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THE POWER OF PARENTS IN THE PROCESS: RAISE YOUR VOICES

Posted Mar 11 2009 3:11pm

THE TIME IS NOW. The little group under the tree at the Newborn Hearing Screening International Conference 2008 took the oath to try to make a difference in improving parental support on a global level. Now we are requesting your help.
PLEASE TAKE TEN MINUTES TO COMPLETE THIS SURVEY:

http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

PURPOSE OF SURVEY
The results will be used to produce formal recommendations for Best Practice in Family Support and will be presented at NHS 2010 in Como, Italy – the final international conference on newborn hearing screening.

WHO IS COLLECTING THIS INFORMATION?
The survey is being undertaken by GPOD – a Global Coalition of Parents of children who are deaf or hard of hearing - which was formed at NHS 2008 with the goal of "promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world."

This survey will be distributed all over the globe- Australia, UK, USA...to be translated in Italian *smile*, etc. In one day, after presenting the survey to the parents of the Pediatric Cochlear Implant Circle, we have received over 100 responses. We are only just beginning. The more information you supply- for example there is a section where you can tell your story- the better our Recommended Guidelines document will be.

Here are some responses that the survey has generated thus far:

... It is very important that parents are supported in the choices they make for their children, by both educators, other parents and their extended families. As a parent you have to be well informed about your choice of communication with your child and you have to believe in what you are doing and trying to achieve. Our son is profoundly deaf (bilateral), communicates through Auslan (initially signed English), speaks all the time as well and has excellent writing skills. He has just commenced a degree at university! We are very, very proud of him and all he has achieved.

...Big difference between diagnosis of unilateral loss compared to bilateral loss in regards to all aspects of care ie. support, information, appts, early intervention - everything!

...Big difference between diagnosis of unilateral loss compared to bilateral loss in regards to all aspects of care ie. support, information, appts, early intervention - everything!

Please, please raise your voices and take ten minutes of your time to complete the survey. We really are at the right place at the right time to smack the system in the ass.

*Smile*

Thank you...
GPOD - (Global Coalition of Parents of Children who are Deaf or Hard of Hearing)

PS. I'm kicking off Parental Support week here on the blog, don't think it exists, but it's starting now...
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