NZORD Newsletter 2013 #7 - 14 November 2013

Hello everyone,

In this issue, opportunities to contribute to research projects and surveys.
1 – Ministry of Health review of Carer Support Subsidy.
2 – Research on the experience of raising a child with an undiagnosed medical condition.
3 – Help recruit participants to the State of Caregiving study.
************************************************************************
1 – Ministry of Health review of Carer Support Subsidy
As part of a review of the adequacy and flexibility of the Carer Support Subsidy, the Ministry of Health is seeking the views of unpaid carers of people with disability who currently receive the CSS. The Ministry wants to better understand how carers use the subsidy, how it might be supplemented, and the difference the subsidy makes to a carer. This is a high level review with KPMG leading the work.

CSS is such an important help for carers. NZORD and the Carers Alliance have lobbied hard for many years to get this review, which is starting with the support subsidy funded through the Ministry’s Disability Directorate. We strongly encourage all those with an interest in this subsidy to take 10 minutes to complete this survey. The survey can be accessed here and closes on 20th December 2013.

2 – Research on the experience of raising a child with an undiagnosed medical condition.
"Living with uncertainty: The role of hope, social support and illness cognition in raising a child with an undiagnosed medical condition" is a study to gain insight into the unmet needs of parents with the goal of improving coping resources and support available to them. Individuals who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are invited to participate.

This study is being conducted by a Masters of Genetic Counselling student from Griffith University, Brisbane. They survey can be accessed here and will take approximately 30 minutes to complete. It is open until the end of November 2013.

3 – Help recruit participants to the State of Caregiving study.
This study is recruiting family carers to complete New Zealand's first in-depth longitudinal study, being developed by Carers New Zealand in partnership with the University of Auckland's Faculty of Medical and Health Sciences. The State of Caregiving Study will explore responses from hundreds of carers across age groups and caring situations (and track their feedback over time) to provide a long-term view about how carers are faring, their physical and mental wellbeing, ability to save for retirement, and more.

The research findings will be shared with community organisations, government agencies, and via public messaging across society. Currently NZ is very reliant on international caregiving research to inform decision-making for carers in NZ. This study can help to improve the knowledge base about the NZ situation. The survey can be accessed here and takes about 25 minutes to complete. It will be open until the end of January 2014.

Regards, john

John Forman
Executive Director