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GENETICS ALLIANCE AUSTRALIA SURVEY
Genetic Alliance Australia (GA) invites you to be involved in a project which is the first of its kind in Australia.
The project launched by GA is called “Australian patients and families’ perspectives on genome sequencing”. The aim of the project is to produce an “Australian Patient Charter on Genome Sequencing”. This will outline the views and opinions of patients and families regarding genome sequencing in the healthcare system. This will become an important reference guideline for policy and decision-makers when incorporating genome sequencing into the Australian healthcare system.
The project will involve an anonymous online survey for individuals and families affected by genetic conditions, and aims to gather their views and opinions on the use of genome sequencing in a clinical setting. The online survey was launched on 6thMay 2016 and will run for approximately two months. By participating in the survey you will have access to a video “Whole Genome Sequencing & You” which will serve as an excellent education resource for our families. For more information and to participate in the survey, please click here.
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BEING A PARENT AND BECOMING A CHIEF
By Cathy Love
As an occupational therapist I have worked with thousands of parents, yes I have been busy for decades and have seen much change. I adore my work and continue to learn a fortune listening to parent’s stories, joys and challenges. I am also a professionally trained coach, so my work is a bit different nowadays. I believe that I can nearly always achieve more for children with disabilities by working with their mums and dads than I can by providing therapy to the child. An interesting discussion topic, but I see parents needing to be way more informed, managerial and assertive than ever before. Such ‘parenting on steroids’, as one dad described to me, will be the way of the NDIA future and a skill set that not all embrace with comfort and confidence. But it can be done.
Experience and parent conversation suggest that it is helpful for parents to
- Get connected with others and stay informed
- Stay super organised with paperwork, time and tasks and use technology to the max
- Own their information and share it wisely and with consent
- Set goals they want their child to work towards
- Understand the systems and services
- Recruit and manage the strongest team possible around their child
- Insist on team wide communications, measurement of progress and accountability
- Celebrate progress wildly
- Look after themselves as well as they can
To serve this belief I wrote a book.
‘Becoming Chief, how to lead your child’s special needs tribe’ has been described as an essential guide to empower parents. It sits on the shoulders of the awesome parents I have worked with. It is written in an energetic coaching voice to encourage parents to politely step forward, rightfully claim their expert role and lead their child’s team towards positive outcomes. It is full of parent wisdom and practical tips. It is an easy read and use, there are notes pages for scribbling, ideas and actions.
SWAN has one copy to give away as a lucky draw prize at our upcoming Post Mother's Day Mingle Evening, Friday 3 June.
If you would like to find out more about "Becoming a Chief" then please contact Cathy E: Cathy@nacre.com.au. http://www.nacre.com.au/my-book/ Books retail at $24.95 with free postage Australia wide.
Ed's Note: Thanks for sharing your expertise with us Cathy.
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