This information is for health professionals and service providers.
Access to support and services to meet a person's individual daily living needs is vital to maintaining independence and quality of life.
Delays in accessing services, in the face of progressing and changing needs and a limited life expectancy, can have a significant impact on the person with MND, their carer and family.
Early referral is therefore essential as there may be waiting times for assessment and access. Needs may change quite quickly and therefore regular review and assessment of daily living needs is essential and should be a key part of a person's care plan.
Supporting the person living with MND and their family to start to think about financial planning early on is an important part of the planning ahead process. Most people will be unaware of the support available and their options regarding early release of insurance and superannuation following a diagnosis of a terminal condition.
General financial advice is available from a range of non-government sources such as financial advisers, banks and self-funded retiree associations.
There are a number of pensions, allowances and benefits available from the Australian Federal Government for people who are aged or disabled and their carers:
Information on these benefits is available from a range of organisations and websites:
Referral to a social worker to talk through the options available for the individual early on will help people to feel more in control and more informed. A social worker can also support the person and their carer to think about appointing a power of attorney and organising other financial, legal and personal affairs. Refer also to Psychosocial support in MND and planning ahead and decision making.
The MND Association MND Advisor or Support Coordinator can also assist the person and their family to start discussions and provide information as and when they are ready. Information to support people to plan ahead is available in the Government support & benefits section of this website.
The End of Life Care: A guide for people living with MND and the Planning Ahead Fact Sheet are designed to help people living with MND and their carer to ‘step through’ the planning ahead process and may be useful resources for health professionals and service providers.
Most people with MND will prefer to be cared for at home throughout the disease trajectory. It is therefore important that they are able to access services to support them to maintain their independence and quality of life in their own home in a timely manner.
People living with MND need access to early intervention, specialised planning, ongoing expert assessment, complex support coordination, assistive technology and a range of services to meet their needs. Ongoing review of daily living needs is essential as the needs of the person with MND can change quite quickly because MND is progressive.
MND Associations play a vital role in linking people to services and support and advocating on behalf of the person with MND and their carer to ensure timely access. MND Associations also provide information and training to the health professionals and service providers involved in caring for people living with MND. Understanding MND and its impacts is imperative for health, aged and disability providers involved in planning and assessing the future needs of an individual with MND.
In Australia there are two forms of government funded home support that people with MND can access - the National Insurance Disability Scheme (NDIS) and My Aged Care. Access and eligibility to these schemes depends on the age of the person.
Approximately 40% of the 2,100 Australians living with MND are diagnosed when under the age of 65 and 60% at age 65 or older. MND Australia has consistently advocated for access to the NDIS for all people with rapidly progressing neurological conditions no matter how old they are when diagnosed.
People aged under 65 with a diagnosis of MND are entitled to access the NDIS for a range of services and supports to meet their reasonable and necessary needs. People who have an NDIS plan in place can choose to continue as an NDIS participant when they turn 65.
Services provided through the NDIS for people living with MND includes support coordination, personal care, allied health assessment and support, home modifications and assistive technology to support independence, comfort and communication and non-invasive ventilation to support breathing and quality of life.
Early access to the NDIS and a fast-tracked assessment and planning process following diagnosis is crucial for people aged 64 or younger. Any assessment process needs to take into account the complex and progressing nature of MND to ensure the development of plans that will meet the needs of the person with MND in the coming weeks and months to support their choice and control. Regular plan reviews undertaken in a timely manner are also needed for people with a diagnosis of MND.
MND Association Advisors assist people living with MND to access the NDIS and prepare for their NDIS plan and plan reviews. They are also able to provide information and training to professionals and providers providing NDIS funded supports to people living with MND. Contact details for the state based MND Associations are available here or call the MND Info Line 1800 777 175.
MND Australia and members the state MND Association advocate nationally and locally on behalf of the MND community to promote access to an NDIS that will meet the needs of people living with MND. See Advocacy section of this website for more information. Information on the NDIS for people living with MND is available in the Government support & benefits section of this website.
My Aged Care (MAC) is the entry point to services for older people aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people). Types of care available includes the Community Home Support Program, Home Care Packages and residential aged care.
