Bill Shorten will speak at the National Summit on Neurological Conditions today

Key points:

• Around 30 percent of people are affected by neurological conditions including epilepsy and motor neurone disease, according to the World Health Organization
• Neurological Alliance Australia is holding a national summit to enact change in the healthcare system and NDIS for people living with neurological conditions
• In the campaign video to be released at the summit, Tim Ferguson, an Australian comedian living with multiple sclerosis, explained the importance of the video’s key message: Count Us In

Researchers have found that around a third of the population is affected by neurological conditions, however, fewer than 15 percent of NDIS participants are diagnosed with these conditions, according to recent NDIS quarterly reports.

The National Summit on Neurological Conditions, organised by Neurological Alliance Australia, will be held today, June 25, 2024, at Parliament House in Canberra. 

Neurological Alliance Australia, formed by 27 peak advisory bodies for neurological disorders, is releasing a new campaign, Count Us In, to highlight the importance of improving lives and finding cures for people with neurological and neuromuscular conditions. 

Organisations such as Motor Neurone Disease Australia, Multiple Sclerosis Australia and Parkinson’s Australia are among the 27 not-for-profit groups involved in advocacy for people with neurological or neuromuscular conditions.

Some types of neurological and neuromuscular disorders include Parkinson’s disease, strokes and multiple sclerosis.

Attendees of the event in Canberra will hear from speakers including key decision-makers, people with lived experience of neurological conditions and the Minister for the NDIS Hon Bill Shorten MP. 

Neurological conditions were in the top five disease groups that caused the most burden for Australians, according to the latest data from the Australian Institute of Health and Welfare. 

Tim Ferguson, an Australian comedian, screenwriter and advocate who lives with multiple sclerosis, recently voiced his concerns about the limitations of current disability support for people with neurological conditions.

“There are millions of people, millions living in Australia with neurological conditions. We need more thought, more organisation and more energy put into this particular sector of people,” he said. 

“We have to get all of our politicians, all of our decision-makers, to start talking about neurological conditions as if they are the next wave of disability advancement.”

Tim Ferguson was diagnosed with multiple sclerosis at the age of 32, having had intermittent symptoms from 19 years old. Now at 60 years old, Ferguson has not let MS affect his success as he teaches comedy screenwriting, writes and directs movies and is a national advocate for disability employment, according to his website. 

[Credit: Tim Ferguson via YouTube]

According to Multiple Sclerosis Australia, MS is most commonly diagnosed in people between the ages of 20 and 40 years and can result in symptoms such as loss of motor function like walking and changes in vision.

While MS Australia states that the ‘NDIS currently funds some disability-related health supports delivered by a registered nurse,’ one of the campaign purposes is to increase understanding of life with neurological conditions to make it easier for affected people to access NDIS support.

The Count Us In campaign video, in which Ferguson and other people with neurological conditions are featured, highlights key changes required in the healthcare system. 

The six areas needing improvement brought to light by this campaign are:

• greater investment in medical research;
• better support in the NDIS;
• equal access to assistive technology;
• acquiring a national dataset for neurological conditions;
• eliminating the age restriction of 65 years for NDIS support;
• better integration between aged care, health and disability sectors.

Neurological Alliance Australia Deputy Chair Anne Wilson made it known that a government task force targeting the six areas needing improvement could be a game-changer for people living with neurological conditions.

“Every Australian knows someone living with a neurological condition and witnesses the lifelong impact on that person, together with their family, friends and carers,” she said.

“What we urgently need today is for all the major parties to acknowledge the impact of neurological conditions and work with the Neurological Alliance Australia to give hope and certainty to Australia’s neurological community,” Ms Wilson said.

However, Ms Wilson also highlighted the necessity of creating a national dataset of people with neurological conditions.

“We know there are world-leading researchers working hard to discover better treatments and ultimately cures for the range of neurological conditions, she said, “but progress cannot be made without significant investment, which is why we are calling for a Neurological Mission within the Australian Government’s Medical Research Future Fund.”

 

Do you have a neurological condition and are trying to get NDIS support? How have you found the process?

Let the team at Talking Disability know on social media. 

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