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 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
Katie was just 19 and in the second year of a Bachelor of Early Childhood degree at Melbourne University, when she was diagnosed with multiple sclerosis.
Despite the shock and devastation of her diagnosis, Katie graduated, married and began a professional career in early childhood care.
But significant deterioration in her health saw Katie's marriage crumble and her career come to an early end when she was just 24.
Over the next few years, further exacerbation of her MS together with a lack of suitable accommodation and individual support funding for her to return home saw Katie admitted to a nursing home when she was just 31 years old.
With most residents suffering from dementia and unable to converse with her, Katie says the 15 months she resided in the nursing home were the darkest of her life. Now 35 and as a result of the advocacy and effort of the Young People In Nursing Homes Alliance and MS Australia, Katie is living in the community with 9 other young people and, despite the debilitation of her MS, loving life once again.
Question: Can you talk about how you initially were diagnosed with Multiple Sclerosis?
Katie Skene: I was initially diagnosed when I was 19. When I was 18, I was in my second year of Bachelor of Early Childhood and I had my first incident which is when I lost sensation in my hands and I used that as an excuse for locking my keys in my car (because we've always got to have some excuse); I dropped my keys as I was getting out of the car but I still had the sensation that the keys were in my hands. I had difficulties with holding a pen ect.
Question: How long did it take to diagnose and what test confirmed your MS?
Katie Skene: I went to a GP who sent me to a Neurologist and they said that you needed to have two episodes of MS before you were diagnosed and I felt as if he had said "there is nothing wrong with you".
About six to twelve months later my eyesight started to play up and that's when I had an MRI and I was diagnosed with MS.
Question: How did you initially react to the diagnoses?
Katie Skene: I didn't know what MS was, all I knew about was the read-a-thon because I had done that as a kid. I thought MS was something that old people got and I was diagnosed at 19 when I was studying to become a Kinder teacher.
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