Monday, April 13, 2009

For the Record: NAD=ENS Has Still not Responded

NAD = ENS in Italy
AgBell = FIADDA in Italy

If you have been following this blog and what has been going on in my Italian Newborn Hearing Screening Saga, then you know that I have met with the President of the Italian Pediatric Federation and he has approved an initiative regarding the screening at a National level.

Three weeks ago, I wrote a letter asking for support from both the ENS and the FIADDA.

The FIADDA replied immediately and offered any assistance I could possibly need in carrying out this awareness campaign.

The president of the ENS has still not responded.

My purpose in creating this campaign is to identify areas of weakness in Pediatricians' knowledge of the screening and issues in deafness. Obviously, communication methodologies would be one aspect that would need to be addressed. My job is to provide unbiased resources within this campaign. Why did I even contact ENS? Because after a year and a half of blogging and listening to all of the readers' opinions, I knew that such an organization existed and how important it is to provide unbiased, objective resources for parents...starting with the pediatricians who assist them.

Ironically, in an Italian blog post, the president of ENS left this comment referring to the Italian Premier:
(translated in English)
We have written on many occasions to request a meeting as a Federation of the Historical Associations and ENS, which in Italy represents 4 million disabled, but Berlusconi until now has been the true deaf person on the national political scene considering he has never responded. And they say he is a Man of great feeling and sensitivity...

Ida Collu
Presidente Nazionale ENS


I can understand her frustration. Just think, she is the PRESIDENT of an organization and never received a reply.

I'm just the mother of a Deaf child.



Anonymous said...

Not "Just" the mother of a deaf child!

Don't devalue yourself, Jodi!


Der Sankt said...

Actually, a mother is far more important than President...

You see, being president is just a temporary job.

Being a mom is a lifelong experience.

Anonymous said...

Jodi, this is to let you know that ENS does not recognize the progress made during the past 20 years or so to cope with the needs of deaf people in Italy. It is basically a political entity with one single aim: to maintain its power (= the 4 millions deaf people they claim are representing).

Unknown said...

Der Sankt and Lucky...THAT is my point *smile*

Hi! One would hope that an organization that represents Deaf families would support an initiative promoting the Newborn Hearing Screening in the year 2009. I'm still waiting...Actually, I find the whole thing strange.

Anonymous said...

I wanted to add a few imporatant issues about your post. The Italian Prime Minister Berlusconi is probably well informed about ENS. To be VERY specific, ENS is NOT in favor of newborn hearing screening. Never advocated for it. Instead, an official position of the Ministry of Health is going to promote newborn hearing screening. This explains also why in a relatively "short" time a number of "Regioni" (Campania, Tuscany, Umbria, to name a few) are beginning to legiferate in favor of NHS.

Unknown said...

Hopefully this: To be VERY specific, ENS is NOT in favor of newborn hearing screening. Never advocated for it.

Will evolve, based on this:
Instead, an official position of the Ministry of Health is going to promote newborn hearing screening.

In any case, these are exciting times when we have the potential to truly have an impact on the screening at a national level.
*'bout time*

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