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Tourette’s Association NZ calls Ministry of Health to account with petition

Wednesday, October 20, 2021   Posted in: Signatory Notice Board By: Administrator With tags: community engagement, disabilities, petition

For far too long the Ministry of Health has ignored the physical and mental health needs of thousands of New Zealanders living with the neurological disorder Tourette Syndrome.

Tourette Syndrome is a genetic, paediatric neurological disorder characterised by uncontrollable physical and vocal tics that start in childhood and last a lifetime.

Tourette Syndrome (TS) affects 1 in 100 children, similar numbers to Autism Spectrum Disorder, yet the standard of care and funding of services for those with TS is minimal at best.

The Ministry of Health describes Tourette Syndrome as a chronic, lifelong disorder but does not recognise it as a disability.

Now the Tourette’s Association New Zealand is calling on the Ministry of Health to classify TS as a disability to allow those living with the disorder to access to support services and much-needed disability funding.

Add your signature to the Parliamentary petition to recognise Tourette Syndrome as a disability.

Robyn Twemlow is executive director of the Tourette’s Association New Zealand and says that recognition from the Ministry of Health of the impact that Tourette Syndrome has on the day-to-day living of someone with Tourette Syndrome, and their family, is long overdue.

“Trying to get support and services for those living with Tourette Syndrome is complex at the best of times,” she explains.

“When a young person presents with tics, they are referred to the mental health service for a diagnosis. Tourette Syndrome isn’t a mental health disorder; it is a genetic, neurological disorder.

The mental health service does not provide funding for physical treatments and therapies; funding for the likes of mobility assistance or carer support falls under the disability criteria and Tourette Syndrome is not recognised as such.”

She says that access to disability services and individualised funding that is available for other neurological disorders would be life-changing for those individuals living with complex physical tics.  

“Tourette Syndrome is usually diagnosed between the ages of eight to 10 and most parents would prefer not to have to medicate their child to try to lessen the impact of their tics,” says Twemlow.

“In Europe and the USA, the primary treatment for Tourette Syndrome is now CBIT (Cognitive Behavioural Intervention for Tourette) over medication, but in New Zealand this is not the case. Parents can choose to engage a private practitioner but there are only a handful in New Zealand and at a cost of $160+ an hour that is prohibitive for most.”

For young adults living with debilitating tics access to mobility services and carer support would open up a whole new world of independent living and sense of worth.

“I spoke to a number of our young people at a hui last year and their overall concern was about being able to live independently of their parents,” Twemlow says.

“When you aren’t able to walk without assistance and can’t attend school or work; when you are not able to cook for yourself or to shop for yourself the future is very, very bleak and the rates of depression among our young people at the moment is horrifying.

“Giving them support and access to disability services would give them hope for the future and the cost of that overrides the loss of life.”

The petition closes on 31st January 2022.