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Making the invisible visible

Associate Professor Des Graham, President, MS Australia

A 35-year career spent on the frontlines of nursing, health and human services and State Government health bureaucracy has given me a decent understanding of disease and disability.

Enough to know that the National Disability Insurance Agency (NDIA) has an unenviable, yet vital task. To accurately and fairly assess those Australians seeking support through the National Disability Insurance Scheme (NDIS).

Vital, because all Australians with disability should be provided with the supports they require to live a full and independent life.

Unenviable, because the range of conditions that meet the NDIS disability requirements, or are likely to result in permanent impairment, number well over 150.

The enormity of that challenge doesn’t excuse the NDIA’s past failings but does, in part, explain them.

As President of MS Australia, and someone living with multiple sclerosis (MS) since my diagnosis in 2009, I have a comprehensive and unique understanding of MS.

I have first-hand experience in dealing with the NDIA.

And sadly, I have heard too many stories that make clear that MS is not well understood.

How else to explain the all-too-commonly heard complaint that when being assessed for an NDIS plan, Australians living with MS, a disease that currently has no cure, are crushingly asked, “Do you still have MS?”.

It’s for that reason that MS Australia, through its campaign, A Better NDIS for people living with MS, is championing the call for the establishment of an NDIA neurological advisory group, to ensure fairer representation for those living with progressive neurological or neuromuscular conditions and improve the understanding of the NDIA in relation to these conditions. You can lend your support to that call here.

It is also for that reason why MS Australia has produced a new video resource, What is MS?

There are challenges in understanding a complex condition such as MS, and one that now impacts more than 33,000 Australians.

MS impacts everyone differently.

And people living with MS will sometimes be well one day, and then be quite unwell the next.

That is certainly my lived experience.

The video, commissioned in 2022, to mark MS Australia’s 50th Anniversary Year, aims to educate the general public and people living with MS, especially those newly diagnosed, about the causes, different types of MS and common symptoms of a condition that, as of now, has no cure.

It’s true that most Australians know that MS means multiple sclerosis, but they don’t really have a very good understanding about what MS actually is.

And there is an inherent challenge in trying to explain to the general public, what MS is. We need to make the invisible visible.

The public see someone with no visible symptoms and naturally struggle to understand the challenges that an individual is dealing with, or incorrectly assume there’s nothing wrong with them.

And as I have earlier outlined, that lack of understanding sometimes extends to areas of government support such as the NDIS.

That means that too often, people living with MS are denied the disability support they require and deserve.

If you’ve got MS and you’re in a wheelchair, government may provide the support that you require, but if your symptoms are less visible, you are too often left out in the cold.

MS Australia is launching the new video in the wake of new prevalence data released by MS Australia in February 2023 which shows the number of Australians living with MS increasing at a significant and accelerating rate.

The latest data shows that 33,335 Australians were living with MS in 2021, an increase of 30% (7,728) over the four years since the previous update in 2017 (25,607).

That makes this new video resource equally valuable as both an awareness raising tool and a reminder to Government of the urgent need to invest more in MS research.

The video also contains a strong message of hope.

For over 50 years MS Australia has led the world in ground-breaking research to help improve the lives of Australians living with MS.

With MS on the rise, MS Australia is now doubling its efforts to advocate for greater government investment in MS research, that will bring us closer to treatments that will slow or stop disability progression for everyone.

What is MS? video link

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Making the invisible visible