The Australian government provides several options to support Australians with their health, disability and aged care.
Finding the best option for you can reduce the cost of living with MND and make day-to-day life easier.
Accessing these supports isn’t always easy or straight forward. There are many websites, departments and systems involved.
Sometimes it can be hard to find your way through these systems. Start slowly and build your knowledge bit by bit. This can reduce stress and help you make more informed decisions.
Below you will find an overview of the main forms of government support, including:
You can use the overview to guide yourself through the systems and support available. After reading you may like to discuss your options with your MND Advisor, MND Support Coordinator or MND Clinic Social Worker.
The National Disability Insurance Scheme (NDIS) gives support to people diagnosed with a permanent disability under the age of 65. This includes people diagnosed with MND.
Within the NDIS people living with a disability are called participants. The NDIS is designed to give participants more choice and control.
The types of NDIS funded supports available to participants living with MND include:
There is eligibility criteria for the NDIS but it is not means tested. Means testing refers to a person going through a detailed financial assessment. You can review your eligibility for the NDIS by calling 1800 800 110.
If you meet the criteria you can ask to become an NDIS participant by completing an Access Request form. Tips that may help:
Eligible people undergo an independent assessment and a planning meeting. Most NDIS plans are designed to last 12 months. After 12 months, the plan is reviewed to make sure the funding still meets your needs. The needs of people with MND can change rapidly, so a six month review is sometimes suggested.
The amount of funding included in your plan varies. It depends on what is considered reasonable and necessary to achieve your goals.
Support coordination can be included in an NDIS plan. MND Association staff, including MND advisors and support coordinators, can provide this service. They know about MND and can support you through the NDIS planning and review process. They can also help you coordinate and access your NDIS funded supports.
A range of assistive technology (equipment) can be rented from your MND Association and funded through the NDIS. Funds to buy equipment such as a specialised wheelchair may also be included.
People living with MND who become NDIS participants before they turn 65 can still receive NDIS funding after they turn 65.
There are two main types of support available for people diagnosed with MND aged 65 years or older:
You need to be assessed for eligibility before you can access either option. You can register for a face-to-face assessment through the My Aged Care website or by calling 1800 200 422. You will then be contacted and an assessor will come out to meet with you.
This program provides a package of funding that can be used to support older people with MND at home. If you are eligible, an approved provider will work with you to plan, coordinate and deliver care services in your home.
Home Care Packages are means tested. This means an income assessment may be needed to decide whether people qualify.
There are four levels of Home Care Packages which provide funding depending on degree of need. They range from level 1 for basic care needs to level 4 for high care needs.
In 2024, the current value of these packages range from approximately $10,271.10 per year at Level 1 to $59,593.55 per year at Level 4.
The government pays the aged care service providers directly. The provider then consults with you to coordinate and manage your package of approved services. Both the cost of services and the payment for case management services comes out of your package.
You can also choose to self-manage your Home Care Package. If this is something you would like to consider, talk with a social worker as they will be able to guide you. The Council of the Ageing (COTA) has a useful resource on self-managing Home Care Packages.
There is a high demand for Home Care Packages, which may lead to waiting times. To start, you may be offered a Home Care Package at a lower level than you were assessed for, but you will be placed on a waiting list for the higher level package.
My Aged Care can also fund subsidised support services via its Commonwealth Home Support Programme (CHSP).
CHSP provides government-subsidised aged care support services to older people at home. Eligible people are given a support plan and service referral codes for each approved service. You can contact the service providers directly to organise the support you need. If you prefer, your assessor can also send a referral to a provider on your behalf.
You can look for service providers in your area online at My Aged Care or call the My Aged Care contact centre on 1800 200 422.
CHSP packages are not means tested, but you are expected to contribute to the cost of your care. Each of the service providers sets their own prices. How much you contribute depends the type of services you need.
The CHSP can provide services such as:
Note: Eligible people can use these subsidised services while they wait for their Home Care Package to become available. Once you start on an Home Care Package you can no longer access services via the CHSP program.
Not everyone living with MND is able to stay at home. You may need to move into a residential aged care facility. Residential aged care provides accommodation and personal care 24 hours a day. There is also access to nursing and general health care services. Approved providers run Australian government subsidised aged care facilities.
My Aged Care is also the access point to residential aged care and assessment. You can register for an assessment online at My Aged Care or by calling 1800 200 422.
You will be contacted and an assessor will come out to meet with you.
What you pay to live in a residential aged care facility varies depending on your needs, financial situation and the facility. An Aged Care Assessment Team (ACAT), or similar, will assess and approve whether you are eligible for a subsidised place or respite. Part of this process involves Services Australia (Centrelink) conducting a means test. The means test calculates how much you have to pay to the aged care facility.
Costs can include fees, accommodation and a bond. The amount the government pays and how much you pay depends on your assets and means test assessment.
If you are eligible for Medicare the majority of your health care costs and GP visits will be covered by Medicare, but you may have some gap and out-of-pocket expenses. The Medicare Safety Net is available for people who spend over a certain amount in a year in health care out of pocket costs. Once you’ve reached the threshold, you’ll start receiving higher Medicare rebates.
Visits to your MND clinic will be covered by Medicare unless the clinic is privately run. You will need to discuss any out-of-pocket expenses with the clinic.
Palliative care and community nursing services are usually fully covered by Medicare.
If you have private health insurance, services such as massage may be covered by your fund.
The Pharmaceutical Benefits Scheme (the PBS) subsidises medicines prescribed by a doctor. The Scheme is available to all Australian residents who hold a current Medicare card.
Under the PBS, the government subsidises the cost of prescription medicines such as Riluzole. This means the government pays for a part of the medication cost and the patient makes a co-payment.
According to the PBS from 1 January 2024, you may pay up to $31.60 for most PBS medicines, or $7.70 if you have a concession card. To be eligible for a concession, you will need to have one of the following concession cards:
If you spend a lot of money on medication, you may be eligible for more support. Support is provided through the PBS Safety Net. For more information ask your pharmacist or contact the PBS Information Line on 1800 020 613.
There are two main forms of government payments available for people who care for people living with MND.
Carers Payment is for people who give constant care to someone who has a severe disability, illness, or is an older frail adult. There are eligibility requirements and you need to undergo an income and asset test.
Carers Allowance is for people who give daily care to someone with a disability or serious illness, or is an older frail adult. The supplement is paid every fortnight. While there is no assets test for Carer Allowance there is an income test.
If you are unable to continue working you may be eligible for the Disability Support Pension (DSP). This pension is available to people with a permanent physical condition that stops you from working. To get the pension you will need to be assessed and meet both non-medical rules and medical rules.
To discuss carer payments or the DSP you can call Services Australia on 132 717, Monday to Friday 8am to 5pm or visit Services Australia for details about eligibility criteria.
You may also be allowed early access to your superannuation if you have been diagnosed with a terminal condition. Contact your super fund or visit the ATO website for more information.