Our advocacy priorities

MND Australia seeks government support for six key priorities to improve the lives of people living with MND, their carers and their families.

1. Improvements to aged and disability care

Aged Care

People diagnosed with MND aged 65 and older are not currently eligible for the NDIS and must access government funded support and care services through the My Aged Care Home Care Package system. However, My Aged Care is designed to support people who are frail aged and experiencing dementia, not people with progressive, complex and life limiting conditions like MND.

To address the care needs of older Australians diagnosed with MND, My Aged Care needs to urgently:

• Introduce a formal ‘fast track’ process for automatic access to Level 4 Home Care Packages for those with progressing and complex disability.
• Reduce the waiting time for the approved level of Home Care Package to less than 30 days
• Introduce supplementary funding to cover the cost of assistive technology and necessary home modifications

Learn about our campaign to Make Aged Care Fair

National Disability Insurance Scheme (NDIS)

Many NDIS participants living with MND, who were diagnosed with MND before the age of 65, have plans in place that are having positive, life-changing impacts. Many others, however, are being negatively impacted by NDIS implementation problems.

In order to improve NDIS supports for people living with MND, the NDIS needs to:

• Fund specialist disability organisations to support NDIS pre-planning. Specialist disability organisations should also undertake planning with NDIS planners as the final authority for the approval of participant plans.

2. Timely access to assistive technology

It is unclear where responsibility lies for addressing the assistive technology needs of older people with a chronic disease or disability. Funding and access is inequitable and confusing with many people sacrificing their limited income or falling through the gaps. Therefore, the government must:

• Provide funds for assistive technology separately from the My Aged Care Home Care Package funding to ensure that older people who acquire a disability can access the assistive technology they need to maintain their independence, quality of life, communication and community access and to support carer health and well-being.
• Engage with state MND Associations to create cost-effective access to assistive technology for all people living with MND.
• Provide funds to ensure access to non-invasive ventilation in the management of MND to improve quality and length of life.

3. Development of National MND Guidelines

Everyone living with MND should have access to the right care in the right place at the right time. Access to evidence based care for people with MND remains problematic. To address this issue, we need to:

• Develop national guidelines for the management of people with rapidly progressive neurological conditions
• Support effective interfaces with allied sectors particularly health and palliative care to ensure a coordinated inter and multidisciplinary approach to care.

4. No cost access to IVF and pre-implantation genetic diagnosis

Whilst there are no therapies available to stop the disease in people living with MND today, we can help stop MND in families with a known genetic mutation. The government can support families with a genetic MND mutation by:

• Improving access for people with familial MND to genetic testing at no cost to them under the existing arrangements for testing, including counselling
• Improving no cost access for those who choose to undertake in-vitro fertilisation (IVF) and pre implantation genetic diagnosis (PGD)

5. Funding for specialist MND multidisciplinary clinics

Specialist MND multidisciplinary clinics operate in most capital cities in Australia. The majority of these clinics do not receive specific government funding despite increasing demands on their services. The multidisciplinary clinic coordinator role is vital in supporting the team and ensuring coordinated care and timely provision of treatment for people living with MND.

Compared to those people with MND who attend general clinics, multidisciplinary care can contribute to fewer hospital admissions and shorter inpatient stays. It would be highly beneficial, therefore, for the government to develop and fund multidisciplinary clinics to build capacity and ensure that these clinics can continue to provide coordinated health care, expert management and evidence based treatment for people living with MND.

6. Increase and sustained investment in MND research

Currently there are no therapies to effectively slow down MND or stop the progression. It is therefore imperative that research advances continue to be funded and access to clinical trials is improved to ensure the ultimate goal of a rationally designed therapy that stops the advance of MND. And until an effective treatment becomes available access to evidence based health and supportive care to enable people with MND to live as well as possible for as long as possible is vital. The government needs to support MND research through:

• Maintaining a significant investment in medical research to treat, slow progression and ultimately cure MND.
• Investing in health and social care research to improve the quality and length of life for people with MND.