The mother a little boy with Down syndrome was shocked to receive a copy of the notification of his birth in the post. NSW Health collects and publishes statistics on the numbers of babies born in NSW with a number of conditions (including Down syndrome).
Glenda Graban recognises the need to collect information in order to plan services, but she is lobbying for a change to the name of the register (currently called the Birth Defects Register) and to ensure that parents do not receive their copy of the notification unexpectedly in the mail. Her story is told by the Macarthur Chronicle here.
Down Syndrome NSW understands that most parents are not notified in this way, and joins Glenda Graban in calling for NSW Health to make sure that it does not. The national staticstics, collated by the Australian Institute for Health and Welfare, are published as the "Congenital Anomalies" report. We are interested in suggestions for a new name for the register, to take to NSW Health - should it be brought into line with the national report, for excample? Or can we do much better than that? Email info@dsansw.org.au with your thoughts.
2 comments:
My son is 16 y o, was born in NSW and has Down Syndrome. He was born with Heart Defects. He can't speak in a manner which those not close to him can understand. Sounds like defective to me. He can sometimes write his name. Looks like defective to me. His toilet training is less than 100%. Smells like defective to me. If he is on a defect register, great.
As a person he is Mr Bubbly Personality. He has many normal teenage boy behaviours, is kind to small children, will do what he can to right a wrong and enjoys music.
Compared with his peers such as his siblings he is defective in his abilities of daily living, but not less of a person.
How can you people possibly think that the name of a database was deliberately chosen to personally offend? I think you are a bunch of narcissistic over-sensitive namby-pambys.
Why do you think this name makes things hard for service delivery people? I don't understand you.
Change the quality and nature of services, not the names!
Graham
Dear Graham,
Okay so I'm a namby pamby, and you call your son defective, what a nice man you must be.
Instead of insulting someone you have never met, why don't you get off your butt and try to improve the services also that you are talking about in your blog.
I want to change the name and change the quality of services for my son ALSO, and I'm giving it a go!
I don't have to be like you do I.
I can be different and want more for my son.
Good luck to you Sir in whatever you choose to do your future.
And good luck to your son, I wish him all the best.
Glenda
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