Parliament's Health Select Committee has heard from people petitioning for Tourette Syndrome to be recognised by the Ministry of Health as a disability in its own right in this country.
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.
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'."…