NZDSA Declaration

UN+ HEARD

LETTER TO THE READER CONTENTS

You hold in your hands a “NZDSA Declaration”. This document embodies the beliefs of vibrant young New Zealanders with Down syndrome on two public policy areas. Through community discussion and debate, young New Zealanders with Down syndrome came together to give their view on a better more equitable New Zealand.

It is their challenge to the leaders of today. The goal of the collaboration between NZDSA and UN Youth is to channel the youth voice and to continue the dialogue between youth and decision-makers. All too often, youth are portrayed in the media as apathetic and unaware. If only they are given a chance to learn and contribute, you will be amazed by the insights and opinions they hold.

The NZDSA Declaration is a result of a collaboration between UN Youth New Zealand and the New Zealand Down Syndrome Association STRIVE leadership group in March 2013. The collaboration sought to ensure more New Zealanders are provided with the opportunity to have their say on issues that directly affect them.

UN Youth New Zealand (UN Youth) is an education NGO run by youth, for youth, that works to educate young New Zealanders about the United Nations. UN Youth inspires and prepares new generations of talented Kiwis to uphold New Zealand’s reputation as a leader in the global community and engage as local and global citizens.

The mission of the New Zealand Down Syndrome Association is “to promote the participation of people with Down syndrome in their community”. Through this Declaration, young people with Down syndrome are empowered to have their say on issues in their community.

For more information on the NZDSA Declaration, you can contact national.coordinator@nzdsa.org.nz or education@unyouth.org.nz.

“A society that cuts itself off from its youth severs its lifeline.”

– Former UN Secretary-General, Kofi Annan

The NZDSA Declaration creates a forum for participation and aims to demonstrate that young people with Down syndrome are conscious and informed individuals. Youth are often said to be the “leaders of tomorrow” but that does not mean they have no role to play in today’s society. It is important that youth are included in the decisions that will affect them for decades to come.

We hope that you will value and respect what is contained in these pages. By reading this document and using it to inform your decision making, you are contributing to the empowerment of young people in New Zealand.

The voice of young people holds immense power and is incredibly important to the development of society. It is now up to you give effect to it in order to create a stronger and brighter New Zealand.

MATAURANGA EDUCATION

1. We believe in inclusion where we get to choose our own school and can be included in the mainstream.

2. Thank you for making mainstream schools but we need more inclusion.

3. We believe we have the right to education free from violence, bullying, harassment and abuse. We recommend having an action plan to follow if we are bullied.

4. We believe that everyone needs to understand what it is like for us. We recommend training for understanding, attitudes and support for teachers, students and the wider public.

5. We believe that all students need individual students-needs support to access and participate in the curriculum and to learn. We recommend circles of support as well as more funding of resources and learning support.

6. We believe we need support to transition to school and to work and to understand appropriate relationships. We recommend training and teachers for students with disabilities to learn about these.

OUR EXPERIENCES

I got bullied at school. This was at primary school. I got called handicapped. It was a bit rough time I had someone slap my face. I had other problems like someone slapped my face and then pinched my lunch and being called handicapped and I couldn’t do anything about it. My sister and my brother got bullied at primary school too because of me. They tried to get the principal to do something but that didn’t happen.

I enjoyed going to school, and I was always in classes with other students my own age. I often had a teacher aide who would work alongside me and help me to learn. My parents thought that it would have helped me to have a teacher aide more regularly. There were some things that I did well at and something’s that I had to work hard to learn, overall most teachers understood that I learned differently but some teachers expected me to do things that I could not do.

I had a good experience at school. I was pleased to be mainstreamed. I found some work easy and other work difficult and then it helped to have a teacher-aide.

I think parents need more information especially when their child goes to college. I believe inclusion is important and that students with Down syndrome can be mainstreamed. I think that teachers need to understand people with Down syndrome. Teachers need more training so that they know how people with Down syndrome learn.

HAUORA HEALTH OUR EXPERIENCES

1. We believe everyone has the same right to health care.

2. We believe practitioners should give more time/ guidance to lessen people with disabilities’ fear and nervousness of procedures before undertaking them.

3. We believe the Ministry of Health needs to be more accountable for implementing the UN Convention on the Rights of Persons with Disabilities

4. We recommend further workshops on health to tease out our issues.

5. We recommend all hospitals institute a ‘Hospital Passport’ approach to healthcare.

6. We recommend wait times at Accident and Emergency and for surgery are drastically reduced.

7. We recommend that prescriptions to people with disabilities be monitored better to see that they are non-toxic and appropriate.

Usually health professional help me but sometimes they don’t listen to me. Sometimes they explain things in way that makes it difficult to understand so it is hard to answer their questions.

I think health professionals need training on how to ask questions, how to show respect and how to listen.

I think people with Down syndrome should receive more training about a healthy lifestyle- what to eat and what not to eat and why exercise is important.

I constantly had to be aware of Pneumonia when I became unwell this could happen extremely fast over a day often admissions to hospital and parents taking time off work put extra stress on the family. Constant pneumonia every year not good for lungs. Good most times Dr/ nurseing care excellent but occasionally Dr/ nurses not listening to my parents

As for my health, I am very lucky having only once having an operation as a three week old baby. I ride my bike everywhere and keep up my exercise along with kapa haka dancing. It’s great. For so many years I have had check ups annually with the doctor. The medical staff who work at the medical centre have been very caring and supportive, and they have enjoyed my company.