIS participants (under 65 years) and assist them with putting their National Disability Insurance Scheme (NDIS) plan into action. Coordinators have knowledge and expertise in the coordination of support for people living with motor neurone disease (MND).

Your support coordinator or coordinator of supports (COS) works with you to:

  • conduct a needs assessment and support you in carefully setting up your plan
  • ensure your plan runs smoothly
  • think ahead to look for potential gaps or improvements in your plan
  • build your awareness about what services are available and can help 
  • support negotiations with government staff about changes you may want with your plan.

MND support coordinators are funded via your NDIS plan, but they are employed by your MND association and therefore have specialist MND knowledge and experience.

Some associations employ occupational therapists (OTs). If your state association doesn’t employ an OT in your state they will help you to access OT services via a service local to you.

OTs support individuals to be as independent as possible and find ways to support their day to day activities as their abilities change. OTs can assist with a range of things that include:

  • assessing the home environment to determine if home modifications are required, and if they are, what would work best
  • assessing an individual's abilities around activities of daily living and work to find way to support these activities
  • prescribe safe and suitable assistive technology (aids and equipment)
  • help with accessing assistive technology funded through the NDIS, Aged Care, state government programs or the MND association  
  • set up equipment and train people how to use it.

People with MND often require special aids and equipment, referred to collectively as assistive technology (AT), to support their daily activities. AT can include walking frames, electric wheelchairs, beds, hoists, voice amplifiers, computer systems and other devices which can help to better manage MND, as well as improve quality of life, communication, carer safety and independence.

The MND associations help clients with MND to access the AT they need, when they need it. Your needs will change as MND progresses, and you will find ways of using AT to manage life with the disease.

OTs help to find the most useful equipment by carefully assessing a person’s needs, and then prescribing safe and effective AT to best support their daily living.

MND associations can help you to access OT services near you. You can also access assistive technology from the MND associations. The MND associations have tried and tested AT available for loan, at little or no direct cost to the person with MND. Call your MND association to learn more.

MND support groups provide a safe and friendly place to meet and talk with people with lived experience of MND. Support groups can help reduce feelings of isolation and provide a network of people who support and learn from each other. There are MND support groups available in most states and territories.

Groups usually meet regularly. Sometimes groups have a guest speaker, or simply provide an opportunity to talk with others going through a similar experience. 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.

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: [email protected]      
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: [email protected]
www.mndnsw.asn.au

ACT client services via MND NSW
NT client services via MND NSW or MND SA
 

MND Victoria     
265 Canterbury Rd, Canterbury Vic 3126
Post: PO Box 23, Canterbury 3126
T: 1800 806 632 or (03) 9830 2122
E: [email protected]
www.mnd.asn.au
 

MND Tasmania (client services via MND Victoria)
Post: PO Box 379, Sandy Bay TAS 7006
T: 1800 806 632
E: [email protected]
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: [email protected]    
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: [email protected]
www.mndawa.asn.au