There are four levels of Home Care Packages aimed at people over 64 who have a variety of care needs and whose needs are changing. An Aged Care Assessment Team (ACAT), or similar, must first assess the person’s needs and establish their eligibility.
Aged care services are means tested and the amount of funds available through a Home Care Package is capped which limits the amount of support available. In addition, waiting lists to access higher level packages is long and people living with MND are often assigned a lower level package than the level they are assessed as needing. Early referral is therefore important.
For some people home based care will become too difficult and they may then need to move to a residential aged care facility.
Whatever the setting it is important that the multidisciplinary and palliative health care teams continue to monitor and treat symptoms and support the person living with MND, their carer and family.
MND Association Advisors can assist with MAC referral and follow up. They are also able to provide information and training to aged care providers and residential aged care facilities. Contact details for the state based MND Associations are available here or call the MND Info Line 1800 777 175.
Information on aged care services for people living with MND is available in the Government support & benefits section of this website.
Palliative care services play a vital role as part of the multi/interdisciplinary team from diagnosis onwards. Initial contact may be minimal but as the disease progresses the role of the community palliative care team will become integral to ensuring optimal symptom management and psychosocial care for the person with MND, their carer and family.
The role of the nurse is varied and can include ongoing care and care coordination, often for people in their own homes. Specialised MND nurses usually work within MND clinics and have particular expertise in MND symptom management. Some people may require home based nursing care from a community or specialist palliative care nurse, particularly as the person nears end of life. Nurses play a key role as part of the interdisciplinary team in supporting the family at this time and ensuring optimal symptom management as needs become more complex.
Local palliative care services may be the access point for community nursing services. In some regions access to community nursing may be through the local hospital, community centre or GP practice.
More information on palliative care and the MND Approach to care is available here.
Information on nursing and palliative care services for people living with MND is available in the How can health professionals help? section of this website.
Most people will need some modifications to their home to help them maintain their independence and mobility. Early referral to an occupational therapist to undertake an assessment at home is therefore advisable.
For people under 65 who are entitled to the NDIS then funding for home modifications can be included in their NDIS plan based on the advice of the occupational therapist and receipt of appropriate quotes.
The modifications for people with MND commonly include installation of:
Making adaptions to the home to accommodate increasing disability can evoke strong emotions for the person with MND and their carer. Health professionals and service providers will need to be sensitive to the impact of these changes and support and guide people through the decision making process. For older people unable to access the NDIS then funding these adaptions may be problematic and cost effective solutions may need to be found.
Information on home modifications for people living with MND is available in the Types of help at home section of this website.
MND Associations work closely with health professionals and service providers across Australia as part of the multi/interdisciplinary team to ensure optimal care and support for people living with MND and their families.
Many primary health providers, NDIA service providers and aged care workers will not have cared for a person living with MND before. The MND Associations can provide information, education and training to help improve understanding of MND and its impacts.
MND associations across Australia also provide tailored, personalised support to people with motor neurone disease (MND) and those close to them. The support services provided may include all or some of the following:
MND Associations can be contacted via the MND Info Line 1800 777 175 or via email. Information on MND Association services for people living with MND is available in the Find services and support section of this website.
MND Aware e-training program MND Hub – online training course for health professionals and service providers developed by MND NSW see:
The MND Hub Directory for people with motor neurone disease, their family and friends has been developed by the MND Association to provide information about services and resources that may be of interest to people in Australia and New Zealand.
DSC running an NDIS business blog: Creativity in the eye of a storm 2018 DSC Provider Award for NDIS Organisational Transition -The Motor Neurone Disease Association (MND) of NSW.
International Alliance of ALS/MND Association, 18th Allied Health Professionals Forum 2020:
International Alliance of ALS/MND Association, 17th Allied Health Professionals Forum 2019:
MND Australia, 9th National MND Conference 2018:
MND Australia 2021, End of life care: a guide for people living with MND
MND Australia Fact Sheet series for people living with MND:
MND NSW, Ask the Experts 2019:
MND Australia, 4th MND Connect 2018: