The friendly staff can provide people living with MND, their carers, families and friends, health professionals and service providers with guidance and information about:
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:
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 and attendance at specialised MND clinics and support groups.
People with MND are usually assigned to one advisor who will act as their guide and support person.
Some of the main activities of an MND advisor are:
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:
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:
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 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]
ACT client services via MND NSW
NT client services via MND NSW or MND SA