This information is for health professionals and service providers.
Access to assistive technology to meet a person's individual needs is vital to maintaining independence and quality of life. Early availability and adoption of assistive technology can also prevent injury to the person with MND and support the safety and well-being of the carer.
Assistive technology for people living with MND includes aids and equipment to support activities of daily living, communication and breathing.
Needs may change quite quickly and therefore regular review of daily living, communication and respiratory needs is essential and should be a key part of multidisciplinary care and assessment.
There is a wide range of aids and equipment available to support activities of daily living and comfort for people living with MND. See Muscle weakness and pain section for information on the impact of MND on the muscles of movement and susequent impact on activities of daily living, independence and comfort.
Before decisions are made regarding specific assistive technology (AT), it is essential that accurate assessment be carried out. Assessment should be undertaken by an occupational therapist, physiotherapist, speech pathologist or nurse, depending on the area of expertise and the availability of professionals in any particular locality, to ensure the AT is provided to meet the identified need for that individual.
Occupational therapists will be able to assess people for most types of assistive technology to support activities of daily living.
It is important to be aware that needs may change rapidly with a consequent need to review assistive technology needs on a regular basis. It is also important to ensure that training and support is provided to the person living with MND, their carer and relevant service providers in the use of the items provided and to assist with set up, encourage use and prevent injury.
The MND Association in each state/territory is able to advise GPs and other health professionals and service providers regarding local sources of supply of AT which will enable people living with motor neurone disease to enjoy the best possible quality of life.
MND Associations also have a range of AT available, usually at no cost to the person with MND, following a referral from the relevant health professional.
For people who are NDIS participants funding for AT will need to be included in their NDIS plan following allied health assessment. The person can elect to fund ‘a bundle’ of AT for an annual fee or hire individual items from their MND Association. Individualised items of equipment such as a specialised wheelchair will need to be funded separately by their NDIS plan and sourced from an equipment supplier. An overview of the NDIS and Assistive Technology is available here.
People aged 65 years or older not eligible for the NDIS can access AT from the MND Association and/or purchase or rent smaller items through their Home Care Package.
As people approach end of life AT to support care at home such as electric beds, tilt in space shower commode chairs and pressure relieving mattresses may be available through local palliative care services.
A range of assistive technology can be viewed at Independent Living Centres (ILCs) which operate in every state/territory.
The MND NSW FlexEquip website outlines the process for access and the types of AT available from MND Associations.
Assessment by a speech pathologist will determine the most suitable Augmentative and Alternative Communication (AAC) aids and equipment for each individual. Occupational therapists can also be involved in assessment and set up of communication aids.
Maintaining communication for people living with MND is vital to their health, social and psychologcal well-being and in supporting decison making, choice and control. It is also vitally important for their carer and the maintenence of relationships with family and friends.
As outlined on the Dysarthria & communication pages more than 80% of people with MND will experience communication difficulties at some point in the disease trajectory. In addition there are many factors that may impact on a person's ability to communicate, further highlighting the importance of careful assessment and regular review. The speech pathologist will need to work with other members of the multidisciplinary team, the person living with MND, their carer and service providers to ensure a person centred approach to maintain and support communication. Early intervention is important in ensuring the person living with MND and their carer are introduced to options such as voice and message banking before speech is impacted.
There is a wide range of AAC devices available and the development of techology available to people living with MND continues to gather pace.
Low tech Augmentative and assistive communication (AAC) devices:
High- tech Augmentative and assistive communication (AAC) devices:
Over the last few years there have been significant developments in MND-related AAC including:
It is important to be aware that needs may change rapidly with a consequent need to review AAC needs on a regular basis.
Some states have specialised communication services which specialise in AAC and have the expertise, materials, software and equipment to help people with complex communication needs get personalised, high quality communication aids.
The MND Association in each state/territory is able to advise GPs and other health professionals and service providers regarding local sources of supply of AAC which will enable people living with motor neurone disease to maintain communication.
MND Associations also have a range of AAC devices available, usually at no cost to the person with MND, following a referral from the relevant health professional.
For people who are NDIS participants funding for AAC that is reasonable and necessary can be included in their NDIS plan following allied health assessment. An overview of the NDIS and Assistive Technology is available here.
For people aged 65 years or older not eligible for the NDIS some AAC devices may be available from the MND Association and/or they may be able to purchase or rent smaller items through their Home Care Package.
A range of communication aids can be viewed at Independent Living Centres (ILCs) which operate in every state/territory.
The MND NSW FlexEquip website outlines the types of communication, computer access and environmental controls available from MND Associations.
Evidence supports the use of non-invasive ventilation (NIV) to improve quality of life and meaningfully prolong life. Symptom control using NIV is often sustained for many months or years. See Respiratory management and NIV
A respiratory physician will need to assess the person in order to prescribe the appropriate NIV machine and settings for that individual.
NIV is delivered via a mask usually at night initially and then as required during the day as MND progresses. People living with MND are usually prescribed variable positive airway pressure (VPAP) or bi-level positive airway pressure (BIPAP) machines due to the lower level of pressure applied when exhaling. These machines can be adjusted to provide increased respiratory support if needed.
AT to support breathing via non-invasive ventilation includes masks, tubing and the NIV machine.
It is important to be aware that needs may change rapidly with a consequent need to review respiratory support needs and machine settings on a regular basis. It also important to ensure that the person living with MND, their carer and any relevant service providers are trained in the use of NIV and have access to back up options in the event of a power failure.
NIV equipment may be available through a person's MND Clinic or respiratory service.
In 2019 an agreement between Commonwealth and State and Territory governments was announced for the NDIS to fund a range of disability-related health supports where they are part of the participant’s daily life and result directly from the participant’s disability. Consequently people living with MND who are NDIS participants can have funding for NIV included in their NDIS plan following a respiratory assessment.
We can never undertake another RCT of NIV versus no NIV, but the data from the five cohorts clearly indicate that NIV increases survival if you can use it, and emerging preclinical data may suggest that NIV is disease modifying per se. The challenge is to both increase uptake of NIV from clinician prescription through to patient use and family support and to drive comprehensive clinical and basic science partnerships that fully explore how and where the prescription of NIV sits in the disease process Berlowitz and Sheers 2021).