Protecting the right to grow up

Media release
28 October 2015

IHC supports Disability Rights Commissioner, Paul Gibson’s, call for law change.

IHC has serious concerns about growth attenuation – the process of stunting growth.

Charley’s story has been in the media again today. She has completed a treatment that means she has been through puberty and will reportedly remain at 1.3 metres tall, weighing in at 23 kg.

It has also been reported that her parents appealed for her to be given the treatment in New Zealand, but that was not approved by the ethics committee. They subsequently went overseas to begin the treatment – once it was begun medical professionals completed it here in New Zealand.

“This is an incredibly complicated case,” says IHC Director of Advocacy Trish Grant.  “There is huge public sympathy for this family’s situation which we understand, however, we must pause to think about what this means for disabled children’s human rights.”

“This shows that as a society we are failing to provide people with disabilities and their families the support they need on a day to day basis.”

“We have to protect the rights of our most vulnerable – and we have to support families properly so that they aren’t pushed to take such drastic decisions that can never be undone.”

Ends

Contact
Gina Rogers
IHC New Zealand
021 388 208

About IHC

IHC was founded in 1949 by a small group of parents who wanted equal treatment from the education and health systems for their children with intellectual disabilities. The IHC of today is still striving for these same rights and is committed to principles of advocating for the rights, welfare and inclusion of all people with an intellectual disability. We support people with an intellectual disability to lead satisfying lives and have a genuine place in the community.

We have more than 5000 staff working to support 7000 people in services that include residential care, supported living, vocational support, respite care, and New Zealand’s largest non-government social housing provider. We also lobby and advocate for the human rights of all people with an intellectual disability at both a national and an international level. We raise money and awareness of the issues facing people with intellectual disabilities through our charitable activities, including an extensive advocacy programme, a one-to-one volunteer programme and the country’s largest specialist intellectual disability library.