MND Australia strives to present a strong national voice representing people living with MND and to collaborate with others on issues that require government, institutional or systemic change through educating, advocating and influencing.
"Irrespective of age, geographical location, or ability to pay, all people living with MND should have access to services they need during their disease progression."
MND Australia seeks government support for six key priorities to improve the lives of people living with MND, their carers and their families.
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:
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:
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:
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:
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:
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.
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: