NZDSA national achievement awards
WHY THE NZDSA WORK MATTERS By Coen Lammers
As the New Zealand Down Syndrome Association is heading into its 40th year, an effective and strong representation of the Down syndrome community is getting more important with each year. The NZDSA was founded in 1981, initially to support parents caring for a person with Down syndrome, but over the years this role has expanded rapidly to become a multi-faceted support and advocacy organisation. The volunteers and part-time staff that keep the wheels of the NZDSA turning are now recognised as key stakeholders in the most crucial discussions and decisions impacting on
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our community at a national and international level. “We are recognised as an important parent organisation and a significant part of our work now involves stakeholder meetings that involve policy change and advocacy at Government level,” says Zandra Vaccarino, the National Executive Officer of the NZDSA. Zandra, President Kim Porthouse and other members of the National Committee are in regular contact with the organisations that play a vital role in the lives of people with Down syndrome, like the Ministries of Health, Education, Disabilities, and Social Development. “In some cases, we just keep advocating for years until they start listening to us,” says Zandra, who has been the face of the NZDSA at Government forums for the past 16 years. The NZDSA also has a long representation on the National Screening Unit to discuss the practical and ethical challenges around increased screening for Down syndrome, while Zandra also works with Human Rights Commission, the Health and Disability Commission and the Disability Transformation Steering group. STRIVE self-advocate Andrew Oswin and committee member Averill Glew also represent a s t ro n g N Z D S A vo i c e i n t h e D i s a b i l i t y Consumer Consortium, which represents all key stakeholders in the disability sector. “The NZDSA has a big voice in all these advisory and decision-making bodies, but it is vital that we represent everyone in our community. We
