Thousands with neurological disease face loss of support as NDIS rolls out

By Tessa Hoffman

4 Oct 2018

Graeme Shears

There are fears that people with progressive neurological disease will “fall through the cracks” as the National Disability Insurance Scheme is rolled out.

Neurological Alliance Victoria (NAV) and Epilepsy Foundation CEO Graeme Shears says the majority of people with degenerative neurological conditions appear to be being knocked back for NDIS support after being deemed ineligible.

The lack of access to NDIS support will have an even greater impact on people with neurological diseases after June 2019, when the states withdraw the funding they have given agencies to provide them with services like phone support, peer support and health information, according to Mr Shears.

States’ funding for support services is to be redirected to the NDIS as per an agreement with the Commonwealth.

“Around 10 to 20% of people with a neurological condition should be eligible for an NDIS package, however the experience to date is probably around 5% are getting support for neurological condition in their packages,” Mr Shears told the limbic.

He said the National Disability Insurance Agency (NDIA) is “pushing back saying ‘no these neurological conditions are health conditions, they shouldn’t be funded out of the NDIS'”.

“We have met with chair of federal government’s NDIS committee, Kevin Andrews. He’s saying the NDIS was never supposed to meet the needs of all these people and it was always going to be a state responsibility. The state governments are saying ‘we have tipped all the money into the NDIS so they should be doing it’”.

“So we are falling through the big hole in the middle.”

It is not the first time the alliance has raised concerns about how the national disability support reforms may affect people with neurological diseases.

In in 2017 in a position statement Neurological Alliance Australia warned that people with progressive neurological and neuromuscular diseases ran counter to the ‘traditional’ trajectory of someone on the NDIS who has the capacity to become more independent through better delivery of services. That is because for this group, inevitably, care needs increase over time.

Professor Terence O’Brien, Director of Neurology at The Alfred in Victoria, said the NDIA’s apparent position on neurological disease-acquired disability “seems to make no medical or scientific sense”.

“But what it means is these people are now at risk of not having services,” he told the limbic.

“They (the NDIA) need to look at people’s disability, not the cause of that disability. So if someone has epilepsy, they can’t drive, they need a carer, they’re at risk when they shower and bath, that’s a disability that needs to be addressed. If someone has Parkinson’s disease and they can’t walk, or shower themselves or get out of bed, that’s a disability that needs to be addressed.”

However a spokesperson for the NDIA rejected Professor O’Brien’s claims.

Access to the NDIS was “based on functional impairment not diagnosis” and “no condition is, or will be, automatically excluded from the NDIS”, they said.

According to the NDIA, a person will satisfy the NDIS criteria if they have a disability that is due to an impairment which is likely to be permanent and reduces their ability to participate in everyday life, is aged under 65 and will need the NDIS for life.

The NDIS funds individuals to access personal care, therapy services and essential equipment, and grants for charities and other groups working to help people be more connected into their communities, their spokesperson said.

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