This morning, Parliament’s Health Select Committee heard from members of the Tourette's Association New Zealand on their petition for Tourette Syndrome to be recognised by the Ministry of Health as a disability in its own right in this country so that people who live with it can be eligible for ministry-funded support services.
Tourette Syndrome (TS) is a disorder that involves repetitive movements or unwanted sounds or tics that can't be easily controlled. The Ministry doesn't consider TS a disability even though motor tics can have a physical impact, and in severe cases can impact one's ability to attend school, be active or live independently as adults.
Tara Robinson (centre) of the Tourette's Association New Zealand speaks to Parliament's Health Select Committee, 3 May 2023. Her fellow Association members Shelley Reynolds (left) and Hayley Seath (right) also attended. Photo: Phil Smith
As the Association’s Tara Robinson explained to the MPs on the committee, there’s an inadequate diagnostic pathway in New Zealand, even though Whaikaha, the Ministry of Disabled People, acknowledges that Tourette Syndrome is a disability.
“However there are no funding services available through that unless there’s a co-existing intellectual disability, sensory disability, physical disability or autism, which is where the issue gets a little bit cloudier, to be honest. Because it’s not an acknowledged disability, Te Whatu Ora don’t have the diagnostic pathway for Tourette’s, and Whaikaha’s support will only kick in at the point which you have another condition, none of which are recognised co-morbidities of Tourette’s, so they’re mutually exclusive,” she said.
“What we’ve got is a neurological disorder being treated in mental health units most commonly. The reality is that those with Tourette’s are unable to take part in society because of a physical disability caused by neurological conditions.”
Describing the current level of support for people who live with TS at best as fragmented and at worst non-existent, Robinson said there were around 20-thousand school age students in the country who had a persistent tic disorder.
“We know that not all of these require support - funding support or physical support - but it’s also a number that is impossible to ignore. I would challenge you to say it’s not a disability when these individuals - one of which is my daughter - have been unable to attend school but is unable to attend a health school because she doesn’t have a ‘disability’.”
For people who live with TS, having to negotiate the world with motor or vocal tics can be a constant challenge. Complex motor tics sometimes involve copropraxia, banging the head, and gyrating. Motor tics may also result in serious self-injury and cause life-long medical issues, as well as impacts for family members and households. Meanwhile the range of complex vocal tics includes stuttering, loudness, rapidity and coprolalia.
National MP Matt Doocey sitting on Parliament's Health Select Committee Photo: Phil Smith
The submission was a chance for the committee’s MPs like Matt Doocey to come further to grips with a glaring gap in the health system. The National Party MP said he figured investment would be a central part of the solution.
“But I’m making the assumption at the moment, you don’t know where that investment goes because first you need a strategy, is that right, and then you have your association which probably doesn’t have any funding, so how do you then fund a strategy to work out where we need to go with that, so is that kind of where you need to head?” Doocey asked Robinson.
“Pretty much,” she responded, adding that “the difficulty for us is the pathway for diagnosis. So a lot of people are unable to be diagnosed with Tourette’s. GPs are unaware that they can diagnose with Tourette’s. Many GPs won’t. So without getting the diagnosis, you can’t then get the next step.”
If Tourette Syndrome can be recognised as a disability in its own right by the health system, it means that people living with TS, as well as their parents, GPs, teachers and others can start to access some of the badly needed services.
