A gathering of Australia's peak Neurological organisations has resolved to launch a campaign to ensure people living with progressive neurological diseases are not left out of the proposed National Disability Insurance Scheme (NDIS). Known as Neurological Alliance Australia (NAA), the group represents Australians living with conditions like multiple sclerosis (MS), Parkinsons disease, motor neurone disease (MND), Muscular Dystrophy and Alzheimer's disease.
This follows a summit held in Melbourne on Friday which focused on what needs to be done to make the NDIS work for people living with these incurable progressive neurological and neuromuscular diseases.
NAA spokesperson Carol Birks said the introduction of the NDIS presents a once-in-a-generation opportunity that shouldn't be wasted.
"The NDIS has the potential to transform the lives of people living with neurodegenerative diseases whose needs will change throughout their lifetime - we need to get the scheme right." Ms Birks said.
"These diseases are unpredictable and progressive. The government must ensure that people with progressive neurological and neuromuscular conditions are eligible to NDIS services from their diagnosis and can access regular reviews based on their needs throughout their lifetimes."
In addition to this, Ms Birks said the meeting discussed the NDIS as a chance to get the disability, health and aged care sectors working better together, as people with these diseases regularly need to access care from all three sectors.
"People living with progressive disabilities around the country are being let down by a system where Government programs don't work together.
"People with disabilities are facing family breakdown and diminished health and independence all because the different sectors don't sing from the same song sheet."
The NAA has resolved the campaign to influence government to focus on the following:
1. Eligibility starting at diagnosis using specialist assessment and quality assessment tools.
2. Ongoing reviews for individuals throughout their disease course.
The NAA represents the following organisations:
• Alzheimer's Australia
• Friedreich Ataxia Research Association Australasia
• Huntington's Disease Australia
• MND Australia
• Muscular Dystrophy Foundation Australia
• Multiple Sclerosis Australia
• Parkinson's Australia
• Spinal Muscular Atrophy Australia