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

Government support & benefits

The Federal Government provides several options to help Australians fund their health, disability and aged care and make it more affordable.

By finding the options that best suit your needs, it could help you to reduce the costs of living with MND, and make your day-to-day life easier.

However, there are many websites, departments and systems that Australians have to use to access government funded supports and benefits. Sometimes navigating the systems can be confusing.

Below you will find a basic overview of the National Disability Insurance Scheme (NDIS), My Aged Care, Carer Payments and Allowances, the Pharmaceutical Benefits Schemes and other forms of government funded supports and benefits. The overview contains information such as who the support is for, what it can help with, eligibility testing, concession cards and phone numbers and other contact information.

You can use the overview to help guide your way through the government systems and support available. We recommend that after reading the overview you discuss what is available for you with your MND Advisor, MND Support Coordinator or MND Clinic Social Worker.

Starting slowly, and gradually building your knowledge, can help reduce the stress of finding more affordable care, and with making more informed decisions.

The National Disability Insurance Scheme (NDIS) provides funds to support people with a permanent disability who are under 65 years old, including people living with MND. The NDIS is designed to give people living with disability, who they refer to as participants, greater choice and control over their disability supports and services.

The types of NDIS funded supports that may be available to participants living with MND include:

  • personal care such as help with showering and dressing
  • transport to enable participation in community, social, economic and daily life activities
  • help for the participant to successfully get or keep employment
  • therapeutic supports, including allied health support and assessment
  • help with household tasks to allow the participant to maintain their home environment
  • skilled professionals to help with assistive technology (aids/equipment) assessment, set up and training
  • home modification design and construction
  • assistive technology including specialised wheelchairs and communication aids
  • vehicle modifications, and disability-related health supports such as provision of a BIPAP machine and care of PEG

Learn more about NDIS funding click here 

There are eligibility criteria for the NDIS but it is not means tested. Means testing refers to a person going through a detailed financial assessment. To review your eligibility for the NDIS you can call 1800 800 110 or click here.

If you meet the eligibility criteria you can ask to become a participant by completing an Access Request form. It helps to complete the form with your GP, an allied health professional and/or specialist medical professionals. You may need to complete other forms (e.g. Supporting Evidence Form) as well. It can make the process much easier to have some support while preparing all the documents. You can also call 1800 800 110 to make an Access Request.

Eligible people will undergo an independent assessment and a planning meeting. Most NDIS plans are designed to last 12 months after which a plan review will be undertaken to ensure the funding still meets your needs. For some people living with MND a six month review is recommended as needs may change rapidly. 

The amount of funding included in your plan depends on what is deemed reasonable and necessary to achieve your goals.

Support coordination can be included in an NDIS plan. MND Associations provide support coordination services through their MND advisors, support co-ordinators or coordinators of support (COS). MND Association support coordination staff are experienced in MND and can support you through the planning and plan review process and help co-ordinate and access your NDIS funded supports.

A range of assistive technology can be rented from your MND Association and funded through the NDIS. Funds to purchase individualised assistive technology such as a specialised wheelchair may also be included if deemed reasonable and necessary.

People living with MND who become NDIS participants before they turn 65 can continue to access the NDIS funding after they turn 65.

There are two main types of government support available for eligible people who are aged 65 years or older and living with MND in the community:

  •  Home care packages, and
  •  Commonwealth Home Support Programme (CHSP).

Both types require you to be assessed for eligibility. To register for a face-to-face assessment through My Aged Care or call 1800 200 422. You will then be contacted and an assessor will come out to meet with you.

Home Care Packages Program

The Home Care Package program provides a package of funding that can be used to support older people with MND at home. Approved aged care service providers work with eligible people to plan, coordinate and deliver care services in their home.

Home care packages are means tested which means that an income assessment may be required to determine whether people qualify for funded care from the government.

There are 4 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.

The current value of these packages range from approximately $9,000 per year at level 1 to $52,000 per year at level 4.

The government pays the aged care service providers, who 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 self-manage your home care package if you prefer to do so rather than use an aged care service provider. This approach allows you manage your package including choosing support workers and suppliers. If this is something you would like to consider, talking with a social worker is a good place to start as they will be able to guide you.

The Council of the Aging (COTA) has a good resource on self-managing home care packages.

There is a high demand for aged care packages which may result in delays in care package availability. You may be offered a package at a lower level than you have been assessed as needing and placed on a waiting list for the higher level package.

It is however important to know that My Aged Care can also fund subsidised entry-level support services via its Commonwealth Home Support Programme (CHSP).

