Tourette’s advocates call for inclusion in national disability support scheme

ABC NEWS (Australia)

High suicide rates, public ridicule and wrongly categorised NDIS support are just some of the things people living with Tourette syndrome face. The peak body representing people with Tourette's along with South Australian advocates are taking their pleas to parliament to campaign for change.

Transcript

00:00Jasmine Edson was 17 when she experienced her first tick attack.

00:07In that moment I had no idea what I was doing, no idea what I was saying, no idea like how

00:16I was moving or what was going on, so it was a really scary experience for me.

00:2012 months of tests and referrals later, she was diagnosed with Tourette's Syndrome.

00:25Knowing that I had that independence ripped away from me when my tick started was a very upsetting, vulnerable feeling.

00:31And, you know, at 17 you're thinking about finishing school and going to uni and maybe travelling,

00:37and so to have those experiences kind of taken away from me by this condition, it was really impactful.

00:42Around 1 in 100 Australians have Tourette's.

00:45The millennial pause.

00:47The first national survey of people with the condition was released in June.

00:51The findings highlighted a shocking reality.

00:53One in four adults and one in ten children with Tourette's had attempted suicide.

00:58That being the statistic of one in four adults, it, yeah, it doesn't surprise me.

01:02And I just think more people need to know that it doesn't surprise the rest of us.

01:06Those things aren't symptoms of having Tourette's.

01:08They're symptoms of society treating Tourette's wrongly.

01:12The way Tourette's is perceived was highlighted in the Federal Parliament last year.

01:17Have you got Tourette's or something?

01:21While the Prime Minister apologised shortly after making that remark, it left the Tourette's community determined to make a change.

01:28We're the loudest people in the room, and yet somehow we're still invisible to the people that matter.

01:34Dozens of advocates are campaigning to improve awareness and pushing for national disability insurance scheme support.

01:42South Australia have been the first government to meet us where we stand and listen to what we're saying,

01:48rather than just kind of brushing us off and saying, yeah, but everyone's got problems.

01:52I have asked our department to help host a conversation that might include public awareness and how we do that together.

02:02So I think that is the next step.

02:05Tourette's syndrome does not qualify for NDIS support because it isn't considered a permanent condition.

02:10A National Disability Insurance Agency spokesperson says people with severe Tourette's may meet the requirements.

02:17People with those problems are actively getting turned away.

02:22So it's one thing for them to say that, it's a very different thing for them to act upon that.

02:26There is not enough compassion, there is not enough empathy to the condition that we deal with

02:32and to the lives that we have to live for the rest of our lives.

02:36Fighting for better care and recognition.

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