NZORD Newsletter 2010 #2 - 30 March 2010

Hello everyone,

In this issue:
1 - Legal analysis of Human Rights Tribunal decision on carer payments. What is Crown Law's approach?
2 - Broadcasting Standards Authority lets TVNZ off the hook despite very poor reporting.
3 - NZORD pursues folic acid issue to Regulations Review Committee of Parliament.
4 - Rare Diseases Day swamped by Tsunami alert.
5 - Research study on undiagnosed conditions.

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1 - Legal analysis of Human Rights Tribunal decision on carer payments. What is Crown Law's approach?
Our January 2010 newsletter reported on the Tribunal's decision and the move by government to appeal to the High Court. To assist in understanding what is going on, and what options there are for the carer movement in New Zealand to respond to this, NZORD commissioned a report on the Tribunal's decision. You can read the report in this PDF file. In coming months Carers New Zealand will be taking initiatives to lead a campaign for recognition of the work of family carers, asking government to withdraw the appeal and proceed with implementation of the Carers Strategy.

2 - Broadcasting Standards Authority lets TVNZ off the hook despite very poor reporting.
If you followed last year's debate on folic acid fortification of bread, you will be well aware of the public anxiety and concern generated by the way the issues were presented in the media. NZORD complained to the BSA that TVNZ, the worst offender amongst generally very poor media coverage of the issue, breached standards requiring balance, fairness and accuracy, as well as a duty to ensure programmes are not presented in such a way as to cause panic or unwarranted alarm or undue distress. NZORD is very surprised to receive a ruling from the BSA that the coverage by TVNZ does not breach the broadcasting standards. We think the evidence was very clear. However we do not have the resources to seek judicial review of their decision - a step we would certainly have taken if we had the means.

3 - NZORD pursues folic acid issue to Regulations Review Committee of Parliament.
Being let down by media coverage and an obtuse ruling from the Broadcasting Standards Authority is one thing. Having the folic acid fortification programme cancelled by what we consider improper use of the Food Safety Minister's authority is another thing entirely. Vulnerable babies need protection of their health. Postponement of the food standard requiring the addition of folic acid to bread will result in the equivalent of about a classroom full of dead or disabled babies over the next 2 and a half years. NZORD has complained to the Regulations Review Committee of Parliament, arguing the Minister's decision was not in line with her powers and duties under the Food Act. We expect the committee will report back to Parliament some time in May 2010.

4 - Rare Diseases Day swamped by Tsunami alert.
A successful start to the first celebration of International Rare Diseases Day in New Zealand, with support from the Vodafone Warriors, quickly became a victim of the Pacific Tsunami alert on the day, and all media coverage was diverted. Despite this, we are pleased with responses to the publicity material sent out prior to the day. We plan to promote the event again next year.

5 - Research study on undiagnosed conditions.
The National Human Genome Research Institute at the National Institutes of Health in the United States is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition. This is an international research project and any New Zealanders with an interest in this topic are offered the chance to participate. Click here for more details.

Regards, John

John Forman
Executive Director