Commonwealth Home Support Programme (CHSP)

CHSP provides government-subsidised aged care support services to older people at home.  After assessment, eligible people are provided with service referral codes for each approved service. The assessor or the client themselves can then contact the individual service providers to organise the support they need.

You can look for service providers in your area via the My Aged Care website or call the My Aged Care contact centre on 1800 200 422.

CHSP packages are not means tested. You are expected to contribute to the cost of your care if you can afford to. Each of the service providers sets their own prices and what you contribute to the services depends the type of services you require.

The CHSP can provide services such as:

  • help around the house
  • transport
  • support with meals
  • personal care
  • home modifications
  • social support
  • nursing and allied health
  • planned respite care.

Eligible people can use these subsidised services while they wait for their package to become available. Once you commence on an aged care package you can no longer access services via the CHSP program.

Not everyone living with MND is able to stay at home. Some will need to move into a residential aged care facility. Residential aged care provides accommodation and personal care 24 hours a day, as well as 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. To register for an assessment contact My Aged Care via their website or call 1800 200 422.

You will then be contacted and an assessor will come out to meet with you.

What individuals pay to live in a residential aged care facility varies depending on the individual’s needs, their financial circumstance and which facility they choose.  An Aged Care Assessment Team (ACAT), or similar, will need to assess and approve a person’s eligibility for a subsidised placement or respite in an aged care facility. Part of this process involves Services Australia (Also known as Centrelink) undertaking an individual means test to determine the amount individuals are able to pay to the aged care facility.

The amount the government will contribute and how much you will need to contribute towards the fees and accommodation costs, including any bond that may need to be paid, will depend on your asset and means test assessment.

MND Associations can provide MND training to aged care facilities that are caring for people living with MND. Please talk with your MND Advisor or call the MND Info Line 1800 777 175 for more information about how to organise MND specific training for your residential aged care facility.

Some people with MND who live at home will also use residential respite, where they will go into an aged care facility for a limited period of time to give their carers a break or to accommodate a carers time away from home.

If you are an Australian citizen and have a Medicare card your health care costs and GP visits will continue to be covered following a diagnosis of MND. You may have some gap and out of pocket expenses just as you may have had prior to your diagnosis. There is a Medicare Safety Net for people who spend over a certain amount in a calendar year in gap and out of pocket costs. Once you’ve reached the thresholds, you’ll start getting higher Medicare benefits.

Your visits to your MND clinic and the multidisciplinary team members’ consultations will be covered by Medicare unless the clinic is privately run. You will need to discuss any out of pocket expenses with the clinic coordinator or your neurologist.

Palliative care and community nursing services are usually fully covered by Medicare.

If you have private health insurance you may be able to have additional services covered by your fund such as massage. Check in with your health care fund to find out more.

The Pharmaceutical Benefits Scheme (the PBS) is the system that the Government uses to provide subsidies for prescription (medicines prescribed by a doctor) medication. 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 which is frequently prescribed to people living with MND to slow progression. This means the government pays for a part of the medication cost and the patient makes a co-payment. Riluzole costs significantly more than the co-payment amount.

According to the Pharmaceutical Benefits Scheme from 1 January 2020, you may pay up to $41.00 for most PBS medicines or $6.60 if you have a concession card.

To be eligible for a concessional benefit, you will need to have one of the following concession cards:

  • Pensioner Concession Card
  • Commonwealth Seniors Health Card
  • Health Care Card
  • DVA White, Gold, or Orange Card

There is also a safety net that further supports Australians whose medication costs exceeds a certain dollar amount. For further information about the PBS and Safety Net arrangements, ask your pharmacist, contact the PBS Information Line on 1800 020 613 (free call) or visit Services Australia.

There are two main forms of government payments available for people who care for people living with MND.

Carers Payment is an income support payment if you give constant care to someone who has a severe disability, illness, or is an older frail adult. There are eligibility requirements and you are required to undergo an income and asset test.

Carers Allowance is a fortnightly supplement if you give daily care to someone who has a disability or serious illness, or is an older frail adult. There are eligibility requirements and while there is no assets test for Carer Allowance there is an income test.

Services Australia has a dedicated number you can call to discuss carer payments. Call- 132 717. Monday to Friday 8am to 5pm. You can also look on Service Australia’s website for details about who can apply for the payments and what the eligibility criteria are.

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.

The Government may allow early access to superannuation on compassionate grounds which includes being diagnosed with a terminal medical condition. Contact your super fund or visit the ATO website for more information.