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News

What’s new in the world of PWS, the disability and education sectors? Plus, PWSA news, details of new resources and advocacy updates.

NEWS

PWSA Family Camp – May 2018

PWSA Family Camp – May 2018

Thank you to all the families and carers who joined us at YMCA Camp Adair, Hunua, Auckland. We think it was our biggest camp yet with 93 people booked to attend on the Saturday! It was lovely to catch up…

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Join The Conversation – Let’s Talk About Education!

Join the Conversation – Let’s Talk about Education!

Have your say...(before 31 May). The Minister of Education has announced a three-year review of the public education system. Plans include a review of NCEA, a review of Tomorrow’s Schools, developing a future-focused Education Workforce Strategy, a continuous focus on…

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May Is PWS Awareness Month!

May is PWS Awareness Month!

May is international PWS Awareness Month. Each year we focus on spreading awareness during May with the belief that awareness leads to increased understanding and acceptance. There are lots of ways you can spread awareness - you may want to…

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ADVOCACY UPDATES

July 2017 – Growth Hormone Access

Our submission to Pharmac to widen access until 18 years has been declined. We anticipate new evidence becoming available and we intend to keep trying. In the meantime, please contact us: a.) if your child has stopped GHT and you have observed effects on energy level, body composition, weight gain, mood or overall quality of life; b.) if your child later resumed treatment and you observed benefits; or c.) if your child started treatment as a teenager or adult.
Submission to PTAC – February 2017

Dec 2016 – Education Action – Learning Support Update

On November 24, Hekia Parata announced the next steps in the Learning Support Update with the proposed changes to be phased in with a pilot beginning in the Bay of Plenty early 2017. We offered input to the changes in the form of letters to Parliament, writing to all MPs with education or disability portfolios and Education and Science Select Committee members. We also sent letters to other political party MPs seeking comment.
PWSA(NZ) Letter to MPs

Dec 2016 – Growth Hormone Access

P​harmac​ considered submissions and removed the growth velocity barrier and allowed children to start treatment from 6 months old without the need for collecting growth data – in effect from Jan 2017. Unfortunately, extending treatment until 18 years​ was not approved. We met with Pharmac in September to discuss our case with senior staff​,​ including Medical Director Dr John Wyeth. We were advised that to achieve our goal of funded GH for all people with PWS​,​ a step​ by step approach ​is recommended ​- under 2​’​s, up to 18 years, and then adults. We are following this advice. Thank you to all who made submissions​.
PWSA(NZ) Submission to PHARMAC – Sept 2016

Nov 2016 – Education Action – Education Amendment Bill

We submitted a response to the Education (Update) Amendment Bill and were given an opportunity to speak to our submission before the Select Committee, December 2016​. We also forwarded questions to Kelly Dugan of SmileDial for his meeting with the Minister for Disability Issues and MoE staff members.
PWSA(NZ) Submission – Education Amendment Bill

Sept 2016 – Education Action – YouthLaw Research

The PWSA helped to fund research by YouthLaw into access to education for children with special educational needs. Their report was published in Sept 2016 and is an excellent summary of the problems facing our children.
YouthLaw Report: Challenging the Barriers

Sept 2016 – Growth Hormone Access

Pharmac advised their Endocrinology Subcommittee recommended access for funded GHT is widened to include children with PWS from 6 months old and the requirement for slow growth be removed, but felt there was insufficient evidence to extend treatment to 18 years. The recommendation went to PTAC in November to endorse or decline. When approved by PTAC, it required funding approval and we made another submission regarding funding priority. Having voiced concerns regarding timeframes and our disappointment regarding some decisions, Pharmac agreed to a meeting. We also met with NZORD rare disease advocates to see how they can help.
PWSA(NZ) Submission to PHARMAC – Dec 2015

Dec 2015 – Education Action – Education for All

In November 2015 we consulted with members on key educational issues affecting our children with PWS. We took those concerns to a meeting with IHC advocates, Education for All and other disability support groups. Following this first meeting, issues raised and possible solutions discussed were to be taken to further meetings with main bodies in the education sector and then to the MoE. We also made a submission to the update of the 1989 Education Act.
PWSA(NZ) Submission – Education Act Update

Sept 2015 – Education Action – Select Committee Inquiry

We submitted a response to the Education and Science Select Committee’s Inquiry into the Identification and Support for Students with the Significant Challenges of Dyslexia, Dyspraxia and Autism Spectrum Disorders. The inquiry report was vaguely promising, but many areas of concern remained.
PWSA(NZ) Submission to the Select Committee Inquiry